The MS Show: Recent Episodes
Bron Webster - diagnosed 1996, mum with MS, expert MS patient and still mob
A podcast for people living with MS (Multiple Sclerosis) ... MS stories, MS news, and coming to know you’re not the only one. Whether you're newly diagnosed with MS, a fully-fledged person with disabilities or want to find out more about this chronic, neurological illness, this show's for you. Hear from experts, influencers and patients (mainly UK-based).
In this episode of the MS Show Bron once again talks to Maddy Baxter.
Maddy was only diagnosed with MS relatively recently and talks candidly about her diagnosis journey, her reactions to it and how she is now contemplating a post-diagnosis future for herself and her husband.
The topics discussed are around coming to terms with the illness, what that might mean for her working life and how she is learning to put her own health and wellness first without feeling guilty.
Bron and Maddy also consider what it feels like to live with the uncertainty brought by MS and the need to focus on planning for what is really important going forward and the concept of breaking down things into smaller more manageable steps.
Maddy and Bron also discuss the benefit of maintaining a sense of humour to help you through the difficult times.
Please share this episode with others who may find it useful.
Get in Touch with the show:
Email the show: hello@multiplesuccess.co.uk
Find Bron on social media using these handles:
Bron Webster
Multiple Success
There's a website too: https://www.multiplesuccess.co.uk
and a friendly and helpful Facebook group for people impacted by Multiple Sclerosis. Ask to join the group by answering the questions here: https://www.facebook.com/groups/multiplesclerosisukhelpmultiplesuccesscommunity
© Bron Webster 2021
In this episode Bron continues to talk to Roger Cook, but also 2 other guests - Rachael Tomlinson and Martin Baum.
Roger Cook, was diagnosed early in his working career and is now effectively retired on medical grounds but volunteers with the MS Society and as an expert patient. Martin is a published author and Blogger in the MS community. Rachael is also an MS Blogger having had to leave conventional employment in the NHS.
Bron Continues the discussion topics around retirement with MS, ill health retirement and changes in life as a consequence. She talks to 3 guests - Roger Cook, who was also a guest on the previous episode (episode 065), Martin Baum who has featured in a previous episode of The MS Show (episode 048), and Rachael Tomlinson who has previously told her diagnosis story (episodes 9 and 910).
The episode includes a useful discussion around making sure you get best advice from people before making any specific decisions about leaving employment - and the various forms that this can take. Rachael talks frankly about what happened to her and how much differently she would handle it if given another opportunity.
Get in Touch:
Email the show: hello@multiplesuccess.co.uk
Find Bron on social media using these handles:
Bron Webster
Multiple Success
There's a website too: https://www.multiplesuccess.co.uk
and a friendly and helpful Facebook group for people impacted by Multiple Sclerosis. Ask to join the group by answering the questions here: https://www.facebook.com/groups/multiplesclerosisukhelpmultiplesuccesscommunity
© Bron Webster 2021
In this episode Bron chats to 2 guests, Roger Cook and Maddy Baxter. Both guests have had to face stopping working in their previous jobs. The discussion centres around how people arrive at retirement decisions or shifts in career direction as they try to combine MS with working. It also considers how you might feel about that decision and how this change can redefine your purpose in life as you prioritise your own wellness.
Roger has been living with his life change for over 15 years whereas Maddy was only diagnosed 6 months ago and her decisions are very immediate as she considers the possibilities of self employment.
Today's guests:
Roger Cook, who was diagnosed early in his working career. After working in industry and attempting to take on a franchise, Roger is now effectively retired on medical grounds but volunteers with the MS Society and as an expert patient.
Maddy Baxter has worked in accountancy at a local authority for 20 years before being diagnosed relatively recently. Maddy is thinking about planning her future and considering what work options might be available if she becomes self-employed.
Get in Touch:
Email the show: hello@multiplesuccess.co.uk
Find Bron on social media using these handles:
Bron Webster
Multiple Success
There's a website too: https://www.multiplesuccess.co.uk
and a friendly and helpful Facebook group for people impacted by Multiple Sclerosis. Ask to join the group by answering the questions here: https://www.facebook.com/groups/multiplesclerosisukhelpmultiplesuccesscommunity
| Bron, who has been living with MS for over 25 years and who gave up full time work as an employee back in 2012, discusses the concept of retirement. What does retirement mean? and what might precipitate the thoughts of retiring for a person with MS? and some of her own thought processes which lead to her own decision to slow down. What might the implications be of such a decision and what might you need to think about with regard to your future life? Email the show: hello@multiplesuccess.co.uk Find Bron on social media using these handles: Bron Webster Multiple Success There's a website too: https://www.multiplesuccess.co.uk and a friendly and helpful Facebook group for people impacted by Multiple Sclerosis. Ask to join by answering the questions here: https://www.facebook.com/groups/multiplesclerosisukhelpmultiplesuccesscommunity | | Copyright: Bron Webster 2021 | | |
Kav Partap was first diagnosed with MS when she was 18 years old following a severe attack. She has gone on to study, become a teacher. She is married with 2 young children and lives in the Caribbean.
Kav writes a blog of her experiences and has also recently completed a book that will be available soon on Amazon.
In this podcast, Kav talks about her experiences of being diagnosed, treatments and living with MS in her Caribbean home.
She discusses her life as a blogger, teacher, mother, and how she has adapted her life to living with MS.
Copyright: Bron Webster 2021
How is the MS International Federation (MSIF) working to help the Multiple Sclerosis community?
Josie Chadband, who works for the charity, gives us her insights and explains how this global effort is raising more funds than ever before, and supporting the MS Atlas, the Progressive MS Alliance and People with MS.
I didn’t realise the MSIF has existed since the sixties, did you? … what else don’t WE know??
As we draw nearer to closing this year's #The50kinMay in a few days time and with World MS Day just around the corner (30 May every year) this is an exciting episode to raise awareness of MS.
.. here's the charity donation page for Bron Webster: https://www.themay50k.com/fundraisers/bronwebster
To contact the podcast email: hello@multiplesuccess.co.uk
To contact the producer and host, Bron Webster, call (UK) 07831 600673
To find out more online / other episodes visit https://www.multiplesuccess.co.uk
Bron discusses the importance of understanding who’s in your MS team and working with or being the team leader.
Copyright: Bron Webster 2021
https://www.multiplesuccess.co.uk/podcasts
Email: hello@multiplesuccess.co.uk
Bron chats with Mark about his Multiple Sclerosis journey from his initial symptoms in his 20’s, through his jobs, his supportive employer, his MS diagnosis, and his eventual acceptance and use of the phrase disabled.
His social media expertise led to him working with the charity shift.ms (https://shift.ms/ ), and he continues to offer motivational speaking - working with various companies and a new initiative - Neurolife Now (https://neurolifenow.org/ )
Listen in as we explore Mark’s positive attitude to his life with MS.
Copyright: Bron Webster 2021
https://www.multiplesuccess.co.uk/podcasts
Email: hello@multiplesuccess.co.uk
As The MS Show moves into its 2nd year, Bron explains some new items, new people and new questions for the podcast.
This is just a quick episode to get an insight as to what is coming next.
For anyone affected by Multiple Sclerosis.
Contact: hello@multiplesuccess.co.uk
Copyright: Bron Webster 2021
Web: https://www.multiplesuccess.co.uk
The 1st Birthday episode featuring Damian Washington - creative, actor, voice-over, ad-maker and all round MS Superstar with his baritone voice.
What's Damian's MS sh!t got real story? It's a tear jerker, for sure.
Want to enter the free prize draw in celebration of our 1st birthday?
You have until 24:00 British Summertime on 29th April 2021 to enter.
The email address for this podcast is below ... but you'll need to listen to the entire episode to find out what extra information and action you need to take.
email: hello@multiplesuccess.co.uk
Copyright: Bron Webster 2021
web: https://www.multiplesuccess.co.uk
FREE PRIZE DRAW RULES:
- Entries must be received by midnight on 29th April 2021.
- Entry to the competition is restricted to one entry per person please.
- Competition is open to UK residents only unless otherwise stated
- Open to UK residents aged 18 or over
- Prizes can only be sent to a valid UK address unless otherwise stated. This will be requested from the winner.
- Winners will be chosen at random from all valid entries.
- Winners will be contacted via email to request postal contact details.
- Multiple Success and The MS Show are compliant with the data protection act. Our policy is such that we will not pass on your details to any third party without your prior consent.
- To take part, send a photo / screenshot by email to the email address: hello@mutiplesuccess.co.uk.
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- The email subject should state Listen into the episode
- The photo needs to show you’ve:
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- Listen into the episode
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- Listen into the episode
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- Automated entries, bulk entries, multiple entries or third party entries will be disqualified!
- The Judges decision is final and no correspondence will be entered into.
- The competition will run from 23rd April 2021 until midnight on 29th April 2021.
- One winner will receive a choice of Apple Homepod Mini or Alexa Echo 4th Gen (to a maximum value of £100)
- Three winners will receive a £20 voucher to be spent at www.amazon.co.uk
- 5 winners will receive free Annual Membership of MS ActionTakers Club (due to launch before 31st December 2021). This prize is transferable to someone with Multiple Sclerosis
Damian Washington can be found at:
https://www.damianwashington.com
#nostressMS
Insta: @damianwashington
YouTube: NoStressMS
Twitter: @deedubs57
In this episode, Bron explores the concept of MS Life Phases (or MS Life stages) in the context of ancient mythology. Specifically, Bron outlines some similarities - the birth, development, combat, demise, burning - shared with the popular mythological creature, the Phoenix.
Bron believes narrating your MS Life can help with processing the understanding and meaning of the phases. This episode offers just one possible approach.
Can you draw any similarities? Would you use a mythological creature to tell your story?
Copyright Bron Webster 2021
www.multiplesuccess.co.uk
Listen while Bron talks about her MS reasons for creating The MS Show podcasts and some of the MS challenges she has faced. Is producing podcasts, when you live with longstanding Multiple Sclerosis, a good idea?
What about the MS fatigue and MS speech difficulties?
Also, some exciting news about the 1st birthday celebration episode coming later in April 2021.
Copyright Bron Webster 2021
https://www.multiplesuccess.co.uk
In this episode of the MS Show, Bron chats with Jon Strum who was a carer for his wife Jean. Jean was diagnosed with a severe and rapidly progressive form of MS which led to her requiring round the clock residential care and ultimately and incredibly sadly, to her early passing.
You will learn about the challenges Jon and Jean faced and the changes that Jon had to make in his own life expectations and directions. You will also hear about Jon’s hosting of his Podcast RealTalk MS and his involvement with the Care Partner Protocol and the importance of early identification of support frameworks for carers.
Copyright Bron Webster 2021
www.multiplesuccess.co.uk
In this episode of the MS show, Bron chats with Jen Wharrier, who met, married and cares for Dave who has severe MS. You will learn about their life together, the challenges they have had and continue to face and the way their relationship has changed over the years. Jen describes her coping systems and networks, her belief in people’s inner strengths and some of the positive aspects of her life such as studying with the Open University.
Copyright Bron Webster 2021
www.multiplesuccess.co.uk
This episode of the MS Show focuses on 2 particular carers and the impacts on their lives of caring for or helping someone with MS. Using their own experiences to draw from, they then go on to discuss what their own needs might be and those of others in similar situations.
Copyright Bron Webster 2021
www.multiplesuccess.co.uk
This episode meets Liz Baum, wife and carer of Martin Baum. It explores Liz’s journey with Martin and the challenges she and Martin have faced. We also learn how Liz copes with her role as a carer and how she and Martin make the best of their lives with MS.
Copyright Bron Webster 2021
www.multiplesuccess.co.uk
This episode introduces the new series of the MS Show which will focus on those caring for people with MS and the impacts this can have on their own lives and futures.
It starts the discussion around what help should be available for carers and some of the research studies undertaken in the MS Carer community.
Copyright Bron Webster 2021
www.multiplesuccess.co.uk
Bron chats with self-proclaimed MS Superhero - Francesca Conate about all things from her diagnosis challenges, through coming to terms with her condition and her life changes. Returning from Japan to her original home in the US. Her attitudes on medication, self-help and self-belief and discovering newly adapted pastimes such as Golf.
Copyright Bron Webster 2021
www.multiplesuccess.co.uk
Hear from the UK’s Strongest Disabled Man, Dave Walsh (aka Sitting Bull).
How many hours does he train? What’s had to change in light of his MS Symptoms?
Dave explains how training has helped him return from the difficult feelings following his diagnosis. An interview full of inspiration.
His MS Mission is not to give in and adapt everything he can to make it doable. “I wish to remain an active strongman and show that just because you may be/become disabled it doesn’t have to stop your end goal, you just need to change the way you get there!”
Dave is on these social media accounts:
https://www.instagram.com/sitting_bull_uk/
https://www.facebook.com/sitting_bull_uk-107655664436435
Copyright: Bron Webster 2021
Website: https://multiplesuccess.co.uk
Meet Martin Baum - He tells it all ... From feeling - he had ‘won’ his ‘don’t talk’ mind games with his MS counsellor then writing acclaimed ‘Yoof-speak’ literature - to discovering mindfulness and getting back to writing MS blogs.
After years spent not accepting his MS lot, Martin reflects on some of his past behaviour towards his wife (now carer) and friends; his changed attitude and his more positive (and humorous) take on life with MS.
You can find Martin at https://www.martinbaum.co.uk
#livelifenotMS
Copyright: Bron Webster 2021
Website: https://multiplesuccess.co.uk
In this episode, Bron explains how her life experiences have shaped her attitudes and life plans.
How her qualifications, participation and interactions in the MS community have enabled her to identify some gaps in current support available for people with MS.
And how her personal experiences of living with 2 chronic illnesses led her to develop a world first's ‘signature’ programme for people with MS.
As we approach the soft launch phase it is possible to get involved by registering at this link before 12th February 2021:
https://multiplesuccess.ac-page.com/exciting-thing-list-data
Copyright: Bron Webster 2021
Website: https://multiplesuccess.co.uk
In this solo episode, Bron is talking about the forthcoming launch of the ground-breaking, possibly the first in the world, interactive course for people living with Multiple Sclerosis.
In your MS life, even when you’ve got all the information you want, got all the chat you need … You might still feel like something is missing in your MS life.
You might still want more from your MS life?
Bron explains the phases in the course, but the rest is confidential.
You can register to be involved in this crucial soft-launch phase here: https://multiplesuccess.ac-page.com/exciting-thing-list-data
Things begin later in February - register now!
In this episode, Bron talks about the benefits of being part of a like-minded community when you’re living with a chronic illness such as Multiple Sclerosis.
Listen in and if you want to get involved in helping Bron with the soft launch of her brand new initiative to take charge of your MS future either email Bron at hello@multiplesuccess.co.uk or click this link: https://multiplesuccess.ac-page.com/Action-takers
Also, take time to respond to the survey at the request of the Government's Disability Unit BEFORE 23rd April 2021:
https://www.gov.uk/government/news/citizen-space-survey-national-strategy-for-disabled-people
Copyright: Bron Webster 2021
Website: www.multiplesuccess.co.uk
In this episode, Bron offers the results of her learning resulting in lots of tips to help make the most of every day with MS. She talks about what happened in her Mind Over MS Experiment, works out why we sometimes sabotage ourselves, explores how we can create positive habits.
She offers her thoughts about approaches to a successful life including ideas from other writers - such as The Slight Edge ( https://amzn.to/2MWcTND ); The Miracle Morning ( https://amzn.to/3i93L3T ), the 7 steps of OMS ( https://amzn.to/39rHtX6 ).
Importantly, how do we form beneficial habits?
Listen in and if you want to register your interest in creating a Daily Method of MS Living, click and register at this link: https://multiplesuccess.ac-page.com/Action-takers
Find out about OMS in previous Episode 013: https://themsshow.libsyn.com/013-multiple-sclerosis-geoff-allix-and-the-overcoming-ms-lifefstyle
Bron has included affiliate links (above) to the 3rd party books she mentions
Copyright: Bron Webster 2021
Website: www.multiplesuccess.co.uk
Bron talks about living with Multiple sclerosis … how we judge ourselves against what we used to be able to do?? How will we ever feel good enough??
Do you have realistic expectations of yourself? Do you know what is good enough?
Cut yourself some slack!
Copyright: Bron Webster 2020
Website: www.mutiplesuccess.co.uk
In this episode Bron discusses a whole range of tools and approaches to handle the frequent challenges faced when living with a chronic illness such as Multiple Sclerosis (MS). Phrases and thought-processes are in abundance to help manage your self-expectations. Whether it’s handling everyday activities, or maybe bigger goals, there are lots of useful tips and ideas to help.
Link for interest in Action Takers Membership Club: https://multiplesuccess.ac-page.com/Action-takers
copyright: Bron Webster 2021
website: https://multiplesuccess.co.uk
How can you stop feeling worthless and find your purpose when you live with Multiple Sclerosis (MS)? Yes, there are lots of changes to contend with, but if you spend time thinking about where you are now, where your priorities lay, and then find meaning in areas you hadn’t yet thought about, you can find what your true purpose is.
copyright: Bron Webster 2020
website: https://multiplesuccess.co.uk
In this latest episode, Bron talks about the importance of thinking positively when you live with MS. Rather than reacting to the first instinct, think more deeply with the aim of balancing negative and positive reactions.
Before you’ve accepted a diagnosis, it’s easy to feel guilty if you can no longer do things. Once you accept the situation, your reason becomes a positive in your outlook on life, as your feelings of guilt lessen.
Ask to download the Gains and losses prompt sheet by following this link: https://multiplesuccess.activehosted.com/f/13
copyright: Bron Webster 2020 website: https://multiplesuccess.co.uk
In this episode Bron talks about her challenge for December 2020 - she is going to make her MS disappear for Christmas (and hopefully just in time for her 50th birthday)
Come along on this short journey to decide whether you will be joining in this year’s challenge.
You can let Bron know you’re interested in joining in by registering at this link:
https://multiplesuccess.activehosted.com/f/37
Bron was diagnosed with MS in 1996 and works to inspire others with MS.
Copyright: Bron Webster 2020
www.multiplesuccess.co.uk
Have you got what you need in your MS life? Do you want more, but can’t work out what it is that you want? Using Maslow’s Hierarchy of Needs, Bron assesses the areas that aren’t readily available to enable progression and reach self actualisation.
MS Action takers are people living with MS who want more.
That ‘more is something Bron is considering in this episode.
To express interest in the work Bron is doing to address gaps and move forward, click here: https://multiplesuccess.activehosted.com/f/25
To join Bron in the Mind over MS Christmas 2020, click here:https://multiplesuccess.activehosted.com/f/37
Copyright: Bron Webster 2020
Maybe I’m going to make a recovery this time?
Maybe that idea of hiking Kilimajaro is not an impossibility?
My mind was working overtime ... We have to be so blo*dy resilient with MS
The false dawns of a life with MS. You live, you experience, you learn ... and your coping toolkit expands.
MSActionTakers click here: https://multiplesuccess.ac-page.com/Action-takers?test=true
copyright: Bron Webster contact: hello@multiplesuccess.co.uk
In this episode, Bron (who produces The MS Show) explores the best Christmas gifts for someone who has Multiple Sclerosis.
Listen in to get some ideas and also some tips to avoid gift gaffs for the person in your life who lives with MS .
Don’t celebrate Christmas? This episode is relevant for any big celebrations.
Copyright Bron Webster 2020 https://multiplesuccess.co.uk
Link for your first Christmas download: https://multiplesuccess.ac-page.com/mind-over-ms-christmas
In this episode, Bron (who produces The MS Show) explores what to do if this is your first Christmas since you were diagnosed with Multiple Sclerosis.
Listen in for some Christmas tips - preparing for Christmas; being around other people at Christmas; thinking about what is best for you.
Don’t celebrate Christmas? This episode is relevant for any big celebrations.
Link for your first Christmas download: https://multiplesuccess.ac-page.com/mind-over-ms-christmas
copyright Bron Webster 2020 https://multiplesuccess.co.uk
In this episode, Bron (who produces The MS Show) explores some ideas to make Christmas easier when you live with Multiple Sclerosis.
Listen in for some Christmas tips - coping with fatigue at Christmas, handling manual dexterity issues, asking for help etc. to encourage you to think about what is best for you.
(PS. Don’t celebrate Christmas? This episode is relevant for any big celebrations.)
Link to get Pt.1 Christmas download: https://multiplesuccess.ac-page.com/mind-over-ms-christmas
copyright: Bron Webster website: www.multiplesuccess.co.uk
In this episode Bron explores the impacts of living with MS when you’re in your 20’s or 30’s.
What's my future going to be? where am I going to live? what does my work look like? how much money can I earn? how much socialising can I do? Can I afford a new car? What car am I going to drive? where do I want to be tomorrow? Can I afford a holiday? Should I relocate to another country with MS? When should I tell someone I’ve got MS? How does MS and dating work? Can I have a sex life with MS? Should I start a family with MS?
This episode is not about telling YOU what is best for YOU. It’s about starting to consider some of the difficulties.
If you want to be kept informed of the ‘Redesign Your MS Life’ Club pop your details on this form: https://multiplesuccess.ac-page.com/Action-takers
copyright: Bron Webster 2020 www.multiplesuccess.co.uk hello@multiplesuccess.co.uk
Amy Cullen came across NIS Treatment shortly before being diagnosed with Multiple Sclerosis in 2017.
In this episode, The MS Show continues this series exploring some of the alternative / complementary therapies that people have found beneficial in their MS life.
Amy and her NIS Practitioner, Guy Blomfield, join Bron in this episode, which explores the Neurological Integration System Treatment that has brought about such benefit to Amy.
Hear about the origins of the treatment and the positive impacts that Guy has witnessed, and that Amy has experienced. In Amy’s words, “ … what you’ve got to gain is your life back to some degree and that, to me, is priceless … “.
Copyright: Bron Webster 2020 www.multiplesuccess.co.uk
Fiona Clark was diagnosed with MS in 2014. She has found and tried alternative ways to manage her symptoms … some proving more effective than others.
She talks about her MS diagnosis, her MS symptoms and her experience with Cannabidiol and Hyperbaric Oxygen Therapy - finding what works and the benefits for different individuals of alternative therapies.
She offers a sensible approach to finding what helps symptoms.
Copyright: Bron Webster 2020
www.multiplesuccess.co.uk
mailto: hello@multiplesuccess.co.uk
If you're an MS Action Taker let Bron know at this link: https://multiplesuccess.activehosted.com/app/forms/25
Linda Elsegood, Founder of the LDN Research Trust, lives with relapsing/remitting MS. She was diagnosed with multiple sclerosis (MS) in August 2000 at the age of 44, and was having attacks every 6 months; it took months for a relapse to recede, only to have another one start. In October 2003 she was told she had secondary progressive MS and there was nothing anyone could do to help her.
She decided to take matters into her own hands, and started Low Dose Naltrexone in December 2003.
Hear Linda tell her Multiple Sclerosis story and discover what is LDN and how can it sometimes help people with MS.
This alternative treatment has eased Linda's MS Symptoms, removed her pain and enabled her to regain her life.
https://ldnresearchtrust.org/about-the-ldn-research-trust
and the link to the forthcoming LDN Book 2 launch tour is: https://ldnresearchtrust.org/ldn-book2
Link to sign up as a MS Action Taker is: https://multiplesuccess.activehosted.com/app/forms/25
Copyright: Bron Webster 2020 www.multiplesuccess.co.uk
If you’re wanting to find out about some of the more complementary therapies and treatments said to help MS this is the episode for you.
Bron introduces the new series which is all about alternative and complementary therapies.
I won’t be getting into whether they are alternative or complementary … I understand that they mean different things. But from my point of view and probably yours, these are therapies that might help.
Hear Bron talk about her experience of APS Therapy, Reiki, Bowen Therapy, Reflexology, Hyperbaric Oxygen Treatment
More information about the treatments can be found at the links below (these links are to the practitioners Bron has used. Where possible she has included the central body for each practice to help you search for local equivalents).
Before the therapy links, if you’re wanting to sign up as a MS Action Taker, here is the link you need:
https://multiplesuccess.activehosted.com/app/forms/25
Action Potential Simulation (APS) Therapy: https://www.painfreepotential.co.uk/
Reiki: https://healingumbrella.co.uk/reiki.html and https://www.reikifed.co.uk/
Bowen Therapy:https://mscentrebedsandnorthants.com/therapies/bowen/ and https://www.bowen-technique.co.uk/
Hyperbaric Oxygen Therapy: https://mscentrebedsandnorthants.com/therapies/ and https://www.hyperbaricoxygentherapy.org.uk/
Reflexology: http://www.findglocal.com/XX/Unknown/204875703323939/Ultimate-Healing-Reflexology
https://www.aor.org.uk/
Action Potential Simulation (APS) Therapy: https://www.painfreepotential.co.uk/
Reiki: https://healingumbrella.co.uk/reiki.html and https://www.reikifed.co.uk/
Bowen Therapy:https://mscentrebedsandnorthants.com/therapies/bowen/ and https://www.bowen-technique.co.uk/
Hyperbaric Oxygen Therapy: https://mscentrebedsandnorthants.com/therapies/ and https://www.hyperbaricoxygentherapy.org.uk/
Reflexology: http://www.findglocal.com/XX/Unknown/204875703323939/Ultimate-Healing-Reflexology
https://www.aor.org.uk/
copyright: Bron Webster 2020 www.multiplesuccess.co.uk
Bron summarises this first series on MS and movement by talking about the importance of keeping moving. She talks about her personal movement journey since the age of 13 (pre-diagnosis) and the different things she has tried.
From weight training, to traditional gym classes and horse-riding. Just what can you do to exercise when you have Multiple Sclerosis? How about exercise during a MS relapse?
Register as a MS Action Taker here: https://multiplesuccess.activehosted.com/app/forms/25
Useful organisations:
https://www.sportability.org.uk/
https://parasport.org.uk/
https://www.mstrust.org.uk/news/views-and-comments/parkrunning-ms
https://www.nhs.uk/live-well/exercise/get-active-with-a-disability/
https://www.alterg.com/products/find-an-alterg
copyright: Bron Webster 2020 Website: www.multiplesuccess.co.uk
Trevor and his wife started the MS Gym in 2017
He talks about NeuroPlasticity - ability to adapt and find other pathways to develop new pathways.
Also uses eye movements and the vestibular system with an emphasis on a ‘brain-out’ (rather than ‘body-in’) approach. It integrates the 3 systems - sensory, integration and motor - to create a nervous system that works well.
Find the ‘Minimum Effective Dose’ for movement - the correct dose for your MS ensuring you don’t overdose or underdose on exercise. Trevor has seen how the community he has built around the MS Gym has helped people, and given support when they face challenging periods.
Visualisation and its benefits there are 2 types: Deliberate Practise - which is for a specific purpose; walk better and Deep Practise - which involves taking the workout beyond completing each rep: connecting with each and every movement: interoception (where we begin to tune into what we are feeling inside our body as we are exercising). Using visualisation helps because the brain cannot differentiate between actually doing the activity and visualising it.
Trevor shares his beliefs around our MS motivation .. hope which is backed up by proof, science, theory and education to enable people to become a student of their MS body. Taking action and responsibility using the tools and resources helps to give back control. To help counteract your prognosis and give you a sense of empowerment back.
Copright: Bron Webster 2020 https://www.multiplesuccess.co.uk
Pt 2
Part of the MS Movement series over 2 episodes. Beth used to be a very competitive sports woman at Cambridge University. A niggling back problem and 3 miscarriages led to her change in lifestyle, priorities and career objectives following the birth of her daughter.
Hear more about the proven benefits of pilates for people with MS. Beth tracked the progress of her clients over a 10 week period and saw the biggest improvement in core strength and balance … and in terms of daily life tasks, walking showed the biggest improvement. This demonstrates the benefits of a structured training programme that is body aware and also pleasant to do.
Experience a couple of simple pilates techniques during this episode and take charge of your own MS future.
www.bethpilates.com
copyright Bron Webster 2020 www.multiplesuccess.co.uk hello@multiplesuccess.co.uk
Pt 1
Part of the MS Movement series over 2 episodes. Beth used to be a very competitive sports woman at Cambridge University. A niggling back problem and 3 miscarriages led to her change in lifestyle, priorities and career objectives following the birth of her daughter.
Hear more about the proven benefits of pilates for people with MS. Beth tracked the progress of her clients over a 10 week period and saw the biggest improvement in core strength and balance … and in terms of daily life tasks, walking showed the biggest improvement. This demonstrates the benefits of a structured training programme that is body aware and also pleasant to do.
Experience a couple of simple pilates techniques during this episode and take charge of your own MS future.
copyright Bron Webster 2020 www.multiplesuccess.co.uk/podcasts hello@multiplesuccess.co.uk
Dom set up his fitness training company in 2008. Prior to this, his mum (who lived with MS) had encountered a massive debilitating relapse. His training to work with people with disabilities came too late to benefit his mum, but Dom felt inspired to share his knowledge with as many people as possible after her death in 2012.
His business has evolved from face-to-face clients of ALL abilities to predominantly disabled clients to wholly online training since the beginning of 2020.
He has a predominance of clients with Multiple Sclerosis - at all stages of their MS journey … from newly diagnosed to MS veteran wheelchair users. He also works with clients with other conditions that make exercising difficult - endometriosis; chronic fatigue, M.E., cancer recovery, Parkinsons, stroke recovery ….
Dom talks about his approaches to training his client and his ways to motivate people who live with progressive illness. He has client testimonials showing improved mobility, overcoming fatigue and weight reduction.
https://www.facebook.com/groups/msnewlydiagnosed
Copyright Bron Webster 2020 https://multiplesuccess.co.uk/podcasts.html
MS ‘Symptoms Short’ Episodes. This one briefly covers MS visual problems … what causes these symptoms and how to handle them. Whether it’s patchy vision, loss of vision, pain behind the eyes or something that affects you only when you’ve got overheated after a workout.
This episode is not a replacement for seeking professional medical help where necessary.
Copyright Bron Webster 2020
website: www.multiplesuccess.co.uk
Facebook Page: Multiple Success - https://www.facebook.com/MultipleSuccessDefyTheParadigm
MS ‘Symptoms Short’ Episodes. This one briefly covers MS sensory problems … what causes these symptoms and how to handle them.
Whether it’s numbness, pins and needles, crawling ants or the sensation of cold water trickling over your skin find out more in this episode.
Copyright: Bron Webster 2020
website: www.multiplesuccess.co.uk
Facebook Page: https://www.facebook.com/MultipleSuccessDefyTheParadigm
MS ‘Symptoms Short’ Episodes. This one briefly covers MS Fatigue … what causes this symptom and the way different types of MS fatigue are classified.
This invisible symptom is the leading cause of unemployment in the MS population so it is not to be underestimated.
It has nothing to do with lack of sleep.
Take 5 minutes to find out more.
The website is https://multiplesuccess.co.uk
The 5-day challenge for newly diagnosed people can be found on the facebook page - https://www.facebook.com/MultipleSuccessDefyTheParadigm
Copyright: Bron Webster 2020 Website: https://multiplesuccess.co.uk
Laura (and team)’s research in animal models of Multiple Sclerosis has revealed some interesting benefits of diet - specifically intermittent fasting.
This research progressed to a small-group human pilot study which produced outcomes akin to the animal study. It identified that intermittent fasting, if done under the observation of a dietician, is safe for people with MS. In this case the approach taken was alternate day fasting.
The improvement in blood markers seen in the animal study which are associated with inflammation, was also evidenced in the human pilot.
Laura is presently involved in a larger scale human study which is exploring caloric-reduced intermittent fasting, similar in approach to the 5:2 approach. Once again this is under the watchful eye of a dietician. The team is looking at the gut microbiome and blood inflammatory markers.
What becomes clear as we talk is the difficulty of conducting research amongst patients who are experiencing MS symptoms. There is clearly a desire on behalf of both the patient and researcher to ensure recovery from a relapse is not prevented. This makes it difficult to identify the degree to which, if any, fasting contributes to the improvement (or maybe the steroid treatment brought about the improvement).
Laura is keen to point out that she doesn’t believe diet can cure MS. Diet is a part of the range of beneficial approaches. You cannot base all your decisions on the stories of others that have no scientific backing.
Epidemiological studies show obesity in children and young adults is associated with an increased risk to develop MS.
www.multiplesuccess.co.uk
Email: hello@multiplesuccess.co.uk
Copyright : Multiple Success 2020
Bron is just beginning to accept she is transitioning from RRMS (relapsing remitting MS) to SPMS (secondary progressive MS).
She shares her repeated feelings of grief and loss of hopes and dreams. What emerges from
Bron’s reflections ‘in the moment’ of the recording of this podcast is a repeated pattern of processes she has been through. Namely:
feel the feeling,
recognise and name the feeling,
take some action (some negative, some positive),
gain control,
adjust mindset
To find out about the forthcoming short book “Take Charge - Take Me SERIOUSLY” visit: https://multiplesuccess.square.site/product/take-charge-playbook/1?cp=true&sa=true&sbp=false&q=false
Website: www.multiplesuccess.co.uk
Email: hello@multiplesuccess.co.uk
Copyright: Multiple Success 2020
After being told she might never walk again Anna sought help … he provoked some questions after just one session … “what if that doctor was wrong?” “what happens if you are the person who can recover from this?” “and what happens if you can’t recover but you could still be an incredible person regardless?”
Award-winning business coach, podcast host and number 1 best-selling author, Anna Parker-Naples shares with Bron some inner strengths and tips that are highly relevant to listeners of the MS show.
You can find more information about Anna at:
https://annaparkernaples.co.uk/
Anna talks about how before she made the mindset shift, she came to realise that when you repeatedly tell yourself the same thing over and over again, that’s what her brain was seeing as a normal thought pattern. She felt bitter and angry, but managed to maintain her humour when talking about her negative thoughts.
She came to realise there is another way to think; that the groove in her mind (neural pathway) could change.
… “the only way I was going to recover was to stop this ridiculous challenger that was constantly in my brain”
Anna brought her friends and family on board as part of the healing strategy. She switched “I’m in agony” to “I’m having a healing day today”. She realised that, after a period of time, this created thinking space.
She realised the possibilities would never have been open to her had she not faced that challenging situation.
...“No matter how dark it is you do have choice about how you think and feel about it.”
Bron asks how to find an NLP Practitioner that is right for you … and Anna provides details of a training company.
“There might be things in your body that cannot change, but you can shift how you think about it and what it means to you … you can change the meaning of a diagnosis … “
We talk about the emotional process of putting something into words … “it’s okay to look backwards if you know that it’s to make you move forwards”. You’re not always ready to shift from how you’re feeling … sometimes it's okay to sit in how you’re feeling. The first step is to recognise that’s how you’re feeling.
Bron chats with Ali Moore (psychotherapist) about acceptance, resilience, and living with your disease.
Recognising your feelings and being kind to yourself, acknowledging that there are always dark days alongside the brighter days are important steps to coping with the unpredictability of MS.
“Acceptance can feel quite passive … but it’s really powerful. Once you get to that point where you say, ‘I’m accountable’ and ‘I’m responsible’”
TRANSCRIPT
This is the MS show podcast, people with multiple sclerosis and their families who want information and inspiration. I'm Bron Webster. I've been living with Ms for over 20 years. I'll be sharing with you tips stories from ways to keep going through them and Hello, and today I'm really, really excited to be with my good friend Ali Moore and Ali is a behavioral therapist, a coach and author and she specializes in the science of self esteem and relationships. She's also a celebrant. So welcome, Allie. It's great to have you today.
Thank you. Good to be here.
So can you tell us a little bit just about your background First of all, and how you got into what it is that you're doing?
Sure. So I like many people have Corporate background originally, and I started off many years ago in the world of HR, but I was always fascinated by people. And so I quickly moved into leadership development and training. And through that I qualified to be a coach. And when I was doing coaching, I absolutely loved it. And I was I was blessed to work for what was at the time quite small company. And you may have heard a bit called Amazon. And I joined them just as they came into the UK. So I was really blessed to have my career, grow with them, and be able to explore this interest in training, development and people. So qualifying as a coach was amazing. But I then went through some life experiences myself and I went through psychotherapy, and it made me realize that there was there was an added extra that I wanted to do. I wanted to be able to give people the support That the therapy process had had really given me. And it really enabled me to work through some of those experiences that I had been through myself. So I went on to train as a therapist, and through that I just really kept my love of people and their stories and what makes people tick. And that's kind of where my love of looking at relationships and self esteem came from. I just believe that if we nurture our self esteem, and we understand where that comes from, it just really underpins everything about the lives that we need and the relationships that that we have. So I've been really blessed to be able to set up my private practice. And I've been in private practice now for four and a half years and do a whole mixture do one to ones or do membership. Yeah, it's it's really varied and that's an absolute necessity. Smee
great stuff. And obviously you're here and we're doing a podcast for the MS show. Now, you yourself don't live with Ms. But you know me, you see how I sort of experience Ms. And over your times have you encountered any health battles and challenges?
For me personally? Um, um, yes. So I am, it isn't on the scale of of, of Ms. As you say I don't have MS myself, I encounter things in two ways. Firstly, I work with quite a few clients who've got long term health conditions, but personally, I have a condition called TMJ which is a nerve problem that kind of starts off around the jaw area but actually can be triggered once you have it by stress and you No and I had days when I really have to manage that it causes quite intense migraine headaches, pain and pain right down my left side. And this was originally caused by some surgery that I had a few years ago. And following that surgery, I spent six months with a walkingstick, which was really unexpected. And that was nothing to do with the actual surgery, but from the process that I went through. So whilst I don't have that experience of a condition like Ms, as I say, I see that with my clients, and I do have a condition that I've really had to kind of take note of and understand that I have my limitations.
Brilliant. Yeah, not brilliant. It's not. It's not a great thing. But what it means is that you absolutely get the challenges that all of the listeners to this podcast, my 10 counter, you've been through that process of coming terms with having an unpredictable condition that just wipes you out. And I just thought right at the top of the conversation, I just think that is a really useful thing to put into context that not only do you help people with all this wonderful therapy that you offer, and all the work that you do about the reconnection movement that I know you're heavily involved in, but you have also personally got experience. So thanks for sharing that with us before we get into things. And so I know that you have been to the Tower of London and that you have had a really big stage talking about self esteem. Yes. So what sort of what sort of things have you been involved in on your self in self esteem in your relationships? Wow.
Yes. So I was asked a couple of ago to be the lead speaker for historical palaces at the Tower of London. And they were celebrating 100 years of boats for women. And I work predominantly with women on their self esteem. So it was a real honor to go along and do the presentation and talk to the audience that was coming to the Tower of London about the concept of self esteem. I've also done various talks at different conferences. I have run my own empowerment days, where we talk to women about what that means to feel empowered, and also hosting a sort of day retreat that I run called find your role which is all about inviting women to come along and understand what it means to have a nurture that self esteem. So I've had loads of opportunities, as well as being a published author, which was a which was lovely thing to happen. And my book was published Just over 18 months ago,
and what's the name of the book Ali?
it's called reconnect your life. And it's, um, it's a mixture of client stories. It's a mixture of Theory and Applications and mindful living. And it's also a 30 day journaling process to help you to also get reconnected to who you are and help sort of lift that feeling of self esteem within.
Okay, and then I've got a copy of that book. I haven't done the 30 day journaling. I will I'm a man. But, but there are some really, really important and useful sections in there that I've read. And something that I'm really keen on in terms of living with multiple sclerosis is the whole process that I've been through of grieving, and I happen to find myself Again, and reach that point of accepting my condition. And it's really difficult I find, to put acceptance to explain what it is and how it feels. And I just wonder, because I know you've got a whole section in your book about acceptance. I know with Ms. accepting that we've got ms or we've got a disability. It's not easy. And I just wondered if you could share your wisdom.
I will, I will try. So the concept of acceptance has been huge for me in terms of understanding my own journey of personal development and dealing with the things that I've experienced. And also watching how my clients go through that process. And it forms one of the key tenants, I just feel that acceptance as as a concept is one of the most important pieces of the puzzle that people go through. So I can remember when I was first kind of bringing the concept of mindful living, which is a big part of how I work with clients into my practice alongside the traditional therapy, and talking therapy, and feeling like acceptance at the time, to me sounded a bit passive, it sounded as though we just kind of were expected to put up with something. And it was just how it was. And that felt to me a bit like you were being asked to give in, you know, and give up wrong and, you know, we talked about moving forward, don't wait, you know, and, and it was only when I started this and in the research that I've also done in terms of how people come to terms with relationships, and thing with their own sense of self discovery that acceptance is actually really powerful. So acceptance is all about understanding that what has happened has happened and it can't unhappen. But that because you've made that choice to say, this is where I am. And you've also started to take on board that you are accountable and responsible for yourself, as opposed to blaming everyone else or blaming the world, you know, carrying Angus through with you that once you get to that point that says, actually, I'm accountable, and I'm responsible, and this is where I am and this is what's happened. Suddenly, I saw clients starting to see possibilities. And it happens quite quietly. I've done talks on this where I've said, you know, I've never yet had a client walk into a The therapy room and go, Oh, my goodness, Sally, I've got it, you know, it's all become clear. And the process of acceptance has happened over a period of time. And it's just little things in the language where initially, there might be blame for something else. They might be blaming the situation, other people, the world. And all and they don't see that they've got any options. They don't see that they've got choice, or they don't feel like they're worthy, or they don't feel like they've got that ability. And then suddenly, they start to use phrases like, well, maybe. Well, maybe I could have a go. Well, you Yeah, that might be a good point. Well, I could look at it differently. Well, what if and I think when you see people moving into that space, you kind of realize that they're starting on that journey of acceptance, they're starting to see that they can choose now how they live with whatever it is going forward.
Are you choosing how to live life going forward, did you know that I run a private Facebook group of people with multiple sclerosis and their families, it's called multiple sclerosis and UK help multiple success community. It's the perfect place to hang out and get more SMS inspiration and motivation. All you need to do is look in Facebook, multiple sclerosis and UK help multiple success communities. I'll see you back.
Absolutely. And I think some of the people that I talk with whether it be online conversations, I really say to them Ultimately you are in a system where you are going to have a neurologist, and you're going to have an MS nurse, and you're going to have a group of people around you. But this is your disease, and this is your body. And actually, you don't need to wait for those people to come to you with any of the answers or any of the next steps. Try and it comes back to what you were just saying about not. It's not so much blaming other people, although I'm sure there's a lot of kinds of feelings of blame that go on. But I say to people, don't wait for these other people. They're not responsible for action, and they're not responsible for whatever's going to happen. So try and take a little bit of ownership and see what you can do for yourself. Yes. And so is that partway along the acceptance path when you start taking that responsibility,
definitely because people can become quite passive and they can put themselves right in the hands of everyone else. And they can leave it up to other people to make their decisions for them, because perhaps they feel they don't have the knowledge themselves. They're not the expert, and it can feel as though things are being done to us. But as humans, we like to be in control. You know, I have never met a client as yet, who would completely like to hand over the reins to somebody else, there is always an element of wanting to be in control. And when you realize that, no, you may not be the expert in this particular disease, you know, from a medical perspective, but you are the expert in terms of how you feel and your body and you realize that actually, you can be the person who guides the people around and they stop being people who are doing things to you. And they start being people who are there to support you in the decisions you want to make. That that is, yeah, that is a huge part of seeing that people are moving into that sign of acceptance.
And I think what you've just said about seeing them and working with them in a different way. Yeah, that is a really positive thing for people to take away. Because I do hear people say, you know, things ground to a halt or I wasn't being given all the information. And it's about creating a bit of a team spirit with your professionals, and keeping your own interests and your desires in mind. Yes, yeah. And also what happens With multiple sclerosis for many people, not everybody, you go through life you have a diagnosis and your diagnosis is this is one of my personal hobbyhorses. But your diagnosis is one where you are faced with a progressive neurological condition. Yeah. which in itself is a massive. They're really big words to hear. And dealing with that is huge. But the way that the disease progresses is different for everybody, but people will tend to think, oh, I've just got messed up, right. Okay, I know what's going on. And I know how to expect everything that's happening in my life and I know that my left sides really weak. So they make adjustments for that. But Ms being what it is. It just then for whatever reason, decides It's going to throw another curveball at you and hit you with another set of symptoms that you've never ever encountered. And so I've sort of come to the realization that with MS, we end up going through this process of grieving, not just at the point of diagnosis, but on an ongoing basis as things happen time and time again. Yeah. And I just wanted to sort of, I guess, kick that around a little bit with you
to see
how that fits into the whole landscape of our belief in ourselves and our connection with ourselves, etc. So,
I think that I think that's a huge thing. And I know you and I have chatted about this before because we use this analogy of grief don't mean and I think there is a grieving for the person that you felt that you were before. The diagnosis or for many of my clients before the incident happened, you know, there was that me before. And then whatever it is happens. But in certain situations, the situation is now as it is and it doesn't change. So we hear this phrase used a lot, the new normal.
And
you can be in a situation where something awful has happened and you're grieving for that and you're grieving for the person you were. But you are now in a pretty stable landscape all by it, not one that you wanted to be in. But you are able to kind of come to terms and think what is this new normal, but with something like Ms. As you say that it's like you're standing on shifting sands, isn't it because you're always moving. And so that grief cycle that we talked about, in general terms of denial and anger, And acceptance, you know is included within that grief cycle is is not linear anyway, for most people, but certainly, this is something where you're constantly having to readjust who you are and you're constantly potentially feeling an impact on your sense of identity, your sense of self and I talk about self esteem as being a platform, you know, and it's held up by pillars like self worth, self confidence, how much you value yourself, your social identity, how other people see you. And when those are all lovely and solid and cemented into the ground, you have this wonderful platform on which to be the person that you that you want to be. But when they get knocked and chopped, and they become wobbly, we start to lose confidence in ourselves and we start to doubt yourself. And there is this complexity when you are faced with something thing which is forever changing, which suddenly comes out of the blue and knocks you for six again, about how do you ever find that stable footing? How do you ever find the identity of the person that you are now? Because it's it's constantly changing? And it's Yeah, it's it's a real challenge and and quite different, I think to people who have gone through an incident awful as it was, but are now faced with adjusting to life afterwards.
So I think it's an extra, it makes it extra difficult, and I think anybody that lives with this sort of condition. I think it's just another reason that you can say to yourself, this is how bloody strong I am. Actually, yes, I'm doing this. And I'm dealing with this. And if you hit those new experiences, and those new Hard times, you know, from your past experience, I guess that you can get through this.
Yes.
It might be difficult. Yeah.
What were you going to say? I
think that's really important is to keep track of your achievements.
And that might sound corny, but to keep track of those achievements so that when something new occurs, you do have that to fall back on. You can look back and say, Well, look, this happened. And I and I got through it this way. And then that happened. And I got through it this way, and start to build up that bank of tools that will allow you to think about how you're going to apply those tools. Almost I guess it acceptance comes into play again here. It's almost like the acceptance that something else is most likely going to happen. Right? Yeah. But if I'm okay in accepting that, then in a way I can prepare myself, so it's not constantly coming out of the blue.
Yeah. And I think that's probably what I've reached. So hard as that new. I had a new symptom hit me that I'd never had. Yeah. And so it hit me and I went through the whole couple of days of, wow, what is this? How am I going to cope with this? But then, because I've lived with it for as long as I have, I've already built up the words that I used to talk to myself to say, but this is this is something that you know, can happen. Yeah. And that you are going to get through it. Yeah. So I think at the outset of the diagnosis, it might feel really difficult. Yeah, every time something comes, but as time progresses, you can build up that resilience Definitely, yeah, I think resilience is a really important element for people to bring into their lives when they've got Ms.
Absolutely. And and we know now that resilience is something that, you know, not everybody has in bucket loads, you know, that due to lots of issues and challenges they may face, but it is something that you can grow. It is something that you can learn. So the fact that you haven't felt so resilient, perhaps previously, does not mean that you don't have the capacity to build that resilience. And I think that's a really important message that I talk with my clients a lot based on lots of situations, you know, you may, you've may have felt in the past that you didn't have that toolkit, but that doesn't mean that you don't have the ability to have it now. And
for people that are thinking my resilience Actually, I'm All Out of response, I'm all out of their ability to be able to deal with this and they just want to shut themselves away. Do you? And do you come across people in your in your business in your sort of client list? Who are at that stage? And what would you say to them? And what advice would you give them as part of your conversations that you're having with them? Yeah, of course.
The first thing is with the type of therapy that I practice, we're not looking to create a perfect life. We are looking to understand that to live well. There are dark times and there are happy times, there's lightness, dark, there's joy and there's sadness and understanding that you will have days when you feel like that and you're entitled to them. And there's nothing wrong in feeling like you want to shut yourself away and being able to say to yourself, okay, if I feel that way, and I want to do that Starting to ask yourself, what is it I need from this time? What is it that I want to reflect on? What is it that my brain My body is saying to me at this time? Is it that actually you you need rest? And you just need some space away from people? Is it that there's something that you need to work through? And, and it's about having that ability to question yourself as to why you're doing it. It is not about saying, I need to get over this as quickly as possible. And I should always be trying to look on the positive side, you know, that isn't how resilience works. Resilience is about being able to lean into those tough times and say, What am I going to gain? So I'm going to shut myself away, and I'm going to withdraw because I've just about had enough. What would I gain from doing that? What change will that make for me? And these are the kinds of questions that when you start getting into them having that conversation, you tend to find that you come up with something that allows you to take another step outside that door. And that might sound a little bit airy fairy, but this is not a there is not. As you know that there is not an exact science to this, you know, there is not a solution where I say, Oh, you feel that way. So do this, and then you'll feel better. And then you can just carry on, it is about just being able to recognize that it's about acknowledging that it's okay to be like that and to feel like that and we don't have to carry on regardless, and we can feel sorry for ourselves. And a lot of clients are surprised when I say that to them because we've we've had this movement of positive psychology, and it's got a bit misinterpreted and everyone thinks that they've got to be thinking positive all the time. And that isn't how it works, you know? So questioning yourself questioning why it's happening question What it's going to bring you and thinking about what you might do next, and being kind and compassionate to yourself. And accepting that these days will happen is a really good place to start in terms of coming out the other side.
That's really, really good in terms of ideas. And I only wish that back in the day when I was stuck in my place that I was stuck in that I had known somebody like you. And that way we could have talked about such things. But I think they are really really useful tips. And that to know that actually, this is quite normal. And then on the other side, there are going to be a lot of people that were just getting on with life with Ms. And are celebrating and they are out there and they are running marathons or doing amazing things and that we really don't know Have to measure ourselves against anybody else?
Absolutely not. I mean, we don't want to be comparing ourselves regardless, you know, that compare tinnitus is the thief of joy is one of my favorite sayings. And we all find ourselves at some point comparing ourselves to somebody else. I have regularly with clients to use, use an analogy that you and I spoke about. I don't even know if you remember talking to me about this, but you spoke to me about the fact that you can, you can live against your illness constantly trying to prove yourself constantly trying to prove that it's not going to affect you, and it's not going to impact you. And actually all that does is create more problems or you can live with your disease. And you can go into that place of acceptance, understand your limitations, but that's it then it doesn't have to define you if you feel like running away. marathon, run a marathon. But if you're like me, and you can barely run to the shops, and that is without ms, then that's okay as well, right? We are all at different places in our lives and in our journeys, and we live with what we have with us as a person rather than constantly feeling like, I got to do better. You know, we there's a lot of that going on in the world. And for a lot of people, and we need to stop trying to do all of this being your best you and all of that just be you just as well. And be you.
Yeah. Yeah. You're good enough as you are. Absolutely. Yeah. No, I like that. I think we could chat for hours and hours and hours, about all sorts of things. But I think in terms of this episode, and really unpacking accepts Some resilience I think has been fantastic. And I really hope that is going to be of use to people and that people take some inspiration and some action.
Oh, yeah.
Yeah. So Ali, when I get to the end of when I'm talking to people for the podcast, I always ask a totally unrelated question that gives us a little bit of an insight into you when your personality can that is thinking about you can be anywhere in the world. So COVID lockdown is no longer. Okay, be anywhere in the world. Yeah. And you're going to be drinking your favorites drink. It can be alcoholic, non alcoholic, whatever it might be. Oh, and we'd really like to know where you would be.
Gosh, I would be for anywhere in the world. Actually, my favorite spot on planet Earth is the chalice well gardens in Glastonbury. And I would be sitting there in the sun in the meadow, I would be drinking my favorite tipple, which is, as most people know, a lovely glass of Prosecco, which I'd have in my lovely stylish hip flask that I carry with me, and plus properly my Nan's flask with some tea in it as well. And looking up the hill at the tool that sits on the hill in Glastonbury. Yeah, I think that's, I think if I could choose anywhere, that's where I would be and that's what I'd be drinking. Mm hmm. And would it be
daytime? Would it be sunset time? Would it be warm weather?
Oh, it'd be warm weather. Gotta be more than weather. Yeah, I'm not good in the cold. And, and it would be probably just after midday, actually, just after the one minute meditation silence that they hold there. And yeah, when it's and it's just got a really peaceful feel. And yeah, that that's where I would be
lovely. That is great. Thank you so much for joining us today, Ali.
You're welcome. It's been great to chat with you.
Thanks so much for listening to today's ms show. Please subscribe rate and review this podcast. If you'd like to get more involved with the MS show. Why not join our Facebook community. Just search Facebook for the MS show. for another dose, Ms information and inspiration. You've been listening to the MS show podcast
Copyright: Bron Webster 2020
Part of the series - Emotions with Multiple Sclerosis.
This episode explores “Loss and Multiple Sclerosis”. Bron is joined by Hannah Morris, PhD Student at Reading University.
Hannah’s studies are exploring “Psychological Support in Multiple Sclerosis”. More details about this and a link to her research questions are below. Please do take part if you are part of the MS Community:
https://research.reading.ac.uk/neurodegenerative-diseases/multiple-sclerosis/
https://forms.gle/5YTssp4pDVFciYEe9
This makes for compelling listening as Bron and Hannah make sense of real experiences of MS loss; before critiquing well-known models of loss (grieving) and; evaluating the complex nature of repeated cycles of loss when one lives with an incurable, unpredictable condition (such as) Multiple Sclerosis.
“Immediately upon diagnosis I was catastrophising.”
“Psychologically I’d lost everything … I was never going to be able to pursue the career I wanted to …. Or fulfil my role as a mother … I felt like I was going through the process of mourning”
“What I was crying for, in that moment … I was mourning over the loss of myself and [loss of] being able to fulfil everything that I wanted to”
“I was catastrophising really because I was able to fulfil the roles that I wanted to but I just had to find alternative ways to deal with it … even though I did lose ‘me’ and my identity as ‘me without MS’ I found alternative ways to manage myself”.
“I’ve lost the ability to do [things] in the way I want to ... or the way that I feel I should be able to do [them]”
“It’s not a physical loss … all my losses were a loss I was experiencing in my head”
“It’s a big threat to who I am now and who I wanna be”
Copyright: Bron Webster 2020
Links: Facebook Group - https://www.facebook.com/groups/multiplesuccessCommunity
Website: https://multiplesuccess.co.uk/
Email: hello@multiplesuccess.co.uk
Socials: Multiple Success
TRANSCRIPT
And
so today I'm really privileged to have Hannah Morris with me, Hannah's a person with Ms. And we I came across Hannah in relation to some work that she is doing at the moment, which was really interesting to me and it really fits in terms of what I'm looking at, for this series, all about emotions with multiple sclerosis. So we're going to be looking at lots of exciting things. Probably not. You might wonder, why are we talking about loss when you've got multiple sclerosis, but we're going to so welcome Hannah Morris. Thanks for being here.
Thank you for having me, Bron. I'm very much looking forward to talking about this very interesting topic that is often overlooked. When we talk about Ms. I'm really looking forward to talking about it in this session today.
Fabulous. Thank you. So, Hannah, just to get us started with the interview, Could you just tell us a little bit about your own ms story, and maybe what it is you're working on now?
Yep. So I've had I was diagnosed about nine and a half years ago now. And but I would have had actually the worst of my symptoms were before I was even diagnosed. And so I was going through actually very stressful time in my life, which is what I do. triggered my Ms. Actually, I was studying I was working two jobs I had three children at the time we just moved houses. So there was a lot going on in my life. And so I started experiencing symptoms of vertigo was the first symptom I had. But I tend to get a bit of vertigo anyway prior to the MS with a cold. So I just attribute it to that didn't think anything of it had a few other little minor signs as well. didn't really think anything of it, but the vertigo eventually got very severe that I became bed bound to the point that it did push me to go and see a doctor then once it was stable enough for me to leave the house. So I saw a doctor and apparently she'd suspected that I might have MS at the time, but I hadn't realized that that's what she was suspect, you know, expecting at the time. And so you know, she'd referred me for further appointments but i i have not thought anything of it. I just pushed it aside and carried on. But then I kept getting more and more symptoms like couldn't feel half of my body I couldn't taste I was my speech was slurred that was one thing that really concerned me. And eventually kind of after about eight months of symptoms now I finally thought you know now is really the time to go and see because something is not right here. So anyway when and I kind of presented myself to the to the medical assessment unit in the hospital and kind of really started the process of diagnosis going, but by which time my symptoms had gone. So by the time I finally got my MRI come through, I think it was a 13 month waiting lists. I've been waiting all that time, but in the meantime, my symptoms had gone. And so I just thought, you know, I've just been just been going crazy, those symptoms must have just been some kind of madness, but I've been going through it because I'm fine now waiting for the MRI anyway. So of course when they got the diagnosis, it was quite a shock. And that was nine and a half years ago now. So yeah, it was a shock diagnosis, but at the time, I already kind of self doubt myself after experiencing those symptoms, but then they went to when I thought that it was me that was having some kind of psychological issue. And that it, there was nothing wrong with me, after all, but then obviously the diagnosis came and it was a really massive shock then. And yeah, and that kind of came, I was in the middle of doing my masters at the time, actually, when I got diagnosed, which was quite interesting because what we were learning about happens to be it was health psychology are studying. So it's kind of we were looking at the psychological processes that somebody with chronic chronic illness might go through at the time. So I was kind of applying what I was learning in university to the experience that I was going through. And so that was quite interesting as well that I was learning that at the same time. That same time I was trying to decide on a dissertation topic for my masters at the time and have not really come up with anything is suitable. So I thought, why not just draw on my current experience and do something for people with MS. It will help me to learn more about What I'm going through as well. So that was my master's back nine years ago. Now when I did that. So that's kind of what really spurred my interest in researching that area as well given that I studied health psychology, and I did my master's dissertation on the topic. And and then I guess I just kind of stepped away after doing that from academics, to focus on family life, I suppose. And then, here I am now doing my PhD. And then kind of soft fit really to carry on with what I've been doing for my master's topic and looking at psychological support interventions for people with MS. And because I have it myself, I can kind of draw upon my own experiences as well. Understanding the kind of things that people with MS might go through the struggles they might face. I know we all have kind of different experiences, but I guess as well, not only can I draw upon my own experience, kind of I'm mixing in with groups of other people with MS. So I can kind of have a broader idea of what other people might be going through as well. And I guess yeah, kind of Yeah.
As I've every each one of us has different set of symptoms, different lives going on around us. And I think everything that you've just talked about, first of all, this was going on when you've got your three children. Mm hmm. And I think, find the time to focus on yourself when you've got children is not easy. Yes, you are focusing on the children so much, and it feels certainly for me. When I encountered health problems, I felt quite selfish to then be investigating something that was to do with me. Yeah. So I don't know if you agree with that. Yeah, I do.
Yeah, I do. Yeah. And I think something as well, that's kind of really
given me the passion to do the research that I'm doing now is from the beginning, right from the beginning when I was having symptoms and when I've been doing knows, there was no support for that. I felt that. And I guess to kind of draw upon what we're talking about here, the last I felt the last in terms of, you know, myself, and being able to do you know, what I've always been doing. And for myself, you know, my role as a mother as a student, you know, in what I'm doing, you know, and I kind of, I didn't get the support in how to manage these things now that it was, you know, that was that had been taken away from me and I just didn't know how to cope. I didn't know how to manage those kind of, I kept like a, like, I've just been thrown in the deep end, and I'd have to find some way to manage the emotions that I'm going through. And that was right from diagnosis up until now and you know, the things will come up time and time again over the years. And I've not had any kind of support, probably in there been times when I felt that I really needed it and I moved forward to get it like I started on even x and that was awful for me doing injections. For myself, I suddenly developed an anxiety that I never had before I was never bothered about needles, but suddenly, it was a problem. And because it was causing me so much anxiety and it was interfering with my ability to kind of medicate myself, I did seek support them.
But you don't xiety
Yeah, for the anxiety, but not probably, you know, I wasn't sure how to go about getting the support. So just kind of looking around asking other people in the same situation online and, and the the nurse who came to help me learn how to do the injections, like a kind of turns of her all's I wanted was, I guess, some kind of reassurance it wasn't, you know, I maybe tend to do them to see, you know, I'm having difficulties in doing it properly. But the issue was a psychological one. I was very anxious around it. Mm hmm. Yeah. So that, you know, that was one that was one kind of big thing that came up in terms of not really having the emotional support with that, you know, and and right from the beginning, you know, they've been Like I said at the beginning, that's when I needed it more than anything, but it was it was never offered to me and that I think that's where I see my, my research going because I think that's where it's particularly missing.
For people with autism, that's when we need it most.
Yeah. So what what is the research that you're you're doing? You said it's about the emotional aspects.
So, a PhD now?
Yeah, yes.
Yes. Tell, tell me a little bit about the PhD and what your what aspects you're covering and how you're covering that. And then what are your hopes for the outcome? And I know with PhD, I guess, it moves with what you discover along the way. Right? Yeah. But just enlighten us a little as to what aspects you're looking at.
Okay, so what so I have a very general broad title today. With psychological support in MS, which like you said, I'm kind of keeping it open at this point because I don't know where it's going to take me because I can tell you about my experience of MS and the support I've received, what I want, what I need, what's been useful for me what's not. But I know everybody else has a different experience. So for the first part of it, I'm looking into type of support that people have had from different types of people, you know, what was useful for them what was not? And then what is it that people want? What is it that they are concerned about? In particular, what would they like support with, you know, is it lost is lost one of the things is it anxiety? And is it depression? Is it stress? What is it in particular that people are looking for support with? So really understanding what people have experienced? And you know, what's been good and bad about it, so to be able to draw upon that, and then what is it that they want and how they want it? So, at the moment, that's where I'm at. And then from this we'll use this information then to develop some kind of intervention most likely In online intervention, since I'm kind of doing it online, and I'm conducting it online at the moment, so it's some kind of intervention that could be delivered by distance, I would imagine at this point, really, you know, drawing upon what we learn from the survey to develop an intervention that has had the input of people with MS but have experienced it, and they're saying, you know, this is what they want, this is what they need. And this is how they want it. So drawing upon that to design this intervention, which would be, I guess, the next stage in my PhD. And so how are you going about getting the feedback and the information that you need? So this is where and actually it's been, it's been a good experience for me to connect more like at the beginning of my diagnosis, I did look into but I wanted more information, I needed that support. So I looked for it. And through you know, Facebook was around the time but not, not this, not in the same way that it is now, but I To online support groups anyway, and connecting with other people that are going through the same that made me feel normal, because they were going through the same thing that I was. So I kind of sought support from his suit. So I got support from them then. And as I kind of adjusted to my MS and found ways to manage it myself, I kind of parted myself away from that club, don't think I needed the support like I did then. And, and then. And now as I'm kind of doing my studies again, I realized that this is where I got my support from. So this is why I'm now turning back to these types of groups again, to you know, reach out to people who were, you know, in the same situation that I've been in as one looking for support from fellow people with MS as well. And what other kind of support have they gotten as well. So this is why I'm kind of reaching out to people primarily through support groups on Facebook and, you know, online support groups,
of which there are many, there are
many, many support groups. Yes. So this is kind of where I'm reaching out to people because For me, this has been useful for me. And I can see that there are other people that find and use in these groups as well. So and that's why we kind of leave
matters. And yes, it is. Yeah,
yeah.
Yeah. Through one group to another group, and then you've come on board with the group that I run. Yeah. So, yeah, I think that's, that's a really good way to get the feedback from people now because it will be an ever moving feast, won't it in terms of what support is available and what people are finding beneficial? And things like apps on phones? Yes, yes. They are growing hugely. And I, I know I saw last night on I think it was LinkedIn. And they were two announcements from two totally unrelated people about the new apps that they'd each introduced. You know, anything thought, you know, there's probably going to be a proliferation of apps for people covering all kinds of different things. And so the technology is going to keep changing. But I think that's it. Yeah. You're gonna get so much interesting feedback by asking people. Yeah.
We talked you touched a little bit about loss. And I think people with MS.
Probably some, some people with MS don't necessarily get why loss is talked about in the same breath as Ms. But I know when I did my studies, that it's something that I got a handle on and the whole process of grief and therefore loss that goes with it. And there are so many different aspects that we lose when we're diagnosed with multiple sclerosis. And I know, for example, one of the things that I've lost, I've lost my career. And so I left my career in financial services. And I think, yes, there was a lot of fatigue, knocking around at that point in time. But cognitively, I was getting slower. And I just was not able to keep up with information and the job that I was doing required me to be able to piece together in my brain, lots of projects and information, and I could no longer do it. So I've lost a career on the back of that and I just wanted Have you have Have you had experience of loss since you've been diagnosed as well, hello.
Yeah, so I think like yourself as well, for me, I, the biggest loss I felt was literally at the point of diagnosis. You know, on that day I remember it so clearly that day, the first thought that came to mind was, well, obviously I kind of I catastrophize as you do, you know, in in the moment, you know, that I was diagnosed and the neurologists had walked off to sort out the next test I was going to go for, but in my head, I was like, okay, so I can't be a mom anymore. So I've lost my role in the family. I how am I ever going to be a mom? Now that I've got ms, even though you know, nothing was different, but to meet psychologically, it was, you know, in that moment, I was still the same person physically as I was yesterday, and I would be the following day. But psychologically, I've lost everything. You know, I was never going to be able to pursue the career I wanted to anymore, or, you know, fulfill my role as a mother and or a wife or you know, any, any role that I have in the family, I'd lost all of that. And I felt like I was going through the process of mourning what I was crying for in that moment, I was mourning over the loss of myself and being able to fulfill everything that I wanted to. I mean, I think at the time I was really catastrophizing, because I, you know, I was able to fulfill the roles that I wanted to, but I just kind of had to find alternative ways to deal with it. So I think even though in that moment, I did lose myself and my identity as meat without Ms. And I found alternative ways to manage myself. I like you. I my biggest issue is even though I don't have the overt symptoms that somebody would look at me and say she has MS. I do have cognitive symptoms. And for me as somebody who is studying you as an academic, that is where it's very difficult for me. So you know, trying to find alternative ways to deal with that, but it feels it still feels like a loss even though I haven't lost anything as such, I've lost the ability to do it in the way that I want to do it or the way that I feel that I should be able to do it. So it's a loss in that way. It's kind of maybe a different way of a different type of loss. Because it's it's not it's a loss of the way I want to do things or the way I envisaged doing things.
Yeah, so it's a lot of Yes. Expectations almost listener.
Yeah. Like, yeah, I lost it. And it kind of gave me this loss of confidence as well with it. Because, yeah, because now I kind of doubted my abilities because I was not as cognitively able, as I once was. So my confidence and obviously kind of my psychological well being as a result is kind of knocked as a result. So loss of confidence is another thing as well that you know, it's not it's not a physical loss, all my losses were really losses that I'm experiencing in my head in terms of dealing with a new identity. And kind of finding new ways to, to manage myself around the symptoms that I have subtlest they may be but they're still enough to affect me psychologically. Because, you know, especially because they're things that are important to me and contribute to me as I am, because I now kind of I don't have the confidence maybe to be who I want to be in the way that I want to be. I go, yeah,
yeah. And that loss of confidence that we talked about it actually offer a little bit before the interview. How we having the confidence to even put yourself out there and to be interviewed or for me to put myself out there on a podcast, and to be able to cognitively get through a question, one question and another question. I get The confidence aspects. Totally.
Yeah. Because even now is like your pose a question and I will start answering it. And then I find myself, you know, talking on the topic, but maybe perhaps veering away from the original question, and then I'm busy talking away. And I think, Oh my gosh, this is not what you asked, and what am I doing? You know,
but I'm not going to judge.
Yeah. Because I know that you understand. That's the thing, the support that you can get from other people with MS. And, you know, I think more valuable than support that you can get from professionals.
Absolutely. I think we all we all understand he has issues and just the little things that are so invisible, but impacted in such a huge
way. That's it, I think, yeah, I think the, you know, the, you know, the overt symptoms, you know, when you have difficulty walking, you have the vertigo, you're falling over the place. You know, the things you can see and they do impact you and they do it kind of have the knock on effect of impacting psychologically as well. But because people can see that there is something wrong there, they might perhaps empathize and understand more than the invisible symptoms that we experience as well. So it's kind of I always find it more comforting to speak to other people with MS. who are going through the same there are people that understand that I know I can't see that you're that there's something wrong. But I understand that this you know, there's something that you know, there's something going on there and I know what it feels like and I completely empathize with what you're going through.
Yeah, it's a very good thing. It says it says, We've both kind of acknowledged some losses along the way and
I know in 2014 as well I got a cancer diagnosis and faced my own mortality. One more thing I want to ask you, if you're listening to the podcast and you live with Ms or you're affected by Ms. In one way or another, then you need to look up the Facebook group that's called multiple sclerosis, UK help multiple success community, I'd love to see that it's on Facebook, and the link will be in the show notes. I know in 2014, as well, I got a cancer diagnosis and faced my own mortality. And at that point, I really lost myself. And I experienced go into places emotionally that I have never been to before. But the studies that I've done previously, enabled me to start to unpick some of the feelings when I've got over the initial what is going on for me, and what is the next step that's going to happen in this very rare cancer because it wasn't there. You know, I've been able to use as well, some of the studies and some of the information that I've previously acquired. And I think when we're talking about loss, and the loss of different elements, it's important to think that some of these models that are out there, one of which is the Kubler Ross model, has also been applied. It was it was originally written as a model of grief and the processes and the stages that people go through, if they're grieving and I know you said that you felt grief. It's also been applied in the change cycle that anybody can go through. And so this Kubler Ross model is based on these stages that we go through It's very familiar, you might not know, if you're listening, you might not have heard of the Kubler Ross model, but you will have heard people talking about feeling shocked. And then going through the denial phase. And then maybe you're going to get a little bit angry before you start bargaining with yourself, and then go through a phase of depression, and then eventually you move on to the acceptance. And I think it's the transition from that outset through to the acceptance, that is a really difficult journey. And with the Kubler Ross model, the way it's the way it's set out, is that there are these stages that you go through. But there's an assumption that you go through the stages in order and one stage and before the next one starts. That's not been my experience, and I just wondered Hannah, as the Has that been your experience? If you were looking to apply that model to your life? Well,
yeah, I mean, I can relate to what you see in terms of, okay, you know, if you're going through actual grief in terms of mourning the death of someone, you go, you might go through that process in whatever order, but then you move on because, you know, the actual event has happened. And you know, you move on from it. But with Ms. You don't because it's there, and it's always going to be there. And maybe you do get to a to a stage you know, where you pass through various emotions and you know, you're in a good place, you're not having any symptoms, you're fine. But then something happens to just remind you that you do have Ms. You know, I've mentioned before, sometimes it's a cognitive issue being a thing, something will happen clumsy as well, I might fall down, and then it'll just be a reminder that I have Ms. And I feel like now I'm going back again, into that same process of accepting my diagnosis again, so it's kind of, you know, you never really finished passing through any of those stages, because it's not something that's going to go, because it's always going to be there. So you're kind of going back and forwards across the model. I know, they see, when it comes to going through the process of grief, grief, maybe you don't pass through those stages in order, but eventually you will pass through them all, and you'll move on from it. Because MS is always there. You can't fully pass through it. And so you find yourself hopping right back again, if it's a really significant event that happens that really brings, you know, your condition to the fore, then you kind of almost go right back to the beginning again, and the shock and denial again, all over again. So it's not really, you know, it's not really something that is, you know, something that you can pass through in the way that you might do if you are mourning the death of someone.
Yeah, it's like an ongoing process. Yeah, yeah. Yeah.
So there are definitely elements of it that I can identify with. And I guess you're saying the same, but I think there is something slightly different. That's going on for people with multiple sclerosis or another variable chronic condition. It's not saying Multiple Sclerosis is the only one that's out there at all. But there was another model that I came across, which is and I don't know how to pronounce an E with an online out, or the O with a number out because I don't know which of the two it's true and shut. And this is not so much stages that we go through, but they had an oscillating model that is moving between two points, almost like a pendulum of activities. And you might go through loss oriented as activities at one point, but then you move into the restoration oriented phase. And then you can move back between the two phases. Yeah, and it's an on more of an ongoing process of going backwards and forwards. And yes, it's in the loss, and then doing something that restores those feelings, and then something else will come along, and you'll be back into the loss oriented activities. And is that is that something that you would say, if applicable?
Yes, certainly. Because you know, as it is for anyone I know even though my symptoms will be different from the next person, one thing that is common for everybody is that the symptoms will be different every single time, or there might be one stable symptom, but there might be something new that comes along. So, you know, the first time you might experience the vertigo, and then you find ways to manage it, but he gets vertigo goes, and then something else comes back and you're back into lost mode again, because now you've lost your feeling. And now you have to find alternative ways to manage that and restore your sense of self or your sense of confidence that was knocked by that particular symptom. So now you're feeling better, but then hey, guess what another relapse comes along. And the next thing, you're having slurred speech, and they have to find new ways to manage that. So it's kind of a back and forth, I'd say kind of really mapping it onto different symptoms that you might experience and how this each symptom has a different type of impact on your life. So you're finding new ways to manage, you know, one way of managing distant and it's not the same way that you'll manage another symptom. So you kind of tried to restore yourself that was knocked as a result of the vertigo, but it's not the same technique that you might use for your slurred speech or your cognitive issues, for example. So it's a back and forth process of learning new ways to, to restore your sense of self, your sense of worth. has been not from each different symptom that's impacted you in an entirely different way. So that's how I kind of understand it and apply it certainly in my own situation, people will have different symptoms and kind of manage their change of identity. You know, the loss of role within the family or the loss of career manage it in different ways, but it's kind of still the same process, but it'll be just different ways of kind of managing it. Hmm.
I know that these things happen, and they're ongoing all the time with multiple sclerosis. And I know for example, I, I experienced a huge feeling of loss when I was in a polities class and this sounds really, you know, how can a pilatos class trigger feelings of loss when you've got multiple sclerosis, but this is just a way of illustrating I think The psychological impact, because I was laying doing an exercise with an instructor in a room full of people that were able bodied people, I was the only one with a disability that was affecting me. But I was laying there trying to do this particular polities exercise. I couldn't do what my body used to be able to do. And the more I laid there, and the more I thought about it, the more the tears started to flow, and I started to then realize that they're having this shift from this time six months ago or this time a year ago. And that coming out of what should have been quite a nice experience in a pill lattes class. I was feeling really teary. I was really feeling the effects of When my LS have taken me over the past six, nine months, it's just really difficult because I then read, I withdrew from the rest of the past. And then the instructor comes over and says to you, all right, Brian, and then you've got to start responding to other people. So think these things are out there and going to keep getting us and I can't prevent the thoughts from coming into my head. This is what I used to be able to do versus I can't do that any longer. But what I have learned is that I can tell myself that but that's okay, Brian. And this is a real life experience and I need to move on past it. So I can't get stuck in the dwelling on it. And usually I'm able to turn it around and say okay, because of I need to work on X, Y and Zed to make sure that I can do the best that I can possibly do. And I can be the best that I can possibly be, without looking necessarily at. This is what I can't do anymore. I can't do this anymore, I have to look at, this is what I can still do. And here's the action that I can take to try and make things as good as possible. Yeah,
so completely relate to them.
Yeah.
I know we need to sort of think about how we've coped in these different situations and these feelings of loss that we've had. Have you had some ideas along the way as to how you can get yourself out of these loss situations when they hit you.
When we talk about loss and can I guess for me the most recent experience that comes to mind just literally just from, you know, a week ago, that really kind of brought those feelings of loss to the fore again. And it's just something so simple and so silly, or I say silly, but it was not silly because it brought up a lot of emotions in me and made me feel that sense of loss again, and it was just something simple, like burning the food. So I put the food on fire, and walked away forgot about it. I didn't I usually set the timer as a way to manage this, because I do have, you know, these cognitive problems that are real bother for me. So I not set my timer. So obviously, the food burns and then suddenly, now I'm kind of thinking about my role as a mother is now lost, because, you know, I can't, you know, I'm just trying to do provide them with their basic needs, and I can't do it anymore. You know, so that's, that's a loss for me. I can't do or, you know, feeling like I can't just, you know, I, you know, I understand, you know, maybe we lose the ability to do some of the more fun additional things. But when it comes to providing for the basic needs, that's when I kind of felt that sense of loss, because suddenly, you know, I wasn't able kind of I was in the moment feeling like, I was not able to do that anymore. And then it kind of kind of made me think of my cognitive losses in terms of what I'm pursuing with my PhD. And, you know, if I can forget a panel on fire, you know, how am I going to get through my studies, if I, you know, forgetting that, and then kind of moving on from my studies going on with my career, you know, if my cognitive abilities have kind of gotten to the stage, then that's kind of like a big threat to who I am, in terms of, you know, who I am now and who I want to be. So
you see started with one for what? Yeah, and that was quickly sort of became a much bigger thought and you taken it to your, your whole kind of ability to care for your kids. And yeah, more than that, the ability to be who you want to be in the future, but that all came from an incident Yeah.
Something seemingly failing. Yeah, that's it, seemingly minor, but it really just kind of, I felt guilty. That's what I felt guilty because I couldn't fulfill my role to other people, but also to myself as well it can fulfill my own role. Or I felt I felt like it at the time, like, how am I going to, and this was, you know, this is only from last week. And this was, you know, this is a recent feeling, which was kind of similar to the things that I would have had at the point of diagnosis, as well in terms of feeling that I've lost everything in terms of my career and my family. And so, you know, like we'd mentioned about moving back and forth. You know, you get these odd reminders here, though, and everyone was a reminder to me of kind of what I had lost, but at the same time, you know, this was just one incident. And, you know, it just happened to happen because my watch battery was dead, so I had not set the alarm on my watch. So I cried, how did I yeah, how did I How did I cope with this by telling myself that, okay, it was just a one off thing and I found ways to manage this loss, you know, I have these cognitive losses. And I've found ways to alternative ways to manage the difficulties that they face in terms of accepting that I can't do as much as I once did. I can't achieve as much in the space of time that I once did. Now I need to allow myself more time to do these tasks. I need to rely on things like alarms, and to do lists and notes written everywhere. I need to rely on these things. And they knew that and you know, in that moment when I burnt the food, and if I kind of lost track of the fact that it was just one event, and yes, I know that I have experienced the loss of cognitive abilities. But over the years, I found ways to manage that to the point that that it doesn't feel like a loss as such anymore because I found alternative ways to manage the loss, but I can still achieve what I want to but find a different route. Let's see. So that's always been my way of coping with it. But you know, in that one instance where I did not have my backup, to help me manage it, kind of those feelings of loss came to the Once again, and I, you know, I remembered what I have lost because I don't have the support there to, to do to do things how I normally would. So I guess it was just really reminded again, of these losses. And I think, you know, that's seemingly, that's a really small thing. You know, you've burnt
something, but the impact that it's had on you emotionally, and the impacts that my Platos class had on me emotionally, is so much bigger.
Yeah, that's it, they both both of those incidents seem on the surface, you'd look at it and say, well, it's not really a big deal. But it is a big deal to, you know, to our psychological well being, because we almost kind of, you know, hit by the psychological impact of, you know, the condition that we have and how it's impacting us and how we need to manage the emotions that come with it as a result of the physical and emotional difficulties that we face.
I don't know whether or not that you've got any examples of any losses that I've in a weird way benefited you? Or,
I guess outcome really to draw upon the same example again, I guess I suppose it's the biggest thing to me as my my cognitive difficulties that I might have. Like I said, it's meant that I've had to find alternative ways to achieve the same goal. So I have alarms, I write notes, I have to do lists, I have to write everything down. So I don't forget, I have really weird ways of reminding myself to do something really weird stuff like okay, I'm doing the laundry and I need to go and hang up. So but I don't have time to do it now. So I quickly throw it in the laundry basket and throw it in the hallway, and just leave the basket in the hallway for everyone to trip over. But I know that if I see it there in the hallway, I'm not going to forget to go and hang up. You know, the amount of times I would have kind of taken out and left it there and it's you know, in the laundry and it's gone. All stinky because I've forgotten to go and hang up. So now I know move it into the hallway where I see it. So that's kind of one of the tactics I use to kind of overcome Yeah, and the forgetfulness is taught me new ways to manage so I can still achieve the same goal but I have alternative ways of achieving it. So I think that's been a positive thing for me in terms of before my diagnosis and before I started having any symptoms when I was doing my undergraduate degree for example, I was very disorganized but because now I have the cognitive symptoms I've had become so much more organized, which is great, you know, I like that I'm more organized now that I you know, that I probably achieve more now than I did then because I'm organized I'm achieving higher now because I have to be organized and manage my day manage my routine more than I did you know, when I was doing my undergraduate it didn't matter I was very careless. You know, it didn't matter to me, I was not organized I you know, yeah. So, so now I am organized because you know, have my my ways of achieving what I want to achieve. So now we more motivated, and I have kind of backup plans and ways of achieving it in ways that I didn't before. So that's kind of a positive thing in way, you know, in that it's helped me to become more organized and to manage myself better as well. And I think even kind of psychologically as well, I think it's kind of helped me to develop a sense of resilience as well how have not been tested in any way before, through my, through my teenage years and early adulthood. You know, I didn't really face any big tests, so I perhaps was emotionally weakened. So if I'd fixed anything, even minor, I'd find myself breaking down and crying. But now, having gone through this experience has kind of made me emotionally more stronger because I know how to manage my emotions more effectively than perhaps I did before. So from kind of a cognitive side from a physical side, and from an emotional side as well. I found alternative ways to effectively deal with the situations that I find myself in now that I wouldn't have done before I had him so I was like to look on the positive side of things. No, there's so you know, MS is, you know, it comes with so many challenges. And it's, you know, it can be really upsetting we can go through so many difficult times, but at the same time, you know, it's resilience building. And it's taught me things about myself and I found positives in the situation. And I'm better able to deal with challenges and I was before. So it's kind of like a, you know, a learning exercise. So I'm kind of almost grateful for the experience as well. It's helped to kind of nurture relationships as well to help me to connect with new people as well. Like yourself as well. So it's kind of nice to Yeah, connecting with new people who share something with me that perhaps other people might not be able to connect with as well. So you know, that's another positive outcome as well to kind of have that feeling of connect with somebody who's going through the same sort. I don't feel unusual. I can feel normal because everyone else with Ms. Yeah, most of the people with MS are going through the same as well. So
yeah, we're all experiencing the same thing. Yes, sir. feel that we are normal again? Yeah, even though we've been through all of this and just the talking to other people and knowing that other people are experiencing similar things, and I think this is going to sound, again, sort of really unimportant, but I've lost the ability to walk in high heels or anything. I can relate to that. Yeah, yeah. Yeah, me too. I tripped over. Yeah, I can't keep a flip flop on where I've got foot drop. And oh, yeah. And so I was engaged in a whole discussion with someone on a Facebook group and it's just sort of knowing that you know, well, I'm not the only one and I'm going to share with you a picture on my really not trendy, my lovely flat sandals with bad on them. You've got a group where you can do that. Yeah, that's it. Yeah. And knowing that other people are experiencing the same things. So you know, I've lost my high heels. I've gained friends. Yeah. And I'm able to share it. What are quite mundane things that help other people, but the great flip flops that I now wear or the who was or whatever it might be, and I think it's that community. And that's how that sort of coming together and helping other people and seeing just how many people are posting exactly the same situation. It's amazing, isn't it? They're like, I posted in one group about I'd never knew about this until recently. pseudobulbar effects.
Yeah, that's something that I seem to have every now and again, and you know, I just posted in one group, and suddenly, you know, so many people have the same like, Well, I'm not the only one that randomly laughs
at nothing.
And I've had I've had the pseudo Bob Muller effect. And yeah, it's it's very disconcerting when you can't stop the laughter or contrary when you can't stop the tears, it's all expected. So, I think the community that we are part of is a massive help to dealing with all of this. Yeah, yeah. Yeah.
So I'm happy that this that my research has pushed me back towards these groups that I abandoned thinking perhaps I didn't need it anymore. So I'm actually really grateful. You know, I guess things over the year have over the years I've kind of moved on for myself and maybe I've felt on the surface that I'm kind of managing myself and I guess, you know, have managed learn to self manage my condition myself, but it's been really nice to connect back in. Do you remember that some of these things that I still have ongoing Guess I've just learned to see it as part of me. But other people are going through the same as well. And you know that it just feels comforting to to connect them with other people who are going through the same and feel normal again.
Yeah. And actually, you know, the fact that we're out there, we're connecting with other people. And we've reached the point where maybe we have accepted and it took me eight years to reach acceptance.
And one of my other guests talks about when you've got a wound,
and then it scars and then the scar is healed over. That is when you're possibly in a position to be able to work on the story of the scar. Yeah, yeah. Yeah, when the wound is open, or the scab is still red, you're not going to be able to talk about it. quite so much. Yeah, you know dealing with it day to day. And that is a really exciting episode. But
yeah, I can entirely relate to that thing I kind of relates to what I was seeing in terms of, you know, I had not really discussed it much I kind of let it go aside and kind of now's the time, my this discard is still definitely there. But it's healed enough that I can come out and talk to other people and get the kind of ongoing restaurants that we need. So yeah, that that makes sense.
Yeah, interesting. And so if nothing else, we're going through a peel a period of having, having what was the word I'm looking for help me out, like having a coat and going through the whole process of healing. So it's the immediate coping with it and stopping the bleeding and then addressing it, putting the dressing on and the bandage or whatever you need to be And then working out how you can best help it to heal. And then beyond that is going to scar over, it will still be there. But then you can talk about it and help other help other people with whatever it is that you're talking about. So I just thought that was quite a lovely way. Yeah, it is. Yeah. To be able to look at the changes that we encounter. Yeah. So that's good. We're at the end of all the sorts of topics that we were going to cover and I think it's been really enlightening. And I think the work that you're doing as part of your studies can only benefit everybody in a massive way. And I would really encourage people to respond to the research questions that Hannah has got at the moment and they will be covered off in the show notes attached to the podcast. When we get to at the end of an episode, there are a couple of questions that I always ask. And I just think it gives us a little bit of an insight into into yourself first, and not the illness and not yesterday's. So, I asked you questions, and we're imagining that we're out of lockdown. So how could be anywhere in the world? Why would you be and the second question, what would you be drinking?
Well, the first thing that comes to mind actually is probably different. The first thing that comes to mind with that question is I love, like, cozy log cabins with a nice fire and a nice hot chocolate with marshmallows. It's really comforting, although I'm feeling a bit cold right now, so I might tell you that I've always wanted to go to the Maldives. So I'd be lying back on the beach with a nice cold, a cold, cold Juice drink. So that's where I'd be right now but usually the answer would be like a nice cozy, warm log cabin with a fire blazing
and and it would that be a hot chocolate
yes yeah. Oh yeah there's the place where I am right now in my imagination is a cold is quite remote wherever it is I don't know where it is. I don't know where it is but I'm seeing the place in my head is is a log cabin with lots of like green trees around. There's snow outside is cold outside but inside I mean my fluffy warm slippers and nice fluffy dressing gown on a nice soft chair sitting in front of the fire with my really really big mug of hot chocolate creamy hot chocolate with a big wet of cream on top. And marshmallows on top chocolate sprinkles as well. The whole works Yeah. Yeah. So that's that. I invite you to come with me for that. I'm pretty cool. Located in the middle of nowhere, maybe Canada or something like that.
Yeah, Canada I've never been. So I put them all to use equally I could I could cope with so I think they're great places to be. Yeah, I've always wanted to go. Brilliant. Yeah, Hannah, thank you so much for joining us today.
I really, really enjoyed talking to you and sharing with everybody because I'm comfortable to do so now with my with my scarf. Let's see.
Scott. Yeah.
But it's been great. And I wish you all the best with your studies. And I know we're gonna stay in touch.
Yeah, definitely. Yeah. thank thank you very much for having me. Thank you.
Thanks for listening to the MS show today. One more thing I want to ask you look up the Facebook group. Multiple Sclerosis UK how multiple success community. I'd love to see that. Thanks so much for listening to today's ms show. Please subscribe rate and review this podcast. If you'd like to get more involved with the MS show, why not join our Facebook community. Just search Facebook for the MS show. Come back soon for another dose of MS information and inspiration. You've been listening to the MS show podcast
Bron Webster introduces the emotion ‘fear’ and how she has identified the emotion, the triggers and the impact on her behaviours.
Fear … what do I need to learn about that situation that will help me let go of the fear?
Listen to find a simple way of looking at your feelings and making forward progress.
Copyright: Bron Webster 2020
Facebook Group: https://www.facebook.com/groups/multiplesuccessCommunity
Podcasts and Website: https://multiplesuccess.co.uk/podcasts.html
TRANSCRIPT:
Hi, welcome. And today we're moving into a new series. We're moving into the MS feelings and Ms emotions series. But we've just finished the MS lifestyle changes which really, really focused on diets. So so far in June, we've explored some of the main ms diets and lifestyles and in particular, we looked at the world protocol. So we had the fantastic Terry walls join us for one episode. We've also looked at the best bet diet. And that was with Jerry and Kelly who joined us from Canada. Then we've had the overcoming m s or m s lifestyle with Jeff Alex before finally some key life messages from Ms better and Judy gray. And so I think it's fair to say that diet plays a really important part in our ms lives. It provides nutrients and cuts out if we decide to make changes cut out some of the things that are purported to have an impact on our disease. But secondly, and I think more importantly, changing diets adopting different ways of eating gives us a sense of control. And that's something that can be so lacking when we live with multiple sclerosis. So, coming up in this next series feelings, we've got episodes with some great guests that are covering a lot, and why we'll be talking about lost. It's really important, it's all going to become clear. I've also got guests on acceptance and resilience. And I've got a great guest talking all about mindset, and some things and steps that you can just take that can really help you get your mindset in the right place.
Did you know that there is an associated Facebook group for people with MS. It's a positive group and it encourages members to look on the positive side of life. The group is called Multiple Sclerosis UK help multiple success community. Why don't you look it up on Facebook? Answer the joining questions and take a positive step in your life.
So coming up in this next series, feelings, episodes covering loss, acceptance and resilience and mindset. But today, I want to talk about a scary emotion, fear. Fear of what you might ask. And I'm thinking specifically in relation to multiple sclerosis. So is it fear of coming out? Is it fear of coming out to other people about your diagnosis? What about fear of the unknown? We don't know what's going to happen. from day to day, week to week, month to month with Ms. So we're living constantly with fear of fear now. What about fear of being isolated? fear of losing friends, fear of people not understanding. fear of being alone. Can I get married? Can I find somebody to date? When I live with multiple sclerosis? What about looking to the future and fear of not working? fear of not fulfilling your expectations, fear of losing your dreams and fear of the reality. Fear of what is going to happen and fear is really really not easy. It's playing itself out in our lives every single day.
And I want to share with you just a small example of one of my fears. And my typical behavior. I realized that I had been invisible. I've done some of my instinctive, let's withdraw. And it's because I know that I'm feeling scared about something. But that's some things of my own creation. This was when I was heading up to the launch for this podcast back in April. And I've tried I've been trying to work out what it is, and why I felt scared. And it's because I've set myself a deadline to do something And it's something that is also in the public eye. So obviously, how big in the public eye I really didn't know. And I guess it's only going to be as big as I can make it is not necessarily going to be something that's worldwide. It's not going to be massive. But it's something that's happening. And I set myself a deadline. And deadlines are something that I really don't do anymore. I just don't work to deadlines. And I've worked out that if I do is because I start to feel really pressurized. And so I've stopped myself, setting deadlines. And I've stopped myself setting goals. And those are the first elements that I acknowledge. The second thing that was scaring me is that I've had to acquire so many new skills. I've had to Make new contacts with new people. And it's just pushed me out of my comfort zone. So I've got these two different areas. It's pushing me out because it's working to a deadline, and I don't work to deadlines. It's pushing me outside my comfort zone because I'm having to learn all these new things. And I'm having to make all these new contacts. And I think Thirdly, it's pushing me outside my comfort zone, because it's potentially really public as in potentially globally public, and that's what's making me feel scared.
So I just taken a few minutes for myself, and I searched and searched and reminded myself of the cognitive behavioral therapy that I had when I had my cancer treat But still couldn't get myself through the feelings that I had. So I think it's fair to say I've had a diagnosis of MS diagnosis of cancer. And then on the MS I've had the second message, but message about being secondary progressive Ms. So that is actually a big, impactful diagnosis to get the secondary progressive label applied. So that's three set of diagnosis. And I've been struggling, but back in 2014, when I was seeing somebody to help me, I came up with the words with the help of the counselor, the CBT counselor, I can get through it. Whatever comes I can find a way to deal with it because I got To get through cancer, I got to get through whatever life health throws at me. It's not something that's totally outside of my control. And just because now the things that I'm doing, I brought these fears on myself, doesn't make it any different. I can get through this. I can get through these fears. By working out how to do it, what to do next, what skills I need to learn what information I need, what sort of mindset I need to build. And by coming here and talking about it, on some kind of medium that's out in the out in the wide world. I've now completed that circle of fear. Firstly, I've noticed the feeling and identified and I've given it a label and he tells Fear. Secondly, I've worked out my behaviors as a result of that feeling. And that's something that takes a little bit of working out, sitting back, letting your thoughts clear, and really looking at what's been going on in your life.
Thirdly,, I've worked out exactly what has triggered these feelings.
And then finally, I've admitted to other people. In this case, I'm admitting it to you guys that are listening. I think my husband is fully aware of what I live with every day. And I do tell him when I've got big challenges coming up, but to admit it publicly for me has completed that circle of fear.
So to take away - notice the feeling worked out which behaviors are being impacted as a result. Work out and be honest. What is triggering those feelings? And then admit it to somebody. And then hopefully you can take the action and reduce those feelings and reduce le anxiety. Thanks for listening to today's podcast. I've got to ask, did you know that I run a Facebook community? Get yourself over to multiple sclerosis UK help dash multiple success community UK. Click to join answer the questions and we'll see you on the other side. Thanks so much for listening to today's ms show. Please subscribe rate and review this podcast. If you'd like to get more involved with the show. Why not join our Facebook community? Just search Facebook for the MS show up soon for another dose of MS information and inspiration. You've been listening to the MS show podcast.
In this episode I talk with Judy Graham who had symptoms of MS in her teenage years and pioneered / self-published one of the earliest handbooks for people with MS.
She talks about her approach to a lifetime of healthy eating and exercise as well as the changes brought about since she has been wearing an electrical stimulation suit called “Mollii” as she advances in age with Multiple Sclerosis.
Judy is a self-help lay expert on multiple sclerosis.
Editor 'New Pathways' magazine since 2000 (Published by MS-UK)
Author:
'Managing Multiple Sclerosis Naturally'
Published by Healing Arts Press, USA.
2010
'Multiple Sclerosis - The Self Help Guide'
Thorsons 1989
An A -Z of Complementary Therapies for MS
Specialties: Natural and alternative ways to treat Multiple Sclerosis
Find out more about Mollii - the electro stimulation suit - at http://www.remotion.co.uk/more-product-info
Copyright: Bron Webster 2020
Subscribe here: https://podcasts.apple.com/gb/podcast/the-ms-show/id1508792559
Find me at: hello@multiplesuccess.co.uk
Part of a series - MS Lifestyle - focussing on diet. Bron is joined by Geoff Allix, host of the Living Well with MS Podcast (OMS Lifestyle).
The Overcoming Multiple Sclerosis is one of several lifestyle approaches that has been developed for People with Multiple Sclerosis. Geoff has adopted this lifestyle and shares the main elements with us.
Eating for MS - Eat well
Supplements and vitamin D for MS
Exercise for MS
Meditation for MS
Medication and Drugs for MS
Prevent Family Members developing MS
Change your Life, for Life
Professor George Jelinek devised this programme
Social Media for Geoff:
https://twitter.com/GeoffAllix
https://www.instagram.com/geoffallix/
A podcast with a birdsong background.
Copyright: Bron Webster 2020
This is a crossover episode with The Direct-MS Podcast.
Part of a series - MS Lifestyle - focussing on diet. Bron is joined by Jerry Vandenberg and Kelly Jubenville from the Direct-MS Podcast
The Direct-MS Podcast is part of the Direct-MS website https://www.direct-ms.org/ which promotes various aspects to benefit those diagnosed with MS and their families. There are links to the Best Bet Diet (free cookbook available) and also to the website of Matt Embry (son of the originators of the Best Bet diet). Matt Embry's website is https://www.mshope.com/
Copyright: Bron Webster 2020
Part of a series - MS Lifestyle - focussing on diet. Bron is joined by Dr. Terry Wahls, author of the Wahls Protocol.
Hear Dr. Wahls tell her MS story and her decision to investigate how food might be able to deliver the nutritional components that benefit MS (and other chronic illness) symptoms.
Dr. Terry Wahls is an Institute for Functional Medicine Certified Practitioner and a clinical professor of medicine at the University of Iowa where she conducts clinical trials. In 2018 she was awarded the Institute for Functional Medicine’s Linus Pauling Award for her contributions in research, clinical care and patient advocacy. She is also a patient with secondary progressive multiple sclerosis, which confined her to a tilt-recline wheelchair for four years. Dr. Wahls restored her health using a diet and lifestyle program she designed specifically for her brain and now pedals her bike to work each day. She is the author of The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principles, Learn more about her MS clinical trials by reaching out to her team: MSDietStudy@healthcare.uiowa.edu. Pick up a copies of her research papers at https://terrywahls.com/researchpapers/ and a one-page handout for the Wahls™ Diet at https://terrywahls.com/diet/
Social Media Links
https://www.facebook.com/TerryWahls/
https://www.instagram.com/drterrywahls/
https://twitter.com/terrywahls
Copyright: Bron Webster 2020
As we end the Diagnosis series what have we talked about?
the sheer Grit and resilience all my guests have shown
the length of time has taken to arrive at a diagnosis of Multiple Sclerosis and perseverance plus self belief required
thirdly the gradual realisation of the need to make changes in terms of working, in terms of lifestyle
All of these people are involved in doing things that are benefiting other people, yes they might be linked to their own circumstances but ultimately the benefits go much wider.
The tests that are involved in a diagnosis ... the waiting for results and the feeling this is all-encompassing. It is on your mind every single minute of every single day.
MRI scans and lumbar punctures are frequent.
what is coming next?
Moving onto the MS Lifestyle and tackling some of the various MS dietary recommendations.
I will be talking with people from The Wahls Protocol, The OMS Lifestyle, The Best Bet Diet amongst others in the next series.
Copyright: Bron Webster 2020
TRANSCRIPT OF THIS EPISODE
Speaker 0:24
today I'm doing a series wrap up and a series starts. And this is going to be happening at the end of each series that I put together. We just finished the diagnosis series. We've listened to four people's diagnosis stories. We heard Jo Livermore, we heard from Grant Miller, Rachael Tomlinson, and also Holly Ford. Some have had MS for a long time, and others that have been living with symptoms for a long time. But weren't necessarily diagnosed at the time.
And then there's some others who have been diagnosed more recently broken with people that have had a diagnosis of relapsing remitting MS. And also people that have had progressive Ms.
So Jo Livermore, we heard from Jo about how she didn't take her symptoms seriously. She told us about her feelings while she was waiting to find out her diagnosis and how it consumed every waking minute for her. But she's adjusted to living with a diagnosis. She's come to realize the need to slow down. And she's also recognized that working from home has really benefited her during lockdown. Joe told us how she's now focusing on creating an active community in her local area, particularly for people who are out working Still during the day, but they're living with MS. And Jo herself is still working full time.
Then we heard from Grant Miller... Grants got a diagnosis of progressive S. But it all happened a long time ago and his first symptom was 40 years ago. He didn't put the pieces together until he saw something on TV about multiple sclerosis. And he then went and asked his neurologist who confirmed it to him, because at the time, there was no support available, there was no treatment available. And so it was a very, very different MS landscape. And in the podcast with Grant he's reflected on his disease progressing in terms of thinking about how he's required different walking aids along with his progression needs change. So I think what's what was interesting was when Grant said he was too proud and didn't want to accept he needed a wheelchair. But he came to the point where he borrowed a wheelchair for a weekend. And he realized how much it was helping his friends as well as himself, because his friends weren't having to hang around. So he transitioned to using a wheelchair much more. He's got a really positive outlook. And he thinks what has helped him to adjust is starting to use different mobility aids before he actually needed them. So I think with Grants disease and its progression, it's not been a rapid onset progression. So he has been able to start to use a stick or a wheelchair, before he knew he needed them. Then be able to deal with the transition. Grant also said about how much he's grown in confidence since he started to use a wheelchair and how he can just now strike a conversation with anybody. So he's got this really positive outlook, and he's now keeping himself occupied and motivated doing wheelchair marathons for charity. And I think it's amazing. So Grant's medically retired, but he does work voluntarily for a hospice charity.
Rachael Tomlinson has got a diagnosis of primary progressive Ms. But that came to her later in life because Rachel's 53 at the moment and was diagnosed in 2018. But this all started back in 2013. And she discovered from her medical notes that she had been diagnosed in 2013 But never told.
Speaker 5:02
And she used to have a really stressful job that involves lots of travelling and long hours. But the fatigue that came with the Multiple Sclerosis became such a massive problem added on to the cognitive problems that have really featured in Rachael's particular symptoms that she's just faced a barrage of frustration and recognizing that she needed to leave work and give up work has been something that she's grieved for. So she's coming to terms with not only using a job she's also had to stop swimming because of the difficulties and that she finds but what has been the biggest issue for Rachael is accessing rugby stable stadiums. Rachael's been involved in the rugby fraternity for the last 30 years and rugby is a huge part of rape. life so much though that come hell or high water. Rachel's going to go to her home games, and she's going to sit in the seat she's always sat in, even if it means that three and four other friends and supporters have got to carry her to a usual spot. So good on you, Rachel, and hope that campaigning was going to go well.
And then finally, we spoke with Holly Ford. And Holly is a young person with primary progressive Ms. And her diagnosis story shows the amount and level of frustration that she had to go through because she was 24 when she eventually got the diagnosis, but she'd had to go to her GP three times to be fobbed off. And then once the wheels of diagnosis started turning, she has three sets of MRIs and tests before she got the diagnosis. So she's coming to terms with (in quite a short space of time), adapting from being an active gym going person to someone who's using a wheelchair full time. But she keeps going in life by not sweating, the big stuff. She's campaigned for drugs, she went to Parliament to campaign to get some disease modifying drugs approved for use in progressive Ms. And the future is looking really positive. So what's apparent in all of the diagnosis stories are the following four areas. Firstly, the sheer grit and resilience that all my guests had show, to get a diagnosis to live with multiple sclerosis and to deal with change. Secondly, the length of time that it's taken to arrive at a diagnosis shows absolute perseverance and self belief to not just Given that the first knock back because they knew there was something going on with their body. Thirdly, a gradual realization of the need to make changes in terms of working in terms of lifestyle. And fourthly, all the people I've spoken with are involved in doing things that are benefiting other people. Yes, they might be linked to their own unique circumstances. But ultimately, the benefits are going much wider. And I think what it's clear to see is that when you've got a diagnosis of such an illness, you can still find purpose and still find a reason to keep going. So do listen again to these episodes, and I'll put the links to the individual ones in the show notes so you can go back and see the one that you want.
Speaker 9:03
Now, next month I'm moving on to Ms lifestyle.
I'm going to be covering different topics over the coming months. And in June I've got guests on some of the main recommended MS dietary regimes. Now right at the top, it's worth me letting you know that I've spent one year following the OMS lifestyle. So our vegan with fish but I'm allergic to shellfish and so I followed the dietary elements of Overcoming Multiple Sclerosis lifestyle. I've also spent another year following the Wahls protocol, which is many in many regards, a complete opposite because it's organ meats. And it's taken advantage of some of the nutrients that are in the awful that we often don't teat. So I just wanted to let you know that I've done those two things, I've now settled into a mixture of different dietary approaches. They seem to be working for me, I've cut out dairy, with one exception, because whatever adjustments I've made, chocolate remains a part of my life.
So with each of the regimes that we're going to be talking about, I've got a set of questions that will be coming out from the people that I'm talking with. So I'll just tell you what I'm looking at finding out the origin. So which country and what was the sort of basis for this regime coming to fruition? Is there any UK coverage, people that are doing it groups, support, et cetera, understanding the fundamentals of the approach and trying to unpick what makes it different to other MS, dietary lifestyles, I'm keen to understand any evidence-base for the recommendations. But also, maybe the anecdotal base because scientific evidence, double blind trials and everything else is not always easy to obtain. I've got no affiliations. I'm not here to make money and to push certain things your direction. So sometimes as we look at all the different elements of MS lifestyle, actually, anecdotal ideas are some things that we'll be talking about.
Coming back to the diet. So I'll also be wanting to understand how easy is it to adopt this lifestyle and what's the increased cost? So is it organic, only do you need to get supplements? And then finally, how many people typically do we think are involved in doing this? Particular lifestyle, and other in any communities and support that you can find. So, hopefully a very wide ranging view of the different dietary lifestyles that are out there that you might find and read and hear about. So that's going to be a great month in June. Keep tuning in and take away what's relevant and useful for you.
Thanks so much for listening to today's ms show.
Copyright: Bron Webster 2020
Caryn Franklin is a Fashion and Identity Commentator / Agent of Change.
She is a Visiting Professor of Diverse Selfhood at Kingston School of Art and Co-Founder All Walks Beyond the Catwalk.
Instagram available at @franklinonfashion
Copyright: Bron Webster 2020
Brands mentioned:
https://samantabullock.com/ - SB Designs
www.theablelabel.com
Transcript:
This is the MS show podcast people with multiple sclerosis and their families who want information and inspiration. I'm Bron Webster. I've been living with Ms for over 20 years. I'll be sharing with you tips stories from ways to keep going with me.
Unknown Speaker 0:24
Welcome to this really special episode, I had a huge treat when I caught up with one of my childhood heroes who has got experience of multiple sclerosis, Karen Franklin MBE, who I remember from her clothes show days when I was a teenager. She's a fashion and identity commentator. She's a visiting professor of diverse selfhood at Kingston School of Art and today we're talking all things humanity inclusivity clothes and their effect on our moods and our thoughts.
So here I am with Karen Franklin. And I'm really looking forward to talking all things, clothes, colors, selfhood, and having a really good chat. So welcome to the show, Karen.
Unknown Speaker 1:27
Thank you very much.
Unknown Speaker 1:29
I know I've got loads that I want to talk to you about. But I thought that where I was coming from, is my own experience of not being able to wear what I want to wear. Not being able to get dressed always very easily not being able to wear high heels. So I'm sitting in the garden in my crock sandals because I can no longer wear flip flops and It's just a massive change that is wrapped up with my health condition. And so when I have, when I saw that there was an opportunity to talk to somebody about how I can and how everybody else can become more positive as the result of how they look. So I've got to talk to Karen. So could you sort of tell us a little bit about your background, your experiences and what you really try to focus on?
Unknown Speaker 2:32
Okay, so um, first of all, what I would like to do is maybe give you and everyone who's listening, just a bit of immediate kind of help, inspiration, comfort feeling about the conundrum that you've just highlighted. What we are seeing is more and more companies recognizing that there are services to be provided in closing thing that as yet have been ignored. Now, you know, now I know that business follows profit and money talks. And so we understand that there is the purple pound, as everyone knows, is is unexploited. And so therefore,
Unknown Speaker 3:20
companies are waking up to the fact that actually producing garments for the thin white teenager
Unknown Speaker 3:30
and aiming all their marketing at that person when they have a very limited budget doesn't make good business sense on the one hand, but also there are, you know more and more young creatives who are enlightened and who want to sort of broaden their practice and to reach out to people who genuinely need their design skills and need their services. They don't want to kind of have to fit into a market that is just so on thinking. And so kind of recognizing or services that could be provided. So I'm seeing that because I work in fashion education a lot. But you asked me to tell a little bit about myself. Certainly from 2009. I've always been very vocal about the fashion industry's promotion of unachievable audio ideals, specifically on behalf of women. But also recognizing that men also are now under increasing pressure to conform to a very narrow ideal of masculinity. And in 2009, I, you know, I had felt myself while I've been in this industry, for nearly was coming up to 30 years at that point, and I don't see it getting any better and I'm going to challenge it so I created co founded a campaign called all walks behind the catwalk with the international supermodel Erin O'Connor and a PR expert called Debra Bourne. And we made a big sort of lobbying campaign it was all unwaged and unfunded where we were not just talking to our own industry, but we were we had outreach to mental health experts to government ministers, we worked a lot with Joe Swinson and Lynn Featherston when they held the Minister of equalities positions. And we worked with big organizations like Girl Guides have a quarter of a million young women in their membership to to really provide the tools to and the language to challenge this unhealthy ideal that fashion promotes and within that broaden the way that it promotes what we see in Fashion imagery to include much broader spectrum of size, age, skin tone, face. Now what I didn't foresee because I thought I've spent most of my career challenging fashion people not to use desperately thin models. I thought they would rally against it as they always did too. And that when I was asked did I think we when it would be we would see people with 40 different physical disability on the catwalk. I said, I don't know if we will see that. I don't know if you know, fashion designers are going to be flexible enough since you know, for me, it's been a, you know, 2530 year battle, to to just challenge you the use of very thin models. But I'm just thrilled to say that that has begun those barriers have begun to be broken down. So we have people like Kelly Knox on the catwalk who is a model with a missing forearm, Jack Aires, who is a model who has a prosthetic leg, and I have seen imagery of models were in wheelchairs. And further than that we have we do have people in your three likes Samantha Bullock, who has started her own range she is.
Unknown Speaker 7:28
I think she's certainly an Olympian. A top athlete, sorry, I'm struggling for the correct name for what it is that she does. But she also in a wheelchair has created her own range of clothing, understanding what is needed for people with body difference and it's inclusive. So it's not just aimed at people with multi difference or disabilities that they're living with same to everybody. But it takes takes in an understanding around fastenings. And there are specific garments that you can buy that you would wear, should you need it, you know, it's adaptive clothing. She's one person who has she's called SB designs. She's on Instagram. And then I came across another young woman who has made her own company. It's called the Able Label. And hers is clothing that addresses people, people's needs when they have very little finger strength or little, very little movement of their lives. So getting dressed is is thought out, you know, you don't have to sort of lift your arms up and struggle pulling something over your head buttons behind you. So I'm very excited to think
Unknown Speaker 8:51
that we do have,
Unknown Speaker 8:55
we do have kind of young, innovative people out there doing things stuff. And on top of that, we now have the big brands looking at what they're doing. And that's an area that big brands are talking about.
Unknown Speaker 9:08
I think that's such a positive result. And you would have been right at the start of that, with all the campaigning work that you've done. And lo and behold, you know, the fashion designers and the young people that are coming up, are making these real positive tracks to try and address those nine know exactly that fastening the buttons to put on a shirt. Forget it. So, you know, it's just elastic all the way or Velcro. And yeah, it's really it's really important. I think that this adaptable clothing is starting to come to the fore. So that is all really really interesting stuff. And I think the work that you've done around the diversity and challenging that. Making that first step to make the challenge and seeing where it's going. We're seeing where it's gone so far. It's great. As exciting is, certainly what I've seen is that,
Unknown Speaker 10:16
you know, the normalizing body difference is vital for all of us. So obviously being seen and being visible, presents its own kind of benefits. But for people who were unaware of their health privileges, to see a range of a sort of presentation of a spectrum of humanity, is there are benefits for everyone, so that we can begin to see a situation in where we are all. You know, we all come under the umbrella of humanity. I think there are an awful lot of people who you know, we only engage in social media. comparison. And often people's aspirations are so unachievable because of the post production work that is done on fashion imagery, even mass media imagery now, and the celebrity lifestyles that are promoted, you know, they have huge followers, and of course, the normalization or sort of augment its augmentation of appearance cosmetic surgery, that, that young women, particularly young women, who are incredibly susceptible to ideas of what it is to be
Unknown Speaker 11:40
to appear attractive
Unknown Speaker 11:44
when they can see a broader range of audio and beauty ideals. This impacts really positively on their mental health and reminds them that it's not about aiming for this unachievable body ideal that you know naught point two I don't know percent of humankind naturally achieved and and on top of that, for us all to know that and I've spent a lifetime with very beautiful human beings who we look at and think, well, life must be really hunky dory for you because you've been blessed with this incredible appearance and good health. But those people have the same health, mental health issues, the same kind of worries about who they are and are they good enough? They don't kind of they don't walk around feeling ultra great, because that's their normal. So I'm not asking us all to feel huge amounts of empathy for them in particular, but I'm just saying that we put this stuff onto people don't worry about we make an assumption when we look at them about how they're living. Their life and that, you know, especially if they're attractive, and there are many studies that show that, you know, attractive people are awarded with all kinds of undeserved sort of ranking. But that doesn't mean to say that they're living that life.
Unknown Speaker 13:22
We Yeah, we're putting them on a pedestal, aren't we?
Unknown Speaker 13:24
Yeah, it's what we project onto our onto them, you know, but also on to ourselves, you know, self image is a hugely powerful tool. And that's,
Unknown Speaker 13:35
that's something that does fascinate me. Hmm. So that sort of leads me quite nicely onto the next question about self image and identity. And it intrigued me as to your thoughts about how can a disabled person like myself, so not necessarily a wheelchair user, but they've got things that are making them feel unhappy about their appearance? How can they either maintain their identity or carve a new identity
Unknown Speaker 14:10
for themselves? So no, this is the the question that that everybody asks, you know, when people come out of relationships that fit, you know, women especially the first thing they look to do is redefine themselves visibly. When we go into a work environment and we want to impress we, you know, pay a lot of attention to what the clothing is that, that we'll do that when we when we go out for a special occasion. You know, more often than not, we've put a great deal of effort into what we what we want to wear. For you. Choosing clothing is an act of self expression, no matter what we think about say fashion and trend and you know that that's a separate aside You know, that's the industry talking to itself and trying to trigger people to buy more clothes. But the act of making choices, personal choices about our style, is one of the most self empowering things that we can do. So recognizing that, and studies show that we read someone in under a second, we take a very quick kind of visual image of them. And our brain has already made all kinds of assumptions based on what we're seeing. And you know, some of those are sort of obvious things. You know, the minute we look at someone we could place their age, even if we did if we were shown a picture for it's a 10th of a second that psychologists found that we can make a huge amount of assumptions. But so we could have a picture flashed up at us, we would know that a We would get a sense of their emotional disposition by what the expression they were wearing on their face. And we'd have an understanding of how they felt about themselves by what they were wearing. Because, you know, the biggest part of our body is covered in cloth. We have face and neck kind of for people to read. And then most of it is covered in cloth and so those are the choices that we can be fully in control of, and some of the cliche stand truth, you know, suiting and tailoring delivers authority and power dressing, color delivers spontaneity, and emotional sensation, we cannot help but respond to bright color. In similarly dark color delivers a certain sense of sobriety and, and again or authority but you know, the mood is very good. different patterns, we, you know, the playfulness, of pattern, the rhythm, that pattern suggest, and the punctuation that that can suggest. We take all these things and we if if we say to ourselves, it doesn't matter what I wear, I don't care what I wear, we do do ourselves a great disservice. So, I would say, clearly, we all work within our own framework. You know, ask anybody and they'd say, Well, I really like the color red, but it doesn't suit my coloring. So I choose this or I'd really love to be able to wear those shoes, but I can't stay up writing them so I don't. But within that we can make a huge amount of choices men and women. And I would say to male listeners at this point.
Unknown Speaker 17:58
You know, women are a kind have highly visually literate and they notice your choice of clothing.
Unknown Speaker 18:07
And, and clothes can be a great conversation starter. That's one of the things that I use clothes for where I can interact with someone and say, Oh, I love the color that you're wearing, or I love the you know, the way you've put that together or that's a fantastic jacket, or did you get that from? I can have that conversation with any stranger anytime of the day? And once they've answered that question I've gotten in to then move on to something else because I know that I've, I have opened the conversation on a positive note, and they feel noticed and they feel complimented, who doesn't like that? And then I can carry on talking. And so you know, in these times where we're looking to make authentic connections with people clothes, give us that in so When we know that our clothes have that power, the choices we make to get dressed can become purposeful. And so we can, I would say to anybody who's singing Yeah, but how do I start that? Okay? So create a capsule wardrobe for yourself so that you have a minimum of clothes that you know work. So you might have something that works on your bottom half, whatever it would be trousers or skirt, jeans, sort of maxi dress, maxi skirt, whatever it is that you actually think, yeah, I'm safe with this. This is really comfortable. It has the waistband that I need. I'm going to look for more of this type of garment. And I'm just explaining this in a very simple way. So that then you can say to yourself now on the top because this is what draws everybody's attention to my face and my expression and this is how I will communicate my my inner self through my face and my mood and my eyes. So the top that I want to wear, I want to give people a sense that I am optimistic. So I might choose something for men It can be as simple as a block color shirt or polo shirt or piece of knitwear. But similarly if you really like your gums guys, you know, you know you can style it up with much more than that. My husband loves big fabric, colorful scarves, big sways the fabric and he often gets women commenting about oh, that's really lovely color. I don't think I've seen a man wearing magenta for a long time and he's, you can talk all the way to work if he's sitting on the tube for instance, you know, based on his choices scarf in the morning. But it's the same for women in that when I'm sort of looking at people I don't know I am, I make connections with people through feeling that their clothes are an invitation to me to make a connection. So it can be as simple as keeping sort of the bottom half, plain and simple, but then choosing garments that allow you to talk about what an optimistic person you are, what an open minded person you are through your choice of color or pattern. And then the small details on clothing Never underestimate just the small things like for women as sort of lace insert or some specific sort of focus or detail pattern. necklines are a vital necklines give us a sense of that person emerging. From the clouds and proportions, you know where the garment ends on your body, it may be that actually especially if you are spending a big sort of part of your time sitting down that you don't want the government to sort of wrinkle up around your tummy and hips and you do choose to get a shortened because gives you a much straighter line all these things are choices. And most people if they feel I don't know if I'm confident to make choices about that,
Unknown Speaker 22:38
we'll have a friend who is
Unknown Speaker 22:42
and is very happy to say that suits you and this is why that suits you that doesn't and that looks good on you. But the sleeves need shortening or so it's one of those things that you know, we we can if we choose Bring center into the center of our lives and get better at it. I've probably gone on at length there, haven't I but you know, you did ask a clothes enthusiast question that I just couldn't. I couldn't. I could carry on to the next hour, if you will.
Unknown Speaker 23:19
best not to
Unknown Speaker 23:23
know, but it's all great. And there's lots and lots of ideas and tips that you've just spoken about. And that's something that I do try to do is put something that's a little bit quirky somewhere, not when we're in lockdown and, you know, sitting in my garden, yeah, I think it's really important to just think about an item that can express you. Yes,
Unknown Speaker 23:49
there are also studies that show that not only do we convey to other people information about ourselves through our clothing, but we can actually affect our own mood and our own brain cognitions because of our it's the sort of jewel actions of our perception of that garment and the wearing of it so that when we put something on that we associate with, right, I'm going to be doing some meetings today or I'm going to be speaking someone on FaceTime or on zoom. This has always been a great top for me. You know, I love the way I look in it. It looks quite You know, it has a sort of executive feel to it. It has a nice fit to it. But we it's like an athlete putting on their gear. It's like a doctor putting on his lab coat. A policeman. Look at that, that sexism there a doctor putting on his lab coat
Unknown Speaker 24:58
or putting on their lab coat runs deep doesn't it?
Unknown Speaker 25:03
Does biases, I'm gonna take myself off and smack my bottom now.
Unknown Speaker 25:10
That sounds
Unknown Speaker 25:14
you know, a police officer putting on her uniform there we are with writing it. You know we perceive ourselves to be when we're in that type of clothing we perceive ourselves to be more effective than we would if we were just sat there in our pajamas and it's called enclosed cognition. And it is a you know, it is a psychological finding that actually putting something on that we have previously felt good in will work its magic when we put it on again. And that's why I think of my club, my friends, my closest friends. My friends aren't close my clothes are friends.
Unknown Speaker 25:59
So cross my fingers. Could something as simple as having a favorite hat or a favorite scarf, make that difference?
Unknown Speaker 26:09
Yes, there. There are also other psychological concepts called essentialism, which is where because of the story of that garment, like it might be, as you say, a favorite scarf. It's bought as good luck in the past, it might have been a special gift. It might have been, you know, passed down to us from a much loved relative that we imbue that's that special garment, let's say it's a scarf with the qualities of those experiences or that person that has passed it down to us. And so when we wrap ourselves in it, we feel automatically we take on some of that understanding. I mean, a good example for me is you know, maybe to give it is my Husband travels a lot. And he's aware a lot. He's a documentary filmmaker. And not all the time but you know sometimes when I just feel Oh, I wish you were here What a horrible day it's been today. I just wish you were here. I will put his jumper on in the evening and making be there you know, it's it's it's a it's just a god what a golden but it makes me feel better.
Unknown Speaker 27:27
That's how.
Unknown Speaker 27:30
Yeah, interesting. It's exciting. I also, I definitely concur with everything you've said. I mean, I know that if I'm in my pajamas
Unknown Speaker 27:43
and I spent a lot of time in my PJs
Unknown Speaker 27:47
and I decided that I'm going to speak to people. I am not nearly as effective as when I have put some lip here on and put my shirt on or whatever. I'm going to On So, you know I've experienced it. Yeah. And I've experienced deciding to wear a yellow top for the purpose of lifting my mood. Yeah.
Unknown Speaker 28:12
And everybody else's around you people love bright color. And I bet you've you know if you have connected with people I bet that they have gone Whoa, what a bright color. So you know, it's like it's it lifts us all, doesn't it? The other thing because I was looking up, which I wasn't I wasn't surprised to learn but I didn't think about it. And yet, I do do it for that because I did it coming to talk to you. I put some my favorite perfume on to talk to you. And I did it to kind of sharpen my mind that I was talking about image. And that was one of the things that came up for both men and women. Is that fragrance that that they like not just any old frequency not just something that they got given for Christmas and it's like, but that they have taken the time to you know to choose and like and that again that fragrance is something that they have worn on other occasions so putting it on feel celebrate tree and putting it on film fills us a recognition of a special sense of self that that also both in men and women was was high up on the list of things that makes us feel better.
Unknown Speaker 29:39
It's really interesting and it's definitely not something that I've ever considered.
Unknown Speaker 29:44
Oh, wow, there you go. So yeah,
Unknown Speaker 29:47
I i think that
Unknown Speaker 29:49
you know, the the feeling really of connecting with ourselves taking time to be mindful of the body that we're in, and the, you know, the interaction that we're going to have. And the way we want to people to see us is, you know, maybe something that really would only take a few minutes each day as we were cleaning it. But usually we're not mindful. So we're cleaning our teeth thinking I gotta take the bins out and Oh, God, I didn't make that phone call. You know, your anything? Yeah. But actually doing that, when you clean your teeth and thinking I'm, I'm really looking forward to celebrating myself today.
Unknown Speaker 30:38
You don't have to have a reason.
Unknown Speaker 30:40
You know, we all are out, you know, most important relationship will ever have is the one we have with ourselves. I say that to my daughters all the time, a sick of it.
Unknown Speaker 30:50
So try I love that idea of celebrating ourselves, and just each day telling ourselves that's what we're going to do. Yeah, let's celebrate. ourselves and celebrate what we can do. Yes, absolutely. And what we are going to do,
Unknown Speaker 31:06
one of the things I think COVID might have given so many of us is a sense of, we don't have to be out there in the world making a big noise, being at home, as we all are, and ringing people up to say, how are you?
Unknown Speaker 31:27
And, you know, thinking about the things that we can feel grateful for, and anybody in it well, for many
Unknown Speaker 31:36
of us in the industrialized world, when we look at the way this has impacted people in very low income development, developing countries, you know, for them, it's a matter of, you know, the average person has got less than one pound in savings in many of the developing countries, so they just don't have any buffer. Wages are being withheld by industrialized countries, certainly in the fashion industry. Just a little bugbear and we are talking about close so I'm just gonna broaden that is, you know, certainly what I'm seeing in my industry at the moment is lots of young designers, more businesses, all turning over their studios, you know, just going in there on their own sewing masks, sewing peepee gear, sewing scrubs, I think sitting at home and recognizing what we do have and what we can do from our homes, to be of service to others and to keep things going. You know, that. For me, that's been a huge time for for mindfulness and bringing up people that I wouldn't normally you know, normally find the call to bring up
Unknown Speaker 32:56
and, you know, we're all incredibly when we become mind for, you know, we get a sense of what we really can do.
Unknown Speaker 33:06
I think that's, that's got to be the sort of key takeaway from all of this is to spend that time and be mindful about the decisions that you're making. Absolutely, to enhance your day and to enhance other people's days. Yes, when we're talking when we're talking remotely or on video, or whatever it might be. It clouds are so powerful.
Unknown Speaker 33:34
And they are and, and I think people often make an assumption that something is insignificant and superficial as clothing, is has, you know, very little to contribute. And I think that's the beauty of it as well, is that when you realize that it really is that simple. To make a choice that, uh, speaks to others in a positive way, that that's very empowering, you know, in itself, I would, I would love to see a situation in which clothing was
Unknown Speaker 34:16
de gendered.
Unknown Speaker 34:18
So that, you know, many of us who sort of exist on the spectrum of what it is to be human, don't feel that we have to exist in the polar sort of extremes hyper feminine, hyper masculine. You know, certainly I move around in communities where people human, use clothes in a very different way. So, like fashion shows that I've been to have been put together by, for instance, the trans community, who have, you know, who rely upon closing to help people identify them in the way that They want to be identified. But I've also worked with you know, I worked with one man who was a crossdresser, who was a cisgender sort of heterosexual male, but who felt very restrained by being kind of restricted to a life that was a, you know, an and an expression that was so limiting. And so for him being able to move around freely in female clothes was very liberating. I think Grayson Perry is a very interesting human being,
Unknown Speaker 35:41
that's how I was thinking, Oh, yeah,
Unknown Speaker 35:42
the greatest in Paris. Because actually, you know, what we often have is, you know, clothes get used as uniforms just for gender. So if you step out of your gender uniform, you're somehow
Unknown Speaker 35:57
you know,
Unknown Speaker 35:59
doing the wrong thing. You know, there could be some very extreme kind of judgments made on men, for instance, who would choose to dress in a more feminine way. But I've I've seen the power of clothing in other ways to having worked with people who have experienced childhood trauma and who want to dress in a certain way that you know where clothing becomes a comfort blanket and armor in the same way wanting to know how to use clothing to help them feel protected and for their own self concept. You know, self concept is what we think about ourselves and self image is how we present ourselves and you know, the two are, you know, two very important elements of, you know, what leads us to make that choice and to pull something off the, the rail to buy or to wear.
Unknown Speaker 36:58
So, lots of it is What is going on psychologically that is putting you down a certain route and informing some of the decisions.
Unknown Speaker 37:11
Yeah conditioning and perception of self sort of learned. rules about how we may appear
Unknown Speaker 37:20
in a mood varies from day to day. No, but we do have societal rules which in in certain places, you know, where there are sort of faith beliefs or membership beliefs to certain ways of thinking. The rules get very strict and can be very repressive. But I would say that even when we look at gender and the way in which you know, especially little boys, express interest in women's clothes and girls clothes in, in beautiful fabrics in colors, In soft sort of textural feelings and are denied that experience because of society's expectations of what masculinity must, you know, conform to certainly think, as young girls have more of an opportunity to experience themselves in football kits and filthy jeans and ballerina outfits without anybody making judgments, but not talking to moms who say that, you know, they they're worried that somehow their sons will be well received threats if they take those choices outside of the house. And they're not wrong. Yeah.
Unknown Speaker 38:50
No, I think I think from those two boys perspective, I think it is very, very limiting and why would they not be Absolutely excited by the prospect of a girl's clothing and velvet or lace or flounce in us or whatever it might be. You cannot you can totally understand it.
Unknown Speaker 39:14
Yeah, absolutely. And why they just wouldn't want to wear that whenever. And, you know, but these these kind of we have strict societal rules about that, don't worry. So clothing, you know, just coming back to how powerful clothing can be. How liberating and how restrictive. You know, it's all in our perceptions, isn't it?
Unknown Speaker 39:40
Yeah, and I think we've got it is a TAS or request to use that close to help with everything that we're feeling as a barrier.
Unknown Speaker 39:54
There's that and i and i think that there is a job to be done by corporations who You know, we touched on it at the beginning of this talk who are clearly looking at markets that they would like to address. And if they do it well enough, then you know, that means they are providing a good service. But, you know, my thing is always to encourage them to do it from nearly a human inclusivity perspective, is that, you know, we are all different and that it can be really, really
A special episode on #WorldMSDay with Trishna ... Trishna Bharadia, multi-award winning patient advocate, is a well known face in the MS world. Diagnosed at the age of 28 in 2008, she has since worked hard to ensure that the voices of people with MS are heard throughout the healthcare journey. She is an Ambassador/Patron for several local, national and international charities. In 2015 she was chosen as one of six people out of over 11,000 nominations to take part in a special four-part series of Strictly Come Dancing on BBC1. "The People's Strictly for Comic Relief" broadcast Trishna's MS story to millions of people in the UK and beyond, highlighting many of the hidden symptoms of the condition. She has won multiple awards for her work, including being recognised by the UK Prime Minister's Office with a Points of Light Award. In her spare time, she loves keeping active and regularly attends inclusive dance and Zumba classes.
Twitter: @TrishnaBharadia
Facebook: www.facebook.com/trishnabharadia2015
Instagram: @TrishnaBharadia
LinkedIn: https://www.linkedin.com/in/trishna-bharadia-b8b46163/
Copyright: Bron Webster 2020
TRANSCRIPT:
Bron Webster 0:03
This is the MS show podcast people with multiple sclerosis and their families who want information and inspiration. I'm Bron Webster. I've been living with Ms for over 20 years. I'll be sharing with you tips stories from ways to keep going through them and
I'm really pleased today to welcome to the podcast Trishna Bharadia. Trishna is a health advocate and patient engagement champion for Ms. And it's a real privilege to have you here today. Trishna. Thank you.
Trishna Bharadia 0:40
It's a pleasure to be here. Thank you for asking me.
Bron Webster 0:42
Right. What are we going to talk about today? So Trishna a nice place to start is just a little bit of your story. But before you go into it, I did see online that you are approaching your 12th year have been diagnosed This is literally later this month.
Trishna Bharadia 1:03
It is say the middle of the middle of this month. And to be honest, I don't even know where those 12 years have gone. So I was diagnosed back in May 2008. I was age 28 at the time, and I'd had several years of symptoms in the run up to that diagnosis. So my initial what we now know was probably my first relapse, I'd lost the strength in both my hands. But as is very common with many people who were eventually diagnosed with MS. It was put down something completely different. And I was diagnosed with repetitive strain injury. And I was sent for physio in time things got better forgot about it, but then about three years later, I completely lost the feeling down one side of my body. And that's really what put me on the path. To what eventually led to my ms diagnosis, because I was then referred to a neurologist, I was sent for MRI scans, I had a lumbar puncture. And in the meantime, I also started to experience other symptoms. So said particularly sensory issues. So I had L'Hermittes sign, which is where you flex your when you flex your neck, I was getting electric shock sensations. Now one side, I was also getting burning and pins and needles and tingling sensations. And so after two MRIs, a whole host of blood tests to rule out other things and my lumbar puncture. I was eventually I was given the diagnosis of relapsing ms in May 2008. And that's the date that I mark now as my MS. aversary. So you get a bit of a positive twist there. Yes, I do. Well, the thing is, is that I'm doing We'll end up talking about much of this later on. There is so, so many positive things come out of my diagnosis. I've had some wonderful opportunities. I've met some amazing people. I've learned. I've really learn what I want out of life. I often say to people, that being diagnosed with MS has actually turned me into the person that I always wanted to be. That was really the catalyst that led me on a certain path, and it made me into the person I am now and it's put me where I am now as well. And that's the reason why I can't see it as something negative in my life. So many wonderful things and so many brilliant things have come out a bit as a result, that I think well why not market because it was the day That changed my life. At the time when I was diagnosed, I didn't know that it would be a positive change in my life. Um, but it has been and you know, it's very much the positives have outweighed the negatives. And I think a lot of that has come out of the advocacy work that I've ended up going into, because I think there is something which is always very, very positive, whereby you're taking what is a very negative situation for you, which is being diagnosed with a chronic long term in currently incurable degenerative condition and using it to help other people. And I think that's an incredibly positive and very affirmative thing to do. Which is, yeah, which is why I think, well, it is something positive that's come out with that diagnosis. So on our market I often end up so I remember when I was when I left the hospital after receiving the news. My mom and dad were with me and we stopped at a petrol station and dad said you okay trician is anything that you need and I said to him I said, You know what, can you just buy me an ice cream? deserve it? So every year now on my ms aversary I have an ice cream
so yeah, people celebrate their birthdays with birthday cake. I celebrate my MS.aversary with ice cream.
Bron Webster 5:36
That's all good. That's
Unknown Speaker 5:38
definitely
Bron Webster 5:39
and so you've said that you're a patient advocates. What is that? What is a patient advocate? What is involved in that and how did you end up getting into it?
Trishna Bharadia 5:51
So patient advocate being an advocate is actually what you make it you know, people ask me, How do I become a patient advocate? Well, exactly. Add advocacy is about helping others. Now you can do that in any way that suits you, you can do as much for as little as you want. For me, it's about putting the patient voice into the healthcare journey. Now the more you know stronger, more effectively and throughout the healthcare journey. So from diagnosis to through to drugs development through to ongoing care and support through to campaigning for better, you know, better rights, for example, access to work, etc, etc. It can cover a whole spectrum of things. For me, I've ended up very much concentrating, like I said, in the healthcare journey. That's something that was really interested me, essentially because when I was diagnosed my den health teams and then urologist essentially handed me this diagnosis and then sent me away with no information no signposting, no guidance as to where I should be going for, you know, support information, etc. You know, never once was the MS Society mentioned, never once was it mentioned, you know, where I could, for example, look into, you know, clinical trials, for example, and none of that was offered to me and I took the attitude, well, if that's happening to me, it must be happening to other people. And it shouldn't be like that. And so that's the reason why I've been very much interested in improving that healthcare journey. Other people might be get involved in advocacy, through fundraising, or through one to one support, or they might volunteer as I don't know as a treasure After that the local group of the MS Society is very much is what you want to make it. And one thing that I do say about advocacy and about particularly the volunteering side of things, is that you need to be able to enjoy it because if you're giving up your time in order to do something, then you should be enjoying what you're doing. And you know, I all of my advocacy work is done in my essay in inverted commas spare time, I have a full time job. I work as a translator for a business intelligence company. So if I'm going to be spending my evenings and weekends and you know, my holidays, etc, doing advocacy work, but of course, I should be enjoying it. I think that's really important to remember is it's about, you know, what you want to make it and as I said, you can do it as the little or as much as you want, you can do lots of different things. It's about finding what works for you,
Bron Webster 9:07
and where you're passionate; as well as passionate enjoyment. And like you say spare time is a precious commodity. So it's salutely.
Trishna Bharadia 9:17
It especially, I mean, fatigue, for me is a real issue. It's one of my main symptoms of Ms. So if I have, by have restricted and energy levels, I want to make sure that where I am extending energy, I'm extending it in a productive and positive way, but also in a way that I enjoy. Because why would you expend energy on something that you don't enjoy when you've already got limited reserves?
Bron Webster 9:47
Hmm, yeah, absolutely. And so what sort of things are you actually doing on a day to day basis that was part of the advocacy.
Trishna Bharadia 9:58
So I do a huge variety of different things from I, you know, going to speak at conferences and events, internal meetings, at healthcare companies to writing I write about my experiences I write about patient engagement, I review content, so patient, particularly patient facing materials, to make sure that they are relevant, that they're in the correct format, that they're understandable as well, because often, patient facing materials are written by people who aren't necessarily part of that patient community. So you need to make sure for example, that the tone is right, that it's not patronizing, that it's using words that people are going to understand. I also advise and people consult me on things like disease awareness campaigns, about putting together patient engagement strategies about things like if they want to run a focus group, for instance, how do they engage with the patient community? How can they make sure that the focus group that they're putting on is patient friendly? So things like accessibility, what time it should be? Should they be providing food and drink, things like that. So it's, it's very much the whole spectrum of things. Another thing that I do, which I really again, I really enjoy is I often give interviews in the media. So if there is a new, I don't know, a new clinical trial, for instance, that's appeared in the media and it's to do with MS, then often, particularly local BBC, media and radio stations will contact me and say if you got a comment on this, I've done quite a lot of interviews with the BBC Asian Work about living with chronic illness, about what is Ms about disability and the stigma and the stereotypes that sometimes happen within the Asian community. And as well as that I also work with, with the NHS, with healthcare professionals on things like shared decision making, how to ensure that your clinic appointment is patient friendly. There's a whole range of different things I am. I just enjoy it. I get to work with lots of different organizations, from like I said, from industry and healthcare companies to lots of different charities to you know, new religious and other people living with chronic illness and particularly, obviously, particularly Ms. And so I get that I get that opportunity to interact with lots of different they're called stakeholders. In in the health journey,
Bron Webster 13:02
so thinking you said there about the Asian ms community. And that is something that I'm really not aware of how ms affects other cultures. Is that something that
Trishna Bharadia 13:18
you kind of
Bron Webster 13:19
felt that it needed a greater voice and that you wanted to sort of speak up more for that community?
Trishna Bharadia 13:28
Definitely. So within the Asian community, there is still a lot of stigma and prejudice attached to chronic illness, serious illness, disability, and particularly if you're a woman, because as women within the Asian community, we're expected to be everything for everyone. So we're expected to be expected to be a good wife, daughter and sister mother, etc, etc. And there's a lot of misunderstanding, there's a lot of, there's a huge lack of knowledge around what Ms is because traditionally MS is being seen as a Western disease, it's being seen as a Western illness. And you know, I know people who would, Asians who were diagnosed eventually diagnosed with MS, or even told by neurologists, or it can't be ms because Asians don't get Ms. Whereas actually, particularly within the within the second and third generations of you know, Asians who have been born and brought up in the UK or in the US, etc, etc. And we have just the same, you know, risk factors as everyone else and actually, more and more people within the Asian community are being diagnosed with MS. So I thought it was incredibly important that we get that out there. Because, you know, just one example, I know somebody who has an axe, she's around the same age as I am, she's Asian. And they've hidden it from the community and from the extended family, because of the reactions and the experiences they've had, when they had initially disclosed it to people. And the reaction for so often, you know, people say things like, Oh, it's karma, you've done something bad in a former life. You know, how are you going to have children? How are you going to bring up children and no, you're useless to me now. So I'm going to divorce you and that's, that's still there. And those, you know, stereotypes of if you're diagnosed with a chronic illness, then you become useless to society. And I want to use Smash those stereotypes say, hey, hang on a second. No, that's that's not the case. And I think the only way to do that is eight from within the community itself, because you need to have an understanding as to why those attitudes are there. But also, it needs to be done in a way that that it doesn't judge the reasons why those attitudes are there. I think if you're doing it from outside the community that becomes much more difficult. Having been born and you know, brought up within that community, I can understand why some of those attitudes exist. And having that understanding then helps you to change those attitudes. So yeah, it's something which I'm very passionate about is one of the reasons why Asian ms was set up of Asian MS is one of the national support groups that works under the umbrella of the UK, Ms. Society. And it was set up many, many years ago by basically somebody who met someone else who was an Asian who had MS and was basically "Wow, I never knew any other Asians had Ms". So they've set up this support group. And it's very much it's about having a safe space to be able to engage in these discussions, raise awareness within the Asian community in a culturally sensitive way. And I think that's really important that there are cultural sensitivities that have to be taken into account. Because if you don't, then there's a great danger of just putting your foot in foot in it. And that, you know, that's not going to get the message through people just won't listen.
Bron Webster 17:50
Yeah, and that's a really important message, I think, for everybody listening and particularly if anybody is from that community. To know that that support is out there, and how would somebody find that support? Would they look online?
Trishna Bharadia 18:06
Yes. So if you go onto the MS society's website, and there is a section on the website, which is dedicated to Asian ms, and on there, you will find past editions of the newsletter, you'll find our social media details. So we're also on Twitter or on Facebook as well. And so yeah, it's about like, it's about having the opportunity to engage with people from the same cultural background, and people who have an understanding of what those sensitivities might be.
Bron Webster 18:41
Yeah, absolutely. Because to get a diagnosis is isolating enough. Exactly, but to then not be able to see people or know where to find people to talk to. That is just a further a further issue. So definitely, that's important. Do you feel personally Trishna Because of those community pressures, do you feel that you've got even more to prove?
Trishna Bharadia 19:07
I do
Bron Webster 19:08
you are really really, really busy, aren't you?
Trishna Bharadia 19:15
Yeah, no, I do feel like Yeah, I do have something to prove.
I think and it's one of the reasons why I was so grateful for the opportunity to do Strictly Come Dancing, because not only was I representing the MS community, I was representing Asians who have disabilities Asians who are living with long term conditions. And television is obviously such a visual such a visual media that people could see I was essentially a brown face with MX with you know, hidden disability with a long term condition. But I was doing all these things. And I think that was very powerful. I had many people contact me after the show to say that they sat down with their families, and watch, watch the show. And it helped them to engage with their own families and start conversations. Because I had been so open about my own journey. They felt that it was impossible to open up about their own because they felt like Actually, I'm not. I'm not alone. And I think that's, that's really important. And like I said, it was about it was about showing the world what, what can be possible. And don't mean don't get me wrong, it's I was very aware that I didn't want people to go away and think that everybody with Ms would have been able to dance and jive the same way that I did, but it wasn't about actually what Did it was about the attitude that I was conveying. And I think that, that that's what the difference is. It's about saying, well, this is what I want to do. This is how I want to meet my life. And there are plenty of things which I'm which are beyond me, you know, I like it for me running a marathon, just that's not within my physical capabilities anymore. There are plenty of people with MS. It is within their physical capabilities. It's not within mine. However, I don't I don't think to myself off. You know, I can't run a marathon and that means I can't do any exercise. I think about what are the things that I can do? And is that I think that's the attitude that I really wanted to put across in the show. The fact that if you have disability, if you have chronic illness, don't write us off.
Bron Webster 21:55
It's really important to find what you can do. Yeah. And then Get on with that and I know you've ended up going from a really serious hockey player. And you've transitioned into Zumba now. Yeah, and I think all of this will have stood you in fantastically good stead when you went on to Strictly
so what what was your sort of hockey background?
Trishna Bharadia 22:21
So my hockey background, I was literally I was more or less born with a stick in my hand. Now. My family are a hockey family. My dad still plays he's a over 70 he plays club league level he also plays internationally, Wales as well. At the age of, you know, 70 both my sisters play my cousin's uncle's, it's in the blood and played hockey basically all my life and to quite a high level as well. Well, I played county level I played for the first 11 at my university, I played a very good competitive league level as well. And I continued to play even after my diagnosis, I was slowly having to make adjustments. So first I started, what I say moving backwards down the pitch. So I've always been a in the attacking front line, I was a right winger or a centre forward, which involves a lot of running and you have to do a lot of sprinting has to be fast and agile on your feet, etc, etc. And I was finding that fatigue was becoming an issue, my reactions were becoming much slower, and I started to move further down the pitch. And when I eventually ended up having to give up hockey, I was actually in the position which is known as a sweeper. So it is basically the last person before You get to the goalkeeper. And it was just, it was something which I felt that I needed to do in order to continue to play just in the same way that in order to continue to play, I had to make adjustments to the amount that I was playing. So at the point of being diagnosed, I was often playing two matches in the weekend and I was training twice a week during the week. And again, it got to a point where even just playing one match was wiping me out for two to three days. And as much as it it was heartbreaking. It was like losing a part of me to stop playing. I knew that it was the right thing to do because like I said, I was wiping me out. I was taking me two to three days to recover from a match when you work full time. I just got I couldn't do that. I was also getting injured. more often. And part of me started to doubt myself thinking, am I getting injured more often, because I'm getting slower, I'm getting more tired on the pitch much faster. My muscle fatigue was getting really bad. And essentially, I wasn't able to get out of the way of flying balls and flying sticks and had a couple of very bad injuries ended up in a&e. And that really it not my confidence but also became scared to a certain extent. And when you play hockey, there is a there is an element of you have to be a bit fearless, really. Um, and so I thought Actually, no, this is this is the right time to stop. I was still playing at a good level. And I didn't want to get to the point where I thought I got really, really badly injured or I wasn't
I was
I started resenting the fact that I wasn't able to play at the level that I knew that I could play out. I didn't want to get to that point. And so I started to find alternatives. And there was a point at which I was doing both silver and hockey in parallel, because I thought I need to try and find something.
Bron Webster 26:21
..because you you're crazy, you're active
Trishna Bharadia 26:27
sport has always been part of my life. I've always been one of those people that I literally I tried everything, you know, I used to play a lot of netball, you know, volleyball, tennis squash, like you name it, I would, I would do it. And, and when I started to adjust the level of hockey training that I was doing, I thought, okay, if I'm not going to do hockey training during the week, let me find something else that I can do that maybe I don't have to push myself as hard because when you're playing a team sport You have to keep up with the rest of your team. With Zumba, the only person you're, you're you're essentially competing if that's the right word you're letting down or letting down. Yeah, it's yourself. And so I knew that actually, I could go to Zumba. I didn't have to keep up with anybody. I didn't have to compare myself to anybody. I could go when I was having a bad day, and I could do what I was able to do without feeling like I was letting anyone down. And so if there was a point when I was doing both in parallel, but then when I eventually gave up my hotkey, I then started to do a lot more Zumba. And so I mean, at the moment, we're in a lockdown, period, so things have slightly changed, but outside of this whole lot situation. I usually do up to four classes a week, depending on what other things I've got going on and things like that.
Bron Webster 28:09
And I've got to just stop you there and just let the listeners know that you do Zumba your younger sister teachers, some Yes, she does. Yes, yes, she's been doing that online and I joined in one last week and hoping I'm going to join in more. But I can say, watching and watching Trishna using her nimble footwork in a Zumba class and I thought that that must have taken me years. Years and years,
Trishna Bharadia 28:39
it does take pride something I love dancing I always have done and so I think for me, it was very much about well, I get to spend an hour doing something that I love and going completely crazy to some great music which again, I love. You know, I grew up listening to Latin American and Spanish music My job as a translator, I actually translated from Spanish into English. And so yeah, it's just something that I love. But I think even within, so we're in that online class, there was obviously my sister, my younger sister was leading the class, there was myself and then my mom, even within just that threesome. My younger sister lives with inflammatory bowel disease. She has ulcerative colitis. I have multiple sclerosis. And I also live with several other chronic conditions including irritable bowel syndrome and chronic urticaria and angioedema. My mom is over 70 she has hypertension and a chronic lung condition. But you know what we were all joining in. We were all doing the same thing. We were all doing what we were able to do. And I think that's a really unique thing about dance is that it can be truly inclusive and no In addition, that's my sister in admissions classes. So it's a fully inclusive environment. She is a qualified inclusive dance instructor. She has a qualification from para dance UK. And in her classes we have people with cerebral palsy, people who are who are living without mutations, people who are living with spinal cord injuries, and people who have visual impairments, we've got a whole range of different abilities. But we all come together, we all love dance, and everyone comes and you do what you're able to do, without any fear of judgment. And without any fear of like I said that you might be letting somebody down because, you know, if you can't keep up on a hockey pitch, then you are letting the team down essentially. And that's why I think dance is a really great form of exercise for anybody who's living with a long term condition. and/or a disability, because you're able to go at your own pace, there's no right or wrong, apart from if you do Strictly Come Dancing, in which case if you get the step wrong
.... They both Laugh
Bron Webster 31:13
somebody's going to sit and actually judge you.
Trishna Bharadia 31:16
Exactly. Having said that something that's a My, my, my professional dance partner on strictly was Aljaž Škorjanec .... And something that he said to me because I have always had this very bad habit of constantly saying, sorry, whenever I did something that I felt was I got the steps wrong. And he would always say to me, he said, when you're dancing in a partner dance, he said, if you think you've gone wrong, he said, that's not the case. It's always the guy who's gone wrong because a guy is meant to lead you. He said, you would never go wrong.
I'll take that.
I'm not sure quite how To the couple of times when I landed flat on my face, because I managed to trip over my own fee. I'm pretty sure I could have blamed him for that.
Bron Webster 32:09
less painful than a hockey integrated, I guess.
Trishna Bharadia 32:11
Yes, go. Yeah, yeah, so my hockey injuries have just yeah, they've been some of my hockey injuries even when I've been taken to a&e. So there was one injury I had, and we actually had to call the ambulance to take me to a&e and even the paramedics looked at my injury, and they said, we're not quite sure what to do with that. That actually looks really bad. And you think when the paramedics say that then you know that is not?
Bron Webster 32:39
No. So you are crazy.
Crazy girl. And so I was looking through a couple of your vlogs that you've done before we were talking, and I know you said that up until sort of eight years after you diagnosis, you've always seen your MS as being very separate to yourself. But that later down the line is become an intrinsic part of you. And you've taken taken it into being part of you of you. Yeah. Do you feel Do you go by the mantra of MS defines you
know that so a lot of people say it doesn't define me
and a very adamant about that. And then I know that I think well it does it just to some extent define me
and I just wondered where where you are on that one Trishna.
Trishna Bharadia 33:43
So I wouldn't say that it defines me I would say is to find a path that might lap that my life has taken since diagnosis, and I wouldn't be who I am. I wouldn't be where I am. And I wouldn't be doing what I'm doing if it wasn't for the fact that I've been diagnosed with MS. And that's, that's what it's defined. It's had an influence on the character that I've become it's had an influence on my personality, but that's also because it's defined the path that I've gone down. So believe it or not, and many people just laugh out loud when I tell them this. Naturally, I'm an introvert. I'm an introverted personality. I was painfully shy as a kid, all the way up until I mean, up until University, and then I started sort of come out of my shell a bit. But when I compare even people who knew me at university, when they see me now they say, Wow, Trisha, you like completely different in terms of your confidence, your app How outgoing you are, and things like that. And that So Ms has had an impact in that way. But it's because the path that I've gone down. So doing advocacy, I felt that one of the best ways to get my message across was to speak to people. Whereas when I was at school, if I saw somebody that I knew if I was walking in town, I saw somebody that I knew across the club walking towards me kind of thing. I'd cross over the road, because I'd be too scared to talk to them. Whereas now, I, you know, I took that I realized very quickly Well, if I want to get my message across, I'm going to have to talk to people and do very in I naturally felt very uncomfortable situations because I don't know these people. You go and speak at a conference. You're speaking in front. I mean, my biggest live audience today has been about 700 people is being me on a stage talking to over 700 People, and then you're expected afterwards to be able to go and speak with those people. And you know, the buzzword in the in the business world and even actually, in our social lives nowadays is networking. You know, I'm not a natural networker at all. Um, but it's something that I've had to learn to do. So that's then had an impact on my social life because because I've had to learn how to network. I also find it much easier now to talk to, you know, if we go out as a group of friends, and there were people in that group who I don't know, I'm no longer scared to go up to them and say, Hi, I'm Trishna You know, this is where I find you know, how do you know someone So, for example, I would never have done that in the past. So it is I wouldn't say that Ms. Has it they wouldn't say defines me I would say that it's defined the path I've gone down which is then had an influence on who I become
Bron Webster 37:01
And have was there a particular trigger points? Were you? Was there something that you did? Or didn't do that made that whole switch into becoming more vocal? Or was it just a case of repetition and keep doing it?
Trishna Bharadia 37:19
I'd be talking to people. It was it was very organic. You know, I often receive messages from people and they'll say, How do I get to a level of patient advocacy that you've got to? You know, I'd like to be able to say, well, it was a plan and I followed a plan and I had a strategy. I know I didn't like he was all organic. One thing led to another I got involved with one thing that led to something else I met somebody at you know, I don't know maybe I spoke at a local Ms. Society group event. And then in fact, somebody saw me speak and they said, Would you come to speak at our event? at conferences, what will often happen? is all you know, I'll speak at a conference. And then somebody will come up to me afterwards and they'll say, Oh, we've got this project that we're doing. And actually what you spoke about really resonated and we'd like you to be involved in that project. It's all been very much word of mouth, and all very organic. And, you know, I say to people, well, for me, the things that have allowed it to grow has been talking to people. It's been, you know, getting out there on social media, and things like that. But there was no plan. You know, it just it happened and if somebody says, Can you pinpoint any sort of flash points, there are points of which I saw a definite sort of changing path. So, one was when I changed urologist and the neurologist who I changed to Very much. He's a key opinion leader. He's very much out there in the academic and the research world. He is very proactive, very forward thinking. And he helped me to become what's known as an expert patient. He helped me to develop those tools and to also develop the knowledge to be able to sit in a room with other healthcare professionals, with people from, for example, the pharmaceutical industry, people from the regulatory side of things, and be able to have a conversation on the same level as them rather than feeling like you were the one in the room who didn't really understand what they about. So that was one key sort of what I call Flashpoint. Another Flashpoint was when I was over is very humbled to have received the the MS. society's volunteers The Year Award, and this would have been back in, gosh, I don't even remember the year now, possibly 2013.
This is the 2nd part to this interview.
Holly is a young person with Primary Progressive MS. Her diagnosis story is one of frustration.
She was aged 24 at her eventual diagnosis but she had to go to her Doctor 3 times and kept being told ‘there’s nothing wrong with you’.
Prof. Giovannoni from St. Barts in London is her consultant for Disease Modifying Drugs - Ocrevus. She has only had 2 x half infusions and has seen some slight improvement in walking and bowel function. The future looks positive and Holly has started looking after herself and putting herself first for the first time in her life.
Copyright: Bron Webster 2020
More episodes available at: https://themsshow.libsyn.com/
Holly is a young person with Primary Progressive MS. Her diagnosis story is one of frustration.
She was aged 24 at her eventual diagnosis but she had to go to her Doctor 3 times and kept being told ‘there’s nothing wrong with you’. Using some great advice from her Personal Trainer, Holly was eventually sent by her Doctor to hospital. Several MRI scans later, one using contrast dye, the diagnosis became clearer.
“If it was a female consultant it might have been a bit different”
We talk about Holly learning how to self-catheterise and also clear out her bowels - because with Multiple Sclerosis these things are common, but not easily spoken about.
“I look at the smaller picture … I look at each day rather than getting through a month”
“If I went to part-time, that’s me letting the MS win”
Initially, she was diagnosed with demyelination and was told that because of the ‘single’ event it could not be classed as ‘multiple sclerosis’. This changed after further scans.
The MS Society asked Holly to help in the Parliamentary campaign to gain approval for Ocrevus (the only Disease Modifying drug presently available for Primary Progressive MS.
Copyright Bron Webster 2020
The 2nd part of Rachael's story. Having just received a diagnosis of Primary Progressive MS (PPMS) - Rachael, now aged 53, answers the question “How is life with Primary Progressive MS?”After coming to terms with losing her job, stopping swimming and struggling to watch live Rugby League.
You can find Rachael here:
Rachael Tomlinson Accessible Rach Twitter Facebook Instagram Copyright: Bron Webster 2020
Initially diagnosed with PPMS in 2018 - now aged 53 - Rachael Tomlinson is an MS force to be reckoned with.
Initially had a mini-stroke diagnosis in 2013 and went on to be diagnosed with benign MS in 2013 but never told. Used to have stressful job involving lots of travelling and hours. Fatigue was a massive problem - she calls it her enabler to knowing she needs to take things easier.
The frustrations of cognitive problems have really featured in Rachael’s symptoms.
“probably the most frustrating part of it for me” … “to leave that [work] was devastating and I still grieve for it”.
“I don’t think I was as open about the things that were going on with me”.
“I’m disappointed that 5 years earlier I’d had what they thought was a TIA”
You can find Rachael here:
Rachael Tomlinson Accessible Rach Twitter Facebook Instagram copyright: Bron Webster 2020 PPMS diagnosis in 2018 - now aged 53
Special Sunday chat with my Tween daughter about feeling down.
Mental Health Awareness Week UK 18-24 March 2020. COVID isolation impacts on my 12-year old.
Feeling down and angry.
Missing fun and realising only when something is taken away how important it is in your life.
Recorded in the garden (with a couple of connection blips)
In this 2nd instalment of Grant's diagnosis story He reflects on the disease progression by remembering his stages of requiring walking aids.
A big advocate pf maintaining a positive outlook and having a reason to get up Grant remembers starting to use aids (sticks/wheelchair) before he actually needed to. This helped with gradual easing into the change. We chatted about not 'ruminating' for too long when a negative thought pops along .... as it inevitably does.
In this first episode Grant talks about his MS diagnosis a long time ago. He experienced his 1st symptom visual symptom 40 years ago. Initially he received an optic neuritis diagnosis (in 1979 at the age of 17) then encountered additional, seemingly unconnected symptoms. It wasn't until he saw a TV programme about MS that he was prompted to mention to his neurologist and at this point the neuro confirmed his diagnosis was one of Multiple Sclerosis.
At this point in the history of MS, the 3 'categories' of disease type had not been defined (Relapsing/Remitting, Secondary Progressive, Primary Progressive). These 3 categories were not proposed by the Multiple Sclerosis Society Advisory Committee until 1996. Therefore, Grant's diagnosis was initially referred to (by his neurologist) as Disseminated Sclerosis ... and subsequently confirmed as Primary Progressive Multiple Sclerosis later in his disease journey.
Copyright: Bron Webster 2020
In this 2nd instalment from Jo, she talks about the relief she felt once the diagnosis was confirmed. Recognising the need to slow down and that good is good enough.
Jo can be contacted at:
Blog - www.ms-understood.com
Instagram - www.instagram.com/gimmehopejoanna
Twitter - www.twitter.com/gimmehopejoanna
Copyright: Bron Webster 2020
After a lengthy period in which Jo didn’t take her heath particularly seriously (Jo's own words), a diagnosis of Relapsing/Remitting Multiple Sclerosis eventually came bringing relief at getting a diagnosis. Jo tells us about some of the visual tests involved in her diagnosis.
Originally from Essex now living in Wigan, Jo works full time, had symptoms 10 years before diagnosis, and tells us about her head MRI and then spine.
Includes details of the Evoked Potentials test and what was involved, … “at this point I didn’t even know MS was on the radar for me”
“This is the most important thing in your world … when you’re going through that diagnosis … it consumes you”
“.... he said this has been going on for you for a really, really long time …”
“... I can’t believe I’m as mobile as I am …”
“... the next relapse could be the really disabling one for you…” and “... that was really scary"
The first part of Jo's story.
Find Jo here:
Blog - www.ms-understood.com
Instagram - www.instagram.com/gimmehopejoanna
Twitter - www.twitter.com/gimmehopejoanna
Copyright: Bron Webster 2020
Over 130,000 people in the UK have a diagnosis of Multiple Sclerosis. This is the series introduction and includes some of Bron’s MS diagnosis story. Included in the episode are an overview of typical early symptoms (fatigue, pins and needles, optic neuritis), explanations of the potential length of time to go through the diagnosis process, the difficulty of diagnosing Multiple Sclerosis, and how the neurology team build the jigsaw of this highly variable condition.
Recommended websites:
https://www.mstrust.org.uk/
https://mssociety.org.uk/
https://multiplesuccess.co.uk/podcasts.html - subscribe to more episodes here
Copyright: Bron Webster 2020
Important Listening
Nothing in this, or any other episode, constitutes medical advice,
Also, a quick summary of the latest Covid advice for people with MS
Copyright: Bron Webster 2020
In the current Pandemic virus situation, many people are feeling scared. Scared for tomorrow, next week, next year.
As a Person living with MS, we experience these feelings on an ongoing basis. Does that put us in a position of experts? How can we help others?
We need to find positives in our MS lives!
Copyright: Bron Webster 2020, COVID19, Coronavirus, unknown tomorrow, MS, Multiple Sclerosis
Explaining MS using an analogy of the London Underground. Different types of MS. Multiple Stars or Multiple Scars. MS Progression.
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UK-based podcast. Bron Webster's Multiple Sclerosis story covering her MS Diagnosis, MS symptoms, MS struggles, rare cancer, living with MS, working flexibly with MS. Oh, and a little coverage of Yorkshire life!
More episodes here: http://themsshow.libsyn.com/
Please subscribe to be notified of future episodes.
Introduction to this new podcast - for people living with Multiple Sclerosis. Meet your host, Bron Webster and get to know what you can expect.
Copyright Bron Webster 2020.
Available episodes at: http://themsshow.libsyn.com