You, me & M.E. - chronic fatigue Podcast: Recent Episodes

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Why don’t so many people living with ME/CFS recover?

Is the Gupta Programme simply an alternative holistic lifestyle approach?

ME/CFS is not a psychological illness, it is a physical illness, how will brain retraining and psychotherapy techniques impact our real physical symptoms

What is neuroplasticity and how is it incorporated into the Gupta Programme with holistic health.

Is the programme more effective for people in the early stages of their ME/CFS journey?

Do we have the same depth of impairment to our brains and debilitation when compared to others who have lived with this illness for longer?

Is there truth in the statement, “the longer you have the longer you are going to have it?” - Do I simply have a better prognosis?

How will visualising, instil an image of a brighter future impact my illness and does visualisation become more difficult the longer you have the illness

My sore throat is indicative of an imminent crash but does not thinking about my sore throat stop me from crashing from relapsing.

I am hopeful, that we can get better over time. Will the Gupta Programme accelerate my recovery?

Will the Gupta Programme work for me?

Key takeaways

• Why does the Gupta Programme divide the ME/CFS community?
• Why do our bodies become stuck in a hyperreaction stress response, causing the overstimulation of the nervous system and the immune system?
• Why does this defensive response lead to all our other symptoms?
• What is neuroplasticity and holistic health
• How does the Gupta Programme support and facilitate recovery?
• What is the science and theory behind the Gupta Programme?
• How is the Gupta Programme different to positive thinking and CBT?
• Can we really heal from the power of thought?
• How will changing our thoughts rewire our brains
• How will a single focused activity keep me calm, engaged and distracted?
• What are the key components of my daily routine if, I was on the Gupta Programme?
• Why does stress perpetuate our illness?
• Does brain retraining contradict the advocacy?
• Is recovery enough or do we need a cure!

This is our journey unlocking our visibility! Together we can still make a difference.

Connect with me on Facebook and Instagram

Visit our official website www.jak-group.co.uk

Valuable resources: Action for ME and the NHS

With thanks to:

Ashok Gupta – guptaprogram.com

Jamie York

Oli Corse (Intro and outro)

purple-planet.com (Music)

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Are our fears, our fear avoidance beliefs and our unhelpful interpretations of our symptoms exacerbating our relationship with this illness?

Is mediation, mindfulness and positive thinking a daily coping mechanism for ME/Chronic fatigue Syndrome when faced with the enormous challenge this illness presents.

Can you develop habits to manage your symptoms and regain your health – by taking control of your own path to health, taking charge of your life choices, adopting holistic approaches and believing we can be healthy.

Will these daily practices stop you from being hard on yourself and why do you need to constantly adjust to accommodate this illness? Is being optimistic enough?

Is the key to recovery, simply, understanding, modifying or mediation and will brain retraining techniques trigger our bodies natural ability to heal itself?

How can a high energy go getter be bedridden with debilitating fatigue, brain fog and all the other symptoms associated with ME/CFS for 5 years and how did these daily coping mechanisms aide her recovery – this is Sarah Burgess story!

This is Sarah’s experience, in her own words, life with and without ME/CFS!

Key takeaways

• Meditation and mindfulness are the foundation to Sarah’s recovery, with a strong emphasis on self-compassion (Breathworks -Vidyamala Burch and Danny Penman), and positive visualisation and brain training (Gupta Programme) and Sarah still practises these everyday
• Can you benefit from the wisdom and experience of so many patients who have gone before you
• It’s ok, to want to try and learn from their experience, to be envious, to want your health back
• Taking control of your health and the paths to a healthier you are exhausting, but you can’t wait for a cure – for someone to come up with a well evidenced treatment for CFS
• Your brain is really powerful and its protective response to this illness keeps you in a sympathetic fight or flight mode and a holistic approach may be needed
• The brain and body must be treated simultaneously
• Brain training techniques can trigger your body’s natural ability to heal itself
• Why breaking unhelpful behaviour patterns that are associated to your cognitive response as protector may strengthen your recovery
• We know accepting a long-term illness is a scary thought as your new life will be quite different from your former life, there will be a sense of loss
• Acknowledging this illness is the first step – the key to coping is acknowledging, understanding, and then adjusting to this illness
• When or how you perform your routine isn’t important, but minimising your body’s need to adjust to this change is imperative
• You don’t need to be perfect; you just need to keep trying, believing and visualising
• Promise me, you will stop being hard on yourself & learn to be kind to yourself!

This is our journey unlocking our visibility! Together we can still make a difference.

Valuable resources: Action for ME and the NHS

Connect with me on Facebook and Instagram

Visit our official website www.jak-group.co.uk

With thanks to:

Sarah Burgess LinkedIn Profile: https://bit.ly/2YI7ex8

Sarah Burgess Facebook Profile: https://bit.ly/2N5H4ij

Jamie York

Oli Corse (Intro and outro)

purple-planet.com (Music)

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Therapy & ME – What happens to me?

Why does the word therapy make so many people uncomfortable?

If healthy eating maintains a healthy lifestyle then why can’t therapy be a nutritious meal for our minds. This illness has deconditioned our minds and bodies, do we need a training programme for our minds?

Do our behaviours, thinking patterns and actions subconsciously cause more harm?

Surely, it can’t be as simple as identifying the patterns and triggers in our behaviours to reverse the deconditioning to our minds and bodies.

Is there a connection between our thoughts, our behaviours, our actions and our energy levels? Is this the reason why we don’t get better. Do we need to recognise and modify our relationship patterns and attachments with this illness? Has the fear, failure and guilt triggered our anxiety.

Does it take a complete stranger to tell you, it’s not your fault, to do less and manage your own expectations and to stop being so hard on yourself and convalesce.

Will our attempts to maintain regular hourly activity at regular intervals for fixed durations and mediation aide or hinder our recovery.

When will we breakthrough and begin to heal the inner and outer psychosomatic symptoms? Do our repressed emotions emerge as physical illness?

We learn from life two things - courage and fear - Are we ready to uncover our truth?

Key takeaways

• Why we need to implement a training programme for your mind
• Adopting a positive state of mind will give you the tools to deal with negative feelings
• Are we ready to admit there may be a pattern in our behaviours and feelings that hinders our recovery?
• Being mindful of our behaviours, thinking patterns and actions may enhance our energy levels
• Is the solution to ME/ CFS pacing/ graded therapy – can we be active and mindful every hour
• Therapy isn’t easy as you come face to face with your negative thoughts
• Coping strategies will encourage and create a preventive and caring mindset
• Feeling better, is something the therapist cannot convince you to believe
• The therapists cannot make you do anything, and it’s up to you to apply what you have learnt
• How can we deal with the anxiety the pacing has created?
• Do we really rest and convalesce, or do we keep pushing ourselves – Are we being too hard on ourselves
• What happens when the therapy stops – what happens to me!

This is our journey unlocking our visibility! Together we can still make a difference.

Connect with me on Facebook and Instagram

Visit our official website www.jak-group.co.uk

Valuable resources: Action for ME and the NHS

With thanks to:

Jamie York and Rob Moore

Oli Corse (Intro and outro)

purple-planet.com (Music)

braydesign.co.uk (Darren Bray – Graphics)

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What happens when your only question is, why didn’t you protect my child?

What happens when no one understands your child is ill and you are now in the firing line to conform?

What do you do, when suddenly, you no longer recognise your child and their behaviour spirals out of control and they just want to be understood and accepted?

As parents, as carers, we protect and understand our children, but what happens when the protocols designed to safeguard our children exacerbates their illness and symptoms?

This is Caroline’s story, Taylors mum who was expected to cope with her child’s illness that no one understood and feels she failed Taylor. How do you reject the systems designed to protect?

What about the support systems for parents and carers of children with ME/cfs, they also need to talk, share and advocate their child’s illness?

Key takeaways

• Parents whose children are diagnosed with ME/cfs are missing precious days and years with their children
• It may take months to be diagnosed with ME/cfs, and many children are not diagnosed
• What happens when safeguarding becomes an issue when the child fails to attend school?
• Parents are under immense pressure to conform and this pressure is translated to the child – why?
• There is no single management strategy for ME/cfs
• Increasing a child’s energy levels, may have a detrimental impact on their health
• Parents need to be honest without the fear of being reprimanded if the advice is detrimental to their child’s health
• A child who is misunderstood due to their illness may rebel, and impact their behaviour
• A teenager who is misunderstood will rebel, exacerbating their illness
• Is the system broken, what can be done to help our children who are diagnosed with ME/cfs?
• Support systems for parents and carers will inform, support and advocate change
• The aspirations for our child change and our renewed focus is to protect and nurture the fragile child
• How do you stop feeling guilty that you failed your child by simply conforming?
• How many generations will this illness affect, before it is recognised?
• Our children should NOT be missing!

This is our journey unlocking our visibility! Together we can still make a difference.

Connect with me on Facebook and Instagram

Visit our official website www.jak-group.co.uk

Valuable resources: Action for ME and the NHS

With thanks to:

Caroline Tracey

Taylor Lilly

Jamie York and Rob Moore

Oli Corse (Intro and outro)

purple-planet.com (Music)

braydesign.co.uk (Darren Bray – Graphics)

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No child expects to one day, to stop functioning, to no longer be in control of their mind or body. Taylor desperately tried to make her family, friends, school, and society understand she was not well. It wasn’t a behavioural issue, she just needed everyone to understand she was no longer in control.

Why does a 14-year-old Taylor feel she was abandoned by the system that is designed to protect her.

At 14 years old, the primary objective was to ensure Taylor went to school every day but did this overzealous encouragement impact the severity of her illness.

…’ it takes a village to raise a child’ (African Proverb) but what happened to this community when a 14-year-old needed support, and no one believed she was ill. That happened to the support system that should safeguard the health of our children or are league tables more important than the mental health of our children. What happened to the safe and healthy environment? This is Taylor’s story, a brave young lady and who wants her voice to be heard…

As a parent, how would you cope when your child is no longer accepted because of an illness no one understands, and you are helpless!

How did Taylor cope!

How would you cope!

Key takeaways

• It is ok to continue to do what you love to do
• Learn to be sympathise and empathic of an invisible illness, learn to understand
• Learn to accept its ok for a young person not to do what is ordinarily expected of them
• Invisible illnesses have the potential to destroy life’s and future aspirations
• We need to listen, by not listening young people will struggle with their mental health
• Young people need to be given the opportunity to participate and feel included and Not feel excluded in the education system
• We may not be able to relate to an invisible illness, but that doesn’t mean we can’t learn to listen and understand
• A young person who is learning to understand their illness will have an impact on their behaviour
• For a young person, milestones are important, inclusion and a sense of belonging are important
• Education is really important, but there is still so much more you can do
• Every day we continue to struggle, but we have the strength to try everyday
• It is Ok, to learn to start over again, and to redesign a future that will accept our new limitations
• I know there will always be challenges and life will never be perfect, but we don’t know how far we can go until we get started, until we take the first step.

This is our journey unlocking our visibility! Together we can still make a difference.

Connect with me on Facebook and Instagram

Visit our official website www.jak-group.co.uk

Valuable resources: Action for ME and the NHS

With thanks to:

Taylor Lilly

Jamie York and Rob Moore

Oli Corse (Intro and outro)

purple-planet.com (Music)

braydesign.co.uk (Darren Bray – Graphics)

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I know my husband never expected to be my primary carer – does anyone! So, what really happens when your partner suddenly finds themselves looking after someone who is now chronically ill?

They were not given a choice; we didn’t have a choice and our partners are expected to cope with the complexity of ME – Myalgic Encephalomyelitis!!!!

How do they cope with our daily fluctuating limitations and should we be encouraging them to safeguard their own mental health? Should we be concerned about the mental wellbeing of our partners, our children our family and friends. They may struggle to understand and accept our illness, but this doesn’t mean they don’t care – they too are fighting the invisibility.

Yes, they are angry, resentful and frustrated, but do we need them to feel comfortable and supported when telling us how they are feeling. This illness impacts everyone’s, and we need to learn to nurture these relationships whilst our partners, our children learn to cope.

It’s not easy, it’s a struggle and our lives may never get better, but we can try to learn to cope by listening, acknowledging, believing, preserving and hoping one day things may get better.

Key takeaways

• No one really had a choice
• This illness has no manual or there isn’t an instruction book
• We need to overcome the doubt by belief, by having the courage to overcome the fear
• Our partners experience isolation, doubt and fear
• Our primal instinct is to Push – but does this really help, we are all helpless – we need to understand each other
• Learn to encourage and accept we need to stop and rest, it is OK… to press pause and rest
• Help each other feel included and we need to stop blaming each other – we are no longer in control
• Encourage each other and encourage our children to discuss openly how they are feeling without the fear of retaliation – we need to share
• Can we help change and develop their mindset – we need to remember this illness isn’t easy to live with
• We need to remember they are still proud of us – we have the renewed strength to keep trying
• At times they will not know what we do and find themselves helpless, we know what it is like to be helpless and we will need to offer them our support to keep trying – to carry on
• They need to learn to ask for help and learn more about the illness so they can understand
• With time, we may learn to heal and find peace with this illness, but they may always resent this illness and may never find peace, and we need to accept they may never heal

This is our journey unlocking our visibility! Together we can still make a difference.

Valuable resources: Action for ME and the NHS

Connect with me on Facebook

Visit our official website www.jak-group.co.uk

With thanks to:

Jamie York and Rob Moore

Oli Corse (Intro and outro)

purple-plant.com (Music)

braydesign.co.uk (Darren Bray – Graphics)

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Do the benefits of a mentoring programme create success or is it a magic wand that automatically guarantee's success? Is my role instrumental to my future success. Do I need to define my own goals, seeking and cultivating the relationship I want, or is my role just passive? Why can’t they live the life for me! Why do they need to help me to ask the right questions?

How will I benefit from the insights gained from their experience without making the same mistakes, avoiding the same pitfalls and identifying paths to success by filling in the gaps in my experience.

One thing for sure, I need a mentor who has lived through the experiences and challenges I now face building and scaling my idea and someone who continues to invest in their own learning and development. Giving each person the opportunity to reflect and appreciate the mentoring relationship.

Key takeaways

• Mentoring, is a powerful professional growth tool that is equipped to impact you positively
• A mentoring relationship must be managed and nurtured by both the mentor and mentee
• A mentor and a mentee must be held accountable and both must take time to get to know each other as ‘people’
• A mentor will have the desire and disposition to develop people, reflecting on their own successes and sharing their own failures
• Effective mentoring takes effort, skills and sensibilities from both the mentor and mentee and both parties need to take responsibilities for the success
• Mentors enable the mentee to reach heights that seemed impossible before, with clear goals and aspirations
• Mentees must show a willingness to ask for help, and be open to learning and trying new ideas and accept feedback – even the constructive type
• Mentees cannot sit patiently on the side-lines, they must be proactive, responsible and accountable
• Mentees must always attend with a mentoring agenda
• A mentor must continue to invest in their own development
• I know there will always be challenges and life will never be perfect, but we don’t know how far we can go until we get started, until we take the first step.

This is our journey unlocking our visibility! Together we can still make a difference.

Valuable resources: Action for ME and the NHS

Connect with me on Facebook

Visit our official website www.jak-group.co.uk

With thanks to:

Jamie York and Rob Moore

Oli Corse (Intro and outro)

purple-planet.com (Music)

braydesign.co.uk (Darren Bray – Graphics)

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One of the hardest things in life is letting go, learning how and when it’s time to let go, we need to let go of the what’s, if's and maybe's. For a very long time I had lost my WHY. I had lost my purpose in life!

I had to let go of what I once had and have faith in my new journey and accept who I am now and learn to be present and stop being frightened, vulnerable and lost in the past ME.

I had to start living. I had to choose a new path and start over. I had to accept I could take a step back if I was unable to take a step forward and I could always do a complete U turn. I gradually regained my functionality, and although this isn’t quite perfect and every day I still struggle, I started to live and live selectively. My biggest decision …what now? … What should I do next?

I no longer expect anyone to understand what we are going through, and this illness doesn’t define who I am or who we are anymore. I am now the best version of my former self and every day I choose to live with this invisible illness, with its limitations and its challenges. This is who I have chosen to be.

This illness no longer defines who I am. Together we can get better. This is our journey to unlock our visibility!

Key takeaways

• We need to accept our lives have changed and these changes have affected our abilities to continue to navigate life, but we can still learn to move forward
• We need to remember one of the core beliefs of Stephen Hawkins - Bvisible …’disability need not be an obstacle to success, we deserve our voices to be heard and impact the future’
• We need to remember what we can still do and not on what we can no longer do and learn to invest our energy into things we enjoy
• We need to heal, be at peace with this illness and learn to live again and accept the world will continue to move whilst we remain on pause, without anger, resentment or guilt
• We need to avoid conforming to pressures and societal expectations – we need to accept its ok to cancel or change plans at the last minute
• To truly move forward, we need to acknowledge and accept what this illness has done to us and what really happened to us, its ok to want to heal before moving forward
• We must learn to make peace with this illness every day and we can’t learn to live with this illness if we are still fighting it
• We must accept our lives are now full of challenges and full of limitations and we need to keep moving because it we are not moving, if we are not thinking then we are not living. It’s not about how quickly we move; it’s about not stopping
• This invisible illness may be significant in our lives, but its invisibility means its insignificant in every bodies else’s and we need to accept this
• I know I am one of the lucky ones, I had a choice, I regained some of my functionality and I choose to live, but to live selectively

This is our journey unlocking our visibility! Together we can still make a difference.

Valuable resources: Action for ME and the NHS

Connect with me on Facebook

Visit our official website www.jak-group.co.uk

With thanks to:

Jamie York and Rob Moore

Oli Corse (Intro and outro)

purple-planet.com (Music)

braydesign.co.uk (Darren Bray – Graphics)

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We need to start talking seriously about ME/cfs and how this impacts our lives, our family, our work and it’s all part of the same puzzle, we all need to listen, to react, to be inspired and to be assured

Not all doctors will be a good fit for ME/cfs patients. Let go of the high expectations, otherwise we will be disappointed.

We can’t simply bounce back but we can learn, behaviours thoughts and actions – positive self-view means we persevere through tough times and we are not resentful, but we are resilient.

Unfortunately, 90 % of cases of ME/CFS are thought to go undiagnosed and untreated. Some Drs continue to believe CFS does not exist. Doctors are here to support you and do their best to treat you. We need to remember; our primary care provider isn’t our therapist.

But is ME/cfs a mindset? What are your options?

Key takeaways

• We need to try and deal with the facts rather than emotions
• Drs need to empower patients about the realistic possibility of improving their condition
• Drs can suggest ways to relieve some symptoms, but they won’t always have the answers
• Not all Drs are taught or trained about ME/cfs, and Drs may be able to learn from your experience, we all need to learn to be patient
• From a patient’s perspective, what are the most important things a GP needs to know about ME/cfs
• ME/cfs is a serious multi-system neuro-immune disorder and is not a mental health problem
• ME/cfs is usually triggered by a viral infection, causing muscle fatigue, pain and neurological symptoms, for example short term memory loss, brain fog and lapses in cognitive thinking
• There is no diagnostic test for ME/cfs, but there are clear guidelines to help Drs diagnose the condition, once they have ruled out other conditions with similar symptoms
• ME/cfs is not in your head, you cannot fix it by sleeping it off, or sweating it out through exercise, CFS can be seriously debilitating
• We need to encourage things that do work and eliminate things that don’t, it’s a gradual process of elimination
• I know there will always be challenges and life will never be perfect, but we don’t know how far we can go until we get started, until we take the first step

This is our journey unlocking our visibility! Together we can still make a difference.

Valuable resources: Action for ME and the NHS

Connect with me on Facebook

Visit our official website www.jak-group.co.uk

With thanks to:

Jamie York and Rob Moore

Oli Corse (Intro and outro)

purple-planet.com (Music)

braydesign.co.uk (Darren Bray – Graphics)

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Despite this illness, we find the strength to face adversity. I know I wanted to give up, this illness made me believe I wanted to give up, that’s how desperate and vulnerable this illness made me. But I know every minute of every day, we are all surviving, and we remain committed to this illness. We need to maintain our mental strength by regulating our emotions, managing our thoughts and our movements every day.

Our mental strength means we don’t feel sorry for ourselves, and we don’t give up, we persist and gradually we become the best and strongest version of our former selves. We need to heal and be at peace.

We need to remember; mental strength is a work in progress. When our thoughts are not productive, we need to revert this into positive thoughts. We need to increase our awareness of our thinking habits and catch our negative thoughts early, before they spiral out of control.

I know despite everything that happened to me, the loss of movement, the loss of cognitive thinking, I will always be one of the lucky ones.

Key takeaways

• True mental strength becomes apparent amid adversaries
• We need to do more of whatever makes us happy whilst living with this illness, disregarding what others may think, they don’t see our daily struggles and we need to accept this is our new ME
• We need to focus on what is still in our control and stop thinking negatively, because otherwise we will have less energy for creative endeavours and other things that truly make us happy
• Change is now part of living, and we need to accept there are things we can’t change. We need to focus on what is within our control
• We all have life challenges and we need to remember our circumstances can change, we may get better, our severity may improve and we need to focus on the little things we can now do and the subtle improvements in how we are feeling
• We need to have realistic goals; change is part of living and our lives have changed. If we start to accept that there are things, we can’t change, we can then focus on the things we can control
• We can all strengthened our resolve, by journaling, mediating or simply being creative. It can be anything that helps us restore hope
• We need to start the habit of small ‘wins’ when we move towards realistic goals and along the way we need to try to accomplish one small step towards these goals every day.
• I know there will always be challenges and life will never be perfect, but we don’t know how far we can go until we get started, until we take the first step.

This is our journey unlocking our visibility! Together we can still make a difference.

Valuable resources: Action for ME and the NHS

Connect with me on Facebook

Visit our official website www.jak-group.co.uk

With thanks to:

Jamie York and Rob Moore

Oli Corse (Intro and outro)

purple-planet.com (Music)

braydesign.co.uk (Darren Bray – Graphics)

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We need to start talking seriously about invisible illnesses and what really happens.

Just imagine your mind and body suddenly stops. You can’t move, you can’t think, you don’t eat or drink for 7 weeks and you are now trapped in isolation, in darkness and in silence. Well that’s what happened to me, one day, everything stopped, and no one can tell me why. My mind shut down and left my body helpless and lifeless for 7 weeks. This is the truth behind an invisible illness.

We need to remember, it’s not our fault our bodies are sick, and this can happen to anyone. It happened to me. It happened to us. We need to forgive ourselves, to heal and rebuild ourselves. I have never blamed myself for being sick because I will always be thankful, I am the one who fell sick, I am the lucky one.

We didn’t choose this life, but it’s the only life we have without a cure, we need to believe our health will get better and our tolerance may improve. We need to let go, only then are we able to let go of the person we once were and accept the person we are today.

I was given a choice, the severity of my illness now meant I had a choice and I choose to live selectively!

Key takeaways

• A resilient mindset is a flexible mindset and we need to learn and accept it is ok to rely on others, learning when to step back and rest and when it’s ok to step forward, slowly and patiently
• Sharing our journey, our experience and our emotion can support others to navigate through their difficult times seeking professional advice
• We learn a lot about ourselves when we find ourselves in difficult situations, positively impacting our self-worth and personal growth. For some it deepens their spirituality and for others this heightens their appreciation for life
• We need to try and visualise a hopeful and positive outlook and stop focussing on negativity and remember we didn’t do anything to cause this illness and we need to remember that; it’s not our fault
• We need to take care of ourselves and stop feeling guilty, we need to focus on our own needs and feelings and invest time and effort into things that bring us all joy and relaxation
• Believing, our health will get better, our tolerance and severity may improve.
• We need to accept we didn’t choose this life, but it’s the only life we have without a cure and we must learn to appreciate it
• Our resilience is tested every day and we must believe we will slowly get stronger and we can no longer bounce back
• We need to acquire new skills to improve our cognitive thinking and set goals to slowly implement PACE, ensuring our exposure is gradual and controlled to avoid Post Exertion Malaise
• I know there will always be challenges and life will never be perfect, but we don’t know how far we can go until we get started, until we take the first step.

This is our journey unlocking our visibility! Together we can still make a difference.

Valuable resources: Action for ME and the NHS

Connect with me on Facebook

Visit our official website www.jak-group.co.uk

With thanks to:

Jamie York and Rob Moore

Oli Corse (Intro and outro)

purple-plant.com (Music)

braydesign.co.uk (Darren Bray – Graphics)

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The reality…today it’s our fight, it’s our invisible illness, but tomorrow it could be you because this can happen to anyone. Our bodies fall ill, we lose control and it’s NOT our fault. There is now a disconnect between our mind and body, one day we just stop moving and thinking and no one can tell us why. I accept our challenges and limitations are invisible, but this doesn’t mean we are not struggling every day. We may not have any outward signs of physical pain or any assistive devices, but this doesn’t mean our struggles are not impacting the quality of our daily lives. Our struggles are real!

I know it is difficult for the world to understand our invisible illness, we may look ok, but we are not faking being ill! This illness makes us forget what we can still do, but it is a constant reminder of what we can no longer do. I believe, raising awareness may ease the burden of other people living or sharing life with a chronic and invisible illness.

I will always be grateful I am the one who fell ill. I know I am one of the lucky ones. The severity of my illness has changed and slowly I was given a choice.

Key takeaways

• We need to create a supportive and inclusive environment, giving people the choice to discuss the most vulnerable part of their identity, without the stigma of faking it. We should not feel ashamed or embarrassed to discuss our illness
• We need to stop blaming and learn to forgive ourselves, we did not cause this illness. Self-blame will prevent us from learning to live with this illness and we need to continue rebuild ourselves everyday
• Negative feelings create a vicious cycle of frustration, disappointment and anger and by listening to your inner voice, we know we are no longer in control. We need to accept these illnesses now control all of us and then we can focus on what we can still do
• We must accept our lives are now full of challenges and full of limitations and we need to keep moving because it we are not moving, if we are not thinking then we are not living. We must keep trying
• We need to encourage each other to share our journeys making the journey for someone else, less vulnerable and easier
• We are not lazy, or moody, nor do we need to calm down or simply cheer up, doing exercise or leaving the house will not make us feel better
• We don’t look different to healthy people all around, it remembering we haven’t done anything wrong, and with that you feel a sign of relief
• I know there will always be challenges and life will never be perfect, but we don’t know how far we can go until we get started, until we take the first step.

This is our journey unlocking our visibility! Together we can still make a difference.

Valuable resources: Action for ME and the NHS

Connect with me on Facebook

Visit our official website www.jak-group.co.uk

With thanks to:

Jamie York and Rob Moore

Oli Corse (Intro and outro)

purple-planet.com (Music)

braydesign.co.uk (Darren Bray – Graphics)