The It’s Me It’s Me It’s FND Podcast: Recent Episodes
itsmeitsmeitsfnd
So let me introduce myself am Jake and I have Functional Neurological Disorders or FND for short for over 10 years now I live in Sheffield. I Want to use this podcast to talk to other people with FND, Medical people in the area of Functional Neurological Disorders. To try and get more awareness on FND and to show people that you are not alone with it but to create a support system for other people suffering from FND.
When I got ill I had a great network of mates then when I got ill they all went away due to me being a bit too much hard work bu also cos they all have lifes of therer own I could not do all the things that they could do anymore it was not possible for me at.
I am back, and there has been a lot going on at late it been a while since I have spoken to you (19 of September to be fair) I been using Visable to pace myself (https://join.makevisible.com/7378499bc4d53e,) 15 pounds off if you use that link too. We will be back to getting these up more than last year
In this episode the host explains a long break from uploading after having to put their dog Rocky down, and shares the emotional impact this loss had on the family during the summer holidays.
They talk about struggling with the sudden quiet at home, balancing grief with parenting and work, and the slow process of trying to recover while supporting their children.
The episode closes with a message of encouragement about small wins and the need to rest when needed.
In this episode, join the host as they candidly discuss their journey of managing personal life alongside Functional Neurological Disorder (FND). Amidst dealing with seizures and brain fog, the episode sheds light on the struggles and successes encountered with using assistive technology like a wearable device.
Discover personal experiences with pacing and managing energy as they navigate the complexities of living with a disability. The episode provides insights into tools that help identify stress points and when to take a break, offering a relatable perspective for anyone facing similar challenges.
Welcome to this episode of It's Me, It's Me, It's F&D. In this special edition, we honor Functional Neurological Disorder Day, celebrated annually on March 25th. The episode provides an insightful overview of FND, a condition where the brain's ability to send and receive signals is disrupted. Unlike common neurological disorders, FND is akin to a software malfunction, impacting individuals in various life-altering ways.
Learn about the challenges faced by those living with FND, the complexity of its diagnosis, and the array of symptoms, including fatigue, seizures, and migraines. Despite the daily struggles, there is hope, as discussed through available therapies and support from charitable organizations like FND Action, FND Hope, and the MyFND app.
Join us in spreading awareness and understanding of FND, a disorder that demands attention, empathy, and comprehensive care. As we navigate through the intricacies of this condition, remember that every little step towards awareness counts.
https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/functional-neurological-disorder/ for information on fnd and links to charities and help please follow
Welcome to "It's Me, It's Me, It's F&D," a podcast dedicated to navigating the complexities of living with Functional Neurological Disorder (FND). Host shares personal experiences and insights, reflecting on a four-year journey of self-discovery and resilience. As he grapples with the challenges of maintaining control amidst the unpredictable nature of FND, he offers support and understanding to those on a similar path.
This episode delves into the struggle of adapting to a new normal while empowering listeners to find strength and community in shared experiences. Tune in for genuine reflections on the impact of FND, the importance of self-care, and the power of kindness in our daily lives.
Welcome to the kickoff of 2025! As we step into the new year, our host reflects on the challenging yet rewarding journey of the past year. Juggling the demands of parenthood, creative ventures, and personal health issues, such as dealing with migraines, has not been easy.
Despite the hurdles, there's a strong desire to improve and develop a structured plan for future podcast episodes. Our host discusses the difficulties of managing time effectively, especially with additional commitments and the new responsibilities of being a parent for the second time.
As we welcome 2025, join us in looking forward to new possibilities and hoping for a year of growth and achievement.
In this heartfelt episode, the host opens up about the challenges of managing Functional Neurological Disorder (FND) and migraines amidst life's demands. With candid reflections on family life and personal health struggles, the episode provides an intimate glimpse into the ongoing battle of balancing responsibilities and self-care.
As the holiday season approaches, the host shares the emotional complexities of maintaining a positive environment for the family, despite personal difficulties. The episode delves into the mental health impact of chronic conditions and the importance of community support.
Listeners are invited to share their experiences and coping strategies, fostering a sense of solidarity and understanding within the community. Join in for an honest discussion on the realities of living with FND and the quest for finding moments of peace in a hectic world.
In this heartfelt episode, our host opens up about the struggles and setbacks that have kept them away from the podcasting world. From the pressures of managing a YouTube channel to the stress of financial and family responsibilities, it's been a tough journey.
They share their experiences dealing with mental health issues, navigating the complexities of universal credit, and the challenges of parenting an eight-month-old child. Despite the hardships, they are determined to get back on track and bring more episodes to their listeners.
Tune in to hear a candid reflection on life's hurdles and the resilience needed to keep moving forward. As always, the message is clear: if you got out of bed this morning, you're already winning.
Welcome to "It's Me, It's Me, It's F&D." In this episode, we delve into the complexities of dealing with the Personal Independent Payment (PIP) form, a crucial yet challenging part of life for many.
Our host shares their personal struggles with the PIP review process, discussing the anxiety and difficulties faced, from gathering evidence to the nerve-wracking waiting period. Hear firsthand how dealing with non-medical professionals and bureaucratic hurdles can turn a necessary procedure into a nightmare.
Whether you're familiar with the PIP system or learning about it for the first time, this episode offers valuable insights and practical advice on navigating this daunting process while managing your health and well-being.
In this episode of "It's Me, It's Me, It's F&D," we shift focus from the challenges of Personal Independent Payment (PIP) to a personal journey of making home adaptations for better accessibility. Our host shares their recent experience with local council and occupational health services to install grab rails, a new banister, and other modifications to navigate their home more safely and comfortably.
Discover the importance of asking for help and making necessary changes to maintain independence and safety, especially when living with a disability. Learn about the process, from contacting authorities to dealing with landlords, and the significant impact these adaptations can have on daily life.
Join us for an insightful discussion on taking proactive steps to improve living conditions and embracing the new normal, while balancing family life and personal challenges. This episode is a must-listen for anyone seeking practical advice and encouragement in their journey toward greater independence.
Welcome to 'It's Me, It's F&D,' a controversial episode that raises concerns about the UK government's understanding of 'disability' and its treatment of those challenged by mental health issues. This discussion focuses on the Personal Independent Payment (PIP), a system established to provide financial support for individuals dealing with disabilities.
The episode delves deep into the injustices and discrepancies felt by those reliant on the PIP, particularly those with anxiety and depression. It also discusses the troubling reality of the UK government's inclination towards forcing them back into the workforce. Our host articulates a deep distrust for the government's current approach, which unfairly targets the most vulnerable.
The host shares personal stories with F&D, a multi-faceted condition that can severely affect mental health. They further express concern for those unable to return to work due to illnesses, providing real-life examples such as chefs and hairdressers suffering from seizures. These personal experiences shed light on the extensive complexity of this health issue and the daily struggles faced by sufferers.
The episode also critiques public officials who inaccurately represent the monetary support received by those with disabilities, highlighting the hypocrisy when compared to these officials' allowances. Moreover, bureaucracy comes under fire with mention of the 'brown envelope of death,’ illustrating the anxiety-inducing nature of awaiting a decision on one's PIP application.
Finally, the podcast gets to the heart of the relentless hardships endured by F&D patients who are limited in the benefits they can apply for, resulting in just mere survival. The host ends on an inspiring note urging listeners to keep fighting for recognition and better treatment for all disabilities and mental health conditions.
In this episode of the podcast, the host openly discusses the struggles of adjusting to the new normal - balancing parenthood of a newborn, dealing with Functional Neurological Disorder (FND), as well as grappling with depression. It provides a raw and relatable account of the host's journey navigating these challenges.
Conversation takes a deep dive into FND, including awareness events such as FND Awareness Month and Day. The host shares his personal experiences with F&D, including how it unexpectedly amplifies his other health conditions or triggers other mental health issues. He also details his recent battle with depression and the ways it has negatively impacted his mood and seizure control.
Throughout the episode, the struggles of living with FND are highlighted, particularly the feeling of losing control and the constant battle with oneself. The host candidly shares the emotional toll it takes, especially when it comes to perceived ability to provide for his family or set a good example for his children.
Despite these challenges, the host plans to continue to use the podcast as a platform to raise awareness and provide insight into FND. The episode ends on a hopeful note, with the host expressing his intention of finding a new normal and getting back into a regular podcasting schedule.
Welcome back to another episode of "It's Me, It's Me, It's F&D." After a brief hiatus, our host delves deep into his frustration and struggles concerning the misinterpretations and inaccuracies in his discharge letter. Unhappy with the contradiction between his reported health conditions and the consultant's inaccurate summary of his situation, he and his wife are taking steps to address this dire matter.
Delving into the depths of medical jargon and misconceptions, our host grapples with the inappropriate use of outdated terminology and expresses his perturbation over the misrepresentation of his seizure frequency. His concern heightens when he reads mention of his newborn child, wrongly used to explain his chronic sleep deprivation, a problem that prevailed long before. Furthermore, he voices his irritation over implications that he failed to maintain the benefits of his psychotherapy sessions, despite the lack of ongoing support and assistance.
Our host feels that the discharge letter is ill-considerately written, causing him utter anguish and frustration. The episode offers a closer look at medical negligence, bureaucracy, and the upheavals it can cause in a patient's life. Calling out the system, he resonates with countless others facing the same challenges while fighting their health battles.
Simultaneously, he shares his hardships of dealing with Medquip, a company that has caused him more stress than comfort. Consequently, his seizures worsen, adding another layer to his ongoing health issues. Bridled with the feeling of failure and rejection, he anchors himself with a positive outlook on life and a reminder for his listeners to rest if needed. Tune in to this episode to delve into the complex life of F&D told through our host's heartfelt dialogue.
In this episode of my candid podcast, I share my lived experiences as a patient with a neurological condition. Crucially, I grapple with the hard realities of being discharged from neurology, an event that leaves me feeling stranded. In spite of this heavy blow, I strive to adopt a positive mindset: I'm freeing up a space for another patient who might need it.
I reveal the raw details of dealing with 60 to 250 or more seizures each day and the weight this condition places on my quality of life. Having to navigate the maze of medical referrals and join notoriously long waiting lists, I'm thrust back to figuring out what comes next and fight off feelings of isolation reminiscent of my initial diagnosis.
The complex dynamics of my neurological condition, FND functional seizures, require attention but the current health system seems unequipped to tackle it effectively. However, the setbacks don’t deter me from pursuing effective care. I also provide insights on how this rollercoaster affects my mental health, underscoring the interconnectedness of physical and emotional wellbeing.
Despite my uncertainties, I find the strength to navigate the system and understand what my 'next' looks like. Dealing with this condition is no easy task, but it's about picking up the gauntlet and forging ahead. I share my story to shed light on the struggles of living with chronic condition, but also anchor my narrative on resilience and the relentless quest for better days.
Join me in this honest and raw exploration of life with a neurological condition. We may have difficult moments, but remember, if you manage to get out of bed in the morning, you're already winning the day. Everything else is a bonus.
eps so 100 and it with the news I have a son!!!! also started this 4 years ago and I kept it going so proud of myself
It been a while sorry it's been 6 weeks of holidays and there has been lots of stuff going on while I been gone with stuff but I hope this puts me back in the routine again and swing of stuff
Making a plan I think has helped me a lot this six weeks and it getting easier to do so!
FUNCTIONAL SEIZURES is the new name for NEAD it will take a long time for this to get into the minds of medical people but it a start
I find that looking for support with this condition can sometimes can be a minefield of trying to work out where to turn too or who to talk too This is what this episode is about
This needs to be better in modern times and using psychotherapy is what a lot of us get and some times it is seen as one treatment that treats all
The plan was to do more episodes for this week and fnd made sure I could not do that sadly :(
When the cold hits the uk it gets me very badly and then the embracement of fits in public and bowls going everywhere
Welcome to 2023. Let's see how we all are at the moment. Its been an interesting start to the year
Well, things as late have got on top of me. I t been very very hard to get things done and be done but it getting there
Pain in the back area is a big issue it can crush all your ability to do things. From ya legs to everything if ya back goes you pretty much can be done for the day.
There are a lot of times we need to get to appointments for a lot of things for fnd or in this case a dentist appointment. I need to do better at managing everything and it very hard to do
I love these sticks I have 3 of them so far and it turning into a bit of a collection of them.
https://www.neo-walk.com/
This episode I had a great time out with the family but boy am I pay for it now I feel really out of it the last couple of days and it takes a lot to come back from it
Please talk more to people with fnd and with out the mental health is a big thing these days
So I need to take a bit a break but did not do it on purespers as it was that I just fell into the break so body telling me not to do too much I ignore it and hit the boom or bust cycle that is fnd and it has hit my mental health badly as well with not being able to think am not good enough.
I have been feeling burnt out last week and feel very bad this week and already need to get back on carrying on.
Well, I had admitted it I needed a better walking aid. One that won't make me feel like an older man.
This was my yearly neuro appointment as I get these now as they do not change at all as it stands there still just as bad as there once were my fnd and seizures. So I talk about how they are and everything that happen in the day leading to the appointment and then a couple of days to process the appointment in my head
So I have had it taken but also not at the same time my creative spark I will explain more in this episode today
Knowing when to rest and look after your self if you know what your triggers are please be very careful
This is an episode I get to talk to Odette about her podcast and how fnd affects her. She awesome and I love that I finally got her on the podcast
https://thefndpodcast.simplecast.com/
https://www.instagram.com/thefndpodcast/
Big trigger warning on this episode by the way dealing with self-harm and suicide on the song in question I find a lot of value in music and the songs lyrics as well their one that has been stuck in my head for ages now and it is by a band called we three and the song is Sara but the lyric that stuck with me was "People think she's complicated and never wanna look inside" That for me said a lot as well and it really hit home. I am not one not to have these feelings I think we all have at some point or another with FND or in any kind of chronic illness I will leave a link to the youtube video of the song for people to go and have a listen to.
https://www.youtube.com/watch?v=vlMNJi3F5lU
We have to deal with grief it is what we have to do as humans and it very hard emotion to deal with. I don't think we are built to deal with it and I think it very hard to talk about and try and process.
The weather is really bad at the moment and we need to be safe but it been hard to do at the moment there a lot of things going on at the moment
This was a very bad week for me as there was a lot of trolling that had this week and not even trolling it was personal attacks more then any thing
Epsiode 52 is all about pacing yourself with fnd and how to look after yourself a bit better.
So this is a very special episode for me 50th one and am very happy to be joined by Rachel and her husband Chris Walter now we become very kind friendship as me and rach meet on Instagram @unwireddesigner and we got talking and we had a lot in commend with our find and in life as well as I have been wanting to have these two on for the longest time. Chris Instagram is @partnersneadawareness
FND NEAD & US Instagram and Facebook group thanks for listening
I got a walking stick and it has been a god sent around the house so far and out in public when I have need to be around and do things.
I made this to the one year of this podcast!! I show that a habit has it and I can do this my new routine thank you to all that have listen and hear to more content in the 2022
Happy Holidays hope you all have a great time and are safe and well with people around you with love :)
So I have a pretty big online network for fnd and nead and these are some people I recommend you follow. Instagram handles to some:
@unwireddesigner
@_fnd_and_me_
@Fnd_nead_and_us
@thefndpodcast
@mrs_shep_unplugged
I had to take a break yet again as this is something am needing to do more and more often these days and it is a good thing to do. I need to take time for me
This is a emontuon I really struggle with and it hard for me to understand and cause me a lot of problems
So let's talk about what really messed up the housing situation with my very good and honoured to call her family more than a friend to me Rach Walter and her Husband Chris and her kids situation at the moment and what they are going through. Please go to this link to help:
https://www.change.org/p/nhs-seize-it-seizure-awareness?recruiter=false&utm_source=share_petition&utm_medium=facebook&utm_campaign=psf_combo_share_initial&utm_term=share_petition&recruited_by_id=a2ebee20-389b-11ec-a8cd-d5cd22d3e237&utm_content=fht-28722663-en-gb%3A6
So in this episdoe i call this my brain dump where i write out everything that in my head and whats going on in it and how am feeling makes life a lot more manageable at times
The Seasons when they change they don't help me when it gets dark and it is not good for me I love the time of year personal but other than that not a fan.
So we had a lovely woman i used that term loosely give us some information that was wrong regarding my bus pass. so in the UK if you get care and high mobility you can get a bus pass that get you on for free. and a care I will talk about this in this episode
So in this episode, I explain why the last episode was very important that I say why the rant was needed and why it well not nice to have people doing this when we trying to raise awareness for FND
In this episode, I need to talk about something that keeps happing on social media and it really starting to do my head. So you will see that you get these message that pop up all the time saying I can heal your fnd and make it go away...
I know I spoke about this before with me an triggers but I think it good to speak to others and what they can do
I have been dealing with some of this recently and am trying to slowly get them out of my life but it is becoming harder and harder to do
We All need self-care but trying to look after ourselves. I think there some dead space at the end of the episode sorry about that
Find your space to be calm and chill out space it important to have the space for yourself
I know I know this is hard to to do am just as bad as anyone for not asking for help trust me on this one. but it is important that you do ask for ask help.
Am not sure if i have spoke about this as an episode I keep thinking I already upload about it but I cant see so sorry if I have but the brain frog is real today.
So on Monday when the podcast normally goes up I was bed bound and it sucked! we talk about it in this episode.
So today it yet another family member and I hope this helps people understand what it is and how to explain it to other people in there lives
The motivation can get drain very fast and your motivation can then plummet to the floor.
In this episode I kind go on the route of not needing to be accountable or why you dont have to explain that you cant do something. I have had this happen to me in the past and it not a nice feeling
I think we all have our far amount of scrapes falls and bad injuries with fnd it. It not the nice thing to have to go though and realise how much you hurt from it. But recently I have been told about possibly needing surgery on my shoulder, due to amount of times I fall on it.
This episode is a bit TMI. As it about our bowls and how they have a way of getting away from us during attacks will I say
So one of the things when you lose your ability to work due to FND it another way of it taken something away from you. I have found this quite hard to deal with this a lot.
So on today episode, I am joined by my wife to talk to her about fnd and how a loved ones deal with it and how it affects them as this can be hard for them as well
Now this is about FND and for my international listeners I do apologise that this is a little bit UK based but could also help with what your country has for disability payments
This is a big one I can't describe how tired you feel with fnd you get so mentally drain with it all and then physical side of it if you just get out of bed your on for a good day in my thoughts.
Before I start this is not me saying this how it is to treat or manage it am just saying what I have been thought to do it.
So in this episode, I tell you how I describe what FND is or how it is in my head. Now A lot of people describe differently to how it is for them, but for me it like a box or a draw of wires.
On today's episode, I talk about my limitations on what I can do and what I cant do. Knowing when to know I done too much.
Welcome to the first episode of it's me it's me it's FND. So in this podcast am going to be talking about FND. I will explain what fnd is. In this episode I talk about the Sheffield Teaching hospital who am under their care at the present time.
Source: Sheffield Teaching hospital about Neurology Psychotherapy Service.
https://www.sth.nhs.uk/services/a-z-of-services?id=115&page=293