1 year wheelachairaversiry!

This month marks one year since my GTM wheelchair finally got delivered to me after months of waiting for the whole process to be completed. After I ordered my new chair I created in my bullet journal a countdown marking off the days and months until delivery day. I was just so excited for it to arrive once I’d put the order in so the countdown kept me going through the wait.

This past year has been amazing with my new wheelchair. My quality of life really has improved by having the right wheelchair for me and it’s given me back so much freedom and independence.

Before

My previous wheelchair which Wheelchair Services had provided me with an InvaCare Action 3 wheelchair which was pretty much a standard wheelchair. It had no customisations for me other than it being fitted for my size.

I’m very grateful that my Wheelchair Services provided me with a wheelchair as not all NHS Trusts provide wheelchairs to ambulatory wheelchair users.

My InvaCare wheelchair

When I had my NHS wheelchair at first it suited me fine and met my needs. However as time went on and my health worsened and I needed to increasing use my wheelchair more I found that it wasn’t fully meeting my needs. At times my wheelchair was more of a hindrance than a help as it was difficult to transport and as I needed to take it with me every time I went out. The chair was also very heavy and the backrest wasn’t the correct hight so it was difficult to self-propel due to the chair’s weight and the backrest caused problems with my shoulders and having Ehlers-Danlos this made it especially problematic. I also couldn’t use my NHS chair around the house so when my symptoms were bad I was often left stuck as walking around my home with my crutches wasn’t possible or safe.

My NHS wheelchair was more made for occasional use, like for someone pushing me to take me to a hospital appointment or around a shop. It definitely wasn’t made for regular independent use and as my health worsened my NHS wheelchair wasn’t meeting my needs and it was limiting my freedom, independence and quality of life. As a result I began saving and looking into to get a wheelchair that would meet my needs.

As you can see from the photo it’s a pretty standard stereotypical wheelchair; nothing fancy like an active wheelchair.

Looking for a wheelchair 

I tried and tested both manual and lightweight folding electric wheelchairs. I did a lot of research and read a lot of reviews on different makes and models of wheelchairs and spoke with other wheelchair users including wheelchair users with M.E and EDS to see what they felt worked for them.

Initially I decided to buy a power add-on and again I tried and tested different attachments and again did my research, read reviews etc. When I tried out the Batec Mini 2 I fell in love with it immediately. I loved the suspension and how easy it was to transport and store (I have very limited space in my bungalow) plus I love how it connects to the wheelchair. The docking bracket is so easy compared to some other attachments I tried where they connected to the frame of the chair which I really struggled with as well as the damage it would do to the frame. You can read my Batec review here.

When my Batec arrived in August 2023 it gave me back so much more freedom to be able to go out. It’s probably one of the best things I’ve ever bought. After buying my Batec I decided to wait about a year before going ahead with getting a suitable wheelchair. However my InvaCare Action 3 wheelchair wasn’t made for Batec adventures and going up and down curbs etc and wheelchair services had to come out a few times to fix my chair. Very soon after getting my Batec I made the decision to just go ahead and get myself the wheelchair that I desperately needed; not just because of my Batec but because my Batec gave me freedom. It made me realise how little freedom I had with my InvaCare wheelchair and how much I desperately needed a wheelchair that would meet my needs.

I was really impressed with the customer service I got from Cyclone Mobility when I bought my Batec from them and I decided to demo some of their wheelchairs. In my research I really liked the backrest system on Aria wheelchairs and that was a makes of chair that Cyclone Mobility stocked so I asked them to bring one of them to my home demo along with some other makes and models with the features I wanted in my new wheelchair.

From having my NHS wheelchair I sort-of knew what I did and didn’t want in my new chair. 

Demo chair

When I had my home demo initially Alex brought me the Aria chair and an and another make and model of wheelchair. I really did like the Aria wheelchair but talking to Alex who is a wheelchair user himself, he from personal experience didn’t recommend the Aria wheelchair and recommended a GTM wheelchair to me. His chair was a GTM chair and he said they’re made to go really well with Batec’s so he went to his van and brought me a GTM Mustang chair to try out. Sitting in an ultra lightweight wheelchair made it so much easier to get around in compared to some other chairs I’d tried out. Also the demo GTM chair had gekko grip CarboLife push rims and the gekko grip made pushing the chair even easier. I realised that with options and customisations I could be a manual wheelchair user and I liked the active feel of a manual wheelchair.

I did some more research into GTM wheelchairs and spoke with some people who had GTM wheelchairs. Gem at WheelsNoHeels was really helpful. She has a GTM Jaguar and recommended Spinergy wheels to me as these are lightweight wheels so would make my chair lighter making it easier to push as well as lift if taking them off my chair.

After I decided that the GTM Mustang was the chair for me Alex came back out to me and I ordered my chair.

A lot of measuring goes into a custom wheelchair and there are so many options to go for. Initially I thought I wanted a white framed wheelchair. But then I thought why not spend a bit more and get a custom colour frame. I did want a pastel lavender/lilac colour but unfortunately the closest colour they could do was dark purple which I didn’t like as I like pastel colours. So eventually I went for polished metal frame as I liked Gem’s GTM Jaguar wheelchair. I enjoyed customising my new chair and it was helpful to have Alex as another wheelchair user to ask both his professional and personal advice on some of the options. I could tell that GTM went with Batec’s as one of the customisations was to add a bracket for a Batec. After I initially ordered my GTM Mustang I contacted Alex a few times to make changes to my order like changing plastic to carbon fibre and the spoke colours when they couldn’t do my custom lilac colour frame. I kept changing my mind on choices as I wanted my new wheelchair to turn out just right.

So, did I get my chair right? 

On the whole yes. The seat is much more comfortable as I’m no longer sat at a 90 degree angle which I found uncomfortable. The backrest is ever so slightly tilted back and my seat is an ergo bucket so it slopes upwards helping with back and hip pain. I’m glad I swapped plastic for carbon fibre - well worth the extra expense as it looks so much better. I’m also definitely glad I swapped from small to large CarboLife push rims and the gekko grip was well worth the expense too as I wouldn’t be able to push my chair otherwise. I like my Spinergy wheels too. I like the side guards going over the top of my wheels too. The pouch on my backrest is so handy. The backrest also folds down so much better compared to how my old chair folded. I could say more but I think this sums things up well. My GTM chair is so easy to transport. On the whole for my first chair I pretty much got everything just right.

The main thing I wish I had gotten was fold out push handles. The main reasons why I didn’t get them were because I thought they might be too low down for someone pushing me but I can now see that it would have been fine. Also I wanted to be independent in my new chair; I wanted to break free from having people push me like a little old lady and be independent and push myself around. Thankfully it’s not been a major problem as it’s very rare that I do need a push and usually it’s not for a long distance so we use the bar on the back of my chair. When I go to places or I’m having days where I’d struggle to push myself I’d take my Batec with me. So I’ve found that though I wish I’d gotten them it’s not a problem that they’re not there.

Sometimes I feel like my chair is a bit plain but then on the flip side it means it goes with any outfit. Sometimes I do think about my initial wish for a white frame. I am considering jazzing it up a bit maybe?

When I got my pressure sore Wheelchair Services also provided me with a Jay Extreme Active seat cushion that has really made a difference.

This past year 

Getting out and about

The past year since having my GTM chair it’s opened up so many more opportunities for me. As my new chair fits so well with my Batec I love getting out whenever I can whether it’s a ride around the block, to the Co-op or putting my wheelchair and Batec and chair in the car and riding around the Country Park.

I’ve also gained so much confidence as a wheelchair user too and doing my two days of wheelchair training with Stuart at Freedom Wheelchair Skills really helped with that too. (I still really want to learn and perfect how to do backwards balance in my chair aka a wheelie as it’s such a key as a wheelchair user).

I also feel happy in my GTM like being seen in it in terms of the aesthetic of my GTM chair compared to how my InvaCare wheelchair looked.

I did try out some LoopWheels but I should have gotten a trial of the LT LoopWheels but I didn’t but decided to leave the idea of getting LoopWheels for now as I love my Spinergy wheels. You can read about my trial of LoopWheels here.

The future

I’m so glad that I now have a wheelchair that meets my needs and has improved my quality of life and given me back freedom and independence. I’m also grateful that I have a wheelchair that means I can manage my symptoms and not be held back. Yes I still have to spend a lot of time in bed but it’s nice to wheel to my craft desk or to get a drink or even the bathroom some days. 

I look forward to many more adventures with my Batec.

I do think I’ll try the LT LoopWheels at some point.

I know maybe a time in five or more or less years when I might struggle to push my chair and I’m already saving for future options like SmartDrives and such power assists should I need them in the future.

Resources 

Gem has a great four part series on her YouTube channel on buying a custom wheelchair which she did when she bought her GTM Jaguar. You can find these videos in this playlist here along with some other videos on choosing wheelchairs and power add-ons.

I found this series invaluable when I was buying my custom wheelchair. Gem’s channel WheelsNoHeels is a great channel in general I find especially if you’re a wheelchair user or if you have a disability/chronic illness.

My life with FND

Today is UK FND Awareness Day. 

FND stands for Functional Neurological Disorder this means that the function of the brain is fine, think of the brain like a computer and FND like the computer’s software. The computer itself is fine but the software isn’t working properly. This analogy is used a lot to explain FND. With FND the structure of the brain is fine but the brain’s and spinal cord’s messaging system isn’t working properly. This results in a wide range of symptoms. FND is experienced differently by each patient.

My FND symptoms

I was diagnosed with FND by an FND specialist neurologist on the 4th July 2017 after living with undiagnosed symptoms since 2013. Initially my FND began with mild non-epileptic seizures like absence and myoclonic seizures that I didn’t know what they were but I just thought I was tired and overworked. Then in February 2013 my life changed forever and I had my first tonic-clonic seizure. After my first tonic-clonic seizure they just spiralled and I was having multiple seizures a day.

As time went on I started experiencing other symptoms that I couldn’t explain. It was hard living with undiagnosed symptoms as you don’t have answers for what is happening to you and you feel helpless and desperate for answers and to know if there is a way for them to stop. 

I also experienced a lot of negative experiences from medical professionals such as gaslighting and refusal to treat me according to my care plan as some professionals thought I was feigning my symptoms for attention or medication or due to mental illness. This along with other experiences led me to develop medical PTSD so I find clinical settings especially the Emergency Department really difficult places to be in.

Developing FND has really changed my life. There are now a lot of things that I’m unable to do because it’s not safe. I’d love to be able to drive but due to my seizures I’m not allowed; I’d have to be a year seizure free - I can’t even go a week without having a seizure and I take the maximum dose of medication to control my seizures. Thankfully due to this medication I have a lot less tonic-clonic seizures and other seizures. I’ve also learnt what triggers my seizures some of them are stress, anxiety, heat, tiredness, pain and being unwell with an infection. Managing my triggers like staying cool when the weather is hot, managing my energy and pain levels (not easy especially when you also have M.E and EDS!) and keeping on top of my mental health can help to reduce my seizures.

Accepting the use of mobility aids has also helped with my mobility. Before I was diagnosed I carried around with me a fold-up walking stick to use when needed. Then in physiotherapy my therapist said I needed to use a crutch which would offer me more stability than a walking stick. Later I needed two crutches to help aid me walk as my mobility worsened. Then one appointment with my neurologist I asked him if he thought a wheelchair would help me or not and he responded with that he thought a wheelchair would really benefit me and he knew I’d use it when I know I needed to use it as he knew I wanted to keep my mobility as much as possible. The InvaCare Action 3 wheelchair I got from the NHS served me well for a long time but as my health conditions alongside my FND deteriorated and I needed to use my wheelchair more I knew I needed a wheelchair that would better meet my needs. I’ve had my GTM  Mustang, an active wheelchair exactly a year now and it’s made a massive difference to my live. It’s really improved my quality of life like for example if my FND symptoms mean I can’t walk I now have a wheelchair I can use around my home so I don’t have to stuck in bed. Plus I’m a lot safer as I now have less falls. My new wheelchair is much easier to self-propel so I don’t need someone to push me around which makes me feel more independent and gives me more freedom.

I’ve now learnt to live with FND and its symptoms. For me my FND is always there. I don’t get periods where I’m symptom free or experiencing very few minor symptoms and then have flare-ups where my FND symptoms become present for a period of time.

There are different ways I manage my symptoms. I do take different medications to help control my symptoms, for example medication to help with my chronic pain, muscle spasms and dystonia, neuropathic (nerve) symptoms and seizures. I also have prisms in my glasses to help with my diplopia or double vision as my FND causes visual changes. Most of the management of my FND though is self-management and these are things that I’ve learnt and developed over time. For example pacing and activity management, having rest periods or rest days, using my heat pad, doing physio or yoga as I find movement helps, engaging in self-care activities, distracting myself so it takes my mind off my symptoms, sleeping well, massage therapy, using mobility aids and other equipment and aids, staying hydrated, managing my seizure triggers and more. Managing my FND (and my other conditions) is literally built into how I live each day. Inevitably I do have good and bad days, sometimes a bad day can be brought on by a tonic-clonic seizure, high pain or fatigue levels or other symptoms being more present. If I’m having a bad day today like I am now as I type (I type my posts in little chunks to make it more doable to be a blogger with disabilities) - my pain levels aren’t great today and the numbness I get with my FND is more present today too so my PA suggested a pyjama day as I’d be more comfortable and I’m having a day in bed too. This is just one way I manage a bad day and I’ve planned as a distraction to finish this post and to do some colouring which I love as a distraction and self-care activity.

I definitely think medical professionals need to learn and understand what FND is and some of the main FND symptoms patients with FND may experience. I think this will reduce medical professionals not understanding us, like when my symptoms haven’t been believed and it’s lead to poor care and negative attitudes from the clinicians. I think non-epileptic seizures especially need to be understood that they are still neurological in nature and not the patient feigning them for attention or drugs - I think paramedics and A&E staff especially need to understand non-epileptic seizures from my own personal experience. I also think that more neurologists should have an understanding of FND. I’ve been turned down by several neurology services because FND isn’t a condition they treat as FND is such a specialist area and there are so few FND specialist neurologists. I also think more research is needed. There are tests for FND like the Hoover’s Sign for leg weakness and the Tremor Entrainment Test and things like EEG’s can rule out epilepsy. fMRI scans have shown to show FND but fRMI scans aren’t used as a diagnostic tool.

FND really has changed my life upside down and I’ve had to change the way I live my life to be safe and to accommodate my symptoms. Having a disability like FND is expensive as I need equipment and aids to allow me to do tasks safely, easily and/or independently. Wheelchairs and Batec’s definitely don’t come cheap and I’ve had to do a lot of saving up to purchase them. Then it’s everything else I need like hot water dispenser machines as I’m unable to safely use a kettle as when I first started to have seizures I poured a kettle of boiling water on myself so since then I’ve never used a kettle for my own safety. I also have to buy things lids for cups and lidded cups, straws (the straw ban really affected disabled people like myself), adapted cutlery, kitchen aids, heat pads, hands-free water bottles that attach to my profiling bed, my Flexzi stand that also attaches to my bed, grabber stick - the list goes on.

Despite living with FND and the limitations and costs it puts on me it has changed me as a person. I still do grieve for the life I’ve lost at times but my FND and becoming disabled because of it has made me realise what really matters in life and who in my life really matters too. I have more gratitude for the small things because they’re often the big things in my life now like a letter from a pen pal, going out on my Batec, spending time in my garden, or reading my kindle with a hot drink cosied up in bed in the morning. I don’t think I’d be the person I am today if I hadn’t of become unwell. Yes there are days when I wish I didn’t have FND or a disability because there are so many challenges like being in pain all the time or lack of wheelchair access and the grief I still hold for the life I’ve lost and where I could be if I didn’t develop FND. However I’ve managed to create a new life and I’m passionate about raising awareness and advocating for disability. That’s why I started this blog and I’ve done lots of awareness work which you can see what I’ve done here and I’m also a Storyteller for the disability charity Scope. As well I also really appreciate the support my PAs give to me each day the enable me to live independently and to life my life how I want. I also appreciate all the support my Dad gives me too.

Links

A good resource site for FND is FND Hope

Happy International Wheelchair Day 2026!

My NHS wheelchair

I’m very proud to be part of the wheelchair community. For me I’m an ambulatory wheelchair user, that means that I can stand and mobilise without a wheelchair; when I’m not using my wheelchair I use crutches to help me get around.

However I always use my wheelchair when I go out; sometimes I’ll also use my Batec if I know I’m going to struggle pushing myself. When I had my NHS InvaCare Action 3 wheelchair it was impossible to use inside but my new wheelchair allows me to use it inside. This makes life easier but also much safer as I can’t stand for too long as well I can have a very off-balance gait when walking plus when I stand up I get very dizzy and lightheaded and at times want to faint. So transferring into my wheelchair solves a lot of these problems.

March is a special month for me as last year towards the end of this month I got the delivery of my GTM Mustang wheelchair and the difference it’s made to my life has been incredible especially when I compare it to my previous NHS wheelchair.

My GTM Mustang

For me now my wheelchair means freedom and independence. Some of the customisations make it possible for me to use a manual wheelchair. My chair is very lightweight and I have lightweight Spinergy wheels. The lighter the chair the easier it is to push. I also have CarboLife L push rims with gekko grip which give me a bit of extra pushing power.

I actually like being seen in my wheelchair now and I like being seen as an independent wheelchair user. For example if I’m in a supermarket instead of my PA carrying the basket I’ll have the basket with my shopping in it on my lap thanks to my LapStacker which secures the basket on my lap.

For any wheelchair user I highly recommend getting a LapStacker!

I also love my Batec attachment. It’s a power add-on and since getting it it’s really helped my mental health. Even just getting out around my estate for some fresh air does me wonders. I went out yesterday just for a little ride, I was very glad I wrapped up warm and put my BundleBean on too for added warmth. But just that journey after being in the house for days really helped.

I’ve also done some wheelchair skills training with Freedom Wheelchair Skills. Stuart was a great coach and I learnt a lot and gained more confidence as a wheelchair user. I just need to practice and perfect my ability to do backwards balance (pushing your chair on your back wheels).

My Batec Mini 2

I think I’m very lucky to have my GTM wheelchair and Batec. I’m so grateful for to have them. I’m just taking each day as it comes as maybe in 3 or 5 years my needs might change with my wheelchair and I might need to add something like a SmartDrive to assist me. Who knows.

One of the things I recently highlighted at my local supermarket was the lack of an accessible scan as you shop checkout for wheelchairs. As amazing as my PA is I want to be able to do things for myself rather than rely upon her. We also highlights how the scanners are chosen at random so as a wheelchair user if I was on my own I’d be unable to reach a chosen scanner that was either at the top or at the bottom. The world just definitely isn’t made for wheelchairs but hopefully things are moving forward in the transport industry, in allowing wheelchair users to go on holiday, to access work, entertainment venues, hairdressers, shops, cafés, supermarkets and more.

So, what is International Wheelchair Day all about?

• It was founded in 2008 by Steve Wilkinson
• Today celebrates the freedom and independence wheelchairs bring to the disabled community 
• Today also highlights the need for more provision of wheelchairs and those who don’t have access to one
• Today also highlights the inaccessibility for wheelchair users such as the lack of ramps and lifts as well as more advocacy for wheelchair users 

My journey with anorexia

Eating disorder recovery symbol

* TW: Eating disorders and self harm*

Back when I was a teenager I really struggled with a lot of things. Home was difficult due to my mum’s BPD. School wasn’t great either. I was bullied in both primary and secondary school. I never felt like I fitted in anywhere, especially with my peers. I’d try to change myself to fit in but I felt awkward. I preferred the company of adults like the dinner ladies on duty in the playground or teachers. In primary school I’d much rather spend my break and lunch periods in the classroom tidying the classroom and doing jobs for my teacher. 

The move to secondary school I found really unsettling. This quickly brought on feelings of anxiety and depression; I was already deliberately hurting myself in different ways. I struggled to cope with the change of teachers and classrooms. I also found the playground dynamics difficult too. I’d gone from enjoying playing double Dutch skipping in the playground at primary school to just everyone using the playground to stand around in their cliques in. I struggled even more to try and fit in and to change myself as I moved around groups.

More often than not though I was bullied than being friends with people; if it wasn’t one person or group of people bullying me physically and/or verbally it would be another person or group. 

I took to spending my breaks and lunch periods in either the library or my favourite teacher’s classroom. 

I’d always avoided the canteen from day one as I found it too small for purpose and it was noisy and overwhelming. Not eating meant I could spend my whole lunch period in the library of my music teacher’s classroom. 

My only refuge at secondary school from feeling overwhelmed and anxious was to spend time in SEN unit doing worksheets so I didn’t have to be in the main school building. It saved me the stress and panic and worry of changing classrooms and teachers as well as being away from all the bullies.

Very soon my eating disorder took hold. It quickly went from skipping lunch at school to not wanting to eat at home too. I very soon became a vegetarian as it was something I could cut out of my diet. (I’m still a vegetarian now and always will be but I do it for the animals now.) 

Eating disorders are very manipulative. I remember my dad saying he’ll take me to the GP and I bargained with him that if I eat my packed lunch we won’t go. I made it look like I had so voilà no GP. However I annually saw my paediatrician for my spinal curvature and I got on well with him. I remember telling him how dark I felt and we spoke about my eating. My paediatrician diagnosed clinical depression and anorexia.

Very quickly treatment changed. I had to start seeing a dietitian who had zero clue about eating disorders and she was expecting me to do the impossible. I also had to see my paediatrician twice a week. That just lead to me spiralling even deeper. Eventually in October time I self-harmed by taking a small overdose. This fast tracked me to CAMHS: Child and Adolescent Mental Health Services. I started psychotherapy sessions with the CAMHS therapist that assessed me in hospital; she came to play a key role in my journey. Unfortunately I was in too deep with my eating disorder and depression and a couple of months later I was admitted to my first inpatient unit.

Going into hospital almost saved me in a weird way. I hated inpatient treatment but that first admission got me away from everything that was bothering me school and home.

I spent the next several years in various inpatient units. I restored my weight each time but it didn’t work on me emotionally. I think the problem was the lack of talking therapies. I’d get discharged but I’d quickly relapse and be admitted to another unit. I think what worked for me was in my last unit there was a social worker in that unit and I talked to her about home and basically my mum left and that really helped me. I was able to stay at home and what helped me to recover was my CAMHS therapist. I was in therapy with her for several years and slowly I opened up to her. I honestly think I owe my life to her and I will never forget her.

I relapsed with my anorexia again last year. I think the trigger this time was not feeling in control of my health and care maybe? I actually asked for help this time. I was assessed and then offered outpatient therapy. 

There were times earlier when I struggled with outpatient therapy and did want to consider inpatient treatment again but equally I really wanted to try and stay in my own home especially as I now have my own home. I’m still in outpatient therapy. It’s tough going and it’s often a real struggle but my therapist (who I get on well with thankfully), with has made a lot of suggestions to help me at home.

The therapy I’m doing at the moment is CBT-ED so it’s CBT specifically designed for eating disorders. I find my therapist challenges my thinking a lot or will get me explain something I say. I’ve also been shown a lot of resources some are general information to learn about various aspects of eating disorders then some resources my therapist gave me were aimed at specific things I struggle with as part of my eating disorder. I’ve found the education really helpful partly because I like to know and learn things but also it helps me understand my eating disorder. I really struggle with my body image but that topic isn’t worked upon until my weight is restored, something I’m making slow progress with and struggling with as well. 

Recovery takes time but equally recovery is possible.

Beat

Information and resources

Helpline - telephone, email, 1:1 web chat 

13 years later

February this year 13 years on way back from 2013 marks the month my life changed forever. I’d had the flu from which I never seemed to have recovered from. 

On top of my ongoing flu I was experiencing that February in 2013 I also had my first tonic-clonic seizure. Before February at first I was having like daydreaming moments but my head would feel really fuzzy and I’d be really confused afterwards. I now know these to be absence seizures. But once I’d had my first tonic-clonic seizure I was having different types of seizures multiple times a day.

Living undiagnosed

I plan to write a specific blogpost on this topic however living with undiagnosed symptoms was so difficult in so many different ways. I’d get so frustrated with myself and I’d blame myself over my symptoms and not understanding what was happening to me or why. It was also scary and bewildering when new symptoms developed or when my health would worsen. I didn’t know what to do for the best for myself. Like should I try and exercise more but then I was struggling with my mobility and was using a walking stick the right thing to do? Did I need more coffee, more sleep, less sleep, supplements if so which ones?!

I also developed medical trauma from having my seizures but also from the things I heard and saw in hospital especially when in A&E resus but also from experiencing medical gaslighting. 

Doctors and nurses didn’t always treat me so well, physically and verbally and mentally. When I had seizure clusters they wouldn’t give me the medication I needed on my care plan. Then when my EEG’s showed my seizures weren’t epileptic some doctors and nurses assumed I was faking my seizures for attention, or drug seeking or I was mentally unwell among other things.  

Some of my thoughts when I became unwell

Diagnosis time

Getting a diagnosis finally in 2017 was such a relief. I saw a specialist neurologist who specialised in FND and he diagnosed me Functional Neurological Disorder, this is a problem with the brain and spinal cord not sending messages around the body properly causing a plethora of symptoms. He also picked up in the appointment that alongside my FND I also had a condition called M.E. a Neuro-immune disorder that has a variety of symptoms.

Finally after years of living with undiagnosed symptoms, not being believed, being diagnosed repeatedly by my GP with Post Viral Fatigue Syndrome and just being told rest would make me better and countless times going to my GP asking for help and referrals and for tests all to come back normal I had names to my symptoms I could finally say I have FND and M.E. However but more importantly I knew I could finally stop blaming and beating myself up because I knew nothing was my fault.

My neurologist in his physical exam also picked up signs of Ehlers-Danlos so he referred me to an EDS specialist rheumatologist. After a genetic test to rule out vascular EDS I was diagnosed with Hypermobile EDS. With that new diagnosis came things like signs it was missed when I was a child as EDS is hereditary so I was born with it. I also had some of the same thoughts as when I was diagnosed with FND and M.E. The EDS diagnosis did make sense why I so easily subluxed and dislocated my joints; this was one thing I always wondered when I had my seizures.

Post-diagnosis 

It wasn’t easy however after diagnosis. I had to change my life a lot. I had to learn what triggered my seizures, and how to manage my symptoms better as well as how to pace myself. I also had to understand the conditions themselves. 

With my EDS diagnosis I had to do physio but with M.E. I experienced exercise intolerance and it would worsen my symptoms so I had to learn to do my physio but in a careful way that didn’t upset my M.E. too much. It was a fine balance at first.

Also with my EDS diagnosis came appointments for being fitted for splints and I had to learn when to wear them and when not to.

Becoming members of charities to do with my various illnesses really helped me in the early stages. This is something I’d recommend doing to anyone newly diagnosed. You can access a lot of information sheets and other resources as well as helplines and communities with others with your illness. I also got a staying safe with seizures booklet from Epilepsy Action which really helped.

There was already a lot I safely wasn’t able to do because of my seizures like use a kettle, cook, use the stairs, go out alone or drive and so much more.

Life now

Fast forward 13 years and my health has worsened over the years. I’ve had to fight a lot to get the care I need both from the NHS and also adult social care. 

My social care is now more-or-less sorted. I have two fabulous PAs, I just unfortunately have to use a care agency once a fortnight as there’s still a PA vacancy for then (the vacancy has been open 6 years but I remain hopeful). 

I’ve been lucky to get the equipment I need without really asking. I have a profiling bed with hybrid airflow mattress; I also have a bath lift and I’m waiting for a ramp for my back garden. My housing association have also been really good at adapting my bungalow for me too.

Some of the things I safely couldn’t do I’m now finding ways to be able to do those things. Sometimes it’s because I have the support of my PAs, or my seizures are better managed now I’m on medication or because I’m more attuned to my triggers but also because I have more confidence. Like 5 years ago I wouldn’t have thought it possible for me to be able to live alone. Also more recently like a year ago I wouldn’t have thought it possible for me to go out alone but now I have my Batec I share my live location with my PA who is at my home and I’ll take off for a short ride.

My GTM wheelchair and my Batec especially have been the best things I’ve ever bought. Since getting my Batec it does my mental health wonders. I’m just hating all this horrible weather at the moment as I’m missing going out so I’m looking forward to Spring and Summer.

I’ve also discovered more adaptations, aids and disability gadgets that help me and give me more independence.

I’m still learning how to get pacing and activity management done properly. It really isn’t my strength and it’s something I really want to get better at.

It is hard to see how my health has worsened over the years; I think because it’s been gradual I haven’t noticed it until I compare myself to how I am year upon year. Sometimes I have crashes to varying degrees with my M.E. and I’ll deteriorate, (personally my FND doesn’t fluctuate my symptoms just remain the same), and then I’ll have periods where my health will stabilise but not with much significant improvement and then something will trigger another crash. Read about M.E. crashes here. My EDS has also had a lot of complications. Also both with my M.E. and EDS I’ve developed secondary conditions which I have to manage.

Grief

I still sometimes grieve for my old life. When I used to be able to dance and do yoga so well. Or travel on a train or do volunteer work. Part of me thinks about Uni and graduating but another part of me wasn’t happy at uni and I wish I’d done another course at a different university. I think I only went for the course I did was because it was an undergraduate masters and it seemed daft to turn that offer down at the time. Part of me thinks about the career I really wanted and my plans for further study for my dream cream as a therapist with children. Now though I’d be interested in also working as a therapist with people with disabilities; help them get their head being newly diagnosed, grief for their old life or to deal with medical trauma and other such related things. 

Maybe one day I can return to some form of education but my focus at the moment is on just getting through each day and managing as best I can. It is difficult when you live in pain all the time and for me my health is so unpredictable and I have mini crashes and Post Exertion Malaise so easily. I need a lot of rest to manage my conditions.

Thoughts about disability 

I’m proud to say I’m disabled now but it did take me a while to accept that. My disabilities and health conditions don’t define who I am but they’ve shaped me into who I am today and I’m I different person for it. I’d say I have more resilience and I have more gratitude. My health has also over time made me realise who matters in life and who my true friends are too. I’m proud to be part of the disabled and wheelchair community.

Pen palling

Pen palling is something I really enjoy and I’ve been doing it for many years now. 

I got into it it when I came across a group on Facebook called #LettersOfLove set up by Jenny who I still occasionally contact. Jenny’s aim of the group was for members to write to each other with no obligation to write back. I really got involved in that group but in the end very few people were participating and just wanting to receive mail but not send so the group came to an end. I met one pen pal from that group who I still write to today so I’ve been writing to him for many years now!

I’m not sure where my pen palling went from there. For example how I found people to write to. 

Apart from my pen pal from the Facebook group I don’t think I write to anyone from the people I used to write to when I first started pen palling. Sometimes pen pals just fizzle out over time or you find you have no similar interests so I find there’s no point in writing or I’ve had the occasional negative pen pals. Also for myself having chronic illnesses/disabilities I’ve have pen pals with health problems too. I’ve got some current pen pals with health problems but it’s very positive and we rarely talk about our health and we’d rather write about other things, which I like. However in the past I’ve had pen pals who write about hardly anything other than their health problems and they also make made feel like my health problems were a paper cut compared to them. I found this really got me down as I do really struggle with my health. 

However it’s not all bad; I’ve had some lovely pen pals in the past.

Over the years I’ve written and gotten to know many different people. Some people I don’t write to anymore while other people I’ve been writing to for quite some time. Other people I used to write to regularly but now we just write every so often.

Currently I write to people in the UK as well as having pen pals in Sweden, Switzerland, Germany, New Zealand, the USA and Canada.

I’m also part of the Chronic Warrior Collective card swap. You can opt in or out each month depending on your circumstances and if you’re able to do it. If you opt in you write to one person and someone else will write back to you. I personally choose to write to people within the UK as stamp prices as so high for international mail. Some months the card swap has a theme that you can choose from for example in October there are three themes to choose from: Halloween spooky, Halloween non-spooky or Autumn themed which is the one I opt for. Last October I made my swap a pumpkin spice latte themed card. Don’t worry if you opt in then find you can’t write to your match as the CWC has a ‘Yikes Team’ that you can ask to write to your match on your behalf.

I’ve made a few friends through the card swap. I also help out with a related scheme called Cards 2 Warriors. People either nominate themselves or are nominated by someone else because they’re having a tough time with their health whether that be physical health or mental health. They can be ill themselves, or caregivers or medical professionals, or a mixture of these. There’s also a long-term list of people who need long term support. Both those on the short-term list and the long term list are sent out mail to give them some support and to remind them that they’re not alone and how awesome and strong they are.

Cards 2 Warriors means a lot to me as I not only volunteer by sending out mail. I love doing this, making personalised cards based on the person’s profile and just writing messages of support. But as well as sending mail with C2W I also receive mail as I’m on the long-term support list to receive mail. (I’m not quite sure how this came about?) So whenever I receive the mail from a volunteer it really means a lot to know that someone is thinking about me and is wanting to give me some support and remind me that I’m not alone with all the health challenges I have to deal with each day. When I receive mail I feel so much love and gratitude and it makes me wonder how the person I’ve sent mail to feels when they receive my mail?

I’ve made some friends and pen pals through the CWC and C2W who are based in the UK and various other countries.

Mail to Lia in New Zealand

When I write to a pen pal or friend I love making each letter, card or postcard I send to a pen pal unique. I’ve never sent two pieces of mail that look the same.

Sometimes I’m able to write a letter varying in length. Some of my pen pals write more than others. Sometimes I write a card and sometimes I might continue on paper if I have more to write about. Other times if I’m not able, for example if I haven’t been able to reply to a pen pal for some time I’ll send a postcard or sometimes I just want to send a postcard. I’ll write as much as I’m able to on the postcard. I like to have a stash of nice postcards either novelty ones I’ve bought like a rainbow shaped one or ones I’ve coloured in previously.

I’m really grateful that all of my pen pals are really understanding that it can take me a while sometimes to get round to replying to them and/or that my reply might not be as long as their letter to me or that all I’m able to manage this time is a postcard.

Out posting mail 

One of my favourite things to do is take a ride on my Batec to the local post box to post my pen pal mail.

I have some really good conversations with my pen pals and we write to each other about all sorts. Books, crafting, not buying writing and craft supplies and using up what we have instead, current affairs, their work, holidays, crafting, bullet journaling, TV shows, podcasts, doing up our homes and outdoor spaces, stamp prices, pet antics and so much more!

Recently I’ve been watching some pen pal videos on YouTube to get some inspiration on how I can make my letters more creative and as a bonus get more of my craft supplies used up. I’ve written a couple pen pal reply’s so far this year and I really enjoyed just using my imagination and the inspiration. My first creation was to Lia, see her mail above. I’ve also made an envelope flip book. I’d like to try and make an accordion card next. A lot of my inspiration comes from the ‘Craft with me’ videos on The Paper Letter Blog YouTube channel. I wanted to make something jazzier and just a letter in an envelope.

Some pen pals I write to more frequently than others. Some pen pals are still my friends, we just don’t write regularly whereas others we exchange letters back and forth. Due to stamp prices I am thinking of slowing down how quickly I send a letter. Thankfully my international pen pals I don’t write to regularly so that does save me some money. UK 2nd class stamps aren’t too bad to buy however an international stamp for one letter is £3.40 (and they’ll go up soon). Royal Mail used to put their prices up annually and only by a few pence; now they increase prices multiple times a year and quite significantly.

Back before I moved into my own home and I lived at my Dad’s I had a giant notice board next to my bed and I had a collection of novelty push pins for it. I was really sad that there wasn’t room in my bungalow for the notice board to go up anywhere.

Now in my bedroom I have fairy lights going across two walls with pegs on them as a new alternative. I love the variety of what my pen pals send me. I peg up cards and little extras people send me. It really brightens up my bedroom and gives me something positive to look at and to remind me of all the people in my life that are my friends that care and support me, especially because so often I have to spend a lot of time in bed because of my health and/or because I need to rest. The mail adds some personality to my bedroom and nearly everyone asks me about the cards when they see them. I love the fairy light element to them too, just having some soft lighting in my bedroom and I can dim them lights if I want to as well.

I’d recommend pen palling to anyone, especially if you’re experiencing loneliness or isolation. The CWC card swap is probably a good way to start. One of the options you can go for alongside writing domestically or internationally is going for the the option of the intention of maybe becoming pen pals with the person you’re writing to (just remember to put your address in with the card or on the envelope.

Favourite things I got in my advent calendar

The past couple of years I haven’t had an advent calendar so this year I decided to treat myself to a beauty advent calendar from Birchbox. It cost me £85 but it has £460 worth of products inside! Some things are full size products while others are smaller versions of the full-size product.

Here are the favourite products I received:

• Day 1 - PawPaw over night lip mask (seriously this stuff is magic!)
• Day 2 - Evolve superfood 360 serum 
• Day 6 - Revolution highlighter
• Day 7 - Balance Me, Radiance face oil, roll-on
• Day 8 - Dr Eve_Ryouth night moisturiser (currently don’t have a night moisturiser)
• Day 13 - Jade Gua Sha facial stone (to go with my face oil)
• Day 14 - Beauty Works comb and heat protection blowdry crème
• Day 19 - BYBI Blueberry Booster facial oil
• Day 20 - Philip Kingsley deep conditioning treatment (to use before washing my hair) plus a Mudmasky vitamin-A booster blue clay mask
• Day 22 - Nuxe dry oil
• Day 23 - Nail Kind Strenghener - vegan and naturally sourced products 
• Day 25 - Kate Somerville, DeliKate Soothing toner

I really liked this advent calendar and it’s given me some great products to make my daily skincare routine a bit more luxurious as well as products to use throughout 2026 as self-care treats.

Looking back over 2025 and into 2026

So what were my goals and intentions for 2025

• Set more time aside for self-care

Done

• Rest more and try to create a schedule for my day

Not quite always done

• Engage more in my faith - attend more Meetings for Worship and join in with groups run by Friends at the Meeting House

Sort of doing more now these past few months. I join in on zoom fortnightly.

• Spend less and use up what I have especially when it comes to craft and stationary supplies

Done

• Read up the books on my shelf and don’t buy new books unless they’re already part of a series I’m reading that’s on my shelf 

Not quite done as I got my Kindle 

• Continue with my 1SE project for 2025

Done

• Do my Jar Project with my best friend 

Done

• Continue to spend less time on social media 

Yep I’d say to that one

• Do random acts of kindness 

I’d say yes to this too

In 2025 I managed to do:

Me and my best friend set out to declutter, save money and not buying craft things or pen pal supplies. We did this jointly to support each other with these goals throughout 2026.

• Decluttering most of my bungalow. I’ve donated a lot and thrown out a lot. It’s made me realise that I don’t need so much stuff. I listened to a book on how to declutter and simplify your life and from that I made a detailed floor map to break down really simply the areas that I needed to declutter. This helped with my ME and pacing the task too.

• I also reduced my craft supplies and donated wha I didn’t need or would use to the hospice for patients there to use in craft groups. I’ve bought very minimal craft supplies this year and I used up what I had; most of what I have bought was to help me use up what I have like aperture cards to use up my iris folding papers.

• I stuck to buying no pen pal supplies and again I’m using up what I have. 

• I also tried to spend less this year and have as many ‘spend-free days’ as possible. When I had a ‘spend day’ I’d group together everything I needed to buy so as to have less ‘spend days’.

• Do some opportunities in my role as a Storyteller for the disability charity Scope. I also volunteer with Cards2Warriors and send mail out to people having a difficult time with their health.

• Continue another year with my blog. I’ve taken a back seat on social media with my disability accounts; I want my social media to be positive plus I was finding it exhausting making content.

A project I did this year with my best friend was something my old therapist suggested; it was a jar project where we write notes to each other and put them into the jar. We’ve exchanged the jars to open in the new year which can is often a difficult time so it gives us both something positive to do in the new year.

In 2026 I want to:

• Finish off my decluttering my bungalow and sending off my box to the charity shop so it’s not cluttering up my bedroom.

• Again, not buy any craft things and continue using up what I have.

• Carry on using up my pen pal supplies. - I eventually just want to have a stash of pretty note pads to write letters on and make my own envelopes.

• Try and spend even less and have more spend-free days.

• Continue my role as a Storyteller for Scope and hopefully there will be some opportunities for me with them next year.

• Continue brightening peoples day with mail through Cards2Warriors. I also hope to do some artwork and design some cards for The Chronic Warrior Collective which is a connected organisation to C2W.

• Carry on blogging for my 8th year with as many posts as I’m able to write. I aim to still do disability content and I want to write more about mental health but I also want to try and do more non-disability content as well.

• Read as many books as I can now I have my kindle!

• Do 1SE again.

• Sell or donate the clothes hanging on my wardrobe door.

• Get to a point where I’m happy and recovered from my anorexia or have learnt to control it rather than it controlling me.

• Go on as many Batec adventures as possible - I’d love to go to the woods and down the sea front. 

Helplines open over the holidays

 Samaritans

• Call: 116 123

Open 24/7 every day of the year

• Email them here

• Online chat

Beat, Eating Disorder support 

You don’t have to have a diagnosis to contact the helpline

• England phone number: 0808 801 0677
• Scotland phone number: 0808 801 0432
• Wales phone number: 0808 801 0433

Open: Monday - Friday, 3pm - 8pm

All free phone numbers

Calls can also be accessed in BSL and Welsh

• Email the England helpline here
• Find email helplines for other UK countries here

• Web chat here

Shout

• Text ‘Shout’ to 85258 for support 

Open 24/7 every day of the year

The Mix

• Support groups in the run-up to Christmas, these are for young people under 25

CALM

• Call: 0800 58 58 58 (free phone) 

Open 5pm - midnight every day 

• Live chat

• WhatsApp

Release the Pressure

• Call: 0800 107 0160 (free phone) 

Open 24/7 every day of the year 

• Email them here

• Web chat
  

Mind

Side-by-side peer support

ME Connect

From the ME Association 

• Call: 0808 801 0484 (free phone)

Christmas open hours:

Christmas Day: 10am-1pm, 6-8pm

Boxing Day: 10am-12pm, 4-5pm

New Years Eve: 1-6pm

 

All other days should be our usual opening times.

Monday – Friday: 10am-6pm 

Thursday: late night until 9pm 

Saturday: 10am-12pm 

• Email the helpline here

EDS UK Advise line

• Call: 0800 907 8518 (free phone)

Open: Tuesday’s and Friday’s 9am-3pm

• Email them here

If you are in immediate danger or need of urgent medical help call 999 or NHS 111

How to make your Christmas chronic illness friendly

Christmas can be really hard when you have a chronic illness and there are lots of elements to it that make it a challenge. Getting cards written and sent out, gifts bought and wrapped, homes to decorate. Plus there’s events to go to that you need to have the energy for plus the pre-energy to get ready to go out: getting dress up, doing your hair and makeup and nail. It’s exhausting even before you get there! Then there’s the post event energy comedown crash giving you time to recover before the next event. On top of that you have your health to continue to deal with as well! It can often feel overwhelming and just exhausting to even think about.

As well because of your health you have to decline invites to events. This brings FOMO; not the ‘Fear’ but the ‘Feeling Of Missing Out’ because you actually are missing out and that can be really hard. I find it hard because I miss out on seeing family members I rarely see and I’d like to be able to see the but I know realistically my body can’t handle the event. The only event I do over Christmas and New Year is Christmas Day with close family. I just go to my Dad’s for a couple of hours to have Christmas Dinner and to exchange and open gifts from each other.

Christmas isn’t just hard on our physical health it can be difficult emotionally too. Like I said above missing out on events or feeling down because you’re in pain or an increase in anxiety or stress levels because it’s a change in your routine which can be hard for those with autism or difficult feelings around food if you have say an eating disorder or because this is your first Christmas in which you receive artificial nutrition, or you’ve had a deterioration in your health since last Christmas, you struggle with loneliness or a whole host of other things that can make Christmas a difficult time.

Ideas for a more chronic illness friendly Christmas:

1. Get Christmas themed bedding. This will bring some festivity to your bedroom especially if you spend a lot of time in bed.
2. If you spend a lot of time in bed think about decorating your bedroom for Christmas. This is something I’ve been thinking about how I can do this, like where can I put a mini tree that I can decorate (I love Sass & Belle’s tree decorations!) It’s something I need to figure out but something I’d like to do as I don’t often get to spend a great deal of time in my front room where my main tree is.
3. Buy Christmas pyjamas - I got some lovely ones from Chelsea Peers.
4. Christmas can be difficult emotionally for different reasons so so maybe plan some self-care activities over the holidays. If you find Christmas Day especially difficult plan some things for Christmas Eve evening: make a hot chocolate, watch your favourite film or TV show series and do your nails and put on a face mask.
5. Remember that there are helplines that are open even at Christmas. - I’ll do a blog post on what helplines are open over the holidays.
6. Remember to take time out to rest just as you would any time of the year.
7. Instead of wrapping things you can put your gifts into gift bags instead to save you time and energy.
8. You can get wrapping gadgets like paper roll slicers and on hand sellotape dispensers. I have both of these gadgets and they really do make wrapping much easier.
9. Start Christmas shopping early. I even have a basket of gifts ready to give at any time. This saves me time and money as it means less Christmas shopping. Plus remember gifts are more about the thought than how much you spend on someone.
10. I find making lists really helps both my anxiety and it helps me make a pacing plan. On my phone I made two lists one for cards another for gifts all multi colour coded and looked like organised chaos. I now have another tick box list that’s much more simplistic in my bullet journal with all the final tasks I need to do so I can now pace myself with that list between now and Christmas and it eases my anxiety seeing what I’ve achieved and what I still need to do.
11. You don’t have to look red carpet ready when going to events; it’s more about being there than having fancy nails, glamorous makeup and fabulous hair. What matters most is you being there.
12. Treat yourself to a really nice advent calendar. I’ve found this year getting myself an extra special advent calendar gives me something to look forward to each day and I’m loving a lot of the things I’m getting. I got myself a Birchbox advent calendar with luxury brand products in it totalling £460! The products make my skincare routine just that little bit more special and it’s enjoyable using new products. This also helps me engage in more self-care over the holidays too.
13. Do Christmas crafts that you find you can do to get into the festive spirit. There are a lot of  low-level activities¹ and activities you can do in bed² for example I got a reindeer punch needle kit that I know I in bed and I can do on/off for short periods at a time.
1. * these are activities that I’ve classed as low-level, for some people they may be more medium-level 
2. ** these are activities that I’ve found I’m able to do in bed
14. Listen to Christmas themed audiobooks. My annual go-to it ‘Twas the night shift before Christmas’ by Adam Kay which I always love listening to and it is so funny.
15. Don’t feel bad for asking your care agency to come out to you over the holidays. You deserve the care just as much as anyone else.
16. Plan days of rest, for example for myself Christmas Eve, Boxing Day and the days after that will all be rest days for me to enable me to go to my Dad’s to spend time with family on Christmas Day in the afternoon. 
17. You could decorate your mobility aids for Christmas like putting lights on your wheelchair wheels or tinsel around your guide cane. 
18. If you have a medical device like a catheter, feeding tube, port, ileostomy bag etc. you can get Christmas themed tubie pads, valve, line and bag covers as well as tubie face tape.

Last minute chronic illness/disability gift ideas

It’s that time of year again and if you’re stuck for last minute gift ideas for someone with a chronic illness or disability here are a few suggestions:

• Heated blanket - Tesco, £29.99
  
• Rechargeable hot water bottle - Curry’s, £16.99
  
• YUYU long hot water bottle - Argos, £20
  
• Warmies® microwaveable warm animals - prices vary
  

Pippa Stacey’s two books

• ‘How to do life with a chronic illness’ - £13.99
  
• ‘Pave your way with chronic illness’ - £14.99
  

Both from Waterstones - both books are written to go with each other. They’re both also available on Kindle and the first book is also available as an audiobook but personally you’re best off getting the physical copies as Pippa has designed activities to do in the books, especially the second book which is very much like a journal.

• A fancy Blue Badge wallet - you can get nice ones from Amazon, Blue Badge Co and Etsy
• Travel card holder for a disabled bus pass or rail card - check out Etsy and Amazon

FFORA core essentials set - £99, FFORA

• Attachment system, cup holder, bag, thermal tumbler 

BundleBean wheelchair accessories

• Wheelchair cosies, organisers, spokegards

• Adaptive clothing including pyjamas from Primark and George at Asda
• Funky compression socks - Not Your Grandma’s, £18
  

• Lanyard phone case

• PopSockets - from PopSocket and Amazon

• 2-in-1 pill organiser water bottle - Amazon, £7.89
  

• Sleep eye mask headphones - Amazon, £19.75

 

• SpaceMasks - self heating eye masks
• Build a gift hamper at Bear Hug gifts

Experiences

Often people with disabilities find it hard to get out. You could gift them an experience like a day out, afternoon tea somewhere accessible or meets their dietary restrictions, or a gift voucher for a spa that is accessible.

Check out access guides like Euan’s Guide or AccessAble to find accessible places.

Alternatively you can gift experiences at home like look on Facebook for mobile beauticians, nail artists or if the person is into dance you could gift a virtual dance session with a gift card for Kate Stanforth’s Academy of Dance who specialise in disability dance.

(*prices correct at time of publishing)