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.

Some of my chair’s features

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