The fight for a wheelchair – part 1

After several times at work when I was not able to work short distances anymore I realised I needed a wheelchair. It had got to the point where I was avoiding going anywhere as I was afraid my legs were going to collapse underneath me. I tried crutches and these were great for short distances, but far too fatiguing for any distance.

When we went to museums as a couple we hired a wheelchair, but they did tend to be old with their own little quirks. The first time I hired one was on Gavin’s birthday in July.

This started to occur while I was at ROH and there is an Occupational Health adviser (those ballerinas take a lot of looking after) and she told me about Access to Work and I was able to investigate from there.

My Dr agreed that I needed a wheelchair and wrote me a supporting letter to Access to Work and then ROH wrote an amazing email to my advisor, after I found out that there would be a 6 week delay before I even got a phone assessment.

In the mean time I had researched different wheelchair options. I follow Hannah Ensor who runs Stickman Communications and she has the same condition as I have and so I booked an appointment with her wheelchair seller- GBL over in Middlesex, as I figure at least I won’t have to explain myself and my condition again.

This sounds like it is all really straightforward, and it isn’t. It has been really hard to accept that I need a wheelchair, not least of which because I feel a fraud. At the time of writing I can still walk short distances (although despite my efforts that is declining on a daily basis), however I lurch around like I am drunk, my legs can literally give out from underneath me and when that happens immense pressure travels up my arms and shoulders as they are forced to ‘catch’ me and take the weight on the stick or crutch.

As my arms and shoulders were actually ok I became very paranoid that I would damage them, as they were starting to hurt a great deal from the added strain.

I had begun not to go out unless I really had to for work. This begun to drag somewhat and was somewhat depressing, it also meant that I wasn’t swimming. It is vital that I retain as much fitness as I can in order to stay as healthy as possible.

When I went to a disabled archery event I overheard a woman being questioned by the organisers about her condition and I heard her mention that she has HMS/H-EDS. So at the end I went over and asked her if I could speak to her. I told her what was happening to me and that I wanted to get a wheelchair, but I was unsure if I should and I explained all of my feelings around this. She told me that if I thought I needed a wheelchair then I did, that she put it off and did more damage to herself. She also had the wheelchair that I wanted and she explained how she got hers through adult social services.

She also said that she could still walk a little distance. This reassured me, and during the course of my research I found out this thing wasn’t that unusual and is called ‘part time wheelchair user’. Despite a lot of time working with disabled people when I was younger I had never come across that. So much to learn, luckily researching is one of my favourite things- I truly believe that knowledge is power.

Read part 2 here



  1. This was really helpful, thanks Jen! I am getting to the point where I think I may need to consider a wheelchair & am at the point you were at where you felt like a fraud! I don’t want to loose my independence like I did when I had to resort to crutches & have a compile of important hospital appointments that at the moment I’ve no idea how I’m going to get to as I just can’t walk the distances I need to! Xx

    Tania | When Tania Talks

  2. First of all, remember there is hospital transport and they will provide the wheelchair in the hospital – if you can drive there yourself you can request s wheelchair.

    My wheelchair helped me to keep my independence when I was at my most vulnerable.

    I still use it if I am going to be on my feet for more than half a day and it means I don’t have to worry about legs giving way or not being able to make it through the day.

  3. Thanks, I need to look into this further. I know there is a volunteer service to the local hospital, but I refuse to go there anymore as I have had a number of incidences where they have caused me harm. I’m in complaints proceedings with them at the moment as a result. I’m seen in London & Birmingham for my specialist appointments & Coventry for the rest. Unfortunately, because I loose consciousness with my migraine I’m not allowed to drive either. I do have a very supportive network of friends & family, but I really don’t want to loose my independence.

    Today has been hard. I’m struggling to put weight on my left ankle, but also struggling to use my right crutch because of the pain in my shoulder. I’m glad my pre-pregnancy appointment is next week so I can speak to them about it & see what they say.

    I’m really glad your wheelchair allowed you to keep your independence & that you sitll use it to help with pacing.

  4. Gosh, yes you don’t want to go back to them then. We don’t have a volunteer service we have a proper one, I can’t believe how much services vary across the country.

    I’m sorry you are having a hard day, I’m struggling right now too. It’s so difficult!

  5. I hope today is better for you! Our postcode lottery is crazy. My sister was diagnosed 6 months before me & yet I’ve been seen by a physio & she, 18 months later, still hasn’t had the referral her GP should have arranged despite the recommendation by the rheumatologist who diagnosed her. She is in Essex & I’m in Warwickshire.

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