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.