Living with an Unknown Disability

I have never been sure about writing this, it seems as though I'm baring my soul and for little recompense. But maybe it's a story that needs to be told.

I don't know how to classify my disability, it came on gradually from about the age of 13-14 when I was forever falling over and having problems getting to my feet again. I knew even then that something was wrong, but I couldn't seem to get anyone to listen. Perhaps if I'd tried harder I could have got my parents, more specifically my mother to listen, but the truth was that I didn't quite know how to approach the problem. Turns out that my Mum knew that something was wrong and had been trying for years to get me to open up about it.

People have suggested that I might be suffering from MS, but the only scan I ever had was over 10 years ago and was an MRI that didn't show any abnormalities - which as you might imagine, is no help. The only solution would be a spinal tap which I'd have to get privately and really, really doesn't appeal. Over the years I seem to have lost strength in my legs and the ability to balance so that now I have to 'furniture walk' to get around the house and I need to use a walker when walking any distance outside. I have a scooter and wheelchair too, because I can't walk any distance.

My lower body and upper body just don't seem to match. Even though I now go and see a chiropractor every 6 weeks it only just keeps me stable; there's no real improvement - or at least if there is, I can't see it! Or perhaps it's just the pessimism talking. That's one of the things I have a hard time explaining to able-bodied people, as most people with disabilities know, they often get addressed with remarks like 'You're so upbeat.' and 'You're so positive!' Well only because the alternative is to tell it like is which is things like, 'I couldn't get to the bathroom in time last night so urinated all down my leg.' Or, I had to climb a flight of stairs last week and because for some reason there was no handrail, I had to sit on the stairs and physically lift myself backwards to the first floor. My husband is a brick, but sometimes I know that it can't be easy looking after someone like me.

Luckily I live near a large town which is fairly well adapted to someone who is disabled and most of the shops and a number of coffee shops are adapted for disabled visitors. I only ever had one encounter which left me speechless, and that was when I went get a bowl of soup and a sandwich at this cafe, when I ordered it the woman regarded me for a couple of moments and then said, 'Have you brought your carer?' and I was so shocked I couldn't respond. I don't even remember what I replied but I do remember driving away. In the end I went to another cafe downstairs in another part of the shopping centre and they seemed a lot more aware of the issues involved.

I manage day to day, and have to try and look on the bright side because otherwise I'd spend my life gibbering in a corner and one can only cry for so long.