I am disabled!
There, I’ve said it. I still don’t really believe it though, it’s a hard label to accept. I have two disabled children and it was hard to accept that, but how can I accept that it applies to me?
When I was paralysed by a spinal inflammation, Transverse Myelitis, at the beginning of the year I had no idea when I would get well again. What I found out was that recovery comes in three categories. The first is a full recovery, the second, partial recovery with some remaining disability, the third, no recovery, permanently paralysed. I have been talking to other sufferers of the condition and have learnt a few things.
Those that make a full recovery can walk, return to their normal lives and never have another attack. The truth is that even these people can have relapses and normal illnesses like colds, flu and UTI’s can have an enormous effect on them. The middle group, to which I belong, can keep trying for a full recovery. Although, they say you won’t recover any more after two years there have been some that have proved this wrong and gone on to recover after this time scale. Again, they are prone to relapses.
The third group can still work on some sort of recovery and hope that there are new treatments available. There has been a lot of work done lately on auto-immune diseases which could work for TM sufferers, particularly as the symptoms are very similar to Multiple Sclerosis.
So, what can I do that I couldn’t do three months ago when I was first paralysed?
I can walk unaided for about 2 metres. It’s painful to walk and I truly believe it’s the pain that stops me from being able to walk further. So, maybe if I can get the pain under control I might able to walk for longer. My walking is slow and not normal, but it’s still walking.
Because of the damage to my nerves my brain is not sending messages correctly to my limbs to make them work properly. Sometimes, the messages get through though so I’m forever hopeful for improvement. I cannot help the way I walk, I can’t seem to change it and walk normally or faster, but I know that it could be worse.
The pain never leaves me. I take a cocktail of pills to relieve it and some days I could tell you that they don’t work…..but if I miss a dose I realise just how much they are helping me!
I’m also taking homeopathic remedies, and since I started a new batch last week I have noticed a difference. More of my numbness as subsided in my legs, I can feel a lot better. Now I can feel itching, which was absent before. I can also feel sore.
I am disabled. I cannot walk outside my home and I am in constant pain. If I go anywhere it has to be in a wheelchair and trust me, it’s not easy getting used to that.
When I was first in hospital three months looked like along time away. Now, I feel it’s passed quickly and I feel it’s not the time scale I should be focusing on but how much further I can push myself into recovery.
I am disabled. I don’t like the term but it’s now how I’m defined.
I am disabled, but I won’t stop trying to get well again.
I am disabled, but I’m still me.