October 2020

I used to get spasms- lots of them – that jerked my legs, and with it my body. They’d keep me awake most nights… for years My sleep was broken, to say the least ( and of course the sleep of anyone in the same bed – not exactly a plus for her ) Now I get far fewer jerks.. but instead now, and as a consequence of having been ‘ fixed rigid ‘ by my ( it’ll be proven negligent surgeon ) my legs are just rigid all the time. The ‘ tone’ in my leg muscles is extreme. Any attempt by me to move a leg with my arm(s) and the leg(s) just resist It means transferring or doing pretty much anything I learned to do post injury that involves me moving from a chair is now impossible without a significant amount of help from another person ( or persons ). Trying to get me onto a sofa, or into bed, is far from easy… because my leg rigidity prevents it. They anchor and grip me into whatever position I’m in, so that changing from it ( by myself ) isn’t possible.
I went back on Baclofen for a bit to try to loosen them, but immediately my memory ( especially long term ) became extremely fuzzy in an alarming way. I had a telephone conversation with my Stoke Mandeville consultant about it, and he’s going to see me and advise on a plan to help me.

Spinal Cord injury is really bad news. It’s the gift that keeps on giving. My mobility is at an all time low. My legs look, to others, reasonably normal, and the tone keeps the muscles in fair shape, and also my skin isn’t that fragile, meaning I don’t sustain pressure sore type injuries. So there is an upside, you could say.
So you either get legs that you can manoeuvre and increase your mobility but they waste away and you get pressure sores, or you get legs that look ok but you can’t bloody move, and you always have to trade a bit of one for the other.
Depressing sounding, isn’t it? Well yes it is, very much so. No win situations seem to surround me at the moment, obviously exacerbated by the pandemic and it’s restrictions that have further hampered my already severely restricted choices.

With Lizzy’s ( significant ) help I had a flat clear out. For a long time I just found it too painful to throw objects from my old life. Kit and equipment I just kept, for years, out of nostalgia for a life lost. It would be fair to say that I had a lot of kit… but the act of just getting rid of it was definitely a positive. Probably 40 bin bags’ worth of stuff went to the dump. Lots of it could have been useful for someone I imagine, but I always think that when I visit the dump. We all throw away so much that really there’s nothing wrong with, and I’m by nature just not wired that way.
My flat however has far more space now than it did a week ago!

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