Sigh. And then another sigh. Oh dear, that sounds arch, when what I want to relay is really rather despairing. It’s one of those days, weeks, possibly months, when I have to seize upon things in order to keep going; that smile from a passerby, the ‘I love you’ from a friend, thoughts of my mother and extended family, the piece of music that made me cry.

It’s six years since the accident in which I broke my back and nearly destroyed my feet, while also breaking my left arm. Given the number of days that I let the memory roll off me and stay as cheerful as I can, perhaps I shouldn’t struggle when days come in which good cheer is harder to muster. It’s better than it could be (after all, I could have broken my neck and/or lost feeling below the waist) but it’s also worse. Some people make remarkably full recoveries from broken backs. Mine, however, has never stopped hurting. It hurts most around the area where the metal is implanted in my spine. I have no real left ankle and every step I take causes pain. Further to that, my walking each day is finite. I have to think about how to use it because at some point it will run out. For six years, I’ve lived in hour-long bursts. Each day, the medicine I’m prescribed buys me that one hour (max two hour) burst, so each day is constructed around it. I can use it to a) sit upright and do some work or b) do some exercise or c) do something sociable. Thanks to morphine sulphate, sevredol and pregablin, I get one of these magical windows every day when the pain is still there, but less so. Better, more long-term solutions have certainly been sought. I’ve tried an array of injections into the spine, no result. Now, I await something called spinal stimulation therapy. In the meantime, other areas need attention. When you break the spine, everything from the breaking point and below is affected. There are knock-on effects I’d never have considered had it not happened to me. Now, on top of the other physio, I have to stop whatever I’m doing and, once a day, use a pump device to try to diminish the damage spinal injury has had on my penis. It’s so horrifying that, really, any day I’m able to usher away feelings of suicide ideation is a victory. It would never have occurred to me; as a result of spinal injury, I don’t get nighttime erections. Consequently, there is penile atrophy. As well as being hideous in its own right, it leaves me wondering if I’ll ever have a meaningless fling again, let alone a relationship. I don’t talk about it widely. I want to hide from it, it’s so distressing and depressing. I wish I could cry, but the regimen of meds leaves me at a strange remove from my own emotions. That being said, I can certainly feel some of the negative ones, including paranoia.

I wish a solution were in sight. I’d like to study something, to retrain in some way. I’d like to work full-time with people on a team, but I’d settle for part. It’s not possible. There isn’t a job I know that would let me work one hour one day and two hours the next, half an hour the day after that, lie down whenever necessary, take breaks whenever necessary, while still remunerating me. So I work from home. I’ve had to cancel osteopathy; those weekly trips to the BSO in Elephant & Castle left me done in and of no use to anybody for the rest of the day. What will happen to me? What should I do? So, no, not giving up, but unsure of what I’m keeping going for, except for the slender hope of improvement. At least today I know what I’m doing with the magical window; exercise class. There’s one class I can do because it has little foot-work (I sit out the lunges section, because there’s no spring in my feet; they are unbiddable breeze blocks attached to my legs). Holding weights actual improves my balance (not long-term, but just while I’m holding the weights), because running more weight through my body seems to compensate for the fact that my soles cannot feel the ground like normal feet do. And I know about Saturday and Sunday, too. Saturday, cinema (taking hefty dose to cope with the pain of sitting) and Sunday, dropping in on friend (armed not just with meds but also orthopaedic cushion and, of course, the catheters that have to come with me wherever I go).

 

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