Ah, the scare quotes are too cynical. Progress is being made even though it doesn’t feel much like it at this precise moment
I’ve halved my dose of Pregabolin from 600mg to 300. I’ll stick at this dose while the pills last (a month) then down to zero.
I have noticed three things:
The pain is bad, even by my usual standards. It is very, very bad and in new and exciting ways
I’m learning to extend my usual defences and I’m slowly, slowly starting to think I can probably get on top of it in time
The fog I’ve been thinking through for a year is clearing already
That last point alone makes me feel it’s worth it, even though I’m resigned to never being free of this pain and never being able to fully relax my defences. I’m starting to feel a lot more like me and more aware and creative than I have in a while.
I’ll write about what I’m doing to control pain – or at least my response to it – another time. Any and all suggestions are very welcome, but don’t be upset if I’m skeptical. it’s my default setting.
NOTE: I am not anti-pain medication and nor should anyone else be. I couldn’t have coped so far without pain medicine. I’m stopping because I think this particular medication is not right for me at this time. I do not encourage anyone else to do the same and certainly not without consultation with the appropriate medical professionals.
Well, a couple of things to report, otherwise I wouldn’t be reporting it. I wanted to write about my training regime in a bit more detail, but it’s been a little light for the last two days because of especially bad pain. I’m always in a lot of pain, mostly in my legs, but I can generally cope with it. But then it flares up very badly once or twice a month and things become a lot more difficult. The last three days have been days like those. Training has also been difficult because the stiffness/numbness in my hands each morning has been getting worse. I don’t know whether this is because my condition is spreading or whether I’m sleeping more heavily due to exercising more…. and simply lying on my hands or something, like a cat. But it has meant that I haven’t been able to start training as early as I’d like, which is making it harder to fit into the day.
Anyway, I’ve managed to keep to two hours a day training on the rolling road, although it’s been hell and I haven’t exactly broken any records. I’ve done enough to keep myself from stiffening up and to keep my heart at almost-but-not-quite-ready-to-explode levels of activity at various points throughout the day, which is what I believe the World Health Organisation recommends. I might be paraphrasing.
The other news is that I am almost ready to order a new wheelchair! Details are being finalised and I’ll write about them once they are. If all goes as planned, estimated delivery time will be mid-August.
I can’t see everything going as planned, though. Can you?
As origin stories go, this one is a bit, uh, lame. I wasn’t bitten by a radioactive disabled person or anything. Well, I might have been, I’ve been bitten by a surprising number of people, but that probably wasn’t the cause of all this. “Probably”, though, as is close as we’re likely to get to an explanation because nobody knows, as yet, what happened.
In spring 2020, I noticed that my right leg was becoming unresponsive. I had trouble lifting it over the sill when I got into the car, for example, and I tired very easily, especially on stairs. I tried to convince myself that it was down to some particularly heavy boots I’d bought (pictured) but this was just ordinary human cowardice. I decided I really needed to go to the doctor when I fell down the steps on the way out of the opticians (even then I entertained the idea of blaming my new glasses) and had a very difficult stumble back to the car.
Badass but heavy boots, not to blame for mobility issues
The GP thought it might be a spinal disc herniation (a slipped disc in old money) which was pushing on my spinal chord. This was quite a difficult time because it was the height of the first COVID lockdown, the NHS was straining and in disarray and the only thing anyone could think of to do was send me for more and more MRI scans
This is how I choose to remember that time
This didn’t help much. Nobody was communicating so the results of the various MRIs weren’t building up a picture of what was happening to me. They showed that whatever was wrong, it definitely wasn’t a slipped disc. I don’t blame the NHS in the slightest for this; it had enough on its plate. But it was a frustrating and worrying time. In the meantime, the symptoms were getting worse. I had increasing difficulty walking and couldn’t manage steps at all. Getting out of chairs was very difficult, as was getting back into them. And my legs were very painful, all the time.
Eventually, it was decided that the problem was neurological. I suspect this was because they’d ruled out all the obvious things and this was what was left. I was referred to the neurology team at James Cook Hospital in Middlesbrough and was in and out of hospital for inconclusive tests.
This is where things stand. There’s definitely a problem with the nerves controlling my thigh muscles and this is very unlikely to get better. The nerves seem to have been damaged by something, but it’s anyone’s guess what. The smart money seems to be on an over-enthusiastic reaction by my immune system to a virus, but we’ll probably never know. The neuro team is “monitoring” the situation, but I think that’s code for “waiting to see if it gets worse.” What they’ll do if it does remains unclear. So far, I don’t think it has, although recently my hands have been numb in the morning, which worries me a great deal.
So here are my symptoms:
I can’t put any weight at all on my legs if even one of my knees is bent. If I do, down I go and no force on Earth can stop me. I can’t seem to learn to compensate for this at all, just not to bend my knees when there’s any weight on them. I can walk a little without bending my knees but it’s exhausting and I have great difficulty unless there’s something handy to grab hold of, even if I use a stick. Even slightly uneven ground is very difficult; my brain isn’t getting the information it needs to compensate. Stairs are impossible to walk up and down, but I can manage them through undignified shuffling. My balance has improved a lot through practice and training so my mobility around the house is much improved. I can get in and out of chairs more easily than I used to, having learned to compensate with other muscles, but if I can’t take most of the weight on my arms, then it’s not happening. I have to resort to crawling around on the floor until I can find something to climb up.
The pain in my legs is constant and very bad. I have extremely painful bouts of muscle spasm in my legs and sometimes other places which happen about twice a day, lasting for about an hour each time. I suspect these are partly a side-effect of medication and there’s some hope that it can be dealt with. Painkillers other than opiates don’t help and since an opium addiction would be marginally worse than the pain, I’m avoiding it for as long as I can. I’m taking nerve blockers, which seem to help a little bit (muscle spasms notwithstanding). I have a pain review meeting in August, but there aren’t really any that I know of. There are different types and doses to try, though, and injected rather than oral delivery if nothing else works. Hopefully the review meeting will be the start of a process and we can dial into a solution that works OK. I’m not expecting to ever be pain-free, but it would be nice to reduce it to a manageable level at least some of the time.
This is where things are and why I’m in a wheelchair most of the time. Next, I’ll write a bit about why I want to do wheelchair marathons and why I want to raise money for VAWG charities.
