Well, I never believed it was possible that there was medication out there that would actually work for me. After trawling through what seems like the entire BNF for something that will work, it’s pretty unbelievable that it seems like I finally may have found something that actually does.
I was given Pregabalin for neuropathic pain. I admit I was skeptical – nothing has ever worked and I am hypersensitive to opiates, so I have never been offered anything that gave me any pain relief without making me extremely ill from side-effects. I never thought this new one might actually do anything. Instead, it’s actually working. Slowly – but it’s still working.
After a while of it building up in my system, raising the levels every few weeks, and with only fairly mild side effects, it seemed like one day it just suddenly started to work. I managed to a few things on my own without too much difficulty. They were little things the average person would take for granted, but to me they were huge. It wasn’t like it completely magically cured me – far from it. But the mind-blowing sharp pain that constantly kept me plaguing me and leaving me in tears, unable to even move and quite literally sometimes almost unable to breathe, was eased. Not gone, but significantly eased.
After getting my hot water dispenser and clever choice of easy food, I celebrated when I was able to get up on my own (slowly, but not too slowly this time!), walk to the kitchen without my stick (slowly, but surely!), sit on my bar stool chair, and make my own coffee and sandwiches and bring them in. All without Doggy’s help! Doggy lay on his pillow in the kitchen and offered moral support in exchange for some ham. Then he offered more moral support when I ate my sandwich by helping me eat it. He’s very generous like that…
Right now, I can actually feel the pills as they get into my system and start working, which is nice (and may be entirely my imagination too…). In the morning before I take them I’m still in almost the same pain as I was before, but there is some minuscule difference now even then – it’s not quite as sharp and mind-blowing as before, which is hopefully showing a step in the right direction. Once I take them, within about two hours there starts to be a difference in how and what I can move. My fingers become less agonising and start moving better. They’re not stiff with sharp pain and aching raging through them. As the pills build up, I can – to a certain extent – type, use a mouse, an Xbox controller. I can’t really move for another hour or two, but then I can get up (very carefully!) without Doggy’s help, make some hot sweet tea or coffee, even make a basic sandwich, without too much difficulty. I still need Doggy’s moral support though, because it is still difficult, even if it’s not mind-numbingly agonising. There’s something very unfortunate about being so happy to finally being able to do such little things, or even make it to the bathroom on your own without any help, but it’s so amazingly freeing when that option is given back to you. It’s awful you couldn’t do it in the first place, but it’s really great when you can do it again, even if it’s not all the time.
The pain is still there… but it’s numbed a little. It’s masking it, making it feel extremely uncomfortable, rather than having that sharp, searing pain. Like having a local anaesthetic for something rather invasive… it feels a bit like that. It probably also helps that Pregabalin is a well-known GAD treatment. I think its GAD side works well on me too, which probably helps an awful lot too. It’s extremely stressful, distressing, and anxiety-inducing to be incapacitated by excruciating pain for so long. It’s incredible when even a small amount of your mobility and ability is returned to you by just dulling the pain just a little. So you can breathe. Think. Have a small break.
The pain relief the pills give me don’t last too long, and it’s obviously not perfect. It’s not the full dose, so I still hope that I may get another little step forward when I finally have them raised to the full dose.
I can’t run about, ride horses, do yoga, walk unaided and go out without Doggy (or a wheelchair – yet…?). And perhaps I never will. But if I can do some basic things like look after myself in the house without being afraid of being left alone, that’s a huge deal, and I’ll accept that. Independence is the most important thing when you have it taken away. Recovering even some of it is a huge goal and feels great if or when you get that some of it back. You’ll take anything, and be grateful for it. It would be great to be able to walk a little outside on my own, with my stick and have doggy walk with me, rather than having to pull me. But we manage OK the way we are, and it’s good for Doggy to have a job.
I still can’t play games for long hours anymore, type a lot, or make some food without a lot of pain – but that pain is still numbed in comparison to what it was before. And at least I can do those things a little, and the pain I have is pretty bearable in the most part, as long as I take it easy. Right now I take what I can and celebrate every little thing I can do. I’ve had to learn to think differently, stop being so hard on myself, deal with things as they are without question and try to be OK with it. It’s not easy, but I start by celebrating what little things I can do, and try to troubleshoot the things that I can’t. Try to work my way around them. It’s difficult, and learning to accept is a hard lesson to be learned. I have to accept my body for what it is, and what it isn’t, and I shouldn’t expect anything else. We don’t live in a world, a society, that thinks like that though… So it’s hard to do so. But I think I’m getting there – quite slowly, but I am.
Some days are lighter than others. Some days are downright dark. But the little things matter and so I try to remember that.
These things may be one small step for man, but they’re a giant leap for a Lel – so I’ll keep going.