I’ll be honest as I write this one tonight. I’m doing this to distract myself. I’ve probably written a similar post in the past, but right now I don’t care. I don’t care if this one doesn’t get as many views as my last (thanks for that everyone btw). So, I won’t blame you if you skip this one and I apologize in advance if there is a slight tone of “whine” to this one. Once more bear with me.This one is for me and to get through this evening. It’s about something else I never could have imagined before I became a paraplegic…yep it’s up there in the title. Pain.
You see…I’m in a lot of it right now. And it makes no sense. It’s my legs that hurt. Not just hurt, but they are both burning as if someone had stuck electrodes across every inch of my skin from toes to hips. It makes no sense, because normally, as you all know, I can’t feel a damn thing in those legs. I’ve cut myself, burned myself, had Shannon kick me under tables when I won’t shut up at a dinner, had her desperately trying to get my attention by swatting my leg before she curses and remembers she needs to aim higher. I don’t feel any of that. But then…I get nights like tonight.
They didn’t tell me about any of this in the handbook! Oh wait…there was no handbook…I was sent to the wrong kind of rehab hospital. Right, right…still…before all of this, it’s another one of those things that I never imagined. If your legs don’t work, if you can’t feel anything in them…how is it possible to be in pain from them? And what the bloody blue blazes causes that pain anyway? My damn brain isn’t sending or receiving signals along my spinal cord past T6 (oh did I mention they’ve determined the damage is now that high?), so why do I feel like this tonight? Oh I am sure I can once again google causes and remedies at home and all different ways to deal with it…but tonight…I am just going to stream of conscious vent.
Let me try to give you an idea what this is like. It’s a gorgeous summer solstice night and the sun has finally set. About two hours ago, I had a sense of what I was in for when my legs began to jump and flail more than they have in a long time. Then…the burning started. It usually begins in my toes, then arches of my feet, but it’s at its worse in my calves and thighs. It doesn’t hit slowly…once it starts it goes quick and never in just one leg. We have no idea what really causes it, though we understand its neurons misfiring and sending bad signals that get interpreted as pain. Storms seem to trigger it, whether summer thunderstorms or winter blizzards. This is purely anecdotal thought and there is no proof that it is a cause. So no point worrying on what’s at fault, I am left trying to find ways to deal with the pain, to ignore it, bypass it, ease it. To keep going and not just give into it. That isn’t always so easy.
Medically, I have two meds I’m on that can help with it. Baclofen is a set of pills I take three times a day, that helps to ease the spasms in my muscles and prevent the spasticity that can lead to this. I’m on a high dose of it and it has the unfortunate side effect in that it can’t target JUST your legs. It affects all of your muscles, leaving your body weaker in general than it would be normally. Also, you can’t just stop taking it, as that can lead to seizures…so…side effects. For the nerve pain specifically there is a med called Amitriptyline. That’s one I’m supposed to take nightly and it does honestly help…with some major tradeoffs. It royally screws up your gut and also has this unfortunate aspect of weight gain. Seriously, my eating habits haven’t changed much but I’ve put on more weight than I care to admit…so…less pain…but a gut that both expands AND doesn’t work. Decisions, decisions.
So what else? Well I do try to distract myself…usually that ends up being a video game, something mindless that I can just blast away on that will keep my brain focussed elsewhere while I wait for those meds to knock me out. Doesn’t always work though…which is why I’ve sometimes been up til 4am just trying to keep myself from raging against my body by blasting aliens or Cthullu beasts or stormtroopers until I’m finally too wiped to notice the burning. sometimes that works.
I’ve tried stretching, exercising, showers with hot water, cold water (not that I can feel the difference, but the legs still respond to the temperatures differently), and nothing has ever given consistent relief. Now look…someone is going to ask or comment…have I tried certain “alternative” medicines. Weed. Marijuana. 4:20. Well let me answer that vaguely in a public forum with a reality where it isn’t legal yet and our medical system sees it use with a lot of mistrust. It’s on my radar. It’s been discussed and I have ZERO against its use for medical, or even recreational use if it’s enjoyed responsibly (I liken it to alcohol). I’m curious what impact it would have on nights like tonight…keeping in mind that I still have work tomorrow (including a cool new project) and I have to be functional dammit.
And that’s the trick. I refuse to let this “phantom” pain beat me. (note there isn’t anything phantom about it and it isn’t “just” in my head. Don’t let anyone ever hand you that bullshit about pain). That’s easier for me to type and to say then it is to achieve mind you and I recognize that my just saying “don’t let it beat you” is easier than it sounds for anyone suffering from chronic pain. There isn’t a right or a wrong way to deal with this. There are some nights I just want to curl up into a spasming ball on my bed and try not whimper at the burning…hell I’m sure I’ve had those nights and Shannon could attest to them, but never will. She knows what these nights are like. So I find a way through it. Tonight…I share it with you. If you made it this far, I thank you for sharing the time with me. Time to put on some headphones and blast some rock and chair dance to give the pain a middle finger tonight. Or maybe I’ll go take that whimper.
Just wish there had been a damn handbook! Where’s the water to put out these hot coals??