I was just reading the blog of a WordPress blogger who suffers from the same kind of pain I do, known as Central Pain Syndrome or CPS. In their blog, they were talking about medications but I got the sense it was also kinda about how people who think CPS is a figment of our imaginations just don’t get it. I’ve heard others who suffer with this say that they’ve been told that it’s all in their heads and they’re just imagining the pain and while no medical practitioner has told me that – and they’d be wise not to – I happen to know that it is in my head thanks to the stroke I had.
I don’t think they understand that it doesn’t take being in this kind of debilitating pain very long to make you want to do anything to make it stop, up to and, sadly, including killing yourself. I belong to a Yahoo group for people with all kinds of CPS issues and when we get to talking about the types and amounts of medications taken, whew, it’s mind-boggling to see what a lot of people are taking and some of the treatments they’re subjecting themselves to in order to make it stop hurting. We’ll even flirt with serious drug dependency since a lot of us are taking enough opioid class drugs – like Oxycotin and Fentanyl – several times a day to get our neighborhoods high and some, where allowable, are smoking enough weed to bring back fond memories of the 1960’s Flower Power movement.
I had mentioned during a recent post to the group that I find it necessary to really manage my medications to get some relief without running the risk of addiction and, of course, incurring expenses for the drugs. For instance, I know that Fentanyl will do a number on me so well that I wouldn’t know who I was, let alone that I’m in such pain – and that’s both good and funny. One downside is that Fentanyl is highly addictive and makes heroin look like baby aspirin; the other is that even generic Fentanyl costs an arm and a leg even if you have insurance to cover it because it’s not one of their preferred drugs. Last time I checked, the .75mcg Fentanyl transdermal patch was costing over $300 for a 30-day supply and the pills were just over $235 for 30 days.
Another downside is that while it will make me forget that I’m in pain – I’m too busy being stoned to notice – it makes me almost totally dysfunctional; one moment I’m kinda coherent and the next, I’m so stoned I gotta lie down… and I’ve done it in some of the oddest places, too. I had to get off of the patch because I simply couldn’t afford it and the withdrawal symptoms are a bitch. I opted to use lesser strength drugs, trading relief for functionality and if you’re thinking that was a bad move, you’re right – it was because the stuff I’m taking now barely takes the edge off and is one of the reasons I can’t sleep for days at a time – and that’s if I take all of them every day as prescribed and, no, when I do that, the drugs laugh at the sleeping pill I take and kicks it to the curb; it’s like I never took it. So, in order not to give myself some problems due to sleep depredation, I take the serious drugs only when I can’t cope with the pain anymore.
Again, if you think that’s a bad idea, it is; once I take the “good stuff,” forget about sleep then my appetite takes a hit and, oh, yeah, if I happen to forget to take the next dose, I wind up going through withdrawal – but the worst of it is feeling sick to my stomach. They do get me quite high and almost to the point where I can’t do shit; but not so much that I can’t function as expected. I have some of the weirdest dreams I’ve ever dreamt when I’m going full-bore with the drugs and while it’s often funny as hell, it’s also very disturbing.
And compared to some folks suffering with CPS, I’m taking baby doses of medication – chew on that one for a moment. For me, it’s a terrible trade-off; I’m damned if I do, damned if I don’t. I thought having the stroke was the worst thing that’s ever happened to me but the physical problems it gave me, well, I can deal with them.
It’s the pain that’s become the worst thing I’ve ever experienced. I explain it like this: Imagine spraining your ankle – you know what that feels like. Then imagine that pain all on one side of your body from head to toe. Then imagine what it’s like to have that pain every day for five years and counting. Then factor in that everything in your environment triggers the pain, like the air around you and even the clothes you wear and being naked all the time, while nice and kinky, is even worse and perspiring feels like being bathed in acid and that even plain water on your skin is enough to make you have to gird your loins and really man up just to take a shower – you do not want to know what’s like.
You know how you say at times that you wouldn’t wish something on your worst enemy… but you really would? I really wouldn’t do that with this because, as I also tell people who ask, it’s a miracle that I’m still sane. Just the mental effort alone is staggering and while I’ve gotten better at shunting the pain off to one side, it just never, ever, goes away. Oh, yeah, try having a sexual relationship with someone when you can’t stand to be touched on one side of your body. I will say that not only do I fight through this because, hey, I still like and wanna get laid, but when I orgasm? Wooo-whee! Can’t even begin to tell you what that feels like – I don’t have the words to describe it and if I did, eh, you’d probably not want to know about that, not because it’s TMI (like I care about that) but the best way I can describe it is to say it’s beyond good… and beyond scary.
Unlike other sufferers of CPS who’ve had spinal injuries that can’t be repaired, my pain is in my head – yep, your boy is officially brain-damaged and, nope, it can’t be repaired or, if it could be, I’m not willing to have them fucking around in my head like that because the damage is way too close to my brain stem. Like most stroke victims, there’s always that chance that I might stroke again and while I can kinda accept that (and try not to do anything to make that happen again), my biggest fear is that if it happens again, I’ll survive it and be kinda/sorta okay… but the pain will get worse.
I can deal with the gaps in my memory; I can cope with the muscle weakness and lack of the fine motor skills that allowed me to play “The Moonlight Sonata” beautifully… but I know I couldn’t deal with more pain because I’m barely dealing with the pain I have now. I could choose to go broke and stay doped up but I wouldn’t be able to do anything, forcing my wife to really take care of me. Nah, I can’t abide by that – my ego won’t let me and this is probably one time being a stubborn, hard-headed guy actually has a good purpose. I fight the pain and it’s been a five-year battle so far. It’s not quite a stalemate; there are moments when the pain roars in triumph when I have to reach for the hard drugs that scare the shit out of me because of what they’ll do to me. But while I’ve not gotten any better, I haven’t gotten any worse so I see that as a win for me and I am more than determined not to let the pain win because if I lose, it will lead me down a path I will not survive – and I ain’t hearing any of that!
They say it’s mind over matter and that if you don’t mind, it doesn’t matter – but this does: I do mind big time. As strange as it seems – or maybe it’s just me – this has been, at times, funny as all get out, like not being able to tell whether I’m not or cold or, as I like to say, the left hand really has no idea what the right hand’s doing. It’s like they can’t agree on whether or not it’s hot or cold and, sometimes, I can’t tell because I really think my body gets so confused it just says, “Oh, fuck it…” Don’t get me wrong; this is some serious and potentially dangerous shit… but I thank God for giving me such a warped sense of humor that’ll make me laugh at this. Plus, I laugh at it because I already know crying just makes it hurt even more.
I’ll leave you with this final thought. From time to time, I’d read or hear on the news where someone with a lot of pain – usually terminal cancer patients – would choose to end their lives. I didn’t understand it and that’s because I had no idea what they were going through so the decision to commit suicide didn’t make sense to me. I understand it now and, yes, there are times when I think that dying wouldn’t be all that bad because it would be the final solution to making this awful pain go away. But, uh, that would make me go away, too – not even trying to hear it or go there because, pain or no pain, I love me and even with this pain, I’m too much of a coward to off myself… but the thought has been put into my head by the pain and my mission in life is to keep it locked away. One day, I will die… but not because the pain made me do it.
On to other things!