A lot. All the time.
This is not an exaggeration, though I wish it was. I wish I were being hyperbolic when I say things like "before I finally fell asleep last night I spent quite a while laying in the dark, staring at the ceiling, wishing it would go away. Tossing and turning to find the comfortable position, the one that didn't make it worse." I really wish I didn't have to ever admit that "it was so bad yesterday I was in/near tears, folded up as much as possible trying everything in the world to distract myself." I don't think the doctors believe me when, sitting in front of them for the 10 minute meeting that I drove an hour and a half then waited another half in the waiting room for, that "right now? It's about an 8. It has been getting to 10s though" and "No, there's nothing that triggers it". You know, nothing but the god damn congenital, incurable, bone disease I have. You know, the one that every doctor I've seen for any amount of time has (eventually) explained to be "the worst case they've ever seen."
I think they (and other people, frankly) don't believe me, because after nearly 30 years of this pain. This pain that almost never lets up. This pain that, at the best times in my life, I'm feeling. This pain that has caused me to miss out on much. I think they don't believe me because I have become quite the expert in masking it. You're talking about someone who, in their own house, will whimper and screw up their face the first 3-4 steps after standing up, then force them self to stop as soon as they're through the bedroom door lest family see. Family who know.
Nonetheless, believe how bad I tell them it is or not, they are willing to drug me up. At this moment I'm (supposed to be, had the moron kid-doc not messed up the script so that I now have to go back and get it anew) on 40mg of Kadian, a time release morphine three times a day. This is couples with 100mg of "stripped down codeine", Tramadol, which is supposed to be for "breakthrough pain" (read: the pain that bleeds through the morphine). I take it the full three times a day because there is always pain coming through the morphine. Additionally to that they recently went ahead and added another 15mg of straight Morphine. I don't like taking that, it can mess with my head. But when I do take it I have found that the 15mg does nothing much so I go ahead and take a full pill instead of the half, making it 30mg.
There are other drugs, anti-convulsant to stop the shooting pains, anti-inflammatorys, blah blah. Being on so many drugs means having to deal with the side effects of so many drugs. If I have to drive, I will limit myself to one kind, just in case, because if both of them hit me at once I will end up with heavy eyelids or this weird distraction thing that happens to me to cause me to just kinda zone out. That doesn't happen often because of the types of main drugs I've got. I take them at the same time and the time delay of the one seems to help. The Tramadol alone, though, has some bitches of side effects. For hours after I've taken it it's just impossible to urinate. I'm fairly certain it's the cause of the weird back pains that pop up when I'm not moving. When I've had to rely on it too much it makes me irritable, which is to say causes me to be short with people I love who have no idea why other than I'm a tool. These, however, are the side effects I prefer to have, as the stuff can also cause seizures and withdrawal symptoms while still on it and all kinds of nastiness. I am now however wondering if it's the cause of my problems swallowing I sometimes have.
See, this was originally going to be a post describing the pain, but I found that incredibly hard to do. I mean, I got it, but it was a bad read. The best piece of writing in it was as follows:
Imagine you're sitting, arm around the person you love. You're watching a movie, and everything is good. Except that, still, you're hurting. From your knee to your ankle there's a throbbing. In fact, your knee kinda feels like someone Nancy Kerrigan'd it. As a result, you spend the majority of your time crossing and uncrossing your legs, lifting them this way and that, mostly habitually, hoping on the outside chance you can make it stop. Around the time you notice the muscle in your thigh on one leg is doing that almost throbbing/letting you know it's there thing you're asked "Are you OK?" Without even thinking you respond that you are and then up the pain masking you think you've been doing. This is more-or-less a typical scenario, only the love of my life isn't always there. Though, ya know, soon!
Suffice it to say, it sucks. But such is life. And I'm used to it at this point. The only thing that really sucks about it still is the people not exactly believing. That I can do without.
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