It is an uninvited guest. I don’t know how it found me – something tells me it was the pneumonia that opened the door. And I don’t know how it works. It just seems to worm its way deeper into me all the time. I have a hard time, even now after living with it since 2003 – or more likely as early as 1983 – understanding how to live with it. It has taken over, or at the very least insinuated itself, into every aspect of my life. It seems sometimes as if it sat waiting, watching, finding the things I like to do best, the things that provided, if not meaning, at least enjoyment to my life, and then moved in and made those things if not impossible at least extremely difficult.
It’s not vindictive, or power-hungry, it’s not conscious at all of what it’s doing to me, and by extension to my family. It just showed up, and began insinuating itself into my life. It’s gotten to the point now where it is almost more important to me than my wife, or my kids, or my job, or my parents – it certainly has more control over me than any of them do. If it doesn’t want to go out to a party, or stay up late, or go to bed early, we don’t, regardless of what anyone else around me wants. To a great extent, I am at its mercy. We have some understanding – I try to give it the rest and relaxation it seems to prize most highly, and it sometimes agrees to do what I want. And it’s not so bad yet that I can’t overrule it, and say, well, you might not want to go to Connecticut to celebrate Thanksgiving with my family, but I really do, so we’re going. And leave me alone while I’m there – we’ll settle up the account when I get back. It’ll mean a week of weirdness – fatigue and insomnia, muscle twitches and cramps, but it’s a symbiotic arrangement. We each get what we want, just not at the same time.
I take three meds for blood pressure (yes, it took three to get the dang thing down!). I take others to quell the leg cramps, what we affectionately call “jimmy leg,” so I can sleep. I take calcium, also for the jimmy leg, and fish oil for inflamation. I’ve been through the gamut of “disease modification” drugs, which strangely were all originally cancer drugs. I’m told, “We don’t really know why this works, but it seems to.” Yeah, seems to. I take far more ibuprofen than is probably good for me. It’ll probably be liver failure that kills me.
So there’s all of that. Each time I get a new prescription, I read the dire warnings that come attached to the bag, and try to keep the various warning signs of a bad reaction out of mind, but there’s just too much of it. Weirdly contradictory – insomnia and fatigue? Anxiety, depression, increased thoughts of suicide, and an overwhelmning sense of calm? I’m sure it’s mostly just there for legal reasons – most of this stuff never happens, but it might. (Right?)
And now Cellcept, which is the heaviest-duty drug I’m putting into myself these days, with the direst warnings. For example, they suggest contacting your doctor if you, “vomit blood that looks like coffee grounds.” As my daughter said, I’d call the doctor if I vomited blood that looked like blood!
I’ve gotten to the point where when I feel, for example, fatigue or insomnia or like a giant wasp is stinging the same spot on my foot over and over all night long, or I wake up with a pain in my elbow that brings tears to my eyes, I wonder is it MS, or one of these meds? Or MS and one of the meds? Or two of the meds? Two of the meds, and MS? Or being fat and 54? Fat, 54, and MS? It seems there are endless combinations of possibilities that have me feeling depressed, tired, and just, basically, toast. Or as my buddy John says, “Done. Just…done.” What I would love to do is to stop taking everything, stop putting all those pills into my mouth, all those chemicals into my body, seemingly layer upon layer of them, reacting who knows how with each other and doing who knows what to my insides. I want to stop going to talk to doctors and “specialists,” who all have something else to tell me. I just want to stop it all, lie down and just be quiet for about a week, and see what happens.
I can’t help it, and I know it is selfish of me, but I can’t help feeling a little pissed off when I see someone who has survived a major injury or illness and is well on the mend, and we sit around and talk about how well she’s doing, and the time-table for her complete recovery. While that is wonderful and something I am truly thankful for (I really am, I even said it at Thanksgiving dinner!), and they and their families should be overjoyed as well, I can’t help the little voice in the back of my head that says, yeah, well, good for you, I’m not going to get any better. I honestly don’t hold it against them. But for me, this, right now, today – this is probably as good as it is ever going to be. There is no “better.” It is going to be a long, slow (if I’m lucky) downhill slide from here. I was a little stunned when my neurologist told me essentially she was out of options.
And it pains me to no end that so many people seem to be getting dragged down with me – my wife has to constantly compensate for the more and more things I can’t do, my father has to watch, feeling powerless (not a situation he is used to), my son has to give up many of the things we used to do together. My daughter, who has endured, and continues to face, medical things that no child should ever have to face, is perhaps best suited out of all of them to understand but still has to deal with my losses. It is one thing for me to have to give things up – this is me, and I am stuck with it. But they could, in effect, walk away, and live lives free from this houseguest. I think this situation is harder for them for that reason.
And when I am tired, and starting to wallow in self-pity, which is never a healthy thing, I ride the stairlift, I climb into bed, and try to go to sleep, hoping I can do it with without resorting to more chemical medication to get there. When I am asleep, it is the only time I can be free from multiple sclerosis.