copyright 2001, D. Glenn Arthur Jr.
Last updated 2001-11-07.
On a couple of my other pages I've mentioned that I have fibromyalgia and that I've been on disability because of it. This is where I explain what that is and, more importantly, what its impact has been on my life.
This has been a very difficult page to write. I've started it several times (at least as far back as 1998 -- I'm finally posting it three and a half years later) and left it unfinished each time because I haven't liked the way it keeps sounding. I don't think I'm a bitter person and I don't want to sound bitter, but it's hard to communicate what fibromyalgia is really like and what effects it has had on my life without sounding a little bitter. It's hard to concentrate on it enough to write this without feeling bitter. Most of the time I try not to think too much about what this illness has cost me, and when I try to write it down I have to think about it. I also don't want to sound like I'm looking for pity, but an honest description winds up being ... well, pitiful. And I don't like that. Perhaps it's time for me to put aside false optimism and foolish pride and tell it like it is. Then I can upload this page and go back to trying not to think about it too much and keep the positive things in my life in front of me -- and all the Great Things I plan to accomplish despite this problem -- as much as possible.
Fibromyalgia is a syndrome of chronic muscle pain with no obvious cause. If you can find the cause of the pain, then whatever that is, it's your diagnosis instead of fibromyalgia. We do not know what causes it. There are no lab tests for it. The syndrome is defined by the pain -- pain in at least 11 out of 18 definng "tender points", all four quadrants of the body, pain persisting more than 18 months, etc. But there are a number of associated symptoms which, while not part of the clincal definition, seem to be part of the illness: non-restful sleep, problems with short-term memory, a muddle-headedness often referred to as "fibro fog", acid reflux (causing frequent heartburn), and so on.
It is not clear whether fibromyalgia is one disease or several, or a slightly different manifestation of another disease. These are questions the researchers are still trying to answer.
There is no known cure. There are, however, treatments which help some patients. The figure I keep hearing is that, after trying enough things to find out which work for whom, about 80% of fibromyalgia patients wind up feeling about 80% better. Unfortunately I've been in the unfortunate 20% so far. But my doctors say they haven't run out of things to try yet, so there's hope. Unfortunately I'm in an HMO, so things aren't happening very quickly.
It hurts. Constantly. Not always at the same intensity or in the same places, but there's constant pain. On a good day, it's mildly annoying but something you can ignore. On a bad day, your only thoughts are, "This $*&%ing hurts," and, "There's got to be some way to stop this pain." There's not a whole lot of mental energy left over for thinking of anything else.
Most of my days are somewhere in between. That's something that varies from patient to patient. It's annoying to some, crippling to others, but we all have bad "flares" at least occasionally.
Remember how your whole body ached the last time you had the flu? Imagine if that had gone on for years. Remember how you felt after pulling two all-nighters in a row and had to take an exam the next day -- and the coffee machine was broken? Imagine feeling like that most days. Remember the last time you pulled a muscle by not warming up enough before doing something strenuous? Imagine waking up each day with a different body part feeling like that for no apparent reason. Now add not being able to count on your body to work well enough to do whatever you'd planned for any given day -- knowing that whatever plans you make are tentative because you may well not be up to doing them when the day rolls around. Add not being able to sleep because there's no such thing as a comfortable position to sleep in some nights. Did I mention the bit about it going on for years?
I'm not shitting you. It's that bad.
It's that frustrating, too.
And it's not for a day, or a weekend, or a week, or a month. I've been dealing with it since 1993. If you check out the fibromyalgia support newsgroup and mailing list, you'll find people who've been coping with it for a whole lot longer.
The thing is, I look perfectly normal. On a bad-but-not-too-bad day I might limp a little, or you might notice that I wince when moving certain ways. On a really bad day I'm stumbling and falling against walls and spending as much time lying down and you won't see me at all because I won't get out of the house. I'm not on crutches or in a wheelchair. Having gotten the message growing up (intended or not) that showing pain is "melodrama" and "trying to get attention"; being an actor; and maybe falling prey to the sin of pride, I act as normal as I can when I'm out. I try to walk as though I'm not in pain. I try not to wince when I pick something up. I want to be normal (graceful, if I can manage it) and I've been taught not to "make a play for sympathy", and my automatic behaviour as a result is to act as normal as I can. So on a good day, I look fine, on a medium day, people who know me well can tell I'm hurting but I'll look fine to strangers, on a bad day you can tell I'm uncomfortable but won't see any visible reason for it, and on a really bad day nobody sees me at all. (I'll have to ask a friend to describe how I appear when I've been out and about too long and have managed to turn a medium day into a really bad day as a result.) In the meantime, on the medium days I'm getting tired quickly, in constant pain, and trying to be careful not to push myself so hard that I wind up taking the next three days to recover.
So it's easy for others to overlook the fact that I have a serious problem, and to fail to understand why I have some of the limitations I have. If there's anything that I would describe myself as feeling bitter about, it's the people who treat me as though I'm merely lazy or opportunistic or weak, not realizing just how hard I work simply to keep up to where I am. "Well, you're going to have to go get a job now," someone says, or "... a better job ...". Right, find me all the jobs I can do with my limitations. I'm looking, and there just aren't very many there. "You just have to work harder," or "You'll have to get a full-time job." How am I going to do that when I'm barely able to keep up with what I do now? But they can't see how difficult it is; this disability is invisible.
Fibro-fog, short-term memory problems, disorientation; these have cost me much. Before I went on disability, I was a computer programmer/analyst. A pretty good one. Programming requires keeping a lot of information in your head while you're coding. I'm a lot slower now, and it's incredibly frustrating.
Have you ever gone to the other end of the house for something and forgotten what it was by the time you got there? Most of us have. That happens to me several times a day. It's worse when I get to the bottom of a subroutine in the editor and can't remember what I wanted to modify there. Or to a "come back to this" note in a web page and can't remember what I wanted to write there.
It's not always that bad -- on a good day I'm pretty sharp, keep the complete design of a system in my head as I write the code for it, annoy friends with quick puns, all the stuff I'd gotten used to counting on. The problem is that I never know whether tomorrow will be a good day, or an annoying struggle to focus enough to remember who I needed to send email to. And the good days are too darned few.
I am in constant pain. In the past eight years, I have had one pain-free afternoon. It wasn't even a whole day.
I left my job and went on disability. My long-term-disability benefit was two thirds the salary I had been earning at my last full-time job. That's a pretty serious hit in the wallet. A few years later, the insurance company suddenly decided I was "no longer disabled" -- this despite my not even being able to finish the physical tests they gave me! -- and cut me off. For the next few years I borrowed money from my parents to pay the rent while trying to put together the documentation to fight this decision.
In a really good week, I can do forty hours of work (assuming I don't do anything else, such as housework), but I'll hurt myself so badly doing so that I'm guaranteed a really bad week afterwards. More reasonably, I can do thirty hours in a really good week without too much trouble. But in an ordinary week, it'll be more like ten or fifteen, and in a bad week I'll be lucky to have more than five hours of productivity in half-hour increments. So I cannot work a normal full-time job, and even a part-time job has to be structured in such a way that my hours, and the amount of time I work in a week, can vary depending on how I'm doing physically.
After years of searching for work I could do and being told over and over again, "Hey, we love your resume and you look like a great fit for this job we have, but we need somebody full-time," I finally found two employers who had a use for a senior-level techie part-time (both telecommuting, which is good because that at least doubles the amount of time I can work -- the numbers in the preceeding paragraph are for telecommuting). One has since laid me off because of a lack of clients, and the other doesn't pay especially well and sometimes has dry spells (when there's work to be done, but none that can wait until I feel well enough to do it). So I've been trying to get by on far less money than I made in 1993 (and I wasn't rich then!), and worrying greatly about finances. Guess what's really bad for fibromyalgia patients: stress.
I'm looking for more work, BTW, so if you see any jobs for telecommuting, part-time programmers with unreliable bodies, let me know. There don't seem to be very many out there.
Obviously, lack of money has caused other effects on my life as a result.
Then there's my social life. The group outings I skip because I don't feel well enough to leave the house. And the things I skip because I may feel well enough but I didn't feel well enough to work earlier so now I'm going to catch up on work. I don't have much of a social life. I mostly see the people I play music with.
It's had negative effects on my sex life as well. I probably needn't go into detail, as it's not hard to figure out how fatigue and chronic pain can interfere there.
Basically, my standard of living has gone way down. Instead of being a professional who was doing okay-but-not-great and had the usual hopes for how things would continue to improve career-wise, I'm now scraping through by the skin of my teeth at best, living in a run-down city neighbourhood in a drafty house I can't afford to heat, and my hopes that this will pass and my bright shiny future will come back are diminishing. This all because I had the bad luck to get sick.
I'm a musician. That's a physical and mental activity. Some days my body isn't up to it.
I've missed plenty of rehearsals for not being well enough to drive to them. (I've missed even more for lack of transportation when I can't afford to repair my car -- or, as now, can't afford to replace my car.) The old "the show must go on" thing has gotten me through performances that I probably shouldn't have played, and strong drugs have helped there as well. I don't like taking narcotic pain medication before going on stage because it makes my timing a little sloppy and I have to pay really close attention to stay on the beat; but sometimes I have to take the drugs or my right arm is simply not going to go up and down fast enough to strum in time anyhow.
I've had to ask the leader of The Homespun Ceilidh Band to rearrange the set list for a performance to give me time to recover a bit after a particularly energetic tune before going into the next wrist-killer.
I cannot play barre chords as cleanly as I used to, nor can I play them as long as I used to. I'm mostly playing acoustic guitar these days; I'd probably be able to keep up better on an electric guitar. So I use the capo to avoid barre chords more often than I used to, and I live with the barre chords I can't avoid being sloppier than I'd like. I can sometimes compensate by using phrasing that takes attention away from one chord.
This is one of those incredibly frustrating things about fibromyalgia. For years I've worked on my music, on my guitar playing, knowing that every year I was a little bit better due to learning and practice. I was looking forward to many more years of getting better and better and better before old age started to steal away speed and strength. But here I am, having gotten worse in a couple of details, way ahead of schedule for old age. This is something I try not to think about too much because it's too easy to get into self-pity when I do think about it. I was supposed to be Super-Guitarist by now. There are aspects of my guitar playing and general musicianship that do continue to improve, thank goodness, but having to struggle for concentration sometimes, fighting my body or looking for ways to compensate for it, and not getting to as many rehearsals, all have slowed down my musical growth. I'm not as amazing as I feel I should have been by now. (Is that arrogant of me to say it that way? I never expected to become Eric Clapton or Jimi Hendrix, if that helps put it in perspective ... but I did plan to try.)
Similarly, I can't spend all evening on my 12-string any more. If I want to play the 12-string on some sets, I have to make sure I've got the 6-string along as well so I can switch back and forth. And my forearms and wrists sometimes hurt enough to interfere with my playing my tenor recorder (which I chose specifically because it was the only one that didn't hurt my left wrist at the time) or the bass cornamuse I've got on loan. Pain makes me slow. Pain can make me sloppy. Pain means I have to spend more of my concentration figuring out how to compensate or how far I can push my body, and less of my concentration of phrasing and intonation. Pain is a distraction.
Music can help with my pain, which is something I noticed early on. Playing music, especially in an ensemble, does happy-things to one's brain chemistry, and winds up reducing overall pain levels! The problems despite this are twofold: first, there are times when I start off in too much pain to play well in the first place (sometimes too much pain to even hold an instrument); and second, much of the music I play is very physical. Even if the music is reducing my perception of pain in general, I'm pushing my right arm pretty hard on an athletic level to get through a set of Irish Polkas at full volume with flourishes and enthusiasm: those muscles are going to get tired, and they're going to cramp. My back and my legs might feel a little better at first, but the arm is going to hurt. And as the concert goes on, I'm going to get more and more tired, and the pain increases because of that. At the end of a concert my mood may be way up, but I'm exhausted, my limbs might be shaking, and either I'll be in pain then or I'll start feeling it once I stop moving and calm down. Playing less demanding music in a less intense environment might be a net win, pain-wise, but "less intense" isn't want I'm performing these days.
(On the plus side of playing athletic music, it does provide the exercise that I should be doing for my health.)
Finally, I'd like to simply be doing more music, but I have to be careful how many performanes and rehearsals I schedule for fear of pushing myself too hard. Just as I can't work a full-time job, I can't put in as many hours as I'd like on my music.
I'll eventually include links to fibromyalgia resources here.