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When I first stopped work in 1996, I felt sure that what I needed was a good rest, and that within six months to a year I would bounce back. Well it didn't happen quite like that, and in fact for a while I just seemed to be getting worse and worse. But eventually things did start to improve ...
Dark days || Improving || Learning to live with it || Continuing to live with it
Back to my story Part 1 || Part 2
When I first stopped work, I felt sure that all I needed was a good rest. I thought I would bounce back in six months to a year. I didn't, though. Over the next few years, I actually got worse, and I was afraid this would continue. I thought also, even if my symptoms do plateau, I'm not getting any younger. What will life be like when the infirmities of old age add to my existing aches and pains and weakness?
I was sleeping badly, as usual, and when I woke early each morning, I was stiff and sore all over. I felt much as if I had been out drinking the night before, got into a fight, and then spent all night lying on the pavement. (I’m told that in the USA this is known as the ‘18 wheeler sign’, as in: ‘What was the number of the Mack truck that hit me?’) My first thought each morning was: how will I ever be able to get out of bed? My cats would be waiting as I slowly and painfully rolled over, pulled myself upright and eventually hobbled to the kitchen to feed them and make coffee. Some mornings I had to use my walking stick. A couple of times I actually crawled. It would take a good half hour to really get moving.
At my worst, I was spending a lot of time in bed resting. I wore comfortable clothes (track suits, or shorts and T-shirt, depending on the season) that would do both for bed and around the house, so that I didn't have to decide if I was ‘up’ or not. I only got dressed ‘properly’ if I had to go out. And when I did go out—whether for shopping or for fun—I had to be careful about how long I spent away from home. Two to three hours was my absolute maximum. When I was out, I also had to be careful about my energy use. If I was heading for a particular shop, for example, that was where I had to go! as a detour might well mean overdoing it and not getting to my original destination. The challenge was to get where I was going, and do what I wanted to do, before pain and fatigue overtook me.
I would have good days and bad days. Some days I felt so ill, all my instincts told me there was something seriously wrong. It was hard to believe this was ‘just’ Fibromyalgia. I would take my temperature, convinced I was running a fever (I wasn't). All sorts of different symptoms would come and go—buzzing feelings, numb feelings, different pains, anxiety, and depression. I couldn't read books any more. And I was so lonely.
I lived through several cold dark Canberra winters in great despair. I had no hope for the future. I thought my life would never get any better. But I was wrong.
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When I stopped work in 1996, I was in a very bad way. Six years later, I began working again, part-time. This has been (as of December 2007) successful, although it is often difficult and exhausting. What I get in return, in terms of self-esteem and income, is definitely worth it—although I often worry about my ability to meet my obligations. Like so many of us, I can’t take my physical or mental stamina for granted any more.
At first I was afraid the improvement I was experiencing was just part of the cycle of getting 'better, and then worse'. I was afraid in some superstitious way that if I talked about it too openly, I would jinx it. But having shared my story if chronic illness with so many people who are suffering the same problems, I feel I have a moral obligation to let them know that there is hope. Remission or partial recovery is at least possible. This has to be good news.
The improvement was so gradual that I cannot pinpoint when it began. Nor can I identify any one reason for it. I can tell you that there has been no graded exercise program, no cognitive therapy, no miracle supplement. Perhaps a lot of things have added up: a less stressful lifestyle (stopping full-time work), lots of rest to allow my body to slowly recover from the excesses of ‘pushing on’, plus the long term effects of good pain relief and other medications for my various symptoms. I've learned a lot about my limitations, how to accept them and work within them, and how to look after myself. I've also been fortunate to find a more congenial and financially secure domestic situation (looking after my aged father instead of living alone).
There is no doubt that I still have Fibromyalgia. I've had it since childhood or at least my teens, so it's obviously not going to go away. But my symptoms are easier to live with. I don't wake in agony every morning wondering how I am going to get out of bed. My mood is more hopeful, and I'm less anxious. The window of time for activity is longer, and I can do more before I need to rest. Less often do I experience that awful malaise, which at times made me feel so ill I thought I was dying. I am not so stiff as before, and I don't ache so much. I am in less pain, with fewer flare-ups. There are still ups and downs. But those awful episodes of feeling dreadfully ill, or so utterly devoid of any spark of energy so that I can barely put one foot in front of another, happen less often. I've lost weight. My memory has improved and my brain fog has lifted considerably. The most exciting change was when I found I could read books again. For some years, I had lacked the concentration and memory to be able to do this—a real blow for an avid reader.
However … although my health has improved somewhat, I'm careful not to use the term ‘getting better’, which implies a return to normal functioning. Every now and then, I find myself feeling more or less ‘normal’ and I get a bit carried away, doing things or going places like a normal person. It doesn't take long before my body lets me know it was all too much. Perhaps now I am experiencing the un-aggravated symptoms of what ails me (and apparently has always ailed me) ... but they are a lot easier to cope with. I think the state I am in now is probably close to what I could have been like if I had listened to my body right from the start.
I'm grateful to be able to work part-time—though it requires a constant balancing of effort to make this possible. I don't see myself ever returning to full-time employment, and neither does my current GP, who has a great deal of experience of treating people with similar health problems. In fact, I've come to the conclusion that I wasn't really fit for full-time work when I was doing it. I kept going by ignoring my symptoms and fatigue , and by having the attitude that, however lousy I felt, I could pull myself together and make the effort to do whatever it was I had to do .... survival tactics. You can certainly keep going like that, but not for long. I liken it to going shopping with your credit card. In the short term, yes, you can afford to buy the things you want. But you’ll be paying back the money—with interest—for a long time. As I see it, it has taken me years to pay back some of that health debt, and some of the damage may well be permanent.
Fatigue is still a dreadful problem; I sleep very badly (two to five hours at a stretch, maximum) and often have a real battle with daytime sleepiness. Sleep disturbance is a recognised feature of Fibromyalgia. We sleep at the wrong time, and not enough, and we don't get nearly enough 'Stage 4' restorative deep sleep. Currently fatigue, sinus/rhinitis and various other Fibromyalgia symptoms such as restless legs and the ‘itches and twitches’ (paresthesia) that contribute to sleepless nights, are my main problem. I work three short days per week, and need to nap when I get home each day. Despite this, I have managed for the last few years to work approximately one third of full-time hours. I am grateful that my employer, the Public Service, accommodates my needs.
I don’t have much of a social life apart from work, but I'm so grateful to be able to do what I do. I never expected my health was going to improve in any way. I thought my symptoms would continue to deteriorate, and I had resigned myself to that. Whatever happens now, I know that, in the long term, decline is not inevitable when you have Fibromyalgia.
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There is no doubt in my mind that accepting the reality of one's illness is a key to managing it. And that's really hard to do, when all the messages we get in today's society are about ‘positive thinking’, and working hard to achieving success. It’s not easy to accept what we see as weakness and inability.
Since I got sick, I have done my best to change my perfectionist attitude and enjoy a peaceful laid-back existence. But still, quite often, huge waves of guilt and horror wash over me when I consider my current life—the way I’ve had to scale back my ambitions, the apparent waste of my skills and experience.
In the West, we seem to be programmed to have an achievement mentality, but it is not the same in other cultures. A few years ago, I attended a Dharma talk by Traleg Rinpoche, a Tibetan Buddhist teacher from Melbourne. He was talking about different kinds of laziness. The first kind—sitting around doing nothing—we all know about. But, he explained, there's another form that most Westerners don't recognise:
There's also the laziness of doing too many things - we have our fingers in so many pies, we've got so many projects going all at once. We have to keep busy, because when we're busy we think we're doing something constructive, and we feel alive. We don't want to be seen as not doing anything - even over the weekends. People say, 'What are you doing this weekend?' You don't want to say ,'Not much', you want to come up with something: 'I'm going sailing' or 'I'm going to go down to the beach' or whatever, even if you have to lie. We are always looking for distractions, so that we don't have to focus on our own experiences and ourselves - where we're at, what we are doing. We do not have to explore those things because we can keep ourselves busy.
I took this to heart, or tried to. I would never have had the courage to choose of my own free will to leave my job and live entirely on welfare, as I did for some years. Yet, I have become able, at times, to see my situation as a blessing. Instead of being caught up in the nine-to-five and the pressures of ‘getting on’, I have had the time and leisure to contemplate the important things in life. Through my illness, I have also been given the opportunity to help a few people in quite a direct way. I can actually (sometimes) be grateful that fate stepped in and changed the course of my life.
Here is a quote from another Tibetan Buddhist master, Chogyam Trumpa, that seems to have great relevance to my life and illness:
We work at our regular jobs and rent a cozy room or apartment for ourselves; we would like to continue in this way, but suddenly something happens ... either we become extremely depressed or something outrageous happens. We begin to wonder why Heaven has been so unkind. "Why should God punish me? I have been a good person, I have never hurt a soul." But there is more to life than just that .... If we were never to experience this kind of shock, we would not be able to grow. We have to be jarred out of our regular, repetitive and comfortable lifestyle. (Shambhala: the Sacred Path of the Warrior. Boston MA: Shambhala Publications, 1984.)
I am not denying the pain and misery of illness. I'm not saying it's a good thing to get sick, or that we shouldn't do everything we can to alleviate our symptoms. But this is how I am learning to see what has happened to me in a more positive light. And that makes living with it a lot easier.
Moira A Smith
Canberra, Australia
May 2007
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last revised 12 Dec 2007