” So, like a forgotten fire, a childhood can always fla
re up again within us”, Gaston Bachelard
A flare-up, a word for an acute attack of fibromyalgia, can be very alarming if it seems to come out of the air without warning. Even after years of living with fibromyalgia I can become overwhelmed with anxiety about an episode that I can’t account for. Sometimes the flare-up is in a localized area of my body, for example, this year it is in my hip, while last year it was in my foot. Other times it is everywhere; my nervous system is on fire and pain and fatigue runs rampant throughout. When it happens I go through all the scenerios of the past few days and wonder what precipitated this new, intense attack. Elaine Scarry writes that “Physical pain has no voice, but when at last finds a voice, it begins to tell a story…” (p.3). This is my story:
I look back at my childhood and try to remember what it was that laid the foundation for my sensitive body’s struggle with this affliction. I remember the horrors of childhood in the Catholic school where the nuns terrified me and I would hyperventilate at night, thinking I would die and go to hell. I think about how difficult it was growing up in a big city with the polio scare surrounding us. I remind myself that even though I was an anxious child with a stern, angry father and a passive mother, I no longer have that kind of trauma in my present home life. I try hard to keep my life manageable, although not too restrictive. Then, I remember the more important and positive thing about flare-ups: they don’t last forever! They eventually subside and fade into the chronic, less debilitating fibromyalgia I have lived with for decades, until the next one.
The most frightening thing about a severe attack is wondering if this is an unusual episode that is unrelated to fibromyalgia. Pain that brings about loud gasps, moans and outward signs of distress can be frightening to others, but even more so to myself. Is this fibromyalgia or something else I should be attending to, I wonder? If I suspect it is the same demon, I ask myself: what happened in the last few days to bring this on? It becomes easy to blame myself for excitement, over eating, or pushing myself too hard. But, if it is beyond my control, as in a weather change, then I relax somewhat and wait for better weather conditions.
Living with fibromyalgia is a constant up and down handling of life events. Some days are not so painful or filled with fatigue while other days require almost a withdrawal from life for awhile. It requires courage to pick myself up and start over again, knowing I am often spitting against the wind. The old childhood tragedies help form this personality of mine and I can’t go back and do it over again. Flare-ups come and go. Life goes on and spit happens. As my sister says: “Grow where you’re planted”. All things considered, there are joys to be savoured, especially when the flare-up ends for awhile.
Dear Robin: Thank you so very much for that lengthy comment which I know will be helpful to others. Feeling alone, deserted by friends, a spouse who cannot understand, unable to attend social functions…all of these plague so many of us. I did deal with some of the issues regarding long term disability in my book. It sounds like you have yours attended to quickly which is a good thing! Please keep in touch and once again thank you for being so candid.
Regards,
Barbara