It’s almost two in the morning. I’m exhausted, and yet my brain won’t turn off nor will my body relax enough to go to sleep. I’m in relentless, arthritic pain in all the major joints of my body. My hands and muscles ache, and my skin feels like the lightest touch of fabric would make me weep from the scraping. I’m freezing, but my body is feverish. Every several minutes, my back twinges with such severity I have to reposition in order to stop the spasms. I know that if I stay mostly still, I’ll be able to deal with the pain. If I have to move, I move as slowly and deliberately as possible. If I move too quickly, I’ll fall over because of dizziness and visual disorientation. I might even temporarily pass out. When I go to sleep, I’m likely to have nightmares. I will wake up at least once in the night because I’m having a hot flash, though in all likelihood I will wake up three or more times. When I wake up in the morning, I’ll feel as though I didn’t sleep at all. I’ll lie in bed for many minutes, slowly stretching my joints, preparing to get out of bed. When I finally stand, my entire body will be stiff, and anyone who’s close will hear my bones cracking. I’ll pick out my clothes depending on how sensitive my skin is to fabric that day. Then I’ll put on a smile and leave my room, ready to greet my friends and family as though I am perfectly healthy. If I’m having a good day, the pain will be a mere nuisance. If I’m having an okay day – which is most of the time – I’ll have some pretty serious pain going on, but not enough to inhibit me too seriously. If I’m having a bad day, it will take all of my willpower to keep from going back to bed.
If it’s cold, the joint pain will increase until I can’t hold a pen, type, or do anything which requires flexibility in my hands. Bending at the knees or waist is akin to pulling teeth, and I’ll avoid it as much as possible. I’ll sit in the highest seat off the ground that I can find so that I can get up and down with more ease. I may put a soft towel in the dryer so that I can wrap it around my hands for temporary relief. I’ll want to sit and keep warm as much as possible, because when my joints are warm I am in the least pain.
If it’s hot, I’ll wish I could wear a satin nightgown or nothing at all. My skin will be on edge, as though something is crawling under every pore of my body. It is the most excruciating feeling I suffer as a result of my condition – not because it is most painful but because there is nothing I can do to relieve it. Even my teeth will hurt, and I’ll be so nauseous I’m afraid to move. It is on these days I am most likely to get a migraine – a force of pain that is increased by noise, light, movement, and smell. All I want to do is crawl under a sheet in a dark room, keeping cool and protected from abrasions.
Warm, cloudy days are when I’m most comfortable. The sun doesn’t hurt my head, the heat doesn’t bother my skin, and the cold doesn’t make my joints ache. During these days, I often only have to deal with the muscle tenderness of every day.
As I live my life, simple things become exhausting. Showering, doing chores, cleaning my room. Being stationary, in any position, for any length of time, is real work. I’m restless as a result.
Sometimes I may want to read or write. On a good day, this won’t be a problem, but I often find that it’s hard for me to concentrate for any length of time. Even when I enjoy reading a good book or working on another project, I have to take frequent breaks in order to refocus. This means that even the simplest tasks take me much longer than they would most people. Driving is incredibly stressful, because I am trying extra hard to be alert and cautious. If someone asks me a question, I may take several seconds to respond. Your question has to penetrate the almost constant fog in my brain, register, and then I have to make sense of it before I can consider my answer and respond. I may even realize I still didn’t hear you and need to ask you to repeat yourself once, twice, or even three times. This is probably much more frustrating to me than to you, because it means I’m almost constantly catching up, and I’m embarrassed by this handicap. It is next to impossible for me to concentrate on more than one person talking at a time. I find it is much easier to stay quiet in large groups than attempt to participate. This condition is called “fibro fog,” and it effects more than conversations and concentration. I daydream more than most, and even while concentrating on conversations, my mind will drift, and I’m far too easily distracted. It takes exhausting effort to focus.
The chronic pain is, well, a pain. It is more inhibiting than I like to admit, and I do my best to hide my discomfort. If I’m showing any pain at all, it’s severe enough that I am struggling to deal with it. I hate it when I have to let people shoulder things I feel I should be able to do. I want to be angry when people carry something for me or take over a task I’m doing, but I’m thankful I don’t have to worry about messing up by trying to do it alone. I want to cry when I realize I can’t twist the handle of a can opener, open a bag of chips, or take the lid off a peanut butter jar, because the muscles it takes to do these things are so tight that the simple movement makes my muscles seize up, and I drop whatever is in my hands. When I sit at the piano or organ, trying to play for church or for pleasure, I wish that I didn’t fudge so much because of the inflexibility of my fingers. It hurts to know that the pain is so inhibiting, and I hate it for the burden it puts on others.
I live with a constant prayer on my lips – that I won’t ever feel like I need to give up. No matter how severe the pain, I try to focus on my blessings. I try to think about the people who give me their full support and try to help me as best they can.
Fibromyalgia is a terrible thing, but I’m not Sarah, the girl with Fibromyalgia. I’m just Sarah, and I am not defined by the pain I suffer. I welcome your comfort, your love, your compassion. I need it, even. I will do my best to live as full a life as I can. I’m just Sarah – plain and tall – and your warm embrace is all the understanding I need.
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