The Mighty Logo

When Fibromyalgia Is a Series of Decisions

The most helpful emails in health
Browse our free newsletters

I always find it hard to explain to people what fibromyalgia is. One simple explanation is chronic pain and chronic fatigue. The trouble is, people think those are the only parts of the illness, or that if I have an early night, get some good sleep and take some painkillers, those things get better.

They don’t. And that’s OK, I’ve got this. It would just be nice if you could understand.

I was never good at decisions — I was terrified I would make the wrong one and it would be disastrous. Now I pretty much assume that as long as neither decision ends up with me dead or financially destitute, either is probably OK.

Now my life is full of decisions.

Fibromyalgia means deciding between showering or making breakfast.

It means deciding whether to dry your hair or go to work in a mess while you still have enough energy to leave the house.

Fibromyalgia often means deciding between sleep and food.

It means deciding whether holding the weight of your electric toothbrush requires more effort than brushing the manual one around your mouth. (I’m not even kidding.)

It means deciding between earning money or doing the things you enjoy because there is rarely enough energy for both.

Often, it means deciding to take charge of your own health, because many doctors don’t know enough about your condition.

Fibromyalgia means careful decisions about what to wear, not out of vanity, but out of consideration of the fact that your body cannot effectively manage its own temperature.

It means experimenting with, and deciding on, your limits. How much exercise is enough to reduce my daily pain, but not too much that I’m exhausted? How likely is it that I can attend a social event this evening and still get through my week?

It means deciding to accept where you’re at. All right, I’m in the middle of a flare. All bets are off. Normal limits don’t apply. I will do as much as I can, and that’s OK.

It means deciding that you won’t give up. Each day is different. A flare may last for a day, a week or a month. It means deciding every day to wake up and hope for the best.

Even I know that’s not a bad decision to make.

Living with fibromyalgia is tough, but by getting to know yourself and your body’s limits, you can make the most of the energy you have. It takes time; be patient with yourself.

You might think you’ve got a great routine down — one that’s not too strenuous, one that allows you to do a bit of everything. Then out of the blue, you get knocked flat. Get. Back. Up. Don’t think you can no longer do anything. In a few days, maybe a week, you’ll start to feel better again and you can get back to your routine. You’ll learn your triggers, and when you need to trade tasks. You’ll also learn the signs of a flare and that it’s not your fault. Sometimes you’re just wiped. Surround yourself with people who love and support you, and don’t be afraid to ask for help.

Image via Thinkstock Images

Originally published: August 5, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home