Living with Fibromyalgia

By Allison Jonergin

Having fibromyalgia is constantly feeling like yesterday was leg day. And also back, chest, arms and shoulders day. It feels like a pulled muscle and dropping keys because I forgot I was carrying them. It’s being unable to concentrate and feeling exhausted after having one casual conversation. It’s not just forgetting an item on my To-Do list. It’s forgetting I have a To-Do list.

Fibromyalgia is going as long as possible between loads of laundry because I struggle to lift and carry the basket. It’s hurts to go up and down the stairs to get to the laundry machines. Sometimes I forget I even have clothes in the wash.

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Living with fibromyalgia is planning a get together well in advance and rearranging my activities for a few days to accommodate the exertion. It’s napping beforehand to forestall the inevitable storm of pain and exhaustion. For days afterward, my mission will be to sleep as much as possible. I’ll feel like I have the flu and no matter how much I sleep, I don’t feel rested. Fibromyalgia is simultaneously hating taking medicine and relying on them to survive the day. It’s panicking and experiencing pure chaos when hanging out with friends bumps a dose. This only exacerbates the pain that follows an event like that, the kind where lying still long enough to fall asleep feels like a torture tactic.

Sleeping can either feel like the most luxurious thing in the world or totally unrefreshing. I’ll lie in bed even if I can’t sleep because I feel too tired to move. Other times, I’ll wake up and massage my leg muscles before I feel comfortable putting any weight on them.

Fibromyalgia is going shopping as quickly and infrequently as possible. If an item is hard to find, I abandon it and move on to the next. Getting home, I feel I’ve survived a physical and mental ordeal. Opening the car door and carefully swinging out my sore legs one at a time is easily one of the most painful parts of my day. I never know how stiff, sore and worn out they’ll be or how long I need to sleep before I’ll feel up to moving again.

Fibromyalgia can feel like my arms are burning off of me and my legs are lined with electric fencing. My joints each feel as though someone has hammered a nail into them. Reaching, bending over, squatting, pushing and pulling all feel like I’m putting a flame to my skin and holding it there.

I’ve lived with fibromyalgia for over five and a half years now. Reducing the amount of work I have to do is the best way I combat the pain. I implement laziness haphazardly and sometimes strategically. I take my medicine and go for walks. I reduce the stress in my life and calm my reaction to it when it cannot be avoided. Most importantly, I strive to survive. It doesn’t happen by accident. Living takes a lot of work, but it’s worth it.

Allison Jonergin is a SUNY Plattsburgh alumna and North Country native. She has fibromyalgia, CFS/ME and endometriosis. She also deals with irritable bowel syndrome, anxiety, depression and migraines.

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