The Problem of the Invisible Illness

(Author’s note: This is a piece I wrote for Rare Disease Day, which was actually the day before yesterday. Blame the fibro head fog.) 

I started doing my yoga exercises again last week.

I used my favorite video for beginners. I huffed and puffed through the 20 minutes of light stretching. I groaned in Downward Dog; I cringed in every plank. When it was over, my muscle pain was less, I was more flexible and I could breathe a little better. The instructor touched the bridge of her nose with her thumbs and told me to thank my inner teacher, so I made the sign of the cross and thanked the Holy Ghost.

Then I collapsed into bed.

Being more regular with my stretches was my new years’ resolution. I was faithful about it for almost three weeks. Then I caught a severe flu, on top of my usual January flare, and collapsed. I have spent the time since then recovering. I eat more protein than I believed possible. I swallow algae pills and drink smoothies.

Everything helps a little. Nothing makes it go away.

Today, on the last day of February, I’m well enough to do stretches again, at least every other day. Stretching also helps a little, but doesn’t make it go away– except on days where it’s an extra stress and makes me sicker. It’s hard to tell what day I’m having until after I’ve done my stretches.

This is my usual state.

I have a chronic illness. Actually I have two, chronic fatigue syndrome and fibromyalgia, but since fibromyalgia causes the fatigue and head fog that make up CFS, I don’t really see why they’re two separate diagnoses. In addition I have acute gastritis and a small hiatal hernia. My most common symptom is exhaustion, followed by insomnia– but the insomnia doesn’t cause the exhaustion because sometimes I’m exhausted from a good night’s sleep. I have attacks of pain in my joints that linger for weeks on and off– thankfully those aren’t very common anymore. I have occasional needle jabs in my feet and wrists that make me jump for no reason. My feet and hands like to go numb at random intervals. My stomach swells. Sometimes I get migraines with bright, exotic, feathery auras and severe pain and sensitivity to light. Sometimes I get a migraine with no pain, just the aura, and people wonder why I start blinking and shutting my eyes.  I have a great deal of difficulty sitting up straight with my feet on the floor for long periods, because it bothers my nerves, so I tend to sit with my legs curled or pace around whenever I can instead. I rock in place like a drunk when I stand for long periods, to keep myself from falling over. Sometimes I get so exhausted I catch myself verbally coaching my body to stay standing– or somebody else catches me talking to myself under my breath and gives me a look, before I catch myself.

None of those symptoms are typical. I don’t have a typical day.