The evils of CFS/ME

One of these days I’ll write a post about the background of my sickness and the evils of CFS/ME. Sometimes I wonder if I’ll ever be normal again. Beyond the obvious symptoms of this disease, there are some comparatively minor, but majorly disheartening issues that come along with it. Noise sensitivity, light sensitivity, LIFE sensitivity. I don’t want to be in crowds or in loud places or around a bunch of kids or in hospitals. The toll these places and stimuli take on my body is different — but just as severe — as physical exercise. Here are some recent examples:

My aforementioned trip to the dog park yesterday. I was weepy, breathless, irritated. Dogs barking and jumping on me caused me to wince and flinch. I avoided eye contact with everyone lest they try to make small talk or ask what kind of dog I have (a very tall Rhodesian ridgeback – he gets a lot of attention).

My husband and I went to see a movie. We sat in the middle, as usual, but the screen was too big for me to focus on, so we moved further back. Ten minutes later, we had to leave because the volume left me in extraordinary pain. Afterwards, I burst into tears. I felt rattled, shaken, headachy, fuzzy. I felt like I’d been in a war zone for ten minutes.

I went to a baseball game when my best friend was visiting from out of town. The noise was torture. The crowd, overwhelming. The heat, when sitting in the sun, made me feel faint. The chill of the shade made me feel sick. I meditated with my eyes closed to give myself strength, then basically went straight home to bed.

Today, I went to the grocery store. This place is huge. Bananas are half a world away from the strawberries. I went in with a list, worked as quickly as possible, but, it was crowded — families everywhere, carts colliding — I gave up eventually, went back to the car and let me husband check out. I thought I would pass out or puke or both.

There have been so many instances like this. It’s not anxiety or phobia or fear causing it, but, of course, now there is anxiety wondering how a situation will affect me. And wondering whether I will ever be normal again. Whether I will ever again have a high threshold for bright lights, loud noises, multiple conversations or big crowds. I want to be able to go to a concert or the cinema. I want to be able to watch fireworks or go to a party. I want to be able to go to a mall or a grocery store or an airport. I caught a sensitivity virus. Sensitivity to noise, lights, sound, heat, cold, foods, drugs, alcohol, chemicals, animals, touch… I don’t want to be a hermit or antisocial. I don’t want to live in peace and quiet! … I’m forced to.

If, one day, you see my screaming and dancing in a mosh pit at some extremely loud rock concert, just know it is a good thing: I am jumping for joy.