rootofnewt | (no subject)

more CFIDS. It's a letter written by Peggy Munson, a writer and PWC.

dahliablue gets my thanks for the link.

I'm considered high-functioning for a CFIDS patient. I can generally get up to boil water. Sometimes I need to sit back down, sometimes I can continue on and do some dishes or make dinner. I can walk around a store, but I might need to lay down or rest the rest of the day. I can even go for long walks, go out to restaurants, and go to parties, but I'm left with swollen glands, a sore throat, and extreme fatigue for the next few days or weeks. I'm not bedbound. I can use the toilet unassisted. I can read a book on *most* days, but there are some where I cannot.

Sometimes, the CFIDS more or less goes into remission for a few days or weeks and I can go for a hike without suffering extended fatigue, but I still have fibromyalgia and, therefore, still have fatigue and unrelenting pain and brain fog. Eventually, though, I crash. My throat gets sore, my lymph nodes swell, my joints start to ache, and I'm too tired to breathe, it seems.

It's not just tiredness. It's more than that. I used to get tired after running 10 miles, but I didn't have any problems doing it again the next day, or the day after that. I didn't have any problems driving home or fixing dinner or doing my homework. My glands didn't swell, my throat didn't feel raw, and I didn't have aches that never went away.

This... it's overwhelming. It's the curling up wherever I happen to be--in the yard, on the couch, on a bench at the library and not knowing when I'll be able to stand up again. It's going to bed and not knowing whether I'll be able to do dishes the next day or even take a shower. It's coming home and putting the groceries in the kitchen, but not putting them away until I've had awhile to recoup, but being grateful that I managed to get all the way through the store and pay and get home again--even if I didn't drive.

I live with the fear that this could get worse. I could become completely housebound. I could become bed-bound. I could become dependent on others for my simplest needs--feeding myself, bathing myself... I don't expect to get worse, but when you feel like I do... you don't really expect to get better. It's not realistic to think that. Every month, every year, the chances that I'll recover dwindle.

Of course, I still hope. I refuse to apply for disability because of either hope or denial. Hard to tell which it is. ;) I wonder if maybe, just maybe, the next time I'm feeling better, I won't crash. Maybe my heartrate will settle down from it's skyhigh resting pace of 105bpm and become more sedate, eliminating the pounding in my chest that happens when I walk a little too far. Maybe I'll just be left with fibromyalgia and, ungrateful git that I am, I'll at least have the energy to complain and protest and demand adequate pain relief.

Maybe.