Aching all over, horrible feeling of pressure in head, chest pain. Want to be lying down but too achy to lie still. Looking for distraction but reading or looking at screen increases headache. Lonely, isolated, not depressed. The mountains and the sunshine and the budding trees all are still beautiful and pleasing, I have hopes for tomorrow and next week, there are a thousand things I want to be up and doing, so much to look forward to. But right now is a flare or a relapse or whatever you'd like to call it.
I take what measures I can for comfort. Hot tea, hot baths, sitting in the sun, lying down and riding out the dizzy spells or worst pain. A flare or a relapse is almost meaningless when there are no periods of wellness between, just rises and falls in the degree of pain. Days when I can wash some dishes, days when I can't.
The illness has worsened with activity, with every attempt to work, and with the two times I had to move house. I push myself to keep up with a bare minimum but the simplest paperwork waits in a pile: it hurts my head to try to read it.
My kids are ill too and it's that that gets me up out of bed. If it weren't for having to get them some tea and something to eat I don't know if I would get some for myself. I swept the kitchen yesterday but haven't made it to vacuuming or mopping in weeks. I try, and when it hurts too bad I stop, and I hope that tomorrow, or next week, I can catch up.
Today I'm hoping if I conserve my energy very carefully I'll be able to make it to town tomorrow, to take one of my kids to the neurologist. If I'm not better than this tomorrow I'll have to cancel that appointment. If I do make it to town tomorrow, I'll likely be out of commission for three or four days afterwards. That's how it goes. Save up energy, use it as needed, recover.
Because doctors are typically uninformed about this disease I do my best to inform myself and them. When I have a little brain power available, some of it has to go to this research, as I search for some way to help myself and my children. There is no cure, there are many treatment protocols, nothing helps everyone, we keep trying, we keep hoping.
Some of my energy goes to an advocacy project to help raise awareness of this disease. Being involved in some positive action helps me keep my energy and hopes up. I do believe, from all I've read, that researchers are on the verge of discovering cause and cure. It can't be much longer now. It's just a matter of keeping hope alive and budgeting energy, just a little longer.
But while I ride out one more rough time, with Duck Soup on and the sound off so it won't be quite so lonely but the movie won't hurt my head, with the computer to talk to as long as the brightness is turned down so the glare won't hurt, with the ability to type a little now, but no ability to go back and read and edit what I've written, just for now, for today and for this year and for three years now, it sucks. It really sucks and no I'm not brave. I'm just living with the bad that got dealt me. We all get some bad, and we get by somehow.
It's unfair. It's a life sentence. It deprives me of my ability to work and I loved working. It deprives my kids of the normal experiences of childhood and adolescence. I do all I can to give them some scraps of experience outside the prison of this illness but for one of them it's a big deal to get to go to school, and for the other it's a big deal to be able to sit up for a couple of hours, out of bed.
It's frustrating. Anger at the unfairness has nowhere to be constructively directed. It's microbes, a retrovirus probably, unfightable for now.
Actually there is one place that anger can be directed constructively: misinformation. Errors about the nature of the illness and the best treatment are what's the word... I need to stop this, the words are dropping and the pain increasing as I try to write... errors proliferate. They're perpetuated by doctors, who ought to know better, and by journalists and by all the people who "know somebody who used to have chronic fatigue."
Anger, frustration, loneliness and pain, all fuel what constructive work I can do, when I've got any energy at all, to increase awareness of the facts of the disease.