a flare or relapse

(repeating my blogspot blog here again... mostly just typing out of loneliness really, and thinking maybe I can try to describe for others who don't have this illness, what it's like to live with)

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 trying to create 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.


Lots of virtual hugs. I'm going downhill rapidly, myself. It's not fair at all. It's one of the cruelest diseases. We can't have a life from it. I just hope some day we get answers as to why and what this is and why us.
I am sorry for your pain. I understand it all too well though. Virtual hug as well. It truly is an awful situation with only a few who really get it. You are not alone. You feel like you are, but you are not.
Thanks so much, Carrigon and Spitfire! I felt like I was being whiney, falling short of acceptance and failing miserably at transcendence, but I just wanted to write it out this time. And maybe it's okay to whine a little, now and then, eh? Hugs back and if you don't need 'em at the moment, bank 'em for your next whiney time!
Creek, your posts and blog have been a blessing for me today. They have helped me get thru a very bad day. You made me feel there was someone who understood what I was going thru, and that I was not alone, and for that I am truly grateful.


Thank you all so much. I'm glad I went ahead and poured it out, now that I know it was helpful to others!

Maarten that picture you linked is wonderful. I will keep the frog in mind. I wish I could read Dutch but I will look for the one Multatuli work available in English.

Dealing with a whole new situation that "erupted" yesterday so perhaps I'll blog on that next. As Emily Litella so wisely said, it's always something.
No energy to blog about the new situation so I'll just add a quick note here: ruptured ovarian cyst sent me to emergency gyn appt yesterday. On bed rest and darvocet, hurts but managing ok and so glad I didn't die because it hurt like I might. More info in Symptoms subforum, thread titled "Gynecological Issues and xmrv" or some such. Should be fine in a couple days. Or, well, you know... "fine."

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