Thursday, April 15, 2010

Better Days

There are better days.

Between my last post and this one, I had a ruptured ovarian cyst that nearly made me pass out, put me on Darvocet and laid me flat for most of three days.

Today, amazingly, I had some energy to spend.

I got up at 4 am, prepared and served 3 meals, washed 4 sink-fulls of dishes, put away 3 loads of laundry, wrote 2 business letters, filled out 6 medical forms and cleaned 2 catboxes, but I still can't go to the ball.

Poor Cinderella! Even the good days are catch-up days. The floors are still dirty, there are more dishes and more laundry to wash, I hoped to vacuum, I was wanting to bake something, there's snacks and dinner to fix and I promised to get some writing done for The Project.

Beyond that, there's a long to-do list, and more piles around the house---the house we moved into nearly four months ago, with boxes still piled high and furniture still not in place and the dog fence still not built, which would spare me that painful walk on bad days. Piles of paperwork unfinished. More contacts to make. I haven't gotten an answer from my disability lawyer or my doctor about medical tests. If they knew how hard it is to clear my brain to write each email or lift the phone to make each call, would they be more responsive, not force me to ask two or three times?

Yesterday was a bad day, and it was all I could do to get dressed. Walking the dogs had me nearly collapsed double on the ground, so back I went to bed. My weller kid will travel for several hours this weekend to a regional choir competition and there's no way I can accompany her. In better days I would have been one of the parent chaperones, one of the drivers, would have brought along my sicker kid. Now all we can do is wish her bon voyage and good luck.

I went to a movie once this year, and to a play once. It was all I could handle, though I rested up for days before and after. In better days I used to hike, dance, kayak, travel, volunteer, garden, so many things lost to me now. There's so much more I long to do, beyond what I just have to do for basic maintenance. Being sick, just basic maintenance is a dream.

That's life, sometimes we get sick, sometimes we stay sick for three years, or thirteen, or twenty-three. We have to let go of some things. I've only been sick three years so far. It could be worse.

But that's just it. It might get worse.

On a really good day, like today, I can get quite a bit done, but it's still not enough to catch me up.

Women with ME/CFS often see symptoms worsen with perimenopause. How can I plan for the possibility that I'll be worse? With so much undone already, how would I survive, sicker than this?

Maybe I could get help?

I'm only making it as well as I am, now, with a lot of help. This week, for example, my sister took me to an emergency doctor appointment for an acute problem. She did grocery shopping for me twice. She cooked dinner for me and her out of town guests, family from far away. When the guests came to visit me I had to be in bed for their whole visit, and they picked their way through my filthy house and while we talked they folded laundry for me.

It's hard to imagine what that visit would be if I were sicker, how my kids would survive if I were sicker, what would be left for me if I were any sicker than I am now. It's already so hard, and I have to prepare for the possibility that it will get harder still. How?

If my disability case is approved, maybe I could apply for in-home assistance, but I've already heard that there are so many budget cuts these days, it's almost impossible to get in-home assistance.

Is it pathetic that I spend part of one of my better days worrying so much? What will happen if I get sicker, if I don't get disability insurance, if my sister moves away? So many things could go wrong and to worry about them would be considered responsible, realistic, planning ahead, if there were actually anything I could do about them.

Maybe I can just avoid getting sicker, by avoiding pushing myself: more damage is caused every time I push. That is, I must somehow do even less on my better days.

Sunday, April 11, 2010

a flare or relapse

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.