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.

1 comment:

  1. Hi Creek, I have read your posts with interest. I send you my best wishes. I have had ME for 23 years so I know the territory well. I live in Australia but things are much the same. kind regards, Willo Ravenswood.