Thursday, January 14, 2010

Home, where the heart is.

With all of our stuff that had been in storage for a year, with our two dogs and our four cats, and with help from family, friends and complete strangers, we made it into a home in time for the holidays. Thank and bless you, all who helped.

In three days it will be a month, already, since we moved in. We're still negotiating our ways between chaotic dissarray of furniture and boxes but from the first night (thanks to my sister's preparations that day) we've had hot meals, warm beds and plenty of serene surroundings to help us chill out. In fact, there was a gorgeous snowscape waiting to greet us.

I had hoped to get here and then just rest, restrestrestrestrest. But wait, if I say "rest" several times quickly, like that, it comes out sounding like "stressed stressed stressed." I'm trying to let the worries be duck's water, to let them slide off and go forward each day doing what I can and not worrying about what I can't accomplish, but there's so much to do and of course it all needs to be done right away.

Then there are the changes, losses, adaptations: coping with the move has been nearly as high stress as was the search for a home. Shortly before we moved, several different people complimented me on my bravery. What's brave? That I keep on going, day to day, despite bearing more troubles at once than the average American has to face? I wonder, first, what else there would be for me to do, day to day, but to keep on going, and second, how well would I handle the troubles of a Ugandan mother during the drought or of a Haitian mother after the earthquake. I look at my kids and know it distresses them sometimes, not to have the life that others around them appear to have, but I'm grateful they're housed and fed.

Keeping them housed and fed is an ongoing challenge, however. At every turn there's more paperwork to do. "You say you're disabled and can't hold down a job? Here: fill out these forms, and these, and these." Is this a test? If I could fill out all those forms, I'd be able to do a job.

We still haven't signed up as test subjects with Whittemore Peterson. One more element needs to be put in place: I have nothing to fill out under the doctor's information. I've tried to get us to appointments with the doctor we plan to see here in our new county, but weather and illness have prevented our going. Meanwhile, prescription coverage was denied because I haven't completed the paperwork: a maze to negotiate, to get past coverage canceled and new coverage in place. It shouldn't be so tough, but each and every thing is just that little bit more complicated by bureaucracies and bungles than I can handle.

Yes, I'm grateful that we're housed and fed, that we're alive, but I'm also aching so bad that sitting up at the computer is limited, and cognitive stuff is fogged by pain and overload. I'll try, today, to fill out at least one paper and get it in the mail. A pile of others will continue to grow.

I'm supposed to rest. I'm supposed not to stress. Each day I feel in aches and exhaustion the price I pay immediately for being unable to rest. What price will I pay, longterm?

When I came back to my blog at last after over a month, I saw that a blog I subscribe to had a new post about ME. It seems we're more likely to die from heart failure, according to a study published by the US National Institutes of Health on its site, here.

Am I brave? I'm tired. Heart failure sounds like a fast death and then a complete rest. But I want to see my child beat ME and live to a ripe old age. Having a home is one step towards Hazel's heart health, so cowardly and defeated though I may often feel, I'll push on as if I were brave, hoping I'm not pushing too hard.

The dogs and cats who come to me to cuddle right when I'm feeling most pain, my children who make me feel worthwhile when I can do something for them and who find ways to help me when I can't, my sister who checks in and offers help from grocery shopping to school rides for my well child, the family and friends whose responses to my emails let me know I'm not alone though I might see nobody but my kids for days, hope. There's always something to keep me going, brave or not.

1 comment:

  1. Hi Creek,
    I just wanted to tell you, for the Whittemore-Peterson forms, you can even put in the info of the doctor who diagnosed you, or a former doctor.....they just need to be able to confirm that you have a bona fide CFIDS diagnosis. :)