Tuesday, March 21, 2006

Riding the CFIDS Rollercoaster

Another song stuck in my head today:
When I get to the bottom
I go back to the top of the slide
Then I stop and I turn and I go for a ride
Till I get to the bottom and I see you again...
- Helter Skelter (Beatles and remade by Cheap Trick, U2, etc.)

Whee! In case you haven't guessed, I'm at the bottom of the slide today. Sometimes I just get so sick of these constant ups and downs.

We had a very nice weekend. For the first time in weeks, no one had a fever or required urgent medical attention! We took advantage of our good fortune Saturday and finally made the trip to the beach that we've been putting off for weeks. We've all really been looking forward to this little tradition of ours, escaping to the beach for a mini winter vacation.

We packed up Saturday morning (we've learned not to make advance preparations!) and headed out of town in high spirits. It was cold and windy this weekend, but the sun was shining and the change of scenery was just what we needed. We walked on the beach and deserted boardwalk, ate lunch at our favorite fish & chips place, browsed through bookstores, took a swim in the hotel pool, and just took it easy. Not easy enough for me, though, I guess.

My stamina has been very poor lately, and I guess I was on my feet too much, even though it didn't seem like much at the time. I could tell I was crashing by Sunday morning as the familiar aches crept into my body. I tried to pull back - sitting in the sand watching my boys play, sitting on the floor of the bookstore to browse the lower shelves - but it was too late. By Sunday night, I felt horribly sick, and Monday was a torturous blur spent flat on my back. I'm doing slightly better today - well enough to sit up briefly and use my laptop anyway.

I try so hard to stay positive and optimistic, to accept my "new life" and make the best of it, but sometimes it just seems unbearable. I hit bottom last night at bedtime, sobbing to my husband. At times like this, the thought of living like this forever is terrifying.

How can an easy-going 24-hour getaway make me so sick? How can I achieve my writing goals if I'm unable to make commitments for fear of not being well enough to meet them? I love to travel, to see new places, to explore the world, but I can barely manage a single night away from home.

OK, deep breath. I need to vent my frustration, but I also recognize that I have to try to regain my more optimistic outlook if I hope to feel any better. Stewing in self-pity only makes me feel worse.

First I need to remember all that I have to be thankful for. No, I don't have my health, but I do have a wonderful husband and children who bring a lot of joy to my life. And I do recognize, even during my darkest times, that I am truly fortunate not to be even sicker. Whenever I go through a bad crash like this, I always think of all the people with CFIDS who feel that bad every single day. I just read another wonderful article about Laura Hillenbrand. She's been far sicker than I have, for far longer, and look at what she's accomplished. What an inspiration!

Most of all, although it sounds trite, it's crucial for me to just focus on one day at a time. Considering a lifetime with this illness is too overwhelming. Thinking about all that I want to do with my life in light of my current restrictions is just too depressing. Better to focus on small goals, on getting through each day, even each hour. So, today I'll try to take advantage of this forced downtime to read some more (another thing I'm grateful for, that I can still read!). I'll rest aggressively to help myself get back to where I was as soon as possible, maybe some gentle stretches later. One...day...at...a...time.


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