Like many CFIDS patients, my emotions go up and down along with my symptoms. I've had times when I've been at the top of my personal health curve, working fulltime and feeling good.
I've also been bedridden, the low end of my curve. I've been everywhere in-between, too.
Along with the physical roller-coaster ride, my emotions have traveled some peaks and valleys. That's been tough on me and on those around me.
But I learned some lessons during my relapses, so I won't be caught off guard by them in the future. Even though I have a disease which humbles and humiliates me, I've got an arsenal of patience and persistence. Patience means that on my sickest days, I have to force myself to believe that this, too, shall pass.
I know sometimes that's not easy. I have lain in my bed and despaired that I would ever get out of it again. In spite of those really horrible days, I try very hard to limit self-pity and to employ a matter-of-factness that seems to lessen those days' impact on my overall well-being.
Nowadays, if I have a really bad day, when my husband comes home, I simply tell him I had a bad day. I don't dwell on it. I don't bug him for hours with talk of the ‘what ifs' (What if this is another relapse? What if I'll be like this for the rest of my life? What if you catch this? What if we run out of money?)
Most of all, I don't let myself think of me as that person stuck in bed. She's me alright, but she's not the best of me. She's just a part of who I am. So was the ‘well' me. One isn't better or worse, it all just is. What I've got is some bad days, some middle-of-the-road days and some good days. Who doesn't?
Lessons from the Bad Days
I've learned a few things that helped get me through those bad days. Maybe they'll help you, too.
Plan for the Bad Days
I plan for a bad day by imagining it as a day off from work. (I am working on recuperating, after all.) Just like I did when I was well and I had a day off but it was raining outside, I curl up in front of a fire and read a good book. I take naps. I try not to feel guilty that I'm basically doing nothing. (That's what I'm supposed to be doing, I'm sick!).
I have things put aside for my bad days, like very easy puzzle books, some trashy magazines and some crafts I like to do. I write the occasional letter to a friend or call someone else with CFIDS so we can commiserate together. I watch Oprah, eat simple, healthy things I can grab right out of the frig or cabinet. In other words, I give myself permission to take it easy.
Allow an Occasional Bout of Private Self-Pity
On my absolute worst-of-all-days, I allow myself a short period of time to really get into feeling sorry for myself. I cry. I wail. I hold my dog and wonder if this is all worth it. I get very angry. I think about all the useful, fun things I could be doing with my life.
Even though I don't actually believe it for a minute, I even imagine that if I weren't sick I'd be everything I'd hoped I'd be (thin, beautiful, successful, etc.).
Then I let it all go. There isn't much point staying in that mood for more than a few hours. I don't share those moods with anyone anymore. They're mine and I use them to diffuse the worst effects of this disease on my life. I'm persistent in believing that my life is still worth something. I'm still worth something.
Believe in the Good Days, Too
No matter how severe the relapse, I remember the better days and realize that I will have some of those again soon. And even during a relapse, I have occasional good days. I make the best use of those as well.
Use the 50-Percent Solution
I've learned not to squander the little energy I have. On a good day, I try to do about 50-60 percent of whatever I can manage. It is the hardest thing I've ever had to do. It's difficult to learn the intricate way your body tells you when to rest and when to do. I've found I have to play it by ear and pay attention to what my physical and mental needs are. Persistence pays off.
Just Do a Little
On those days when I felt lucid and mildly energetic, there were so many things I hadn't been able to do that I wanted to do that I tended to crowd too much in. Naturally, the next day or so, I paid for it with increased needs for bed rest. Once the pattern emerged, I slowed down. Now I allow myself to just do a little. Then I lay low for a few hours.
Schedule Time for Rest
Even on a good day, I schedule time for rest each day. It's a fact I hate but have been forced to heed.
My Bottom Line
Just because I'm sick doesn't mean I can't have a nice life. Okay, so I probably won't get my old life back, but I can make a new one. I don't dwell much on what I can't do. Instead, I spend time trying to figure out how I can be happy doing what I can do.
The bottom line: life is not a dress rehearsal. This is my life, and it's the only one I'll ever have. CFIDS or not, I don't intend to forget to live it.
Note: Patti wrote this article for the CFIDS Chronicle in the 1990's when she thought she had CFS. She later was diagnosed with and treated for Lyme Disease and, as of 2010, considered herself substantially recovered and was studying to become a psychologist. In 2012, she started an online coaching business.