Entering Relapse

 

There are those who think the problem in CFS is simply laziness, an unwillingness to get a job.

 

They should be here today.  Last week, I took a gamble on going out one day more than I usually do ... I felt pretty good at the beginning of the week and thought I could push it.  And now I'm in relapse.  I spent most of Sunday in the bathroom; I'm running a low-grade fever; I feel physically drained: anyone who didn't know that my diagnosis is CFS would probably give me an amateur diagnosis of "the flu".  Only someone too closed-minded to see past the stigma of the CFS diagnosis could possibly look at the objective symptoms I'm having this week and continue to insist that I'm not sick, just lazy.

 

It should be pretty obvious that if just leaving the house for a couple hours 3 days last week makes me this sick, I cannot possibly be expected to survive a 5-day workweek.  Several times in the past 8 years, I've tried it, and failed.  It's not just that I "think" that I can't work, but that I have proved it repeatedly: every time I have tried to work more than 6-10 hours a week, I have wound up relapsing, with lots of objective symptoms that demonstrate I'm not imagining things, the relapse is for real.  (You can argue with my statement that I can tell I'm entering relapse because I start having weird dreams and nightmares, since the only person who can see my dreams is me, but you can't argue with the thermometer or what I'm doing in the bathroom.)

 

Fortunately, I've been down this road often enough to know that if I'm a good girl and stay in bed for a few days, I'll feel a little better.  Maybe when my friend is here next week I can go out to lunch (but I don't think I'll be up to the outing we originally had planned).  But the house isn't going to be thoroughly cleaned for his arrival, because trying to do that would land me in bed for weeks, and affect my health for months.  I simply will not do anything more physical this week than walk from the bed to the front door to pick up the newspaper, and then back to the bed, because severe restriction of physical activity is the only way to stop this downturn from cascading downhill.

 

A friend did bring me a hot lunch today, thinking (correctly) that if it was delivered hot, I'd eat, but if I had to make the effort to heat food (even a TV dinner) I probably wouldn't feel up to it.  I do have a couple boxes of SlimFast next to the bed, so I'm not going to starve.  I'm just not going to be eating my veggies like I should!  (This is why I have super-deluxe vitamins.)

 

Reading what I'm writing in e-mails or talking to me on the phone, you have no idea whether I'm in bed or upright, and this is a lot of the problem with blogging about CFS.  People imagine what they want to see.  Some have imagined that I'm able to do absolutely everything, including hiking in the mountains, and simply choose not to work, because they don't have the visual image to contradict their impression of what CFS is.  That laptop computers enable people to write e-mails and blog posts while lying fully horizontal in bed doesn't cross their minds until I hit them over the head with it that they have never seen me to know what I do all day ... it's strictly their imagination filling in the blanks of what I do in between posting, and most people's imagination is limited to what they themselves experience.  They get out of bed, sit at a desk to answer their e-mails, and spend the whole day on their feet, so it never crosses their mind that someone else may have to spend most of the day lying down because standing up makes them pass out.