Monday, May 12, 2014

My May 12 Blog Bomb

I was a dancer, softball player, and volleyball player -- not a couch potato.  So when I started spending my non-working hours lying down, it was obvious there was something very wrong. 

Then things got worse and I lost my paralegal job because I was functioning at about 10% during the day ... when I was at my desk instead of being in the ladies room for hours. 
Generally, I don't watch much TV, but suddenly I was becoming familiar with all the garbage shown during the day because I couldn't concentrate enough to read, and music on the radio clashed with the key of the ringing in my ears.  At least a little of what was being said on TV sank into my consciousness through the mental fog, though there were many times I'd wonder what happened, because I was suddenly watching some other show -- since I was home alone, there was no one to tell me whether I was falling asleep or having an absence seizure.
Trying to do my own housework and yardwork was making me sicker by the week.  Eventually, my body rebelled and I ended up horizontal for a couple years -- if I sat up for more than 5 minutes, I'd pass out.

Yet the doctors rejected the diagnosis I'd gotten from a virologist 12 years earlier, insisting that I was just depressed.  When the anti-depressants made me violently ill, I was accused of not wanting to get well and go back to work.  Oh, yeah, because the money fairy is going to drop cash down the chimney every month so I can pay my bills without working.  They kept insisting that I had to exercise "even if you hate it" -- um, remember what I said about being a dancer, shortstop, and volleyball ace? I don't hate exercise, but I do hate that exercising results in becoming even sicker.  The easiest way to differentiate CFS from depression is exercise -- the depressive returns energized and able to do more the rest of the day, whereas the CFS patient collapses and can't do anything more ... sometimes for several days afterward.  But every doctor at that medical group insisted he knew better than I did, and that I was mistaken if I thought that I recalled that previous attempts at exercise resulted in disaster, urging me to do far more than I was physically capable of.  Remember, I'd already pushed myself to the point of collapse; exercising via essential housework and yardwork had been too much a few months earlier, and now they wanted me to do even more physical activity?!  Their stereotypical paternalistic comments about knowing that "women don't like to sweat because it ruins their hairdo and makeup" didn't sit well with someone who loves exercise; it's harder for me to remind myself that my body won't allow me to dance the night away.

I finally found another doctor -- an osteopath -- open-minded enough to accept that this is NOT depression.  I have rashes and fevers and swollen glands and other things that are never ever a symptom of depression.  He doesn't know much about CFS, but he's willing to learn.  If I bring in an article about some new prescription someone is trying, he's willing to discuss with me the pros and cons (with the reminder that "all drugs have side effects ... some don't show up for 30 years").  Well, yes, I'm willing to put up with dying a few years sooner because I'm taking the drugs in order to have a little more functionality now.  Spending 23¾  hours a day in bed sliding in and out of consciousness is not "living".  There's no quality of life there.
There is no treatment, no cure, but sleeping pills and pain pills at least allowed me to get enough sleep that my body could start to heal itself.  It's been a long hard slog, but I'm up from being able to go out for a couple hours every other week (and spending the next 3-7 days recuperating) to being able to go out 3-4 days in a good week.  I'll never get back to 100%, but I'm a lot better than I was 10 years ago.

1 comment:

Sally Burch said...

Apologies - I have only just found your post for the May 12 Blog Bomb. It is now included on the list.

And we did indeed make it to 100 blog posts! I was totally delighted with the response. Thank you so much for playing your part and encouraging others.

If you know of more posts that I may have missed in the excitement please add links in the comments below the page of links & I will edit to include them.