nichtszusagen

• Nine years ago today, my life changed dramatically. I developed Chronic Fatigue Syndrome. It ranks up there with the most life-altering events I've experienced: my parents' divorce, joining the Army, and the birth of my first child. (Note: obviously, there've been multiple events that have changed my life, but these four things made the biggest impacts, and led to other life-changing events.)
  
  
• I've decided to commemorate the occasion by writing it all down. It would be cooler if I waited until next year, but, well, I have the urge now, so now it is.
  
  
• February 28, 2001.
  • The Nisqually Earthquake measuring 6.8 on the Richter Scale hits the Nisqually Valley and the Seattle, Tacoma, and Olympia area of the U.S. state of Washington.
  • 2001 – Six passengers and four railway staff are killed and a further 82 people suffer serious injuries in the Selby rail crash.
  • and I woke up feeling sick as a dog with what I thought was the flu or something.
    
    
  Not a good day, apparently.
  
  
• I felt as sick as I can ever remember feeling, and so weak I could barely stumble out of bed. But I had kids to get ready for school, so I pushed myself. I even walked the boys the half-mile to school. Very very slowly. It took me forever to get back home, but I didn't dare stop or sit down, because I was afraid I wouldn't be able to get moving again.
  
  
• Every once in a while, I wonder if things would have been different if I'd just gone back to bed and told Carl to take the kids to school.
  
  
• After a couple of weeks of feeling really sick and not getting better, I went to the clinic. They said I was probably dehydrated and that they could either give me IV fluids or I could just go home and drink a lot. So I went home and sucked down bottle after bottle of Gator Aid and lots of water. For days. No change.
  
  
• Not only did I not get better--I just kept losing more energy. Walking up the stairs was like climbing a mountain. Some days it was all I could do to crawl the the bathroom.... and then lie on the floor waiting for enough energy to crawl back to bed. I'd have been scared to death if I'd had the energy to feel that much. Which is just as well--Carl and my mom were scared enough for me.
  
  
• Even worse almost was the brainfog. I've always been shy, and think through what I'm going to say before I say anything, but this was almost like you hear from stroke patients--I couldn't think of the simplest words, and it became nearly impossible to concentrate on anything. Watching TV was out of the question--I couldn't follow what was going on. Thank goodness I could still read. Sometimes I'd have to read a page several times before I made sense of it, but it was better than nothing.
  
  Answering questions was tough. Like: where's the tea? I could picture the answer in my mind, and if I'd had the energy, I could have got it myself with no problem. But how to describe where it was? In the door by the place where stuff is cold (the cupboard next to the refrigerator). That sort of thing.
  
  
• So we started on the rounds of doctors. I'm sure I'll forget some, and I only remember one name, but it lasted for a couple of months.
  
  
• One of the first doctors I saw suggested Chronic Fatigue Syndrome, but I balked. That was "yuppie flu," for hypochondriac whiners who wanted attention. Heh. Regardless, CFS is a diagnosis that gets made after all sorts of other things are ruled out.
  
  
• The neurologist said I was neurologically fine and set us on the course of what else to rule out.
  
  
• The internal medicine doc couldn't find anything and suggested a cardiologist. And gave me hell for skipping the gynecologist. (I hadn't been in about 7 years.)
  
  
• The cardiologist was frustrating. Gave me a stress test. Put me on a treadmill and said to keep walking until I felt I couldn't anymore. I wasn't really sure what that meant. I kept walking, and I felt like I was floating further and further away. First my eyes crossed, then my vision narrowed. I was still all there in my head, but seriously disconnected from my body. So I got off the treadmill and stumbled over to the exam table. The doctor kept asking me why I stopped, and in my head I was answering him, but nothing would come out of my mouth.
  
  So he sent the nurse out to ask Carl if I was a little slow--and Carl said yes (see above, re: thinking before I speak). Still bothers me to this day. It's probably somewhere in my medical records that I'm mentally defective. Grrrr. But at least the question was answered--my heart was fine.
  
  
• The rheumatologist was probably the best doc I went to. Too bad I didn't have something he treated. He repeated the CFS idea, and suggested going to an infectious disease doc to rule out lyme disease, etc.
  
  
• But in order to get an appointment with an infectious disease doc, I had to go through a general practitioner first. That's the one whose name I'll never forget: Dr. Jael. He decided I was just a depressed housewife who wanted attention, and told me to go home, take some Prozac and quit wasting medical resources. Literally. If we hadn't been so scared and exhausted from trying one thing after another, we'd have followed up, made a complaint.
  
  I did have enough on the ball to argue, though. I'd been researching CFS, and discovered that antidepressants, and Prozac specifically, made symptoms worse unless taken in minuscule doses. Plus, it tends to kill sex drive, and sex was pretty much the only thing physical I could do. I was not about to give that up.
  
  So I tried to be reasonable. Me: How can you tell I'm depressed? Dr. Jael: Have you lost interest in things you used to enjoy? Me: No, I just don't have the energy to do them. Dr. Jael: Do you feel sad or hopeless? Me: No. Dr. Jael: ignores me, writes prescription for Prozac. Me: so do you think I should see a psychiatrist? Dr. Jael: No, the Prozac should do it.
  
  At this point, I'm so furious that I can't talk anymore. Carl takes over and finally makes a deal with Dr. Jael: we'll take the prescription if he'll write a consult for the infectious disease doc. Dr. Jael highly disapproved, but he did it. I didn't get the prescription filled.
  
  
• The infectious disease doc was great. He seemed to enjoy the puzzle. Though I had to laugh at my last appointment with him: I'd say you have chronic fatigue syndrome if you'd been sick for six months, but it's only been five and a half... Still not sure if he was joking.
  
  

Labels: about me

// posted by Darla @ 2/28/2010 02:26:00 PM