How did I get here?

I ask myself, “How did I get here?” about once a week.  Not in a, “How did I get to Las Vegas?” way, but in a, “How did I become a lumpy, exhausted old Ford Pinto when I was once a sleek and shiny Porsche Carrera?” Well, maybe not quite a Porsche, but when I was 30 years old I was going to school full-time, had a successful broadcasting career behind me, took care of a large house and yard, and exercised for at least an hour per day, sometimes two.  I was so physically fit that I had limitless energy, and could eat anything I wanted without fear of gaining weight.  My metabolism was as zippy as a fly buzzing around your head (yes, that’s pretty zippy).  One day, shortly after my 30th birthday, I woke up and I felt exhausted.  I figured I’d just slept poorly and would be able to shake it off, but was so beaten down by fatigue that I wrote the day off and spent it in bed.  The next day was the same, so I wondered if I had the flu (although I had no symptoms but fatigue and general achiness).  The lack of activity was mentally making me batty, but I had to spend another day in bed, then another, and my life was never the same again.  I can remember trying to force myself to ride my bike a few miles, a task which would have once been just a warm-up activity for me, and I couldn’t do it—I had to turn around and come home.  I felt so incredibly broken.

I’ve never been a person who likes to sit still, and I have little tolerance for “laziness”, so not being able to be as active as I knew I should be caused me a lot of mental anguish.  I never once thought that there was something physically wrong with me, and that I should see a doctor—for some reason I decided it was “all in my head”.  It felt like a battle of wills between my brain and my body, and I either forced my body to do what I wanted, or I beat myself up mentally when I couldn’t accomplish what had to be done.  I was sure it was just a willpower issue, which was a stupid way to look at things, but I didn’t have any perspective on the problem at the time.

Looking back, I’m sure my body and mind just reached their breaking points, although I’m not sure which specific incident might have set them off.  I was personally successful and enjoying achievement, but was living in the US as an illegal alien, had left my previous job after an unpleasant sexual harassment incident, and was living with a partner who tended to be emotionally abusive when she was angry.  She was often threatening to throw me out of the house or to call the INS when we argued, and while living with those threats became commonplace over the years we were together, they took their toll.  My eventual illness with FMS was the straw that broke our relationship, as my partner was angry about my lack of energy and initiative, and believed it to be some sort of rebellion, I think.  I remember she would get so angry at me if I’d put my head down and fall asleep with no warning, and she’d accuse me of finding her “boring”.  I tried to explain that I was just uncontrollably tired, but our relationship was past the point of trying to explain nuance (and I was probably rather defensive about my fatigue, too).  We broke up about 8 months later, in a nasty split which involved lawyers and a few years of litigation.  A doctor eventually diagnosed me with PTSD in the aftermath.  I thought it was pretty lame that I had PTSD because “someone was mean to me”, but medication for the problem made a huge difference, so I guess that doctor was correct.

Long story short(ish), I was diagnosed with depression and PTSD in 1999, and Hashimoto’s Disease in 2000.  I felt better emotionally, but still felt like crap physically, and finally in 2001 a doctor said the magic word, “fibromyalgia”.  I was so pissed off.  Fibromyalgia, in my mind, was just a medical word for lazy and whiny.  I didn’t want to have an imaginary illness, I wanted to have a real illness, the kind that could be treated and would be taken seriously.  I wanted to be normal again!  It’s definitely true that a large part of my battle with FMS has just been my attitude about it, something I’m still learning to deal with today.

I started this blog so I could write about all the doctors I’ve seen (good and bad), the treatments I’ve tried (good and bad), and other treatments which interest me but which I haven’t tested.  I also wanted to write about dealing with FMS without health insurance, which has been a challenge.  Mostly, I think I want to put something in writing that a friend or loved one of an FMS patient might see one day.  I hate that my illness leaves me feeling like death, yet looking perfectly healthy.  I hate knowing that at one time or another, many of my family and friends have wondered if I’m really sick, or if I’m just making excuses, because I look so normal.  I hate that I’ve gained weight that I seem to have no control over, especially because there are people close to me who just think I overeat or lack willpower.  I mostly hate not being in control, which is probably pretty obvious smile ... I wish I could beat fibromyalgia down by sheer force of will.

Posted by on 07/23 at 10:00 PM

  1. My heart goes out to you.  I once had a co-worker diagnosed with FMS and she felt much the same way as you. 

    Currently I am under investigation for a neurological disorder and I am in a sphere of denial, I suppose.  I totally understand your feelings of loss of control.

    Posted by Simply Coll  on  07/28  at  05:15 AM

  2. I wish you luck with your medical issues—I think the not knowing exactly what is going on can be worse than having an answer.  I’m pretty sure you’re a nurse, aren’t you?  If so, at least you know your way around the health care system and know how to get what you need!

    Posted by Leigh-Ann  on  07/28  at  10:40 PM
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