Friday, December 20, 2013

What's worse?

Having a name to put to this feeling-awful-all-the-time is helpful: fibromyalgia. It puts things into perspective. I know that I can "ignore" the pains - I am not injured ... or whatever ... no matter how it feels. At least a name takes away some of the worry, that relieves the stress, which, in theory, should help with the pain.

I struggle with figuring out what is the worst thing.

  • Is it the involuntary - sometimes controllable, sometimes not - muscle twitches: all the time and worse when I try to relax or am tired?  
  • Is it the sheer exhaustion all the time: the feeling that I just didn't rest or sleep well no matter how long I was asleep. 
  • The pain? In the end pain is just a feeling.  I like to say, "I was in labor for three days and gave birth without the benefit of medication." I am not afraid of pain.  It's what the pain signifies that is a problem.  Still, when you are in pain - as bad as the later stages and the end of labor: so bad you are stopped in your tracks and can't speak - all the time, that becomes difficult to deal with. Pain medication (acetametaphin, ibuprophen, naproxen) doesn't really even cut the pain; unless you take so much it becomes dangerous. Even then, it's still there.
  • Is it the foggy-headedness? or the inability to find the right word or sentence to express even the simplest thoughts?
  • Perhaps, it's the fall in physical ability.  Where once, I attended tae kwon do class twice a week, practiced outside of class, went to the gym 4-5 days a week, and thought nothing of walking/running a 10K, now three minutes - just three minutes - on Wii Fit winds me. Ten minutes of boxing (13 Wii Fit minutes) is more than I can bear.  Until this thing hit, I was well on my way to a black belt, and now I can't even make it through the warm up.  Walking on the tread mill for 15 mins (no incline, 2 mph) is so painful, I am in tears. A year ago, I was walk/running at a level four, random hills, at over 4 mph for 45-60 mins.  Even thinking about it makes me want to sob.
  • I don't know.  It's all of those things, and more, depending on the day, what I am doing, or what I need to do.

Most days, I get one thing - only one thing - other than my work.  There may be days where I don't even get that: prepare dinner, exercise ("I know it hurts, but you must exercise. It will (eventually) make you feel better." - Thanks, I'd love to. How, exactly, am I supposed to do that?! Pray tell.), homework with the boys, something for me (forget that, I don't get that), housework (sigh).

I just want this gone. Failing that, a way to move forward. To live my life as I've dreamed - or even just normal, I guess. I am not afraid of pain, but the exhaustion is killing me. How do you pace yourself when the responsibilities don't go away? People give advice so blithely. Help on how to take it could be welcome.

Tiredly yours,

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