Can I really be this exhausted?? All I did was....

Discussion in 'Fibromyalgia Main Forum' started by aquabugs, Mar 24, 2006.

  1. aquabugs

    aquabugs New Member

    set up a desktop computer. I moved the tower and odds and ends. My son moved the monitor. I got it all set up and was totally drained. I ended up sleeping away the afternoon and was in bed by 800 last night, on the heating pad with all my neck and back muscles in knots. All dsy today, just total exhaustion. I was in bed on the heating pad at 700 PM (this was after being on the sofa all day) This is ridiculous and soooo frustrating.

    I have been diagnosed with Sjogren's disease and FMS. One doc said CFS, but current rheumy doesn't think so. He thinks my excrutiating fatigue is due to the combination of SJS and FMS.

    I worked until September, when I could no longer recover enough to make the 50 mile commute and put in my work days. Post-exertional malaise knocks me out about 1-2 days after I do any thing extra. From January 2005 till I went out on disability leave in September, I missed as much as 50-75% of my work days each week.

    Now, I can't clean my house for more than a few minutes of light cleaning, I can't work in my yard at all, and I only seem to be able to manage cooking dinner 2 or 3 nights a week (if that). I hardly go anywhere anymore, except locally to buy groceries. That is all I can manage to do on the days I have to shop. Even though I hardly do anything these condition seems to be getting worse instead of better.

    Luckily my mother moved next door to us a few weeks ago and she does almost all the cooking. My husband is older and disabled with a back injury, but he is very supportive and caring and does a lot for me. My brother is coming over to mow and trim our huge yard.

    I love the fact that I have such a loving, supportive family, but I feel so GUILTY. I've always been a "Do it myself kind of gal." It's so hard to have to let everyone else do practically everything. I hate this!! I feel lazy and useless these days. It's not anyone at home making me feel that's ME.

    Being off work, I thought I would at least be able to have good days where I would be able to work in my glass studio. But those days are very few and far between and getting more scarce all the time. All I have energy for right now is reading on the computer and television.

    I know you all are in the same basic situation....

    How do you deal with the loss of yourself and the guilt?

    Hugs to all
  2. kimfibro

    kimfibro New Member

    when just vacuuming hurts my back and wipes me out.

    then there are days when grocery shopping KILLS my lower back and i end up with spasms.

    i do have back troubles aside from FM but certain things trigger a FM flare...whether my back bothered me first or not.

    i know what you're saying, exactly, about feeling 'lazy'. when i'm on the couch with the heating pad, vicks all over my back, and a pain pill taken and it's only 2pm....well, that gets my mind wandering and sometimes i fall into the self pity trap, thinking i'm lazy, etc. etc.

    i have to enforce the fact within me that it's not my fault and there will be GOOD days. and there ARE.

    i hope you have GOOD days scattered in between the bad because that's what keeps me {mostly} upbeat.

    family and friend support helps ease the physical and emotional affects we go through. in return, i'll do very nice things on good days and it has a 'healing effect' for me.

    do what you can and what you need to do and realize that you're surrounded by loving people.

    p.s. i get flat out exhausted once in a while for NO reasons i can think of!!!!

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