Without the label of fibromyalgia

why do some people dislike labels when they help us understand what is going onWithout the label of fibromyalgia, I’m a human being in severe pain.

I am a human being who feels pain 24/7, 365 days a year.

Without the label of Chronic Fatigue Syndrome — I am a human being who is more than simply exhausted.

I’m not talking about the kind of tired I used to feel after a hard days work.  Not the kind of tired some people say I might have, “because I don’t run ten miles a day like they do,” or “because I write,” or “because I need to get out more often.”

People who think they know why I’m tired or in pain, who don’t know one little iota of truth about fibromyalgia and Chronic Fatigue Syndrome, are people whose opinions mean zilch to me.

I was a firefighter.  My training made me so tired I had to go to the doctor.  This was before any diagnosis of fibromyalgia or Chronic Fatigue Syndrome.  This was before Lyme disease in 2003 and near death from Rocky Mountain Spotted Fever in 2005.

I got over being tired after that training.  The doctor, who is a homeopathic physician, told me to rest and drink fluids with electrolytes.  So I did and after a day or two,  I could run with the best of them again.

Without the label of fibromyalgia, I am a person who has severe problems sleeping.  I never get good sleep.

Without the “label,” I am a person who sees days where taking a shower wears me out.  I get all nice and clean.  I get dressed.  I fix my hair.  Sometimes I even put a little makeup on.  Then I take my shoes off and fall on my bed from sheer exhaustion.

Without the label, I am a person who cannot live an active life.  Some days I’m a person who spends the day in bed, not sleeping, too tired to read, too tired to move, who just lies there like the living dead.

Without the label, I am a person who strives to make it through one trip to the grocery store and 98% of the time I can’t get all that I intended to get.  I could if I used one of the riding carts or whatever they are called, but I’m not there yet.  I’m not at a place in my mind where I feel I’m ready to reveal to the public how disabled I am by FATIGUE.

Without the “label” I am a person who hurts when I take wet clothes out of my washer.  I am a person who hurts when I push a vacuum cleaner.  Many days, I’m a person who feels like a plastic bag weighs ten pounds.

Without the label, I am a person who gets so tired that my brain seems to collapse inside my head.  This is called, brain fog, but some people can’t take labels.

Without the label of brain fog, I’m a human being whose brain stops functioning and I have a hard time adding 2 + 2!

Without the label, I would be quite confused as to what the hell is happening each and every moment I live!

Too tired to say how tired I am of people who don’t know squat about what it means to live with Chronic Fatigue Syndrome and the pain of fibromyalgia.

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Image of ferns by, “The Graphics Fairy”

I chose the image of the fern because even plants have labels.  I stand on both sides of the fence, or perhaps I’m the FenceSitter, regarding the use of labels in medicine.   Labels are useful but can be abused.  Labels can be used to identify a whole person and I believe, those of us who have an ongoing health issue, illness(es) or disease(s), know that we are more than a label.  We remain fully human.

Thank you for visiting my blog.



11 responses to this post.

  1. Well I’m a little late here but wanted to throw my hat in to say Hello, I’m so sorry you have this dreaded disorder too. I can identify with your blog. It’s so honest! God bless you!

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    • Hi camary– Thanks for the visit and I hope that your word bless had a typo. The word was “less” but I added the B to make bless.

      Thanks for your kind words. That is always, always appreciated and meaningful.

      I hope you have a blessed day and hope to see you back around.
      dogkisses…

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  2. I’d respond, Miss dogkisses, but I am just too damn tired!

    Hugs,
    me,
    CJ

    (See my response to your response on my blog -I think)

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  3. Hi Dogkisses!

    My nephew lives with me and has since he was five years old. He’s eighteen now. One of the most frustrating things we’ve gone through is his tiredness. Too tired to exercise. Too tired to sleep. Too tired to want to do anything other than take a nap or watch TV (while drifting off to sleep).

    I mention this because he was recently diagnosed with the Epstein-Barr Virus and will chronically suffer fatigue throughout his life. We didn’t know what was going on for the longest time and assumed he was kinda lazy like his nee’r-do-well father. He couldn’t tell us why he was so tired, it was more or less like watching for clues to his mystery. The first thing we had to do was ‘eliminate the labels’ and ‘judgments’ and assume he really was what he said: TIRED.

    I don’t know what his future will be like but I thank you very much for writing about your life with such honesty. It helps me understand and feel compassion for him instead of frustration!

    Hugs,
    CZ

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    • Hi CZ– Weird that you mention that because honestly, I think I should be tested for that virus. Sometimes I get the shingles virus and it makes me really sick. I take meds to prevent an outbreak but the virus itself makes me sick. I’ve read where this is related to Epstein-Barr Virus.
      I also think my son should be tested because he too gets really fatigued, but he enjoys physical activity he does it anyway, then he is really tired for days. It seems like he’s too young to be so tired. We both see a doc tomorrow and I’m going to ask him although he is quite conservative about further testing, at least for me, but if I press the issue he will listen.
      I hope your nephew finds relief. I think it is good to finally figure things out. Labels can be very helpful. Without labels when it comes to health problems, we can be lost, or I can anyway. Language gives us an ability to understand our challenges.
      Thank you for reading and sharing your thoughts with me.
      Have a blessed day!
      dogkisses and hugs.

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  4. “Too tired to say how tired I am of people who don’t know squat about what it means to live with Chronic Fatigue Syndrome and the pain of fibromyalgia.”

    You did tell them, and did it very well.
    My brother, who was, at the time, just a few weeks away from dying of a terrible disease, observed that he was more able than I (though I was applauding myself for hiding my own difficulties so well because our time together needed to be about him.)

    He said “Your ‘fatigue’ is to ‘tiredness’ what a tidal wave is to moisture.” His observation came out of the blue – we’d been talking of many things, not me – and though some have said it as well, no one has said it better.

    I hope the tidal wave lets you come up for air soon.

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    • hidden lives — (smiles) Thank you — but who did I tell, lol, and very well?! If I did I am glad of it.
      What a beautiful and loving thing for your brother to say.
      Thank you for reading, and especially for sharing.

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  5. [...] This post was mentioned on Twitter by Dr Vic Kalman, CronFitSyn. CronFitSyn said: Without the label of fibromyalgia « Dogkisses's Blog http://bit.ly/dx8jMC [...]

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  6. You got it exactly right! Too tired to do much of anything. Because I don’t want to look like a hag I get in the shower and then rest. I put on some makeup and then rest. I dry my hair and then I’m done. I did all that today and made dinner and I’m now in bed because I can’t do any more. I’m exhausted. This isn’t “gee, I’m tired.” this is being TOTALLY wiped out. Feel better sweetie……………..

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    • Rose– thank you. You know the old saying, well, maybe it isn’t so old, about being dressed up and nowhere to go? I guess we know what that’s like, only we get dressed up and can’t go anywhere… Sigh…

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