The Saddest Words

Every professional sick person knows the word bank of things they certainly don’t want to hear:

You don’t look sick     Have you tried…..    We don’t know why your test results declined/showed up normal     I wish you could still do….    Your prescription isn’t covered by insurance    Why don’t you get out more?

The list goes on.

Every full time sick person knows that their disease impacts most, if not all, of their life. And we are only human, so every now and then the pressure becomes too much and we blow.  I emotionally shipwrecked last night.  Fibro was just too much to deal with.  I sent out an SOS, that Oz sort of responded to.  Only to give me another phrase to add to the word bank.  “I know you don’t want to hear this, but I think you need to go on medication for your fibromyalgia.”

This is something that is a very sore subject with me. When I was first diagnosed with fibromyalgia, I went on medication. More than a dozen medications.  And every single one of them ended with bad side effects.  I am chemically sensitive, and being a number of doctors’ test tube did not work well with me.  (Now, I take pain medication, and try to manage it through holisitic and lifestyle measures). I’m not opposed to trying new things, but certain medications are completely out of the picture for me.  I have four years of my life that I can hardly remember due to the number of medicines being pumped through me.  What’s four years when you have a lifetime, you ask?  It’s a high price to pay when I already feel like I am losing time everyday with fibromyalgia.

He doesn’t understand that I have him now, and can’t imagine losing another second of that time due to fibromyalgia (even though it happens).  I love him. And I love the me that I get to be with him when I am not in large amounts of pain (free).  Losing that is only a couple of misplaced chemicals to the brain away.  That’s a life sentence I could not bear.

But the saddest words I have ever encountered came through muffled white noise, twenty some miles away. “I miss you.”

And he didn’t mean in person, we saw each other yesterday.  He meant fibromyalgia wise.

I miss me in less pain.  I miss me in my bubbly attitude.  I miss being up and out all night.  I miss finding hope in every situation.  I  miss going on failed adventures.  I miss not feeling absolutely alone.  I miss not crying multiple times a week.  I miss feeling brave.  I miss…

Yea. I miss me too.

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13 thoughts on “The Saddest Words

  1. *hugs*
    I know what you mean. Sometimes the pain and discomfort feels all-consuming. I often wonder about the alternative ‘me’ who did not get fibro – what would she be like, would she have a full-time job (something kerazy like that), would she have more friends? Its hard not to think like this. When I talk about it I feel like im whinging, so i rarely do talk about it.
    Btw I think maybe the worst line of all is ‘There’s always people worse off than you!’ – i could punch them in the face when people say that!
    xx

    • I agree- the ‘people worse off than you’ comment is enough to be irritating! I usually want to say, ‘well i’m worse off than YOU so how about a little respect/empathy?!’ And it’s not whining. sometimes it is good to keep that in perspective. Overall, I appreciate who i am because of this disease. Some days (as you know) are just really hard. Thanks for the hug!

  2. It’s odd isn’t it, grieving for yourself. I understand how low you must be feeling right now, just be nice to yourself ok? It’s important to be kind to yourself at times like this.

  3. I miss me too. Tried the “fibro meds” and they made me feel worse than I did without them. Sure, they helped the pain, but at the price of my mind and my ability to stay awake and at least somewhat with it. I was never pushed to try them, I asked. I think a lot of people with chronic illness, especially fibro, are made worse, not better by the meds they are on. The advantages have to clearly outweigh the disadvantages for me to pop that pill. Luckily, the meds for my IC cause no side effects. Just wish they could do more than take the edge off the pain.

    • I am always optimistic about my lifestyle changes and holistic methods since they are the only things that have actually helped. Maybe fibro is only for adventurous souls, willing to try new things like meds or changes. I wish it didn’t take me so far from myself though.

  4. I have become worse since my medication got changed last year. I was on Diclofenac which while not taking away all the pain did at least allow me to function most days. But then I had a scare with some abnormal liver function tests and my doctor decided to put me on Ibruprofen instead. Now I am pretty much house bound, and quite often bed bound due to the increse in symptoms. But I am worried about doing damage to myself if I try to go back on stronger meds. Doctors are really no help at all. I was told to do stretching! Like I’m not already doing that! Both me and my partner miss me too.

    • Tora- oh my goodness, I have had some crazy dr’s too! “Stretch” “Get out more” etc. One insisted that fibro was due to the body’s acidity, but then couldn’t understand how my body was in normal range and still in pain. And the meds are a double edged sword, with the side effects and the possible long term damage. There has to be a better way… Hang in there

  5. have you had any luck with chiropractic treatment? i know it doesn’t help some people, and it can be expensive, but i use far fewer pain meds just after a visit, and it seems to keep the fog off, so if you haven’t tried it, when some spoons are back, it might be worth it. apologies if you’ve posted about it, i’ve not read your whole blog (yet! 😉 )

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