Tuesday, May 5

Oh the Pain of it All

As I've mentioned before, I have fibromyalgia and peripheral polyneuropathy...and some days are good and some days are bad. Today has pretty much sucked. I am racked with pain. I am nauseated from the pain. The pain makes it difficult to even take a deep breath. I can't think well. And I feel guilty about. Ridiculous! The thing is, even when I'm having a good day there is this underlying guilt that I grapple with. It's weird.....But it turns out (thanks, Google!) that guilt (of all things!) often walks hand-in-hand with fibromyalgia & peripheral polyneuropathies~and I have both. So, I guess I have double the guilt! ;-)

So last night, while on Google, I found the following letter written by a fibro sufferer to "normals" (those who don't have this dibilitating disease). Thought I'd share it...

The Letter To Normals
Hello Family, Friends, and Anyone Wishing to Know Me,
Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated.
I want to talk to you about Fibromyalgia (FM). Many have never heard of this condition and for those who have, many are misinformed. And because of this judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FM has assaulted not only my life but those whom I love as well.
You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you won’t see my scars as you would a person who, say, had suffered a car accident. You won’t see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand....
Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die....
Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.
I feel like a child at times... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to “lose” the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the demon assaults me at every turn. Please try to understand….
Sleep, when I do get some, is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.
And just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. And there are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply: that I have let my family down again; and still they don’t understand….
On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I love my kids and grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.
So you see, you and I are not that much different. I too have hopes, dreams, goals… and this demon…. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now. Please understand….
Thank you for spending your time with me today. I hope we can work through this thing, you and I. Please understand that I am just like you… Please understand….
Copyright of www.fibrohugs.org Written by Ronald J. Waller

There is so much in this letter that I emphatize with. I am ever so grateful that I haven't been abandoned by the majority of my friends & family and that most are sympathetic without being overt pity. But I have noticed that I don't tend to make plans too far in advance because I never know how I might feel. I also shy away from meeting in larger group and/or noisy settings because I get confused easily & find it harder to make conversation in those settings. I hate not understanding or not making sense when I talk. I also shy away from meeting new people because I'm afraid of appearing stupid or clumsy or I don't want to bore people with my medical problems by monopolizing the conversation trying to explain my issues...and I don't want people to think I am reaching out for pity or sympathy....Hmmmmmmmmm....sensing that vague underlying guilt-thing going on in this paragraph.

Oh well~just cuz I know it's part of my condition(s) doesn't mean it's going to go away, right?

C'est la vie....(insert big French shrug here).

Bon Soir ~ M


  1. Hi, Just came a cross your blog as I was cruising blog land and was reading your post on FM..... First let me say I am sorry you suffer so much but thankyou for sharing an inside for those of us that do not have it so we can better understand,

    I was just curious if you have ever tried a reiki treatment? I perform reiki and I have a few clients that suffer from (FM) and they say it helps them....Reiki is not invasive and could perhaps help you relax and feel a bit better? Just a suggestion....if you wish to know more I would be happy to send some information.

    Blessings from Minnesota

  2. Always supporting you. Always loving you! You're an awesome friend, daughter, aunt, sister, co-worker, etc. etc. etc. Muah!

  3. My dear friend, Mary...
    Oh how I wish the burdens of your heart would just melt away! :) You are an amazing person to all whom you encounter! New or old friends! And if they can't see that (or see you for you) than F* 'em! (In true "Potty Mouth Erin" style!! :) <3 U Girl!!


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