The Letter to Normals

[kiddthekatt]

  I'm pretty sure that most of you have read this at some time, although I am not a member of Fibrohugs, this letter helped my family understand more about Fibro.

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Angel

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) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions 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/MPS 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 wont see my scars as you would a person who, say, had suffered a car accident. You wont 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

[Lahayle]

Hi, I enjoyed your post so much I had to read it 3 times.  You may not know it?  But you gave me courage to fight the fight.  You also are very strong, and caring.  I like that in people.  I, too have a comic side to me.  I also have another diagnosis in which people do not want to understand, and are afraid of me.  So, my friend.  Please invite me to be your friend.  I also write Christian Childrens' Stories. I write poetry.  I also need a friend to just be there when times are tough.  I live alone now, as my ex husband of 30 yrs. found himself a younger filly. Too bad she does not know he is abusive.  I get so lonely at times I just cry.
Please, add me to your friends list.
Thanks again, for this wonderful post!
Lahayle

[LexiFaye]

My family doesn't even try to understand, they just think it's ONE MORE aliment of Lexi...

But I get it a lot at work: What is that? Well my pre-med brain pulls out a very complicated explanation of what it is. I've started saying to my co-workers that ask, "It's one of those sneaky conditions, like a headache, you don't have the pain all the time, sometimes you know it's coming because you 'caused' it (much like a dehydration headache) other times you wake up and it hits you like a tons of bricks (like a headache you get when you're sick). Comparing it to something that everyone can have makes it more easily understandable.

[FurballsMom]

I have to thank you for posting this, too.  I had to send a copy to my friend who suffers from MCS.  I made sure to mention the copyright.  She said that she is thinking of printing it out and giving it to some people she knows in hopes that these people will get more insight and treat her with more understanding and patience.  More than likely she, too, is dealing with CFS/FMS, since MCS goes with the territory.  But, you know how hard it is to get doctors to actually work with us, so we can get the treatments we actually need and deserve.

[kiddthekatt]

You all are more than welcome. I really think that this letter helped me to explain better than I could have on my own. I was happy when I found it on the net, and sent an email to the author and thanked him for it. Time to pull the overs back over my head. Take care.

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Angel

[jlc5155]

Well said!  I printed it so I can take it to a mediation at my attorney's office.  My husband read it and his response was "This pretty well hits it on the head".  
Much thanks.  By the way......I've been in a stooper for some time now, what did Dr. Oz have to say this time?  

[helena333]

I've just read the most accurate thing that I could ever have wrote--only I didn't! Thanks for putting that on here. I hate to moan to my family, it's not their fault, after all, and will probably not even show them this, but the more I read on here, the better I feel mentally, I now know, when I have the thoughts, that no-one could possibly live with this endless pain, I have, lot's of others are living with it, and I feel less useless, and less alone. Thankyou.x.

[PlateletGal]

Right on !  I think that it would be a great way (and healthy) to spend our energy doing things like that. And you never know what may happen as a result... anything is possible in my book.

Hugs,

~PlateletGal

[scaredmom330]

Thanks for sharing this, I sent a copy to all my friends and family members..maybe they will start to understand a little more...think...lol

[kiddthekatt]

  That is definitely something to think about, And then maybe send it all to Dr. Oz and see if we hear back from him.

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Angel

[PlateletGal]

You know one of these days I think I'm going to share my story... pictures and all. I think that if we all did this in this forum on a set date, then it would send a pretty powerful message... and one that cannot be ignored.

[kiddthekatt]

  You are very welcome. I thought that you all would enjoy having it. The original author doesn't mind it being used as long as his copyright is used also. I keep a private journal, my husband hasn't even read it, and I add to it everyday. My good days and all the bad days. It helps. Take care.

gentle hugs
Angel

[RobinHood70]

Thank you for this.  I'd never seen it, but had often thought of writing about what my experience of CFS has been like.  This gives me some ideas for ways of presenting certain aspects, and for that, I'm very grateful, both to you and the original author.

[VaBreeze]

That's a wonderful idea.  I forwarded it to my loved ones as well.

Hope the same for your weekend Angel.  Take care.

[kiddthekatt]

I read this during the first month of my diagnosis, and sent it to all of my kids. I think this helped me to explain to them what was happening to me. I read it on days that I really need understanding ( like today ) and then I curl up and let the pain move on in.

I hope you all have as pain free weekend as you can.

gentle hugs
Angel

[VaBreeze]

I've seen this before and it is "always" a great read.  Thank you for sharing it with everyone.  Love it!

[kiddthekatt]

  I hear that. Sometimes I think they need it stuck in their faces to just " Get it!!"

[PlateletGal]

Thank you for sharing, Kitt !

I see it this way... these ignorant people cannot destroy my SPIRIT.

[SIMMY20]

hello kid ...wow .. what a fantastic letter it sums up every person on this site{personel point of view} i,m gonna copy it and send it to members of my family,,maybe they will have a better understanding if how i and others will feel , tc. be as pain free as poss