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Anne - Here is the LETTER TO NORMALS......
17 Replies
COCO - January 9

letter to normals i clicked to soon on my first response....

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.com Written by Ronald J. Waller

 

Tracy - January 8

I am sat crying, I have just read the letter and it really touched a chord. Why does it have to be so difficult? I am also a sufferer and nobody seems to understand, as you say nobody can see the pain.
Goodluck from me to you x

 

coco - January 8

hi anne: it made me cry too the first time i saw it... i copied and saved it in word processing
and i have used it on a few people. of course some things in there i changed...but i kept most of it....
i hope it helps..
i really do.
why does it have to be so hard well...heck if i know.
if we look good no one thinks we are sick..
coco

 

COCO - January 9

hi tracy.. sorry about that
i meant to say tracy not anne
coco

 

LadyHaelach - March 6

I remember when I was told I had fibro...I literally went to pieces..on top of my other medical issues..it was kinda like the last straw but it was good to know finally what was wrong with me.. and yes I bawled like a baby when I read this letter as well.. it was like FINALLY someone else who can truely understand what I am going thru... family and friends can say they do.. but unless you walk a mile in our shoes.. its just not the same thing..

not sure why it is so hard to deal with... I just try to take it day to day.. its the only way I can do it.. I am a really good listener if anyone needs a shoulder to cry on.. feel free to message me.. us fibromites gotta stuck together..lol

 

AmandaEffy - March 7

God that makes me cry. I miss being a normal teenager and nobody really understands. Everyone says they do but that never will. Today is one of those lonely/helpless days. I pray for everyone, hopefully next year when I'm 19 they'll find a cure. I love you all, gentle hugs!!!xxx

 

Duo - March 9

I am going to copy this and show my family and friends - I couldn't have written it better myself; I can so relate to everything in it. Apart from the obvious widespread pain I used to worry about my memory playing tricks on me until I was told it was fibro-fog. The other day I put a block of "blue flush" in the fridge and took a carton of yoghurt upstairs to the toilet !! what more can I say. Great to hear from you all.

 

ptalana - March 12

What a phenomenal letter, truly I identify with this completely! I had my hubby read this last night, think it just re-enforced his need to support and understand what we're going through. Thank you so much for this thought provoking letter.
Wishing everyone well, Patty

 

kvc33 - March 20

It would be cool if a letter or explanation to our family and friends would change how they see us but it won't because that would require that THEY change. Human beings recieve most of their information visually and that's what they go by. Most people don't have a medical background either so they haven't seen the condition in others, and just assume that we are the unique wierd one. Wouldn't it be great if children were taught about the most common diseases at school. Then they would know what to look out for and how to help someone when they become adults. If you have children please educate them in a gentle way. Have it be part of the education you do about puberty, sex and relationships. Everybody needs to know this stuff, it's never to early to start teaching about our bodies. You can be sure that your children will face illness or disability in their lifetime, either in themselves or someone they know.

 

Auvonto - October 8

what a wonderful letter!!! how true is this. i printed this out and will let anyone who i think may care read this. i will post it at my desk at work. with tears in my eyes thank you so very much for speaking out.

 

Nicky6310 - December 30

I have just been diagnosed with Fibro. I found it difficult to tell my work colleagues but they are supportive as are my family and friends. Ive read many letters and i feel quite lucky as i am not suffering as bad as some, however i do worry whats around the corner for me as my symptoms have been getting worse since August.

I am positive and try to look on the bright side by i have my low days. Over the past two years i have been struggling with sleep deprivation and depression. I finally felt after months of struggle i had got over the last hurdle last christmas then BAM!! this happens. I will continue to fight whatever life throws at me but couldnt do it without the support of my friends and family.

To them i will be ever grateful. I know its easy for me to say but hang on in there.

Here's to a wonderful 2011

Nicola

 

lfizgd12 - January 20

This letter has touched my soul. I have just been finally diagnosed with severe Fibromyalgia with osteoarthritis and degenerative disc disorder.After 25 years of seeing literally dozens of doctors and having 15 surgeries with my pain getting worse everytime. I have always tried to look my best and kept my sense of humor because that is a good way to keep yourself sane. But in doing so people around me even the doctors paid no attention to the dibilatating pain I was in.I finally have found the greatest Physical Therapist who deals with Fibromyalgia and sent me to the greatest Rheumatologist who also runs a Fibromyalgia clinic and is now getting me the help I've needed for so long. She told me that I was on such a downward spiral that by the time I turn 60 I would have been in a nursing home. I am now 56. The positive thing I look at now is to become actively involved with trying to educate the medical profession. Especially the orthopaedic doctors who only know how to do surgery. They need to know if the pain is not sufficiently explained in a scan then exploratory surgeries are not the answer. I did have 2-3 opnions before every surgery so it's not like I wasn't seeking different opnions. It is true about if you can't see what's causing the pain people think you are just overexagerating or worse yet it's all in your head. Thanks for reading this. It does help if the people you love in your life understand and that they know you are still the same person you always were but you just have somethings you need to take care of, which is yourself. I pray for all people who are suffering and my prayer is that life WILL get better if taken a day at a time. Thank You for listening to me rambling.

 

January - January 27

iflzgd12 - thank you for your post. I'm like you with FMS and DDD, getting older too... There is always the push to give cortisone shots (bad for your bones and tendons - and long term research shows they increase your pain) and then the recommendations for surgery - as if back surgery was nothing. I have, so far, managed to resist. I've read horrible research about it, and keep meeting people who have had back surgery and have just gotten more pain or ended up paralyzed. Thank you for reminding me -- I haven't seen many people come out of back surgery well.

Glad you have found something that is helping with your pain!

 

libra13 - February 3

this was a very touching letter and explained lot of what I am feeling . I am new to Fibro.

 

LadyNae - February 25

Wow this is amazing! I attempted a letter to friends and family to describe what I go through but it is no where as nicely done as this one. Thank you for sharing.

 

KateBeth - May 28

I began my journey through Fibro around 12 years old. It's incredibly isolating. Thank you for this letter. I cried.. hard. But am so refreshed to see the proof that it's NOT just me. It's others. Walking this thing out.

 

kcyran - August 5

I cried so hard when I read this! I wish everyone in my family and work would read and understand what I've been going through. Thank you for posting.

 

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