Letter to My Non-Fibro Friends and Family

Discussion in 'Fibromyalgia Main Forum' started by blarach, Jun 16, 2012.

  1. blarach

    blarach New Member

    I came across this on a blog about some guy with fibro and it is ok to share and modify to suit your symptoms and needs.

    Letter to My Non-Fibro Friends and Family
    There are a lot of things about what I go through with fibromyalgia that I wish you could understand, so before you make comments or judge me, please read all of this and think on what I have said.

    Please understand that having fibromyalgia doesn't mean I'm no longer me, I'm still the same person I have always been. It means I have to spend most of my life in a state of constant exhaustion, brain fog, and considerable pain, because my nervous system is malfunctioning in the way it processes pain. Like all of you I do have my good and bad days, the really bad days are called flares. I know I'm not much fun to be around at times, but I am me, stuck inside a body that seems more like a torture chamber. I still worry about you, care about you and love you even if it is hard to show, as little things like a hug can be very painful. At times I may change, cancel plans we made or just bow out, please do not take it personally. It is not you, it is my body that will not allow me to follow thru as the fatigue is much more than just being tired. I literally have to push myself just to get up. Please do not be angry with me or try to lay a guilt trip on me. I can not understand why my body will not behave like it used to so I don't expect you to do so, but please try.

    When I'm cheerful or happy, or when I joke around and laugh that is all it is. It does not mean I'm not hurting or fatigued, nor does it mean I'm getting better. All it means is that for this moment in time I am coping and trying to be some what normal and to ignore the overworked feeling and pain in my muscles.

    Please understand that because I was able to do something today, it does not mean I will be able to do it tomorrow, for tomorrow I probably will feel devoid of energy. And yes I know that you get frustrated with me and feel I have multiple personalities, but understand, constant pain and various medications have a lot of impact on that. (Besides I might get lonely without those extra personalities. lol) Unfortunately the pain is so bad at times that I get so angry I can't seem to control my anger. I hate being like this and I understand that at times you feel that you can't even talk to me. I'm trying to deal with this so please be patient.

    When I am able to do things, often I must pay for it later, usually when your not around or are asleep. I never know how I'm going to feel tomorrow or from one minute to the next for that matter. That is probably the most frustrating thing about fibro for me, I have a hard time making plans and I used to love making plans. The other thing that is so hard is that no one can see the pain, fog or exhaustion. Hell sometimes I feel like a damn hypochondriac because so many things hurt and seem out of kilter. When you have no patience or don't attempt to be understanding it only serves to make it worse.

    Please try to understand that the pain of fibro is variable, that today I may be able to do most things, while tomorrow I may have trouble walking to the bathroom and need a cane to help me get around. In fact I can show you several dents in walls of the house where I have fallen against them. I desperately need you to understand that going out and doing stuff often does not make me feel better and can make the pain much worse and this has frustrated me to the point of tears. Sometimes I am almost afraid to do things like go to the store because later I end up in more physical pain than you could imagine. I know I occasionally suggest we go but that is because I see a need in you, not because I'm set to go. You have no idea how much of a struggle this is for me but I'm learning to hide it the best I can.

    I have been told at times that I seem depressed and that this is probably the cause of my problems. Sorry but that is secondary depression, not the cause of my pain, but because of the pain. Hey, wouldn't you be depressed or down in the dumps so to speak if you were in pain constantly for days on end with no relief in site? Depression did not cause my fibro but it exists in me because of the fibro, after all how would you feel watching others do things you used to do but are no longer able to? Fibromyalgia is so unpredictable that I get frustrated by my physical limitations and inability to make plans, so you're damned right I'm depressed.

    As for a good nights sleep, well what's that? I generally get 2 - 3 hours, five if I'm real lucky. There are times when I lay down and my legs feel like they are still walking. This is known as RLS or Restless Leg Syndrome. I'd like to see you get sleep while part of your body keeps marching on. With out sleep there is no recovery and without recovery you get even more pain. For me to sleep 6 solid hours would be a luxury.

    I wish I was normal, I miss my life, I miss just being able to work more than most people will ever know. If you think being out of work and drawing a check would be so wonderful, it is not. There is only so much you can do before life becomes, for lack of a better word uninteresting. And the check I draw is less than a third of what I was earning when I could work. I am not lazy, I want to work, but every day stress makes my symptoms worse and can incapacitate me completely. I try, hard at times, to be as normal as possible and know I often don't succeed. But I'll admit it I want my life back!!! I want to work and play like a normal person.

    The pain I get from fibromyalgia at times is real bad, so if I say I need to sit down, well it means I need to do it NOW! If I say I need to take a pill then that means right away and it can not be put off for an hour or so because then it is too late to do much good and I will have to bear the extra pain. I can not work this pain out because it migrates. Today the pain is in my left hip and is shooting down to my foot, tomorrow it may be in my shoulder or right arm. A doctor once said that if he had to deal with the pain I was in he could not function.

    The pain of fibromyalgia is a chronic pain. Chronic pain is hard for someone who doesn't have it to understand how debilitating it can be and the toll it takes on you both physically and mentally. It frustrates, exasperates and exhausts you all at the same time leaving you at your wits end. I am doing my best to cope with this and live my life and I know that you can never fully understand my situation unless you "Walk a mile in my shoes" (I love that old Joe South song) which is something I would not wish on most of you. To me fibromyalgia should be out lawed as cruel and unusual punishment. Believe me when I say, if any of you had to live one hour in my body during an average day, let alone a bad one, you would beg for mercy, let alone live like this every day with no end in sight.

    Besides the pain and fatigue I also suffer from "Fibro Fog" which means there are times when my short term memory is affected. I have gone from the kitchen table to the counter and not remembered why or gone to the store and had to call home and ask why I went to the store to begin with. That is so embarrassing. I have forgotten peoples names which is even more embarrassing. And no, I don't have "selecthiemers", on some days I just have little or no short term memory.

    I generally know when the weather is going to change, at times my skin feels sunburned, certain clothing makes my skin feel raw and sore and I have to keep changing clothes until I find some thing that doesn't hurt. Everyday things like light, sounds even some smells cause me pain. When people argue in front of me it is physically painful, so save your fussing for home or take it outside. Cold weather creates a stabbing pain and lying down under a cover feels like bugs are crawling all over you. There is no cure for this, I am just having to learn to cope with the allodynia pain.

    What I am doing with this letter? I guess I'm asking you to try and be understanding of my situation and to help me keep some kind of normalcy in my life. I know that it is a lot to ask of you, understanding something you can not see or feel yourself, but you are my lifeline to the life I used to have and want to have again. Realise also, there are times that I need your help, but for the most part I am too proud to ask so I muddle through. I allow pride to get in my way. Your offer of help would be like manna from heaven to me. I also need to learn to put aside that pride and ask for help when it is needed. Thank you for taking the time to read this letter, hopefully you will have a better understanding of how I feel.

  2. Thank you so much for writing that letter to non fibro persons, I have chronic fibro and those are my everyday emotions. Im a 45yr old female who was working as a nurse, the fibro and 2 major back surgeries 5yrs ago, took my life away, its so depressing at times i just cant hold back the tears, but im trying to come to terms with the fact i will be like this for the rest of my life, just wish i could clean my whole house in one day like i could before, lol, hubby has to clean the tub and do the mopping now, its a major challenge for me just to go get a few groceries, when i get back and things are put away, i have to lay down for several hours, have alot more issues lol but wanted to say thank you for the letter its going in my favorites and will be sending it out,
    Take care
  3. rosemarie

    rosemarie Member

    I have noticed that when I am flaring I get so emtional, reading a book with some thing tender in it romantic or sweet and I am crying, watching a TV show and someo one is nice , kind or has a baby andI get all teary eyed.There does not to have a reason for me to cry, I just feel like it every now and then and some times it is just out of the blue. What is wrong with me? Am I beign abby normal? I don't know , I know that i hate it crying while watching Dr.Quinn or reading a book and the guy is kind and sweet to the girl and I have tears running down my face. That is not normal for me. but it is now.

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