***WAYS TO EXPLAIN FM & CFS***

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Sharon, Apr 17, 2008.

  1. Sharon

    Sharon New Member

    Please post any letters or information you might come across that would help explain our illnesses to family and friends.

    Thanks!
    Sharon



  2. Sharon

    Sharon New Member


    MY NAME IS FIBROMYALGIA
    by Terri Been

    Hi....My Name is Fibromyalgia, and I'm an Invisible Chronic Illness. I
    am now velcroed to you for life. Others around you can't see me or hear me,
    but YOUR body feels me. I can attack you anywhere and anyhow I please.
    I can cause severe pain or, if I'm in a good mood, I can just cause you to
    ache all over.

    Remember when you and Energy ran around together and had fun?
    I took Energy from you, and gave you Exhaustion. Try to have fun now! I
    also took Good Sleep from you and, in its place, gave you Brain Fog. I can
    make you tremble internally or make you feel cold or hot when everyone else
    feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you
    have something planned, or are looking forward to a great day, I can take
    that away, too. You didn't ask for me. I chose you for various reasons:
    That virus you had that you never recovered from, or that car accident,
    or maybe it was the years of abuse and trauma. Well, anyway, I'm here to stay!

    I hear you're going to see a doctor who can get rid of me. I'm rolling
    on the floor, laughing. Just try. You will have to go to many, many doctors
    until you find one who can help you effectively. You will be put on pain pills,
    sleeping pills, energy pills, told you are suffering from anxiety or depression,
    given a TENs unit, get massaged, told if you just sleep and exercise properly I
    will go away, told to think positively, poked, prodded, and MOST OF ALL, not
    taken as seriously as you feel when you cry to the doctor how debilitating life
    is every day.

    Your family, friends and coworkers will all listen to you until they
    just get tired of hearing about how I make you feel, and that I'm a debilitating
    disease. Some of they will say things like "Oh, you are just having a bad day" or
    "Well, remember, you can't do the things you use to do 20 YEARS ago", not
    hearing that you said 20 DAYS ago. Some will just start talking behind your
    back, while you slowly feel that you are losing your dignity trying to make them
    understand, especially when you are in the middle of a conversation with a
    "Normal" person, and can't remember what you were going to say next!

    In closing, (I was hoping that I kept this part a secret), but I guess you already
    found out...the ONLY place you will get any support and understanding in dealing
    with me is with Other People With Fibromyalgia.
  3. Sharon

    Sharon New Member

    The Thief of Many Lives
    I am constantly on the prowl in search of new victims. I do not discriminate--health care workers, teachers, students, airline personnel, teens, and innocent children are my prey. If you are dynamic and have a lust for life, I will seek you out, and I will find you.

    Just when you are at the peak of your endeavors, climbing that career ladder or building your family and home, I will find you. There is nothing that you have in your life today that I am not capable of destroying tomorrow, your career, your education, your goals, your dreams, your family, and your life. I will have it all. I will strip you of your ability to function at any level above minimal, and from this day on you will refer to that minimal as a "good day."

    I have the ability to create an invalid out of you overnight, and I will. It will take a marathon effort for you just to get out of bed. At a cellular level your immune system will be in a constant war battling itself and unnamed viruses which will painfully be replicating in your brain. I promise you despair along with isolation and losses far beyond what you can ever imagine.

    Your mind will be in a constant "fogged" state, your expression will be unable to express, and your eyes will have a noticeable "glazed over/drugged out" look. You will find it most difficult to pay attention, concentrate, or even process the simplest of thoughts. Making change from a dollar may well be beyond your ability now. Your mouth may feel like it is full of marbles when you try to speak, as your tongue twists and nothing you try to say comes out right. Who would believe your level of education when you can't even string enough words together to make a complete sentence ... or one that makes any sense.

    I promise you, at any unsuspecting time, severe abdominal pain, nausea, vomiting and diarrhea along with a host of gastro-intestinal disorders. I will make you weak and lifeless as one could be without being confirmed dead. You will be house-bound or in bed for several years if not the rest of your life. As part of incapacitating you, I will make your heart race and your head pound; your throat will constantly be sore and your lymph glands will swell. That will all seem trivial after I inflame and spasm muscles throughout your body. Crushing a grape may take too much energy or be too painful now.

    On those nights that I allow you to sleep, you will awaken drenched with sweat and throbbing with pain. Perhaps I might even throw in a little seizure activity. On those nights that I do not allow sleep to occur, I will torture you with thoughts of death.... Not suicide, but death. Simply because you have not come to realize that this is your new life, and that you are not living.

    I have also done a few things that you may not be aware of yet. I placed some lesions on your brain (have you noticed how you have difficulty with balance and memory yet?) and have permanently turned your immune system on high. I have shorted out your nervous system so that you have intermittent numbness and tingling which might resemble an electrical current zapping you from time to time.

    Now I have you, I have taken over your body and mind. I have stolen your life but left you alive, not very functional, but by clinical definition you are still alive.

    Your family will not be able to give you all the constant care that you need on a daily basis. As for your friends, well, they're still on that ladder climbing up. I'll find them soon. By now you must have learned the definition of isolation, if for no other reason just so that you do not have to explain how you feel to others because they won't understand anyway. Isolation will save you all that energy.

    Your health insurance has already been or will shortly be discontinued as you lost your job from not being able to "keep up." Perhaps you got caught dozing off or called in sick one too many times. Now that you are no longer employable or insurable when you seek medical care, any doctor who figures me out will diagnose you and say that what you have is presently not curable.

    Now it is time for you to seek out medical care, nation-, if not world-wide. You will give more blood samples and have more examinations than you ever imagined existed. Then you can take the results to dozens of doctors in search of a diagnosis. One that is valid and accepted by the

    medical community and insurance companies. One that does not label you as depressed or say that "it is all in your head!!!" Most doctors will suggest a vacation, weight loss diet, new or increased love life, help with the children, or change of scenery as the "cure," mainly because you look like the picture of health. This is my mask of deception.

    You will pray for a positive word from current research. Research which you will soon learn is quite limited due to lack of funding and government support. You will learn new vocabulary which contains words like: T-Cells, Cytokines, Nuclear Antigens, Natural Killer Cells, Immunoglobulins, Cytomegalovirus, Seratonin, Cerebral lesions, and Immune Dysfunction are among a few. However the most important words that you will need to know and fight for the most are Social Security Disability and Medicare.

    At one point I may give you a false sense of recovery or remission. let me assure you, I'll be back, as you are my prisoner and that makes me your keeper. I have placed the lives of millions of people nationwide in limbo. I would consider this an epidemic, wouldn't you?

    Eventually I will bring the government, health care workers, and society to its knees in search of unraveling my complexities, which are crippling humanity. I leave it up to you, my victims, and your caretakers, to educate the public and let them know that I am very real and that you are very sick.

    I AM CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME

    © Kathleen Houghton, Director, CFIDS Network of Alaska, 1996
  4. Sharon

    Sharon New Member

    These are the things that I would like you to understand about me
    before you judge me...

    Please understand that being sick doesn't mean I'm not still a human
    being. I have to spend most of my day flat on my back in bed and I
    might not seem like great company, but I'm still me stuck inside this
    body. I still worry about school and work and my family and friends,
    and most of the time I'd still like to hear you talk about yours too.

    Please understand the difference between "happy" and "healthy". When
    you've got the flu you probably feel miserable with it, but I've been sick
    for years. I can't be miserable all the time, in fact I work hard at not
    being miserable. So if you're talking to me and I sound happy, it
    means I'm happy. That's all. I may be tired. I may be in pain. I may
    be sicker than ever. Please, don't say, "Oh, you're sounding
    better!" I am not sounding better, I am sounding happy. If you want
    to comment on that, you're welcome.

    Please understand that being able to stand up for five minutes,
    doesn't necessarily mean that I can stand up for ten minutes, or an
    hour. It's quite likely that doing that five minutes has exhausted my
    resources and I'll need to recover - imagine an athlete after a race.
    They couldn't repeat that feat right away either. With a lot of
    diseases you're either paralyzed or you can move. With this one it
    gets more confusing.

    Please repeat the above paragraph substituting, "sitting up",
    "walking", "thinking", "being sociable" and so on .... it applies to
    everything. That's what a fatigue-based illness does to you.

    Please understand that chronic illnesses are variable. It's quite
    possible (for me, it's common) that one day I am able to walk to the
    park and back, while the next day I'll have trouble getting to the
    kitchen. Please don't attack me when I'm ill by saying, "But you did
    it before!" If you want me to do something, ask if I can and I'll
    tell you. In a similar vein, I may need to cancel an invitation at the
    last minute, if this happens please don't take it personally.

    Please understand that "getting out and doing things" does not make me
    feel better, and can often make me seriously worse. Fibromyalgia may
    cause secondary depression (wouldn't you get depressed if you were
    stuck in bed for years on end!?) but it is not caused by depression.
    Telling me that I need some fresh air and exercise is not appreciated
    and not correct - if I could do it, I would.

    Please understand that if I say I have to sit down / lie down / take these
    pills now, that I do have to do it right now - it can't be put off or
    forgotten just because I'm doing something. Fibromyalgia does not
    forgive.

    Please understand that I can't spend all of my energy trying to get
    well. With a short-term illness like the flu, you can afford to put
    life on hold for a week or two while you get well. But part of having
    a chronic illness is coming to the realization that you have to spend
    some energy on having a life now. This doesn't mean I'm not trying to
    get better. It doesn't mean I've given up. It's just how life is when
    you're dealing with a chronic illness.

    If you want to suggest a cure to me, please don't. It's not because I
    don't appreciate the thought, and it's not because I don't want to get
    well. It's because I have had almost every single one of my friends
    suggest one at one point or another. At first I tried them all, but
    then I realized that I was using up so much energy trying things that
    I was making myself sicker, not better. If there was something that
    cured, or even helped, all people with Fibro then we'd know about it.
    This is not a drug-company conspiracy, there is worldwide networking
    (both on and off the Internet) between people with Fibro, if something
    worked we would KNOW.

    If after reading that, you still want to suggest a cure, then do it,
    preferably in writing, but don't expect me to rush out and try it. If
    I haven't had it suggested before, I'll take what you said and discuss
    it with my doctor.

    Please understand that getting better from an illness like this can be
    very slow. People with Fibro have so many systems in their bodies out
    of equilibrium, and functioning wrongly, that it may take a long time
    to sort everything out.

    I depend on you - people who are not sick - for many things.

    But most importantly, I need you to understand me.
  5. Sharon

    Sharon New Member

    *Even though the following is regarding Lupus, it is pertinent for FM, CFS, etc....
    ___________________________

    The Spoon Theory

    My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.


    As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

    I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

    As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

    At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

    I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

    Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

    She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

    I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

    I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

    I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

    We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

    When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

    I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

    Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

    After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

    Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

    AUTHOR: Christine Miserandino
  6. harmony21

    harmony21 New Member

    I have taken on the first example and am sending it to all I know for the awareness day, early tho

    kind regards

    Connie
  7. Swirly_Eyed

    Swirly_Eyed New Member

    If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. Because you didn't know how sick I was, you called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you.

    WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

    1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.

    2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.

    3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

    WHAT YOU SHOULD KNOW ABOUT ME

    1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

    2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

    3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

    4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

    5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

    6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

    7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

    8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

    9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

    10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

    11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

    12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

    I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.
  8. cmt49829

    cmt49829 New Member

    I dont jave any great writing to share, but thank you to those who did. I sent one of these to my family & friends. maybe one day I wont feel so guilty for feeling ill.
  9. JenJen2005

    JenJen2005 New Member

    My goodness Sharon, that is the most amazing explanation of Fibromyalgia!!!! I wish I could print it off and use as a hand out!

    Cheers to you!

    Jen
  10. ChristiS

    ChristiS New Member

    Thank you so much! I just emailed my husband the last one about fibro!!
  11. FMS_Bree_Lurch

    FMS_Bree_Lurch New Member

    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) and Chronic Fatigue Syndrome (CFS). 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, which 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 cry....
    Most of my "friends" are gone; even members of my own family have made me feel sad in there incomprehension. I have been accused of "playing games" for another's sympathy. I have been told it is all in my head. 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 back, neck or hands 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 could not find my wallet, I searched the house and the car and even went into work because there was a large amount of money in which needed to go to the bank. When I finally found it in the dirty clothes hamper I had had such a panic attack I continued to cry for another hour. 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 in my back 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? Or "think positive and you will feel better" or my all-time favorite "get tough, exercise to build strength" (no one seems to understand that will just harm me more)... The hurt I experience at those words scars me so deeply I feel 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 (edited by Bree Smith)



  12. nixon

    nixon New Member

    Sharon, I CAN'T tell you how much these hit home, Very Good writing!!! MANY THANKS!!!!!! Andrea
  13. Shalome1990

    Shalome1990 New Member

    All,
    Thanks. I am in tears reading these. I get so tired of hearing, What is wrong with you that it was nice to hear some of these letters. I actually made my husband read one of them.
    Thanks so much,
    Shalome
  14. jadgeb

    jadgeb New Member

    I want to thank Sharon for posting these letters. FINALLY, a way to explain to my family and friends how debilitating this illness really is. I've been in denial for years. My best friend who moved away has FM and she said, "I know you have a lot of the symptoms". It took almost three years before something "better" happened with my doctor. I'm scared and worried about my future, and I thank you for this message board.

    jadgeb
  15. lromine

    lromine New Member

    Cant stop crying.

    Thank you for sharing these letters with all of us. Have felt so alone. Just today began to try to reach out for support from others and have learned so much. Just knowing that someone somewhere does understand what its like helps so much.

    thank you. thank you.
  16. kazza2008

    kazza2008 New Member

    site and this thread. It is so refreshing to read the posts and to know that what they say is what I am feeling, I am normal but my ilness isn't. Thank you thank you thank you.
    [This Message was Edited on 05/07/2008]
  17. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I tell people that it is like I am in menopause, getting chemotherapy and have beginning of Alzheimer's at the same time.

    Tina
  18. GJ2007

    GJ2007 New Member

    I have FM & CFS. 4 Years ago my GP thought I had MS and sent me to Mayo Clinic to see a specialist in this field. I was told it was not MS. Just prior to that appt. I was so dizzy at work, passed out and on the floor out of it for sometime. Ambulance came and took me to the ER. Brain scan was done and I was told I have 2 lesions on right side. One 6cm and the other one 2 cm. Of course, I had no idea where these came from and the ER doc just told me he would send the report to my GP. Over the last 4 years, especially lately in the last 6 months I have become much worse with balance and have fallen several times. I have gotten so dizzy and passed out in my home where I am alone. Often I feel it coming on and crawl into bed before I fall. I am also a Type II diabetic, but sugar has not been the cause of dizziness or passing out. I have numbness in both hands throughout the day. Have pains lately that are severe deep like arthritis in my right foot and right knee to the point I can barely walk. My left side will have aches in knee and foot, but not as bad as the right. My vision gives me fits. I still work when able cause I need insurance and money to pay mortgage. Many days I cannot drive to work 35 miles one way. The other day got 1/2 way there and had to turn around and get in bed as I was so fuzzy. At work there are days I cannot read right and it drives me half crazy. I've been on Lyrica for about 7-8 months. Also on antidepressant for depression. Lyrica really helped with depression, but I don't feel it has done a thing for the FM pain wise. Strong pain meds and OTC pain relief drugs are not helping. I am 58 and feel so old some days and it is scary. What ever it is you may know about these brain lesions I would be interested in hearing about............My best to you......Thanks
  19. BSHLEEN

    BSHLEEN New Member

    HI I would like to keep in touch with somebody maybewith the same problems I tend to keep too my self even with my family they just do not getI Have beengoing on 20 .I HAQVE F1955IBO Asthma Arthrista ectBut IAm bored
    (edited to remove email address per rules)
  20. BSHLEEN

    BSHLEEN New Member

    how do you go on with Memopose fibo chronic faicineitague arithis and ect help any soloY husband bought us a hot tud which help out ousome ousome BEST GIFT EVER IT IS THE NEW SOFT TUB THERAPTUDS BRENDAL