Discussion in 'Fibromyalgia Main Forum' started by CarolK, Jan 2, 2006.

  1. CarolK

    CarolK New Member

    Hi Everyone... this was posted on this site a few years ago. I reposted it several times cause I thought it was such a good description of what we go through, and a very good "tool" to share with friends and family in hopes of helping them to understand what we go through. If you copy it or pass it along.. do include the copyright info. Blessings... CarolK


    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, moms, dads, 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 endeavours, 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, I will bring you despair along with pain, isolation and losses far beyond what you can ever imagine.

    Your mind will be in a constant "fogged" state, your facial _expression will be unable to express the constant pain you are in 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 for that matter.

    I promise, I will bring 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 actually being confirmed dead. You will be housebound 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 entire body. Crushing a grape between your fingers may take too much energy or be too painful now. And on top of this I will give you headaches that will last for days and even weeks at a time.

    On those nights that I allow you to sleep, you will awaken drenched with sweat or your whole body 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. You will need to re-create your being every day, as every day I will bring you new and unpredicted symptoms and suffering.

    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 I have permanently altered your immune system. 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. This is called neuropathy. Nope, it’s not curable either!

    Now I have you. I have taken over your body and mind. I have stolen your life but left you alive, but not very functional, and by clinical definition you are still alive. Your family will not be able to give you all the care that you need on a daily basis. As for your friends, well, they're still on that ladder climbing up. Rest assured, I am looking for them too. By now, chances are good that most of your family and friends have abandoned you, so you must have learned the definition of isolation. This newfound isolation will save you from having to explain how sick you really are to others, they won't understand anyway. Isolation will save you all that energy. Besides, I have convinced your friends and family that it is all in your head anyway.

    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 medical professional that 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 worldwide. However, most so called medical professionals will not even have the ability to recognize me when they see me, as they have not learned about me in medical school. So, chances are good that you will be misdiagnosed.

    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 as well as socially and medically acceptable. 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, exercise, new or increased love life, help with the children, or change of scenery as the "cure," mainly because you may look like the picture of health. This is my mask of deception! I love to make you look like a fool because you look so normal on the outside.

    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 a new vocabulary which contains words like: T-Cells, Cytokines, Nuclear Antigens, Natural Killer Cells, Immunoglobulins, Cytomegalovirus, Serotonin, Cerebral lesions, and Immune Dysfunction. However the most important words that you will need to know and fight for are ...Social Security Disability and Medicare.

    At one point I may give you a false sense of recovery or remission. I will let you feel "normal" for a day or two, or even for several weeks at a time. Let me assure you, I will 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 continue to do the same worldwide. I would consider this an epidemic, wouldn't you?

    Eventually I will bring the government, health care workers, and society to its knees trying to unravel 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. Unfortunately, I have been given a totally ridiculous name, which will make your job even more difficult. Until that name is changed, I am…FIBROMYALGIA AND CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME
    © Kathleen Houghton, Director, Alaska CFS-MCS Association 1996
    *Revised 2002.
    [This Message was Edited on 01/03/2006]
  2. schaken

    schaken New Member

    Carol K,
    I had never seen this article. Interesting.

    Still don't know what will work on me. I've had this DD for 24 years now. Only known what it is for last 2.

    Used to be an administrator. Can barely type now.

    Now I do home health care, because my ladies are so understanding.

  3. CarolK

    CarolK New Member

    That you enjoyed reading this. I sure think that this merrits reposting from time to time so that the newcomers can benefit from it. I believe the person who originally posted it was named "Willow". I have not seen her on this board for a very long time... I even tried to contact her through this board, however, there was no response.

    Anyway, hope others will find this and find that it somehow helps.

    Blessings.... CarolK
  4. mamabear2157

    mamabear2157 New Member

    Thank you so much for that wonderful post. I am new to this site, and have not seen that before. However, I did forward to my daughters, and my oldest daughter's husband, and my youngest daughter's boyfriend. Hopefully, although I will admit it will be slim, they will finally see what I go through. I also sent it to a friend of mine so she could print it out so I can give it to two of my doctors. Once again, thank you, and God bless!

    Mary Ellen
  5. CarolK

    CarolK New Member

    You are most welcome... I enjoy reposting this cause I know how much it helped me. I want to keep this thread going for a while since there are so many new people here.

    Blessings to all... Carol
  6. bioman85

    bioman85 New Member

    I dislike this article, because it does not promote a positive outlook for people with this disease. It is basically saying, "no matter what you do you'll still be sick", which I do not believe is true. If you try hard enough, like others, you will find a way to improve your health.

    I am still struggling, but I will keep on trying and researching new things until I die.

  7. Shortcircuit

    Shortcircuit New Member

    Just diagnosed. Have the 'electrical zaps'. Is this what I have to look forward to??
  8. CarolK

    CarolK New Member

    BUT LETS FACE IT... THERE IS NOTHING POSITIVE ABOUT FM OR CFS!! I do cling to hope, I do have faith that there is a cure and a better day ahead. But I do feel that this article (even though negative) can help the sufferers of this DD to better explain to their family and friends what is happening to them.

    Nothing about these diseases is positive!! This article is only meant to be a tool... a way to help explain to ohters what we have been experiencing.

    Unfortunately there are a lot of people on this board who do not have understanding friends and family! And no matter how hard we try to explain ourselves... well there just seems to be very little help out there to help us to communicate what is going on in our bodies. Anytime you can help a loved one to understand... well I think that is a good thing.

    Unfortunately there are people in this world that just refuse to listen no matter what you say... that is just the way it is and that is sad. But for those who will, I am glad that there are tools like this to help.

    It's good to hear different opinions. Thanks... CarolK

    ps.. My sincere hope is that no one here ever looses hope or gives up on themselves! It is extremely important to always have faith for a healthy future! I for one plan on never giving up... no matter how it looks or how I feel.. and my faith is strong!

    [This Message was Edited on 01/03/2006]
  9. bioman85

    bioman85 New Member

    While there are many negatives with this disease, there are a couple positives from it.

    1. I have learned who my true friends are. The people who understand and accept my challenges are the people that should be in my life, and the rest are weeded out.

    2. I have learned to appreciate so much about life, because of what we lost. When I get healthy, I will have a unique perspective when dealing with situations that is only available to someone who had it taken away.

    Does anyone else have any positive thoughts?
  10. CarolK

    CarolK New Member

    THANKS FOR YOUR KIND WORDS AND YOUR SUPPORT! I appreciate them very much! I just thought this article would help, not make them feel worse! I know that it brought new light to all I was going through.. made me realize that I was not going out of my mind feeling all the various aches and pains. Plus I really appreciated having an articulate way to express myself to those who love me and just don't understand what has happened to the "old me".

    I am sure you realize that I read your previous post about what to say to family members... that is why I directed your attention to this post. Glad it helped you!

    Keep looking up! Blessings to you... CarolK

  11. CarolK

    CarolK New Member

    I absolutely agree with your statement...

    "Living with this DD makes us stronger in so many ways. It gives us patience, empathy, & teaches us not to judge others by the way they look or act."

    WELL SAID!! And a few others have stated some of the positive changes that have come about as a result of having FM/CFS. I sure wish we could have learned those lessons another way...but they are valuable lessons none the less!

    Thanks for your input! Blessings to you as well, CarolK
  12. chopindog

    chopindog New Member

    I agree with your two positive points. I also feel that this disease has helped me see the full picture of things. It has brought me back to god, and has given me the inner faith that I had lost.

    Being a nurse, my college degree was science. Taking all of those classes really make you doubt that creation was possible. It all seemed like such a bunch of methological crap. Mans way of comforting themself when family and friends die, and when we die ourselves.

    So I had my doubts! I would think to myself, well I don't really believe that there is a god, but just in case there is, i will still go to heaven because I am a good person, and am giving, and take care of people.

    But then along with my doubts I still had a distinct spirituality deep inside my heart. I was a cancer nurse before I got sick. But my goal was to get skills built up in the hospital for three years and then go on to the career I planed. which was (and still is) To be a hospice nurse.

    As strange as this sounds, my favorite patients to take care of where the terminal ones. I have seen and felt many things while taking care of the dying.

    I have seen several people talking to loved ones who have passed long before them. I have been introduces to husbands that died years before. I have had a patient who had been in basically an end of life coma state. Wake up and when I walked in her room she had the most peacefull look on her face and she smiled and said to me, "Oh Joy, there was a man in here , he had on these white gloves and gown that positively glowed like nothing you have ever seenBut darn it he left when you came.I feel so good now, I have absolutely no pain, I havent felt so good, well ever." Let me say that this patient had stage four cancer, it was every where! It was so bad that Her abd had opened up and was secreting bile and infection and tumor from it. She had the smell of a dead animal because her organs had died. Her pain before was nearly uncontrolable, no matter how much pain meds we gave, she was still misrable.

    She was wide awake and coherant, I quickly called her family members and had them come to see her, They stayed the whole night with her talking and laughing untill she died the next day.

    This story is just one of many like this. I always believed that these people they were seeing were actually there. I could feel the spirit in the room. And when my patient would die i could feel there spirit stay, and finally leave when the loved ones had left the room for the last time. I believed strongly that god had given me a gift at taking care of the dying and there families. I really was very good at it.

    So the point of this long story is that. This illness has given me time to think about god, and the possibility that this life we are in is just a moment of the eternity of our lives on the other side. I relized that god had showed me so many special things, and how could I believe in people, and spirits coming to take there loved ones home, and at the same time not believe in god.

    So now I pray, and I believe he has answered me more than once. (not with his voice of course!) I am now living his teachings almost completely, the almost being smoking.

    Now if I had never became ill with this DD I am not sure I would have found my way back, and if there is a god I realize that this life is such a small piece in the scheme of things.

    I will continue to fight this illness, and I hope that I will get better someday. But no mater what I am a changed women because of this disease, and I believe I have changed for the better!

  13. bioman85

    bioman85 New Member

    I'm glad to hear that you've gained a positive experience from dealing with this. While I don't agree with your religious beliefs, what I believe does not matter :) As long as you can get anything positive from your situation, that's great.

    Like I said before, the two most positive things I can think of are that you learn who your true friends are, and it has given me an outlook on life I am almost positive I would never have been able to see. That's not to say that my friends have always been understanding, but they're willing to listen to explanations of what I think is going on to my body, and do so with an open mind.

    Good luck,
  14. rockgor

    rockgor Well-Known Member

    "If you try hard enough, like others, you will find a way to improve your health."

    Would be nice to believe this is not just wishful thinking.
  15. bioman85

    bioman85 New Member

    Whether or not you believe it, is up to you. I choose to believe it, and base my decisions on that. However, I also have to consider the possibility that this will be with me for my lifetime. That won't stop me from finding something that works, though.
  16. MsE

    MsE New Member

    Thank you for posting the article, CarolK. I'll send it to the next person who says, "But you don't look sick" or any of the other one-liners we have all learned to hate.
  17. EgyptStarr

    EgyptStarr New Member

    I, for one, deeply appreciate the post!!! It's SO dramatically accurate! I almost cried.

    I'M NOT GIVING UP EITHER!!! Just because some of us can appreciate the post for WHAT IT IS doesn't mean we're giving up! I have WAY too much to live for to EVER give up! I will be printing this out for those of my family members that I just don't have the strength and energy to explain what I have and how it affects me to. THAT alone makes it priceless in value, as many of my family members don't have a CLUE what my problems are. A few have asked, but as they hear the list of symptoms drag on and on, before you know it, they're just looking at you and nodding, but you can tell by their faces that they stopped HEARING you a LONG time ago. Others just don't want to hear it, because they have come to see you as just "whining".

    Yes, this post had a "negative vibe" to it, but let's all pull our heads out of the sand for a second and FACE SOME REALITY, SHALL WE????? THESE ILLNESSES HAVE NEGATIVE VIBES!!! What SHOULD the author have written? Some fairy-tales-and-roses bull that just proves to be a weak attempt to make us "feel better"? We've all tried the mind-over-matter tactics, and maybe for a few of you, that works. But for many of us, REALITY is where we live, and we're not too squeamish to face it that way.

  18. bioman85

    bioman85 New Member

    I agree that no one should pretend that we do not have serious problems due to these illnesses. However, I think there are enough reminders throughout our daily lives of this fact, and what little energy we do have should not be wasted on thinking about how sick we are.
  19. anakinkaid

    anakinkaid New Member

    I think the hardest part of all this for me is to realize that I am experiencing this illness, but CFS is not my heart and soul. There is my battle, if I must have one: I will experience this illness, if I must. It makes my day difficuly, painful, long and hard-before heaven it does. BUT it may not have my spirit. This article addresses very clear the aches , the pain, the nightmare and experience of this horrid illness, but NOT the courage it requires. I will rest, admit to others I am tired, sick, unable to do many things, BUT I will still Love life. That battle I WILL WIN!
    Ana in Seattle
  20. CarolK

    CarolK New Member


    Once again I am reminded of the HEART FELT COURAGE it takes to get through a single day with this DD!! Once again I am convinced that we are a group of some of the strongest people I've ever met!

    It takes courage to get up each day.... it takes courage to face family and friends in the midst of THEIR negative comments... it takes courage to press on through the pain and fatigue... it takes courage to face our critics at every turn!!

    As I have stated before... this article is only a TOOL... not an epatath... not the final word and certainly not the conclusion of our lives!

    To those who disagree, well you have every right to do so and know that you are respected! Please, by all means, don't be offended and please do not use this article if you feel it does not benefit you in any way!

    To all of you that this article has helped, I say a great big HOO-RAH!! Use it to inform, use it to enlighten, use it to help explain to those important people in your lives just what you are going through. And when you do show it to them, use that opportunity to tell them that you are NEVER GOING TO GIVE UP... YOU ARE NEVER GOING TO GIVE IN... YOU ARE NEVER GOING TO QUIT THE FIGHT FOR COMPLETE WHOLENESS.

    If it is one thing I have learned about the people on this board, it is that we are FIGHTERS! If we weren't we would have just rolled over and died a long time ago! The very fact that we come to this message board shows that we are looking daily for answers, daily holding on to hope and daily saying..."I AM NOT GIVING UP, I AM NEVER GOING TO QUIT!!"

    So please know that I appreciate all your comments, love and support! I really do!! And yes, I even appreciate the opinions of those who disagreed with me... that is what this board is all about... free speech!

    Blessings to you all...from one OPTOMISTIC AND HOPEFULL FIGHTER... CAROLK
    [This Message was Edited on 01/04/2006]

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