Welcome to my world

Discussion in 'Fibromyalgia Main Forum' started by suzieq72, Feb 19, 2006.

  1. suzieq72

    suzieq72 New Member

    I recently wrote a letter to my relatives and friends to try and help them understand what I go through. I thought I'd share. Keep in mind that I was in a terrible flare up that had been going on for over three weeks so I wasn't in the best of spirits when I wrote it. In fact, I guess I was just plain old angry.

    WELCOME TO MY WORLD
    BY SUSAN WALLACE


    TO: MY DEAR FAMILY, FRIENDS AND ACQUAINTANCES


    You’ve heard me say more often than not that “I’m having a bad day”. You’re probably thinking that I’m tired, stressed out, depressed or it’s all in my head. Truth is, I am all of those things and more. You probably think that it’s a phase and it will be better tomorrow. You may even think that it’s not as bad as I say. Do you think I’m a hypochondriac? Probably so.

    You may experience pain too. You may be recovering from surgery or may be suffering from an injury or illness. You will soon recover and you have hope for tomorrow to bring better days. You think your pain is worse than mine. You think you feel worse than me. That may be so for today. I may be having a “good day”. Truth is, you will get better. I don’t have that hope for tomorrow. I may be feeling “okay” at this very moment but I can’t count on tomorrow or even an hour from now.

    Today’s pain may be mild or I could be in unbearable pain and not letting you know. You see, I’m a little too proud sometimes to show you. Most of the time you can’t see that I’m suffering because you don’t want to see it. Sometimes I realize that it doesn’t matter to you or you just don’t understand how bad it is, so what’s the point in showing my pain? I often fake a smile to try and fool you into thinking that I’m okay today because it’s what you want to hear. I’ve become quite the actress. I can put on the act and fool most anyone into thinking that there’s nothing wrong. However, I can't put on the act that is Fibromyalgia. It’s the one role that I’ll never be able to learn because the role changes constantly. As soon as I would begin memorize the lines, the writer would have already changed the script three times.

    I can’t make plans to do something or go somewhere tomorrow. I never know what tomorrow brings. When you ask me to do something tomorrow or go somewhere next week, my usual response is “I don’t know if I can.” You act as though you didn’t hear me say that.

    Do you want to understand? Spend the next three days doing ALL of the following:

    1. Go to the gym and work out for 4 hours. You’ll be sore tomorrow and feel like you can’t move. Welcome to my world.

    2. Lay out in the sun with no sunscreen for 6 hours. That sunburn hurts, huh? How about I give you a big bear hug while that burn is there? Hurts doesn’t it? Welcome to my world.

    3. Do not sleep at all for the next 2 nights. Are you exhausted yet? You probably can’t even think straight? Does the fatigue make you dizzy and light headed? I bet light hurts your eyes now doesn’t it? You’re up anyway so why don’t you get up and prepare my taxes and clean my house? Welcome to my world.

    4. Do you have migraines or have you ever had a really bad headache? If not, let me shine a bright light in your eyes all day and continually hit you in the head.

    5. Now eat tons of cheese or other constipating things so that you can’t go to the bathroom for three days. You should be feeling mighty bloated and having pain in your lower intestines. Most of the pain should be in your left pelvic area. You would probably like to go to the bathroom now to get relief. But you can’t. It may be a few more days before you can. Next week, we’ll work on feeding you lots of laxatives so you can experience diarrhea. It’s one or the other. You get no choice of which. Welcome to my world.

    6. Drink a large bottle of alcohol. Are you stumbling around and having difficulty performing everyday tasks? Welcome to my world.

    7. Walk around for these three days with your head cocked way over to one side. Go ahead and try to straighten your neck out on the 4th day. What? You have a crick in your neck? Welcome to my world.

    8. Now you can take medication but you have to decide which symptom is the worst and that’s the only one you can treat. Will you take a muscle relaxer? Hmmm, that’s going to make you much more sleepy and you still have to get up and perform all your daily tasks. You can try pain medication but it’s only going to provide a 20% relief of the pain and it will make you even more constipated among other things. You can take a migraine medication but it’s not going to help the headache with only 1 or 2 doses and you’ll have to shell out over a hundred dollars to only get 6 six tablets. If decide to use the migraine medicine, you will have to take 1 or 2 pills every 2 hours until the migraine is gone. That’s right. You only have 6 pills so you may only get 3 doses. You can try a laxative for the constipation but just wait until you see what happens when you go to the bathroom. He he! You still won’t be able to go because the laxative is only going to help move what is still in the upper part of the lower intestines. You’ve got to figure out how to get rid of what’s in the lower part first and you’ll feel like you’re giving birth from your behind! Oh yeah, sitting in that position on the toilet for an hour is going to do wonders for your already painful muscles. Perhaps you’d just like to go to sleep to forget what’s going on in your body and treat your insomnia. Well, you can take a sleep medication but you can’t take it with pain medication or muscle relaxers. Did I mention that there are lots of other side effects from the medicines to add to your predicament?

    9. Now that you’ve done all of the above, get up and get ready for your day. You have to work, clean the house and take care of the kids and drive them back and forth to school or wherever else they need to be. That’s right. You’re drunk and you have to drive and you feel like you can’t even move. How easy was it to just get out of the bed? You’re eyes and head hurt so bad that you can’t stand light and will find it hard to work. You haven’t had any sleep either so suck it up and do what you have to do anyway. Don’t forget to make dinner and brush out the dog’s hair. Yes, just brushing the dog’s hair is going to do wonders for your neck pain and will cause back pain too. There’s heavy laundry baskets to carry and lots of bending to fold the clothes. Don’t forget that you have to go and buy groceries today because there’s nothing to eat in the house. You’ll need to buy at least $150 in groceries. Oh yeah, your body hurts terribly. Oh well. Make sure you let everyone hug you today. Oh that’s right. You have a bad sunburn but do it anyway. Be sure to listen to everyone when they ask you to do their favors and volunteer more time to their causes. They have several last minute tasks for you to perform today in addition to what you already had to do. Be sure to explain in detail how you are feeling as they are sure think you’re a nut. Pay careful attention to their health complaints because they are far worse than yours After all, you look like you feel just fine to me and to them. Don’t get stressed trying to do all of this because it will make symptoms worse. Welcome to my world.

    I failed to inflict upon you that Fibromyalgia patients usually have other diseases or disorders too including but not limited to: Chronic Fatigue Syndrome (similar to FMS but a few different symptoms), Mitral Valve Prolapse, Endometriosis, hormonal deficits, low blood pressure, anemia, increased nerve sensitivity, thyroid dysfunction, food allergies, candidiasis, deficiency of numerous minerals and vitamins, neuropathy, cognitive dysfunction, intestinal parasites and toxic chemical exposure.

    More than 25% of all FMS sufferers are permanently disabled and unable to work. The rest of us are still suffering through it and don’t know if we’ll have a job tomorrow.

    The following is an exerpt from one of the many articles I have on this dreaded disorder:

    "....There are no simple answers to conditions where causes lie in a mix of nutritional deficiencies, acquired toxicities, bowel dysbiosis, inadequate stress coping abilities, sensitivities and allergies, inappropriate or excessive medication, inadequate sugar control mechanisms, hormonal imbalances, poor posture and breathing dysfunction, current or past viral, parasitic, yeast or bacterial infections, impaired organs of digestion and elimination, emotional distress..... and more. There are certainly no magic bullets which can remedy a situation which may have taken many years to evolve...."

    "...In addition to these similar, indeed identical, factors, all these conditions are also frequently characterized by pain, fatigue, headaches, disturbed sleep patterns, anxiety, depression, numbness and tingling in the arms, hands or feet, bowel disturbances (diarrhea and/or constipation on their own or alternating) all frequently affected by the weather, by activity and by stress and there are usually many painful and sensitive areas to be found on palpation in all of them. Irritable bowel problems will usually also be associated with palpable painful areas in the abdomen..."

    Understanding and Treating Chronic Fatigue Syndrome and Fibromyalgia ; ImmuneSupport.com; 05-09-2003 By Leon Chaitow N.D., D.O., M.R.O.



    Now, let’s say that you have to lead the lifestyle that you lead for only these three days forever and only get a day or two every month without some of the symptoms. You don’t even have to have any of the other dreaded illnesses that often accompany FMS but you probably would. Welcome to my world.
    [This Message was Edited on 07/16/2007]
  2. claudiaw

    claudiaw New Member

    myself. I n fact, thank you for taking the time to write, what I don't have the energy to do for myself.
    I am making a copy of this for my relatives.
    Hope you don't mind.
    Thanks, take care.
    Claudia
  3. mlrarr

    mlrarr New Member

    AMEN!!!!
    I bet it made them think twice!!
    Melinda
  4. leubie

    leubie New Member

    Suzie--I UNDERSTAND I UNDERSTAND I UNDERSTAND!!!!!We all need to have a copy of this-well spoken and THANK-YOU Love to all Laura
  5. suzieq72

    suzieq72 New Member

    It was my honor to share with you as I assumed you all needed it for your friends and family as must as I did. Feel free to copy it and share it.
  6. Yucca13

    Yucca13 Member

    I hope it helps them to be compassionate and understanding! From my experience, not many people have an idea how disabling these problems can be. Thanks for posting.
  7. Summer3

    Summer3 New Member

    Suzy
    Thank you for your great letter. I cannot imagine the
    effort it took to sit and write it. If people want to
    understand this will surely help them.
    Sending lots of hugs((((((((((()))))))))))))
  8. cjr2003

    cjr2003 New Member

    perfectly! LOL CARLA
  9. rbecca47

    rbecca47 New Member

    the letter was wonderfull, to read, if you don't mind may i copy it. this would be a great one to send to my sister and niece. thankyou so much for sharing with us. love it
    becca
  10. suzieq72

    suzieq72 New Member

    I'm so glad that you all enjoyed it. There's been times that I was in tears after reading a post or an article because the write hit the nail on the head. It's nice when you realize that you're not alone in this battle that rages within our bodies. I hoped that this would do that for you all and perhaps help you explain to your loved ones what you're dealing with. Please feel free to share it with them.
  11. pemaw54

    pemaw54 New Member

    Isnt it amazing that we all have the same symptoms. And isnt it also amazing that we have each other? You are the only Suzie ive seen other than me as a child. They called me Suzie instead of Suzette for yrs. Thankyou for a wonderful discription. Publish it and everyone take a copy to your dr.

    Suzette
  12. hayley8564

    hayley8564 New Member

    this is excactly how this crap feels and it seems other people and family just don't get it and they do think we are hypochondriacs. Thanks that was fun to read.
  13. suzieq72

    suzieq72 New Member

    Thank you all so much for your responses. I'm glad you enjoyed my writing. I loved the idea of making a book of these types of writings. What a unique idea!
  14. mnweb6

    mnweb6 New Member

    I just wanted to BUMP this up so that it can be next to the thank you I just posted about...

    This meets people at every age and level!!!

    THANK YOU THANK YOU THANK YOU!!!!!!!!!!!!!!!!!!!