My Letter to Normals

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by searchin4me, Aug 29, 2003.

  1. searchin4me

    searchin4me New Member

    Thought I'd go ahead and post this here. There have been some requests for one lately, and this is mine. Consider this my permission to copy, cut, paste, etc. and make it your own. It's kind of long, but then nothing about this illness is easy. I hope this helps someone. Thanks.....Tammie


    MY LIFE WITH FIBROMYALGIA
    A LETTER TO MY FAMILY AND FRIENDS
    February 2002

    As many of you know, I was diagnosed with Fibromyalgia Syndrome in April of 1998. I believe, however, that this diagnosis is an answer to many of the unexplained health issues that I have had in the past, dating all the way back to childhood. There are many things about my illness that I want you all to know and understand in relation to how it effects me and my everyday life. Some of what is to follow is information that I have obtained from different research that I have done on Fibromyalgia. Some of it is my own words about how I feel. There are several different “letters to normals” on the internet addressing some of these issues for family and friends of people with Fibromyalgia. I have reviewed many of these, with the intention of highlighting the main areas and giving copies to you. However, after much consideration, I decided to write my own, using those letters as a tool for guidance. Some of the main ideas are the same as those that you might see online. Some of the points that I make may be very similar or even the same as other letters that you might see. If that is the case, please understand that I am using them only because it is exactly how I feel. Fibromyalgia affects different people in different ways, but there are some things that are invariably the same.


    Things that I need you to understand about Fibromyalgia (from member.aol.com):

    Fibromyalgia Syndrome is a complex, chronic condition which causes widespread pain and profound fatigue, as well as a variety of other symptoms. Its effects are felt primarily in the muscles, tendons, and ligaments throughout the body. Unlike Arthritis, however, no inflammation accompanies Fibromyalgia, and the joints of the body are not directly affected.

    The pain of Fibromyalgia is usually described as aching or burning and is unpredictable in nature. Its severity varies from day to day, and different parts of the body tend to be affected at different times. In some people, Fibromyalgia can be very severe and disabling; while in others it may cause only a minor discomfort.

    Likewise, the fatigue which often accompanies Fibromyalgia syndrome ranges from a mild, tired feeling to all-consuming exhaustion. According to experts, Fibromyalgia affects between 7 and 10 million Americans and is also prevalent worldwide.



    Things that I need you to understand about me before you judge me:

     Please understand that although I am sick, I am still me. I still spend a considerable amount of time worrying about the same things that you worry about. However, I spend a great deal of the time in pain and exhaustion. So if sometimes it seems as though I’m not listening or don’t care about what you are saying, just please know that I am and I do. That doesn’t mean that I don’t want you around, or that I don’t enjoy your company. I try to approach life with as much enthusiasm as possible, but sometimes there is just nothing left for me to give.

     Please understand the difference between “happy and healthy”. Think back to the last time that you had the flu. It probably lasted a day or two……or maybe even longer. Now consider that I’ve been sick for years. I have flu-like symptoms almost every day of my life. I’m not asking for your sympathy. This illness is a part of me. I accept that. Therefore, I have had to make a conscience decision NOT to be miserable all of the time. I have searched within myself to find ways to be happy. Just because I laugh or joke around or have a good time, doesn’t mean that I feel good. It just means that I refuse to be miserable all the time.

     Please understand that because I look okay, doesn’t mean that I feel okay. Fibromyalgia is often referred to as an invisible illness for that very reason. Most of the time, when the person feels like shit, they look like shit, too! With Fibromyalgia there is very little external physical evidence that a person isn’t feeling well. So, if you see me and I am looking better than I did the last time you saw me, or even better than the day before, this does not necessarily mean that I am not in a lot of pain or extremely exhausted. Because I look okay, doesn’t mean that I can do all the things that you may think I should be able to do. I have to decide that for myself.

     Please understand that being able to stand for ten minutes, doesn’t mean that I can stand up for twenty or longer. And in the same respect, understand that just because I stood for an hour yesterday, doesn’t mean that I will be able to do it today. With some illnesses, you are either paralyzed or you can walk. With Fibromyalgia, it gets more confusing.
    *** Please repeat the above for sitting, walking, thinking, working, being sociable, and so on…..
    it applies to everything. That’s the way Fibromyalgia is.***

     Please understand that Fibromyalgia is variable. Again, as I stated before, just because I was able to do something physically exerting yesterday, doesn’t mean that I will be able to do it again tomorrow. Please don’t attack me by saying, “You did it before.” If you need me to do something and I say that I can’t, accept that I can’t and trust that I am doing what is best for me.


     Please understand that “getting out and doing things” or “get up and get moving” does not make me feel better, and can often make me seriously worse. Telling me that I need to work out, or that I need to lose weight, or need to be more active frustrates me to tears. I am very well aware that I am overweight and out of shape. It is a concern that I have discussed with my doctor on numerous occasions, and I am doing what I can. I take many medications for my condition that make it difficult to lose weight. And as far as the physical activity, don’t you think that if I could do it that I would. I would love to be able to go outside and play football or baseball with my children on a regular basis, or join a bowling league. I just can’t. My muscles do not repair themselves the way that yours do, and for that reason, these things can send me into a “flare-up” that takes days, weeks, or even months to recover from.

     Please understand that if I tell you that I need to sit down, lie down, take my medication, or stay in bed, that that is exactly what I need to do. I have been dealing with this illness for several years now. I have come to know the different signs that my body gives me that tell me I need to rest. During stressful times, my symptoms are far worse than other times. If I allow myself to play the energizer bunny during these and other times, I will definitely pay for it later on. There are obviously some situations in which I have no choice, but if the option is there, and I choose to rest vs. whatever else you may think I need to be doing, understand that, again, I am taking care of ME!

     Please understand what an important role sleep plays in stabilizing my pain, as well as many other symptoms. If I am not sleeping well, for whatever reason, I feel far worse than I do if I am getting good sleep. Even though there is a belief that once you have lost sleep you can not “catch up”, there is medical evidence that supports the idea that with Fibromyalgia you CAN in fact catch up on sleep. In fact, catching up on sleep is necessary in order to aid in the repair of the daily wear and tear on my body. Please don’t tell me that I’m lazy, or that I just need to tough it out. It just makes me feel worse than I already do. Once again, please just trust me when I say that I am listening to my body and doing what is best for me.

     Please understand how my medication works, and how important it is in my daily regimen. I take many different medications every day, and I also have some that I take on an as-needed basis. Without these medications, I can not function in every day life. Please don’t hound me about taking too many meds, or being an “addict”…….even just as a joke. It hurts my feelings. I hate being so dependant on medication to make my life even somewhat functional, and believe me, if I could stop taking any of them today, I would. Many of you know that I have tried that before, and it was a disaster. On this same note, please understand that due to my illness, I develop a tolerance to medications a lot faster than you do. Therefore every 4-6 months, it is necessary for me to make some changes in my medication. When this happens, with some medications it is necessary to get one medication out of my system before I begin taking a new one. During the times when I am completely off of my medications, I feel like I am on a rollercoaster ride, both emotionally and physically. I do not expect you to understand this. If you haven’t been through it yourself, there is no possible way that you can. I do, however ask that you be patient with me. It may take some time, but it will get better. I am continuously working with my doctor to make sure my meds are working the way they should be, and changing them when they aren’t. Your negative comments do not serve any purpose other than causing hurt.

     Please understand that Fibromyalgia is accompanied by many other underlying conditions. For me, these conditions include depression, anxiety disorder, irritable bowel syndrome, irritable bladder syndrome, acid reflux disease, chronic fatigue syndrome, migraine headaches, sleep apnea, and restless leg syndrome, among many others.

     Please don’t tell me that I am feeling sorry for myself or accuse me of using my illness as an excuse. I believe that all of us have our moments where we throw a little pity party for ourselves for one reason or another. And yes, I am human, and I’m sure there are times when I do that very thing, and I might add that I do it well!! However, I believe that for the most part, I handle my illness very well. For the most part, and most of the time, I honestly DON’T feel sorry for myself. As I said before, I have accepted that this is the hand that life has dealt me. I am okay with it. What I am not okay with is the inconsiderate comments that go along with being chronically ill. I often have to make choices in my day as to how I am going to spend that day. If there are several things going on, I may have to make choices as to which ones I participate in. This does not mean that I don’t want to take part in a certain activity or that I am making “excuses”. I do my best in making the right choices. Just because you do not agree with my choices doesn’t make them wrong, nor does it give you the right to judge me.

    In closing, I would like to reiterate that I am not looking for sympathy. My life could be a lot worse. I am blessed with five wonderful children, and family and friends that are second to none. There are many, many people less fortunate than I. My hope in writing this is to help you to understand why I do some of the things that I do, and don’t do some of the things that I don’t do. I don’t expect you to know what I am going through. There is no way that you can, unless you yourself have gone through it. What I AM asking for is your love, support and understanding. Isn’t that what friends and family are for?

    Love,

    Tammie
  2. Dara

    Dara New Member

    If they can't understand what you're going through after reading your letter, then nothing's ever going to get through to them. You described everything that most of us go through. Thank you for the pleasure of being able to read such a great letter.

    Dara
    TenaciousButTired likes this.
  3. Betsy2

    Betsy2 New Member

    Tammie,

    That is a great letter!! Hopefully, your friends and relatives can get a better perspective of what you and many of us are going through. There are days when I wish that if only my people could have this DD for one day they would know how I feel most of the time.

    Betsy2
  4. Suzan

    Suzan New Member

    I hope that the people that read it are more understanding of you and your daily life with this darn syndrome!
  5. Solstice

    Solstice New Member

    I think it is excellent. It took alot of courage to write it and more to give it out. I think we can all relate to what you shared in the letter. I hope you get the support you deserve.

    Solstice
    TenaciousButTired likes this.
  6. wildzootv

    wildzootv New Member

    Good job!!! I think it was very well written and was detailed. They can't not understand after this. If they don't then maybe they just don't want to understand. Best wishes.
  7. sunshine8957

    sunshine8957 New Member

    I can't thank you enough Tammie for sharing your letter with all of us. I am dealing we a mean-mouthed husband who manages to make me cry and feel belittled. (I haven't been able to work since early Nov. 2002 - I was Dx'd in May, 99, but symptoms started in 1/99. I'm still waiting on a decision on my Appeal to the Hearing Judge. (Have attorney now cause it's getting to be to much on me.)

    I hope you have a wonderful response from you letter and I wish you a wonderful holiday!

    Soft Hugs,
    Eve


    [This Message was Edited on 08/30/2003]
  8. tobyj

    tobyj New Member

    Thank you!!!!!!!!!!!!!!!!!! That said everything that is in "our handbook" of living with this disease. So many people do not understand, my family for one, and they and my x-friends, have no idea what my life is about or do they care to. They will not even read about it. Thank you for putting it in a nutshell.
    Hugs, and God bless,
    Gerry
  9. truthseeker

    truthseeker New Member

    for all of us who need help sharing our new lifestyle with others.

    Blessings,

    truth
  10. Chrissy3

    Chrissy3 New Member

    Thanks for sharing your letter - it sums things up perfectly. Brilliant!

    Chrissy
  11. LITEFLAMES

    LITEFLAMES New Member

    Hi Tammy,
    awsome Letter ,
    I did copy & past it & sent it to some friends& Family ,
    God Bless us all
    CindyG.
  12. kirschbaum26

    kirschbaum26 New Member

    Tammie:

    Thanks so much for sharing your letter. I will use some of it to explain to family and friends. You covered some issues that I had not thought of...especially the part about being able to do something one day and not the next and the way that you look...which is usually not ill.

    Thanks again for sharing.
    Ingrid
  13. Delou

    Delou New Member

    HiTammie,
    thank you so much for your version of the letter to normals. I am that impressed that I have copied it out to take to my next meeting. Im in a self help group for fibro. We meet each month. The rest of the group will love it. THANK YOU
    Soft hugs Delou
  14. PVLady

    PVLady New Member

    Thanks so much, reading this would have helped me so much before I came here.

    I kept my illness a secret and made alot of good excuses. I was also very isolated.

    It is good to be here with others who understand.
    [This Message was Edited on 02/09/2004]
  15. kmj47

    kmj47 New Member


    Tammie,

    Thank you for sharing your letter with us. No one understands better than we do how you feel, and how much courage it took to write that letter.

    Good for you.

    Love
    kmj
    TenaciousButTired likes this.
  16. imgreat

    imgreat New Member

    Thanks Tammie for saying it so well!!
    Debbie K.
  17. jackiec

    jackiec New Member

    I borrowed your letter. Hoping it will help my daughter to understand some of the issues I deal with. Bless you for sharing.

    JackieC
  18. jeanann

    jeanann New Member

    in tears...this is exactly how i feel...

    Thank you
  19. Mo12

    Mo12 New Member

    Its very brave of you to write that letter. I'm sure anyone here can relate to your frustration.

    This may sound negative, but its not meant to be. In the last few years of this (whatever it is), I've learned to accept that nobody else will ever fully empathise with what you are going through. They can try to be understanding, but because they don't know how it feels, and especially because you often look ok, they will, on occasion say something insensitive (eg.
  20. Mo12

    Mo12 New Member

    My messages keep getting cut off, hopefully this is all of it...

    Its very brave of you to write that letter. I'm sure anyone here can relate to your frustration.

    This may sound negative, but its not meant to be. In the last few years of this (whatever it is), I've learned to accept that nobody else will ever fully empathise with what you are going through. They can try to be understanding, but because they don't know how it feels, and especially because you often look ok, they will, on occasion say something insensitive (eg. just take a quick nap and you'll be ok).

    I'm really not sure about this- maybe in a week I'll take it all back, but I think this realisation that you are alone in this is positive. Others can be supprtive, but only you will know what you have suffered. You alone will find way through this (and everything else).

    Some understaning from others does make it easier, and I hope your letter does that.