Results 1 to 6 of 6

Thread: The Open Letter To Those Without CFS/Fibro …

  1. #1
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,918
    Blog Entries
    1
    Thanks
    1,396
    Thanked 1,617 Times in 1,107 Posts

    Default The Open Letter To Those Without CFS/Fibro …

    i have spoken about a letter to normal people.
    i have even copied it on whl.

    after doing some research, i found the origional letter, and its author.

    i wanted to share this with everyone.
    the origional letter can be found at
    http://notdoneliving.net/openletter/cfsfibro


    i also will paste the full letter below.

    The Open Letter To Those Without CFS/Fibro …

    By Ricky Buchanan on May 10, 2009
    Having CFS means many things change, and a lot of them are invisible. Unlike AIDS and Cancer, most people do not understand even a little about CFS and its effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …
    … 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 that 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. CFS 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. CFS 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 CFS 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 CFS, 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. He’s open to new suggestions and is a great guy, and he takes what I say seriously.
    Please understand that getting better from an illness like this can be very slow. People with CFS 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.

  2. The Following 17 Users Say Thank You to steve.b For This Useful Post:

    astrid40 (01-22-2013), blackeight (08-11-2012), BonusMom (04-04-2012), donnalynn (04-19-2013), DrinkofWtr (04-04-2012), ItsLupus2007 (02-11-2013), Jaynie (05-09-2013), magistramarla (04-04-2012), n.mac (04-04-2012), Nonna (04-05-2012), ritzbit2 (04-04-2012), running girl (04-04-2012), Samantha (09-10-2013), Saysusie (04-08-2012), SleepyInSeattle (01-22-2013), TerriTmj (02-04-2014), tgal (04-04-2012)

  3. #2
    Join Date
    May 2007
    Location
    Seaside, Ca.
    Posts
    3,871
    Thanks
    196
    Thanked 948 Times in 732 Posts

    Default

    This needs to be a sticky!

  4. #3
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,721
    Blog Entries
    9
    Thanks
    1,578
    Thanked 919 Times in 582 Posts

    Default

    This is outstanding and I am going to make it a sticky...I am taking suggestions on which forum to place it. Steve, your suggestion will be given the greatest weight as it is your post.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

  5. #4
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,918
    Blog Entries
    1
    Thanks
    1,396
    Thanked 1,617 Times in 1,107 Posts

    Default

    i would presume lupus symptoms.
    but i am happy for it to be anywhere.

  6. #5
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,741 Times in 1,211 Posts

    Default

    Quote Originally Posted by Saysusie View Post
    This is outstanding and I am going to make it a sticky...I am taking suggestions on which forum to place it. Steve, your suggestion will be given the greatest weight as it is your post.

    Peace and Blessings
    Namaste
    Saysusie
    I have thought since I read it that I wanted to talk about making it a sticky! Things around my home got a bit hectic and I forgot. So glad the decision was made to do so!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  7. #6
    Join Date
    Jan 2011
    Location
    london
    Posts
    7
    Thanks
    1
    Thanked 1 Time in 1 Post

    Default

    Hi there, I totally agree. I have CFS as well as Lupus and a mulitude of other ailments, some manifestations of Lupus, others not. I love what you have written. Well done for putting this up, Kind regards Astrid40xoxo

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •