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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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new article "Top Ten Things Not to Say to Someone with Chronic Fatigue Syndrome"

Discussion in 'Lifestyle Management' started by Jody, Oct 29, 2009.

  1. Jody

    Jody Senior Member

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  2. Dreambirdie

    Dreambirdie work in progress

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    "We are more than tired. This goes way beyond fatigue. Beyond exhaustion. Somewhere past the town limits of depletion. Just short, it seems, of annihilation."

    I love this. YES YES just short of annihilation. :):p:p:):p:p:);)

    Last night I puked my guts out from some unknown cause, and today my neighbor made a comment that he was feeling "real run down too." He was doing some heavy duty yard work. It made me laugh out loud, cuz I had just read your article. He, of course, missed the humor. :rolleyes:

    Now I'm going back to bed. So glad for your WORDS! KISSES to YOU, Jody, mon ami!
  3. kolowesi

    kolowesi Senior Member

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    Jody Ten things not to say

    Great article. I recognize all of these. I had tried to forget, but you have given me the strength to acknowledge these painful memories. Can't do anything about those who make these remarks, but I can learn to not let it hurt me.

    Might as well laugh, like Dreambirdie did. I want to be more like you two!

    Kelly
  4. shrewsbury

    shrewsbury member

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    Top Ten Things Not to Say to Someone with Chronic Fatigue Syndrome

    Love it Jody!

    When I saw the title, my mind was quickly polling past experience to decide what they were and what would be the most common. So of course was pleased when I saw "I get tired too." - hey wouldn't it be great to get audio emoticons? could have posted argh and groan after that

    Also was spot on with #2, aka "(but) you look good" (said in an accusatory tone) or "(but)you sound good"

    Do love your 400 word (is it?) polished gems - amazing how many facets you include!

    :):D:) islandfinn (we need a heart emoticon too! XOXOXOXO)
  5. Dreambirdie

    Dreambirdie work in progress

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    And I want to be more like you Kelly, gentle sweet creature that you are!

    And more wise and goofy, like miz Jody. :cool::cool::p
  6. Snez

    Snez Senior Member

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    Jody,

    Another spot on article.

    I had a friend tell me recently that she thought she had "a touch of chronic fatigue too". :confused: When I tried to explain the difference between CFS and CF she said she felt tired after exercise, too. I just couldn't win!

    I'm printing it for future educational purposes when "I'm too tired" to explain why "I'm tired".:D

    Thanks for providing a steady stream of validation for us.:)

    Snez
  7. Andrew

    Andrew Senior Member

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    Excellent article.
  8. Victoria

    Victoria Senior Member

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    Brilliant article, Jody,:)

    You have a real gift for making a point in a concise & comprehensible way.

    Now we need to print 100 million flyers with your "Top Ten" on them & do an air drop around the world :D

    And they need to have adhesive on the back, so they stick to everyone (like super glue).

    And my fantasy is......... that the super glue only wears off (after the message has been acknowledged and understood).

    I'm actually not trying to be funny here. I really, just once, would like the people I interact with every day, to listen & understand what the reality is. I would like someone to say to me, you do an amazing job in this office, expecially considering your pain/fatigue condition - it must be difficult & challenging.

    This week being a case in point. I have a 4 day weekend this weekend. I've been asked what am I doing? I said I'm doing food shopping, pottering around the garden, and "resting".

    The return expression on the other person's face is priceless & beyond description!

    The blank look suggests I'm speaking in another language.

    And when I politely ask what they're planning for the long weekend, they reel off lengthy descriptions of what the rest of the population are doing, as though I am the most boring person in the world & they're not really sure why they waste their time having this one sided conversation.

    (Having said this, most people I encounter in my work day just don't bother asking at all!).

    This sounds as though I work with an odd bunch. But this is not true. They are actually very, very nice people & great colleagues to have.

    I just wish we had something in common. :rolleyes:

    Victoria
  9. Jody

    Jody Senior Member

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    So true, Vicki

    Sad, but true.

    Kelly,

    Thanks for your comment over on empowher. :)

    dreambirdie, islandfinn, Snez and Andrew,

    Thanks for your encouragement. :)
  10. Snez

    Snez Senior Member

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    Oh Victoria, I love:) your flyer idea- I have an image of millions of people with paper stuck to their faces, perhaps even eating their(there) words and facing up to their blindness.:D
  11. Nielk

    Nielk

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    ten things

    Jodie,
    You have such a gift/talent to put into words
    exactly what I am feeling.

    I have gotten these comments time and time again.
    I am getting used to them. ( kind of)

    But when it comes from family or people who know me well,
    it really hurts.

    I guess you can never truly understand someone's pain
    until you walked in their shoes.

    Thanks for your article,

    Nielk
  12. Jody

    Jody Senior Member

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    Thanks, Neilk. :)
  13. Victoria

    Victoria Senior Member

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    Thanks Snez & Jody,

    But seriously here, how do you get people to comprehend the depth of your fatigue?

    I suppose you could say it's like having the worst viral flu non stop for days, weeks, months & more often than not, years on end.

    But if they're healthy people, I don't think they know what that means.

    I sometimes say, it's like the last time you did hard physical labour in the garden all day & couldn't move the next morning - not quite right, either.

    There are the days when your limbs feel like they're encased in concrete (in my case, this particular feeling has only happened a few times, but having experienced it, I can understand what the majority of you feel more often than not).

    Two years ago, at work, I couldn't remember how to write the letter "p" - so frustrating. I tried "b", "q", "d", "b" - nothing looked even vaguely familiar. After a while, I went for a walk to the lift & went down to the basement restrooms (why they didn't put restrooms on every floor in this new building beats me). It took a while, but eventually it "clicked" and I was able to finish writing the internal office memo.

    Last night I was so tired after typing on my computer, I pressed the wrong key & deleted 3 hours of typing!

    This is only about the 6th time I've done this in the last couple of weeks, so to the people that might have been expecting an email from me, I'll get to it this weekend - I promise - sometime.

    But can I remember what I said in that email (or post) last night, so that I can re-write it?

    Then I went to do the dinner dishes at a very, very late hour & just couldn't be bothered, so I put my prepared breakfast in the freezer (instead of the fridge), discovered I'd stripped the bed linen that morning to put fresh sheets on the bed, & had forgotten to remake the bed. So I just slept on top of the mattress. Then tried to take my contact lense out of the eye that was already emptied, and so on. It could have been incredibly funny, I suppose.

    Actually, it was incredibly funny, trying to flick the contact lense out of the eye which I'd already done. Or sometimes, I think I've dropped a lense on the floor & got down on my hands & knees with my nose & eyes about 6 inches off the floor, "sniffing/snooping" & peering around like a bloodhound. You have to see this to believe it. I crawl around & eventually get up to look in the mirror to discover the lense is still in my eye & has been pushed off centre.

    Sometimes I wonder how we remember our names (any more than our addresses), let alone when a new Dr or specialist asks about our health history.

    I have some things down to a fine art. I have several pages listing each major illness, operation & new symptom date.

    I turn up at the emergency department at my local hospital with a printed sheet in my purse - I carry it everywhere (just in case I forget who I am).

    It lists name, address, date of birth, occupation, employer, next of kin, local GP, cardiologist & neurosurgeon (they're the only ones who rate a mention in my eyes). I have my private health cover m/ship no - type of cover, my medicare number, ambulance m/ship number, each health condition & treatment, drugs/supplements (worthy of mention), surgery dates, allergies/sensitivities (like room spray & mould)
    and finally at the bottom of the page "to be alert for any potential drug/chemical reactions".

    I guess a normal, healthy person would see this as an obsessive/compulsive trait, but this is the reality of my existence. I daresay, many of you take your list of things you want to discuss every time you visit the Dr (in case you forget something, or are just too tired to talk).

    Each one of us on this forum could relate a list of incidents or distressing situations which hone in on the reality (be it, ME, CFS, FM, MCS, Crohn's, or any one of a dozen
    different even more serious health conditions).

    "Thank God, it's Friday" today (in Melbourne).

    They made a film in the late 70's with John Travolta called that, didn't they? Except that John Travolta couldn't wait for Saturday to dress up, slick back the hair, & gyrate his pelvic & swirl his arms around & hit the dance floor, with the smartest feet moves of that era. And before that was Saturday Night Fever.

    Now I'm showing my age......

    When did you last "hit the dance floor"? (21 years ago was my last, I think).

    Victoria.
  14. Snez

    Snez Senior Member

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    Victoria,

    Sounds like you are having a hard time of it lately. I really feel for you, having to work full time and then spending time recovering so you can work again.

    I think most of us can relate to the memory/cognitive problems. I have many issues with words as well- misspelling, transposing (think chicken instead of kitchen), poor word recall, forgetting people's names (even close friends). I have to reread some passages several times in order to understand, sometimes the effort required is so beyond me that I shelve it. Unfortunately, even time on this board can be draining because of this problem.:(

    Now dancing is something I long to do- Macedonian dancing, Scottish Country dancing, ballet, just for the heck of it dancing. Alas, "Saturday Night Fever" is exactly what I'll get if I attempt any dancing with robustness and vigour. I do have hope though, my naturopath (recovered from CFS after being bedridden for 3 years) can now Ballroom dance for 3 consecutive hours without any payback.

    Even though the people in our lives may not totally understand the torture of our disease, I'm thankful I can come here to laugh, empathize, encourage, be encouraged, glean information and share.

    Thank you Victoria for the way you contribute and share of yourself,

    you are a blessing:)

    Snez
  15. Frickly

    Frickly Senior Member

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    Jody

    This board has gotten so big I can't keep up. Better late then never.

    Very good article and I wish everyone would read it. The two that struck me the most is #1 "I get tired too". I would also add, "It's hard having three kids". These type of comments cause more irritation then out right anger. Why wouldn't they think we are just tired? We do have Chronic Fatigue Syndrome. :rolleyes:

    The one that really makes me angry is #10 when they just say "nothing". This is the one I usually get and not only is it infuriating but this comment makes me feel invisable. Keep writing Jody.:)
  16. Dreambirdie

    Dreambirdie work in progress

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    consider the source

    What always helps me cope with people's attitudes is turning it around and asking myself to "consider the source." :rolleyes:

    People show you who they are with what they do and what they say. Sadly, compassion is a *very rare* thing, and most people just don't have it. But sometimes, that ONE unusual person will surprise you with a kind and empathetic response, and then you know you have A KEEPER.
  17. _Kim_

    _Kim_ Guest

    Here's a new one

    In an email correspondence today - after I had written about my health problems, I got back this response, "I am sorry to hear that you have been overworked." How will I ever get accustomed to this kind of response?

    I found myself telling people this week, "It looks like I have CFS...and that it might be caused by a retro-viral infection." That seems to be one way to avoid the stupid comments.
  18. Frickly

    Frickly Senior Member

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    Kim

    When I was diagnosed after years of being ill I was so excited to finally have a diagnosis that I immediatly told all my friends and family. It didn't take long to realize that this was a huge mistake. I had no idea what kind of stigma was attached to CFS but when I realized this I was sooo humiliated. I wish I had never told anyone besides my very close relatives. My hope is that this will soon change and we will no longer have to be humiiliated.
  19. Jody

    Jody Senior Member

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    Thanks Frickly. I will. :)

    Encouragement like I get from these forums makes it easier to keep at it.
  20. Jody

    Jody Senior Member

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    CJ,

    Good thing you mentioned that about the salt baths. I was going to use that as a relaxing tip in a future article. Maybe it won't get the relaxing response I would be hoping for after all. :D

    And ... I do know what you mean. With each one of your points that you've mentioned. (Including the salt baths. :))

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