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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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Doing things that make you look like you don't have CFS

Discussion in 'Lifestyle Management' started by Boost, Dec 25, 2012.

  1. Boost

    Boost *****

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    So at our christmas gathering last night my brother in law bought me a boxing gloves/pads set. So all the guys were taking a turn hitting the pads and when it was my turn i went all out throwing some power shots, decent combo's, showing some good speed. Afterwards, i was thinking... these people must think my CFS is a joke. Despite my severe exhaustion, i am able to pull off short bursts of energy like this. I'm naturally an athelete, even though i havent worked out with weights in 2 years, i still have a build like a rugby player.

    I already feel like these people can't relate and may think this is all in my head, so my showing with the gloves really didn't do anything to help change that belief, lol.

    Is there anything you do that makes you seem normal?
    rosie26, L'engle, BEG and 6 others like this.
  2. snowathlete

    snowathlete

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    Well, for me, I have what i would describe as moderate to severe ME, spending most of my time housebound but able to go out for trips in the car to the shops for example, on occation, if i dont do too much.

    There were times in my first year of the illness where i could possibly do what you describe, but since then i know i wouldnt be able to. If someone broke into my house i could perhaps throw one or two punches at a speed and power that would have some affect, but typically i couldn't do it, and that would certainly worsten my condition considerably. It would be last resort kind of thing.

    About a month ago my daughter was with me in a supermarket isle, she is 22 months, and she ran ahead. She woudlnt stop when i called and started to dissapear round the corner. I had to run to catch up and get hold of her. It was about 4 or 5 meters, something like that. I had surprised myself being able to do that and someone who knew me might have doubted my ME perhaps, but it was still way below what someone healthy could do and within minutes i was so ill i had to go back home and i struggled to make it back to the car.

    So i guess to some degree i can relate, but probably not to the degree that you've described, but then maybe the severity of your illness is less than mine, or maybe just that aspect of your illness compared to mine, is different, I dont know.

    I wouldnt worry about what people think too much either way. Enjoy your life the best you can with this illness. People cant really understand the illness without experiencing it anyway and they will have misconceptions regardless. I think the average person who has never experienced true poor health just cant relate to it at all. Before i had ME i had sympathy for people with illnesses like this but i didnt realise how truely awful it is.
    rosie26, Yocheved, Valentijn and 6 others like this.
  3. arx

    arx Senior Member

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    Hey Boost,

    First of all a Merry Christmas to you and everyone here on PR.
    I experience very short bursts of energy where I can do little things, like meeting people,going for a walk,etc. I come across normal to others because at that time I'm in that short burst which I experience for a very short duration in a day/week.
    I am talking about my case and experience here.The problem with fatigue is that one cannot persist things. Like making a schedule and following it. I never know how tomorrow is going to be. I can listen to up-beat music for a while, get in a good groove and plan my day for tomorrow. But it doesn't last. With others they have some continuity,which I don't. I might have to be on the bed the whole day tomorrow, or I may go for a 2 hour walk with a friend. Or I may finally be able to read and understand something. I get some moments when I feel better, and it is during these moments I try to make the best out of them. My social interactions are all during this period, so others do get the feeling about IAIYH. But we know better,right?

    Momentary bursts, then crashes in energy are the worst. It's like the fog was just starting to clear up and it's back again. I've always thought how much of this clarity was brought on by psychological things like motivation,boosting :cautious: oneself etc., and how much was dependent on food/exercise/meds/supplements. I think the only two things that will persist is this discontinuity and my questions..
    rosie26, Yocheved, L'engle and 6 others like this.
  4. GracieJ

    GracieJ Senior Member

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    Like running for a bus to get some shopping done, then getting to the store and being absolutely good for nothing? I'm glad that part of life is gone for me, but can never forget.

    Only, it's even better than the tree falling in the forest... most of the time, the event, the inability to function, and the ensuing recovery period are never observed by anybody.
    Yocheved, BEG, arx and 3 others like this.
  5. ozikiwi

    ozikiwi

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    Much the same for me Xmas Day, Boost......spent it playing cricket with my son on the beach!! Fortunately we don't discuss my health much, so he was none the wiser really that what I was doing was 'illegal'! I, on the other hand, was VERY conscious of what I was taking on and how I might pay for it (esp since I had to go to A & E a coupla weeks ago with severe tachycardia), but I had to put all that on the back-burner in order that we had a fun day. Anyway, it was SO worth it cos we hadn't played together like that since he was a kid.......we had such a blast! Even saw someone with their pet pig on the beach! Talk about a quirky quistmas!!
    I also dressed up as Santa for my rest homers and did the ho ho thing. Am sure that will come to bite in the proverbial too! Oh well......
    Allyson, GracieJ and merylg like this.
  6. justy

    justy Senior Member

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    Hiya Boost!
    Well today i did one dance on the WII 'just dance' game to the black eyed peas - then felt like i was going to die. Like you i can often have these short bursts of energy to dance, walk or go to a party and talk my head off. But i always always always pay for it. So in the end i just try not to do these things hardly ever at all. And when i do, everyone looks at me like 'oh you cant be sick' Also so fed up with the whole ' wow you look well' shit. I look well becuase this is my only socail outing this month, i have also rested all day in bed to come, i have also washed and styled my hair, applied plenty of make up, put on my best clothes and boosted my adrenaline with the joy of being in the world.

    Next day i will be pale, with a grey drooping face, feeling depressed and wishing i hadnt gone.

    One of the things that interests me is why, even though i am moderate and mostly housebound i can always MAKE myselfr have energy for short bursts, whereas others seem completely unable to do that - even if their general functioning is usually above mine. I wonder if this is a subset?

    Anways, long rant over - i do know where you are coming from.
    Justy x
  7. Allyson

    Allyson *****

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    I agree entirely; I go to the docs and they think i look well but is has been my only outing --or upping --- I have done for a fortnight - rested up to be well enought to get there......and I will be back in bed 30 mins after the appt, exhausted.

    but i do notice Justy that it is harder and harder to make the energy as i get older and I usually cancel when I can ... eg a social event . whereas for a docs a ppt I will get there usually whatever it takes.

    The adrenaline we secrete to help us stand helps us get through the short bursts I believe, nd yes we always pay for that afterwards - that's payback.
  8. ozikiwi

    ozikiwi

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    Hi Allyson......just referring to the "Use ME not CFS" thingy at the end of you message......here in NZ we are encouraged to call our demise CFS as this gives us better access to govt health care benefits! Interesting, eh?!
  9. Allyson

    Allyson *****

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    thanks Kiwi, very interesting indeed and the opposite to the rest of the world !

    but then you would be wouldn't you .... lol
  10. GracieJ

    GracieJ Senior Member

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    Boost I love what you started!

    justy How I wish, wish, wish (well, okay, not really) people close to me would just say, "Oh, my gosh, you look like *#$*%#*!!!" Just once, just once... Imagine the closure, the laughter... I'd be out for days just from laughing so hard.

    (This from the woman who doesn't swear... kinda like the lady in What About Bob.... "She never says that!")

    I spent last weekend helping my daughter in her new apartment. Big mistake! I should have canceled. Moved boxes, moved boxes, moved more boxes -- more work than I should have been doing, and I paid for it. Time to stop doing those things.
    Allyson likes this.
  11. Allyson

    Allyson *****

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    Hey Gracie,

    no, they need ot come to your place and see you when you are too ill to get up to feed yourself or do anything at all before they will say that ... and we never invite people over then, do we? We are too sick to even talk, and the house is a mess somehow too as someone is too ill to do housework so we don't want people to see that either.
    Yocheved, merylg and Little Bluestem like this.
  12. GracieJ

    GracieJ Senior Member

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    Agreed... didn't return a phone call to a sister for 10 days, didn't even realize it... didn't do laundry for nearly two weeks from low energy (have to use a laundry room, didn't happen) ... was actually grateful no one was coming for the holidays, because everything fell apart with a "mini crash." Brought back way too many memories. I certainly don't mean to make light of this, and hope it has not been taken wrong. Unwashed hair, too weak to bathe... did the past ever come back to haunt this last week.
    Allyson likes this.
  13. SickOfSickness

    SickOfSickness Senior Member

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    Yes I hate this. People think I'm exaggerating if they don't see it, and I try to explain it. They think you just want sympathy or want to get out of doing what you promised. They think you are not responsible, or you're depressed.

    I agree with the poster who said it's adrenaline, I think lots of us are able to do that. I have a theory that anyone who can do it is also more likely to get chronically ill, if we go through any kind of stress, because we are too good at "pushing through". The people who can't push through will be forced to rest more and have a chance of recovery.
    Yocheved, Allyson, ahimsa and 3 others like this.
  14. rebar

    rebar

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    it's so hard to achieve a balance. the conundrum of containing or controlling energy expenditure and the desire to be a part of all that is going on around you. the hardest part of this illness for me is the psychological burden it imposes, forever questioning myself, "will this cause me to crash", including forever trying to convince family or friends of the seriousness of disability I experience. Similar to you Boost I can do very short burst, like bringing in the groceries, then its back to the sofa.
    Yocheved, Allyson, ahimsa and 2 others like this.
  15. Tammy

    Tammy Senior Member

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    I think for the most part.......anyone that sees me out in public doing whatever it is I may be doing will have absolutely no idea that I am ill and basically I will look normal to everyone. Even my close friends who know all about the CFS probably wonder sometimes.......she doesn't seem that ill..............they have no idea how hard I am pushing and putting on a brave face.
  16. alex3619

    alex3619 Senior Member

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    Allyson, justy and ahimsa like this.
  17. Patrick*

    Patrick* Formerly PWCalvin

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    Great post...very relatable. I found myself kicking the soccer ball around with my brother at our Christmas gathering. I was having a pretty good day, so I got caught up in the fun of it and the next thing I knew, I was practically sprinting after the ball. When you're used to playing sports at full tilt, those instincts kick right back in when you're in the situation. I'm sure my brother thought my CFS was a phantom after seeing that. I paid the price the next morning though.

    I'm also one of those anything-for-a-laugh type people, and my sense of humor was always based heavily on physical gags: maybe a wacky dance or imitating someone else's movements, etc. Often times now I can't help reverting to these old ways...it's just part of my personality. But it makes people think I'm still the high-energy person that I was before I got sick.
  18. L'engle

    L'engle moderate ME

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    @ arx... IAIYH great acronym for 'it's all in your head'
    Allyson likes this.
  19. Allyson

    Allyson *****

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    Gracie, try sending them a pic of you in bed or have a live chat or webcam showing how you do look on a bad day and that might change their minds. iIt has been suggested to me but I am too embarrased to do it.
  20. taniaaust1

    taniaaust1 Senior Member

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    Just being seen in a supermarket getting basic food essentials can make someone "seem normal".

    But really doing stuff which wouldnt make me look sick eg doing a fun activity out with others.. isnt something I have to worry about as its just not at all usually something I can do
    eg Ive been out bowling with my family once in the past 10 years.. and thou I managed to get out someone picked me up) and got to the bowling place.. by the time we got there, I didnt have enough energy left to even bowl the ball so had to spend the whole time there sitting with legs up watching them have the fun, with limited communicating (energy conservation so I'd be ok enough to be able to walk out of the place).

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