# using fm or cfs as an excuse



## Clair (Sep 16, 2000)

Do people think you use your illness as an excuse?certain individuals in my life have commented that I use my illness as an excuse - I don't know if that is them being ignorant and unsupportive or if I am using my illness as an excuse not to do things







With the CFS/ME I feel I have only a certain amount of energy to expend each day...so I try to prioritise my use of that energy for specific things...so for example I would prefer not to waste it on doing menial tasks that will tire me out and prevent me enjoying other things. My loved ones seem to think that I use the illness as an excuse because I can't be bothered. I tend to think of my careful energy management as a good way to prevent overdoing it and ending up feeling 10 times worse. So I feel that if I say no to something, my loved ones roll their eyes and think 'here we go' making excuses again. I don't know if its is me being unreasonable or them being insensitive...I guess when lots of people say the say thing you start to believe there is something in it...So how do you go about saying 'no' and being assertive without having your illness thrown in your face? I always thought I was an assertive person...but find myself agreeing to things I know I will suffer for later just to keep the peace. I guess being bruoght up a catholic does not help the situation because I always feel guilty for saying 'no' as if I am being totally selfish.







What a minefield..


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## squrts (Aug 14, 2000)

hi clair,i go over and over this in my head.sometimes i really do believe im useing my illness as an excuse.i hate it,i cant stand it,so i try not to think about it!but when my mom in law actuly argues with me about not showing up to her way too frequent family gatherings its hare to do.you do whats best for you and fucget thoses persons,sorry,it really makes me mad.how to say no?i guess just say no.as for religion...dont get me started


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## M&M (Jan 20, 2002)

I've thought about this before. I decided, it doesn't matter to me either way. I agree with the energy management - it's crucial. So if someone thinks that's an excuse, I don't mind. However, if someone else thinks you're using it as an excuse, I think that's just proof they have no idea what your life is like. (Does this make sense? LOL) Most people in my life understand now if I say I can't do something. Once I had some friends ask if I could watch their baby really early one morning, and I said I'd love to, but I take a really powerful drug that makes me sleep, and if something happened, I'd never wake up. When I tell someone "No" I don't always give them a reason, or "excuse". I just say "No". I practice saying no. I say in the mirror, outloud, "I'd love to help you, but I just can't this time." or "I'm really sorry I have to tell you no." or just plain "No, I can't." I've found that really helps. People will be disappointed when you tell them no, but that's ok. Life is full of disappointments, and they'll get over it. It isn't good to use all your resources up for others, because you end up paying for it. (But, trust me, we've all been there. I find myself there too often. Though, I'm starting to do better on that.)


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## Stillnaked (Jan 19, 2003)

Yeah, my whole family says that to me, too. Makes me crazy! If it's something i enjoy, they say I am just acting tired, and if it's something I don't enjoy I'm faking. Sigh. They say they are being supportive, but heck, I don't tell people they are faking when I'm being supportive!Laurie


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## thomasw839 (Aug 21, 2002)

Hi Clair--I have that isolated, misunderstod feeling a lot too. There was an absolutely wonderful poem posted on this site quite a while ago (I don't remember who posted it) which I think I saved someplace on my computer. I'll try to find it and post it on this thread for you. I actually printed out a copy and pinned it up by my desk at work to try to give my coworkers a way to understand. To my knowledge, no one read it.







But if I am able to find it for you, you could print it and HAND IT to those loved ones of yours who cannot seem to understand how you feel.Meanwhile--you're not alone. Two nights ago my 26 year old son referred to my fibromyalgia as "that imaginary disease of yours." That really hurt. I guess we both need to work on thickening up our skin and trying not to care so much what others MIGHT be thinking. Some days I'm good at it; some days I'm not.Will go on that search now.'bye for now,Cyndie


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## thomasw839 (Aug 21, 2002)

Hi again Clair-- I've found the poem. It actually was for CFS, but I've read that many people, doctors included, feel that CFS and FMS are the same thing. Or you could just change the acronym CFS to FMS. Anyway, it gets the point across rather nicely, I think. Here it is:"How are you?" people ask me As I stumble up the street "Not too bad" I answer As I try to lift my feet "Not too bad!" Now that's a laughThey haven't got a clue Of just how much I'm hurting And the pain I'm going through "You look so well!" they tell me And then go along their way And I am left to wonder How I'll survive another day Many days I find it hard To merely lift my head Let alone to contemplate Arising from my bed.This illness that's called CFS Has plagued me now for years It causes me such pain and strife Reduces me to tearsI'd pay any price if I could have A day without this pain The aching joints, the throbbing head Are an awful endless drainMy mind is fogged, my throat is sore As if I've got the flu I'm so sick and exhausted There's nothing I can do I look at other people As they rush from day to day And I wish with all my heart That I could be this way I wish I could do all the things That I once used to do The things I took for granted Back then before I knew The agony of CFS, this cruel relentless foe Just how much pain and grief it brings No-one else can know I put a smile upon my face And struggle on my way And pray that God in heaven gives Me strength to last the day And I've just one word of advice That I can give to you Never take for granted All the things that you can do Appreciate the little things That you do every day Appreciate the work And appreciate the play Never take for granted All the things that you can do For I would be so thankful If I could do them too. Remember--"chin up", "stiff upper lip", YOU ARE NOT ALONE!


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## M&M (Jan 20, 2002)

That's really a wonderful poem. Thank you Cyndie so much for posting it!


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## weener (Aug 15, 2000)

Hi Clair, I personally don't believe I use it as an excuse. Some may say otherwise, but they have never said it to my face. I feel that I always try to do things if I know that I can. When I'm feeling sick and know that it would be pushing the limits I then listen to my body. I have had to cancel visits and engagements over the years. I have to admit that I do feel bad at times about cancelling, but then I think about the consequences.When I have to cancel an invitation I call to say that I'm sorry, but I won't be able to attend ....because I'm having a bad bout of fm. Most of my friends and family understand and for the ones who don't (I give them the cold shoulder)







I've said this so many times before and I would say it again, if it was an illness that could be seen it would be so much easier. I love the poem that Cyndie posted. Can you print it out and put it on your refrigerator? Hang in there Clair


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