need some cfs buddies

hey i know exactly how u feel i've had cfs/m.e for 5 years now and its so upsetting when people dont understand if u ever wana talk i'm here xxx

I think I know how you feel, though I also know that everyone is different and everyone can react differently to illness, so I won't presume to say that I know your personal experience.

I've had CFS for over 20 years, and over the years it has gradually gotten worse. I can't work at all. I can barely run errands or take care of myself. Taking a shower is a major accomplishment, and I only do it about once a week. And of course it depresses me, but because it's been this way for so long, I have a different outlook on life. I don't have any expectations of being able to do normal things.

So I spend my time just thinking or puttering on the computer, or reading. I have some great online friends who I talk to by instant messenger, which I find less taxing than talking on the phone, where I can easily lose my train of thought. I also chat on online forums that are funny and silly, espcially a fan site for a band that I love.

This may not sound ideal, but it's my life, and it's not that bad.

hi chelly,

i am, more or less, in the same boat as you! while we are in this boat we should connect. :) i'd be happy to be your pen pal, if you're interested my email is in my profile. until then, many (((((((HUGS))))))),

Ra Ra

Hi Artpainter,

I hope you don't mind me posting, I don't have CFS, I have Addison's disease, which causes some extreme fatigue. So far my adrenals aren't doing anything according to the tests yikes, and the steroids aren't giving me the energy I'd somehow dreamed they would. This causes extreme fatigue and I have horrible episodes where lifting my arms is just like running a marathon.

I wanted to post as I noticed you were an artist and I really felt for you when you mentioned about not being able to paint and your "good periods" where you could.

Taking away our love and also our emotional release when we need it the most is so horrible, but thats what these diseases seem to do :(

Are you able at all to hold a brush? I've been doing something that is very hard but so far I'm finding some peace in it and a little less depression. I do paint some, but mostly I love to figure draw... but when its bad my arms and mind do not relate and they shake.. what comes out is some shakey mess! It frustrated me to tears and depression. And one day I said that I was going to draw even if I had to tape the pencil to my hands (Which I did, it didn't really work to well, maybe should of used ducktape).

At first it was hard and embarrassing really, why did I want to keep this up when it just made me more depressed? But after a while I gave into it and my art evolved into something different, I went with the shaking and the looseness, stopped trying to do what I'd been doing before. (just during the episodes)

It is still hard to fight through that depression but I look back at my sketchbooks and some of the art I created during bad periods and smile. Its different all right, yet makes me happy, well some if it makes me cringe and laugh in spite of myself. I hope to put them up soon for viewing with a "normal" gallery and another gallery for drawing/painting during episodes.

I don't know if this is possible for you or if you want to do it, in any case I'd be happy to listen when you need to talk and are feeling very down. And sharing helps so much.

I hope all is well and you are feeling ok.

micky

I am so thankful you and others suffering with CFS share at this message board.  I was diagnosed with CFS after 'crashing' so bad i thought i was going to be laid off.  While suffering from what we now know is CFS i have basically inadvertently isolated myself as well.  I over the years turned into the 'flakey friend', you know the one who ALWAYS calls to cancel.  My head would want to do it and my body just wouldn't let it happen, and then the invitations stop coming, and then the phone calls stop coming and the next thing you know...you're by yourself.  My relationship suffered as well, i'm sure all of us have experienced the frustrations that go along with being in a relationship and unable to have relations because you're so tired all of the time.  You are not alone even if it feels that way, keep on reaching out and do what you can when you can, little steps. 

I'm still adjusting to my diagnosis, i was very angry for a while but am improving my attitude and outlook slowly.  I do agree with those who mentioned trying to find a creative outlet, poetry, journaling, crocheting, music...you don't have to be great at it, just let go and give it a try.  I am musician and one of the hardest things to cope with was being so exhausted i didn't even have the energy to pick up an instrument, but i could pick up a pen and i just kept writing.  On days i'm better, i do what i can, on bad days, i just let them be bad and find other ways to keep my mind active while my body is having its temper tantrums.  I figure i had 2 choices, find ways to cope, or jump off a bridge...i didn't have enough energy to jump. (that was my attempt at CFS humor).  Yeah, i know i should keep my dayjob but their is a serious truth to it, if you look hard enough, their is good in everything, i'm just happy i wake up every morning...everything else that may occur is an added bonus and having that frame of my mind keeps me going.

Hello chellybelly, (As only we can say - I KNOW)

    Sorry to hear you're suffering at the moment - i have had cfs/me and fibro for seven years. I found when this happened to me, all i saw of my friends was a cloud of dust! An to think, up until recently i didn't even have the internet so i lost myself in writing silly poems and mystery stories. At least when i have the wherewithall to do it. As i have only recently found this place - i'm kind of in the same boat as yourelf. If you ever want to chat, rant or whatever - i'm here.

Take care treehugginhippy

After reading everyones posts

and we seem to all be " facing the same daily issues"
one mentioned us all in the same boat

i think we maybe are little boats all sailing on the same CF sea
or harbor

One of the things that does give me strength is to know
im not facing this alone, there are others who face the same issues every day...

Thank you all for sharing your story,

each story is like a piece on a patch work quilt; unique, yet sorta the same,..
all bought together by the threads of Healing Well

:)
Peace to your sea

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They that wait upon the Lord shall renew their Strength, they shall mount up on wings as eagles, they shall run & not grow weary, they shall walk & not faint..."  Ish   40 v. 31 

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