need some cfs buddies

so i've had CFS for 3 years with periods of remission and periods of relapse. the relapses havent been horrible...until now. i can hardly hold conversations, shower in the morning or even get out of bed. this is the part that i start losing interest in life...it just seems so pointless when i'm this sick. i can't work like i could and i have no idea how to explain it to my boss. imean, the second i say chronic fatigue syndrome ppl look at me like i'm joking...just b/c the name sounds so ridiculous and underestimated. it makes me sound like i'm just tired and like it's some made up name for something. i was in remission for almost 6 months...until a month ago. i've hit an all time low and feel totally alone and isolated. i only have one friend left and she doesnt understand this either. how could anyone who doesnt have it? my boyfriend knows about it but doesnt realize how hard it is and how horrible i feel all the time. i really need to start talking to ppl that understand. when i think about how sick i feel and how frustrated i am i get so down. i can hardly eat anymore...and i love food... and i refuse to cook because it takes too much out of me. this is the weakest and sickest i've ever felt. and no one seems to understand how awful it is...and how incredibly lonely. i dont even talk about it with ppl anymore b/c i get so frustrated when they just can't understand.

Hi chelly, I'm sorry things are so bad for you right now. I think it's especially hard to crash after you've been doing pretty well for a while. You are right that cfs is so hard for others to understand and so many people think it is not a "real" disease. This can make a person feel very lonely and alone. Has your doctor been able to help at all? That's another frustrating thing about cfs is that there doens't seem to be a lot docs can do for it. Hang in there and know that we can relate to what you are going through. Take care

  I'm kind of in the same boat as you are with CFS and you can email me if you wish to talk about it as my email is posted on my sig as I have had it for 13 yrs now an still trying to make things easier on me to suit my way of life as I live in Alaska and hunt and fish for most of the food we eat, just make sure you put in HW in your post k

  Cowboy up

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

Hey there!

I have been working in Sweden a couple of years ago in the swedish board for the so called Me/Cfs foundation. Believe it or not but the swedish term for chronic fatigue syndrome sounds even more lame, sounds a bit like "a little bit of tiredness syndome". We were having discussions on trying to change the name somehow, but we couldn´t go as far at the time for political reasons to change the name completely. We finally agreed on Me/Cfs which is short for myalgic encephalitis and chronic fatigue syndrome. Some of us in the board wanted to delete the Cfs completely. If you would like you could always say that you have Me to people you meet, cause they wont know the difference anyways.

I have an Me/Cfs friend that tells people that wonders that it feels like you have the flu constantly, and how would they feel if they had that. He says healthy people can relate to that.

Maria

Hi Chellybelly: I visit over here, and on the Chronic Pain forum, from the Lupus forum. The fatigue can cause a lot of isolation and people don't seem to understand. I'm feeling very isolated too. E-mail anytime you would like someone to talk to. My email is in my profile.

Treehugginhippy: I had to LOL when you wrote "all I saw of my friends was a cloud of dust!" I can relate! People just can seem to get their minds around it. It's amazing the comments some people make!

I think posting your message is a step in the right direction.! My husband has also reached this point in his illness, he feels there is no one that understands and he is right, I will never feel what he feels but it is also hard for the people on the outside of you as well. I pray for you and wish you well

confused and dazed

treatment is there for CFS..go get it...at least give it a go.....the treatment s called Marshall Protocol..for god's sake get it...you will be cured..if you have CFS/Fibro/MS.....many people have benefitted from it....plz get it...curing rate is above 95%....get a Vitamine D metaboilitise test 25-d,1-25d....and there you go...:)this life is yours....dont ruin it.

Hi chellybelly,i would love it if we could be email buddies all my love agnes 41