Chronic Fatigue Syndrome Support Group

I'd like to add this to the list: http://chronicfatigue.about.com/od/...

It is title Chronic Fatigue Syndrome vs I Get Tired Too.

If you like the spoons story, you will like this too....maybe even better because it is about us. This is what I would like to say to anyone who responds to me with "I'm tired too" if it didn't all slip past me in the moment. (Some kind of brain fog.) After discovering this I kept a copy of it whenever I went somewhere for many months.

I guess i don't have sympathetic people in my life because when i tried to educate them about CFIDS, i didn't get any response, or still got negative ones. Dr. Oz even did a segment on CFIDS, and I asked my niece to go back and watch it. I've begged people to Google it, read it, but no one in my world seems to get it. Very frustrating.

Flying chi, that is a very good article. I will use that one too to educate. Lulu, I've shared these articles with friends and either they didnt get my email or just didnt read or respond. It is very disheartening - but I figure, now they know and the ball is in their court. I dont have to constantly defend an illness that has me so sick it is ruining my life. K

I loved The Golden Girls! I think Bea Arthur lead a long, productive life, despite her illness. She's a real inspiration.

I try to tell people about it verbally and I try to make it short unless they seem interested...but sometimes I forget and go on about it awhile. Carrying a copy of that article helped when I wasn't sure how to word things.

So here are some of my lines that seem to get neutral responses. You have probably used some. Feel free to take any you like.

I can't do _____ well/sometimes/anymore because I have chronic fatigue syndrome.

I have cfs, have you heard of it?

It's similar to fibromyalgia but with less pain and a whole lot more fatigue.

There isn't a cure. If I pace myself I last longer.

I do what I can when I feel well enough to do it.

Just visiting with you helps, even if it wears me out.

I want to go but it all depends on how well I'm feeling that day.

I will be there but I may have to leave early if I get too worn out.

Don't worry it isn't contagious.

Mostly it's fatigue. There are other symptoms but wearing out fast is the worst for me.

If I walk slow (or don't drive or whatever) I will last longer.

I can still do almost anything I did before...but now I pay, sometimes badly, for hours, days, or even weeks.

And if anyone wants to add to this list, it is welcome.

thank you flyingchi, sounds like what I say. I feel that people who have met me since my relapse, think Im a complainer and lazy - totally opposite of how I "really" am. But you know, I cant make them understand. It helps that the people that knew me before, know I was a happy, active independent person. K

The main reason I wanted to share those so much is that I had great trouble putting into words what my symptoms were. It wasn't until someone suggested maybe you have cfs...and I looked up symptoms to see if that might be it...that I had some good phrases to describe it. So I just hope I can help someone who struggled like I did.

I mean really, try explaining brain fog when you are having it at the moment and have never heard of it before!

I was also very scared people would think I am stupid. I still do! If someone asks me a question I haven't thought of before I can get a little lost. I practice in my head answers to possible questions to avoid this.