definately this is gotta be the worst part of this illness and the fact that theres even controvesy over the existance itself is added frustration, honestly my blood boils when someone tries to contradict me and i feel like exploding (it hits you where it hurts) so ur not the only one. knowledge is power know as much as you can. even writing a letter or sending your family/friends leaflet explaining the reality of ME cud help them understand. written words are a much more powerful form of communication. ive learnt that people will never understand till they ve lived it. Ive been told 'YOU'LL GROW OUT OF IT', that im a hypercondriac, that 'YOUR NOT ILL YOUR JUST PESSIMISTIC AND HAVE NO LIFE AMBITION', that its depression. the most ridiculous thing ive heard when i was taking suppliments to help my symptoms was 'ITS BECAUSE YOU TAKE ALL THOSE PILLS' proclaimed by my brother. before consulting another doctor at the pratice i first went to my general practitioner with the symptoms and all he cud suggest was excercise regularly eat well and there was nothing he cud do? no tests? no examinations? nothing? if you want any information or an imformation sheet designed for people who know someone living with M.E. what ME is, what are its affects..etc. let me know ive got tons.

One of my very best friends in the universe told me I was in "denial" about the depth of my depression. One day she called and I had been crying. She told me to "snap out of it" or that she would call 911 and tell them to take me to the psych. ward. Needless to say, our friendship is somewhat strained. When I found out I had CFIDS and told her the response was, "I knew you weren't just depressed." WTF!?!? She needs to be right 100% of the time. Bleh. Too much drain on THIS chick's energies!!!

My mother says things like, "hard work and tenacity" will pay off, Ruth. You need to work HARD at getting better. HELLO??? Do you READ the articles I send you? No. Obviously not. Too much sapping of the energy there as well. It hurts to let go of close ones soooooooooo very much. But my mom told me to be tenacious and fight hard. In this case that means loving her "quietly" and with little contact. Sometimes it's just soooooooo tempting to go quietly into that good night (or good woods) and just stay there.

Recently my bf has been saying, "You're tired again TODAY? But you were tired yesterday? WOW ... you were tired on FRIDAY, too!" Duh. I'm still coming down from having gone to Chicago last weekend and having the rug pulled out from underneath me at work this week.

We take a looooooong time to rebound. And it's ok. It's the "hard work" of all of this!

Hang in there and I'm so glad we're here for each other!!!

I have heard that the whole time I have been sick. I don't look sick and I don't look 37 either. When I would go visit my boyfriend 45 minutes away from me in college, my sister used to say, "you can't be sick if you go visit him." Yeah, I can. He is a release. It's like we are supposed to be dying all the time. I think some CFS people might not think I am sick because I do more than I ever used to, but I am. I have to pace myself constantly and its been 18 yrs. and things have leveled out for me now.

People don't understand this illness, as they can't see anything but a healthy person infront of them. Even my family who has seen how it affects me still doesn't fully understand the limitations it puts upon one. I have tried to educate them to the best of my ability. Comprehension isnt there.

Check out this website...
www.butyoudontlooksick.com
I just found it seems interesting.

My dad is slowly dying from Parkinson's. My mother write me incredibly stupid and insensitive letters. Yesterday in a fit of I don't know what I called her best friend to ask if she was ok. WHOOPS. I got ripped BIG TIME and was patronizingly told "I'm sorry you don't feel well, but your mother's heart is breaking. The man she loves is slowly dying."

Ok. That's a horrible situation, HORRIBLE. And no, I can't imagine it. The man I was married to for 20 years LEFT. I can't imagine losing my soulmate to physical death. I really and truly can't. But I understand being heart broken and I understand being alone. The patronizing? I'm done with.

WE need to take that hypocratic oath. WE need to tell ourselves, "first do no harm" and walk away from toxic people (albeit slowly.)

I spent a LOT of last night wondering if I was making this all up, if I was over-reacting etc. etc. It's hard. But when I get that way I ask myself, "What would my motivation be for faking that I was sick. For lying in bed or on the couch all day?" A healthy person would have no motivation for that. A healthy person would get bored and get up and do something. We don't have the energy.

We're SICK.

Ugh.

End o' morning rant.

this happens to me all the time. They never beleive me or give me the, yeah you are sick again type roll of the eyes. It is hurtful.