Iv'e had this monsterous affliction for 14 years now.....I know what I can and can't do and this weekend I cleaned the shore house x 5 hours, windows, arms over head, swiffered and vacuumed. I had renters coming in on Sat. I had to do it alone. I then put my 6 year old in the booster and drove the 2 hours home. I cried from the insanity of it all the whole way home...I'm in a flare so bad I can't function....

What does my family say to me when I see them? First DH: "Youre just out of shape"! idiot
My mother: "Youre just not used to hard work"!

With support like this, I needed to stay down the shore

I really never say too much, suffer in silence....I see why this is the way a hidden disability is so damn frustrating
\
Thanks for hearing me...

I totally hear ya. I get the same thing from people in my support Group. "maybe if you did this exercise or that exercise... or if you'd just build up your muscles... you'd get better.". You'd think after 3 years, they'd get it.

I'm hobbling around earlier this am, in a 10 flare, and Mom wants to complain to me about the new telephone that she can't seem to hear right on. Not the time to engage me in any conversation, let alone expect me to read the tiny print on the manual. (it's actually more a problem with her hearing aide not being set right than the phone's fault)


Anne

for you both.

In defense of the selfish and thoughtless people around us, they just can't see, hear, or touch our pain. let a visual sign come on the scene and they all go, "Oh, does that hurt?" I guess we need to have patience for them to receive understanding. In time they may come to understand.

hey, im lucky that i have a fairly good group of family and friends who are usually very supportive and although they dont fully undertand the ins and outs of daily life with tos - they do at least try.

It just adds to the pain when people arent supportive - i have had been given then nickname hypocondriac on several occasions - people have said it in a jestful way but are unaware that it can trigger a train of thought in me where i convince myself that everyone things im lying. If only people appreciate the effect of their words.....

take care

[QUOTE="Youre just out of shape"! idiot
My mother: "Youre just not used to hard work"!

..[/QUOTE]

[SIZE="4"]WE've all heard, "you just don't try to exercise / work." "you're conditioned." So baloney - with as much bedrest as we require, and my about 80 % now -I am doing a little better...

I did do something rather courageous. I have cut my mom off from me, except for birthday cards. I'm 50, and I can't take the criticism anymore.

She actually called to tell me "I prayed to God to take your pain and give it to me, so now I'm in pain - I have an immunological problem they diagnosed - but I guess I got it from you." That was my final call.

So for those of you with Toxic people around, cut them out. It's not good for our disease(s) to have someone like that saying things like that. If it means we're alone and have to rent a room, then so be it.

BF has been sober almost a year now. IF anyone has anyone with a substance ABUSE problem, please PM me, as I can help you negotiate a cheaper price, where to go, etc. [/SIZE] My daughter had about 80 days (if you get what I'm saying) and she quit the facility, we found another one even better for females only, and in the AM she packed up and left. Everyone keeps saying it will be ok, she'll hit bottom, but I still cry non-stop every day.

So back to venting, - YES - it's ok with me to VENT here. You've got to get the toxic thoughts out. And if you ever want to PM with your number, I'll call and talk to you - none of us are alone.

hUrting terribly, gotta go, LOVE! Tam

I'm sorry to hear that your having to deal with family substance abuse problems on top of everything else....if you ever need someone to talk to about that feel free to PM me....I used to be the deputy director of a treatment center & have family members with substance abuse issues.