10 December 2008
Frustrating
I have a lot of thoughts & emotions relating to being dx'ed with EDS, as I'm sure you all can guess, but I lack a person who I can talk to face to face about this. My roommate had to listen to all the crap & drama leading up to it & she's sick of it (can't blame her), my mother has freaky amounts of guilt & can't accept that I'm as disabled as I am so we can't talk about it. Which leaves me no one, well I guess I could pay a shrink, but what I want is a friend who has emotion vested in me to be able to talk with me, someone who knows me & cares about me to talk with.
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2 comments:
QS,
It is important to talk about this stuff and to find someone who kinda understands.
Can you find a support group for chronic illnesses nearby? You may not find an EDS group, by a local hospital or community center may have a group for people living with chronic conditions.
Another idea is online support like the EDNF, but real life is definitely better.
We actually have nothing like that here. We have a cancer group & an elderly group, but I wouldn't feel appropriate at either. I have been spending sometime working on creating a group here & fingers crossed it will be good to go by spring. I am also going to start going to the arthritis water class at the gym. I have talked with the teacher about how I won't be doing most of the class since it's stretching. I'll do the parts I can & sub in PT stuff for the parts I can't. She's cool with it & I've talked to a few of the ladies in the class (who are all 20-30 years older than me) & they are glad I'll be coming.
I am an EDNF member & a CEDA member, but the live person aspect is what I am craving, a live person who you can sit at a table with.
Wow, that was a very long winded answer, lol.
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