For the past few months I have been having problems with my rib popping out of place beside my spine. This has become a very painful problem, that is affecting my quality of sleep almost every night. Laying down is killer! I am still waiting on a referral to a pain specialist from my GP. It seems like every year the problems from EDS just multiply, get worse and even more bizarre. Coping with Ehlers Danlos has been a process. I miss the days when I didn't have pain every day. My best days anymore still feel like I am coming down with the flu. I'm tired and I ache all over. I feel terrible that my children have to also be affected by EDS (not just with their own hypermobility), but having to cope with a mother who is not always up for fun and games. Chronic pain and fatigue is a vicious cycle, and I hope to get some better management soon. Some days I feel like I am merely surviving rather than living. So many people don't understand why you never feel up to doing anything but just sitting around your own house. I have begun to feel very socially isolated. At this point I am still working full time, but this is taking everything out of me. After work I have nothing left to give, and no energy to do anything else. People don't understand that either. My family likes to give me the "if I would just....." speeches; and If I wasn't dealing with chronic fatigue and pain I probably would......... I hate those speeches! Do people really think a person in pain enjoys being in pain?!?!? Chronic pain and fatigue is a vicious cycle that you can only understand if you deal with it. It zaps you of your vital energy and sucks you dry, just like a parasite. There are a lot of misconceptions out there about chronic pain and invisible illnesses. It's amazing how quick people are to judge a person who deals with chronic pain. I have talked to my family about my diagnosis of Ehlers Danlos, most of them refuse to educate themselves. They only continue to judge, and blame me for my pain. I am doing the best I can with what I've got, this is all I can do.
I can relate to the problem with working taking everything out of you. When I still worked full time I was pretty much useless when it came to anything else. I would come home from work and pass out before the sun even set.
ReplyDeleteThese days I am too disabled to work at all and I am trying to come to grips with that. I'm in the process of applying for disability, and it is my hope that if it is approved I will once again be able to support myself. Right now I live with family, and like you I feel that they are unable to understand what I am going through.
Hang in there.
ReplyDeleteI was diagnosed in 2000. I am currently disabled, but continue to raise my 4 children. Some days even that seems an impassible challenge and that's hard on everyone around me [but hardest on me].
My partner gets it as much as she can; my family still just thinks I have bad joints and must have a knife-happy surgeon. No one knows how some days I wake up and know that I'll have used up my "spoons" just getting out of bed.
As alone as you feel, know that you aren't, even if we're just "friends in the box."
Hugs to both of you. I appologize it's a year later. I haven't been on this thing since Dec of 2010 o.O
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