What is Ehlers-Danlos Syndrome
Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary fro...
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This is my first time posting, so I'll try to keep it brief. I was diagnosed with EDS (either classical or hypermobile type) in 2007 while completing a doctorate degree, working and raising a family. I had already been diagnosed with fibromyalgia and long QT syndrome (for which I have a defibrilator). I thought once I finished school I would have more energy and motivation to find some balance in my life, but that didn't happen. I am really struggling with what to do. I am in constant pain (no shock there) and fatigued to the point of falling asleep by mid-morning no matter what I am doing. I am seeing a geneticist in a couple of weeks, but really don't know what to expect. I guess what I'm asking is, other than a breakdown, how do any of us know when to "cry uncle" and admit we can't do all that we want to or think we should be able to do?
Posted on 11/17/08, 01:11 pm |
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I know it's been a while since you posted, unfortunately the EDS group is active in spurts but eventually you'll get some responses.
You know I think each of us has to learn to pace ourselves, it took me a long time to accept that the career I loved was over, and that I really had to file for disability in order to survive. I don't know what your limitations are physically but I do know that you are the best judge of when enough is enough and it's time for a break. It sounds like you've really had a full load and you may just need to look at all you are trying to do and figure out some short-term and long-term goals for yourself and then go from there. I know how frustrating it is when things that use to be just normal everyday things are now these challenges, believe me I never thought I'd have to learn to do dishes in steps with breaks in between for God's sake it seems ridiculous but hey that's where I am and that's what works for me. I know this may not be want you needed to here but please remember you are not alone in feeling this way...we here you. BTW if you are in need of more steady interaction you may want to check out the chronic pain support group (just a thought). Blessings to you, Konnie 
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everyone is different and it is all about learning your own limits. We can't do everything like society expects us. i know that!
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AS I got older it took less and less to bring me to fatigue where I could not go on. Of course I was diagnosed with everything but the actual cause of EDS at that time in my life. It might have been a blessing not to know, or I might not have pushed as hard as I did, Finally when I started having bowel surgeries almost every year I realized something major was wrong (still didn't know what) and I semi retired from the laboratory and only work a couple of days a month. I try to never plan activities 2 days in a row, since I need recovery time. But since I did this I have had no more surgeries. I have applied for Disability but am waiting for a hearing (takes 1-2 years) so even if you don't want to go on permenant disability right now it might be good to apply for temporary so you can take a break and regroup. It all depends on the severity of your symptoms.
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