Hi
Hi everybody. I'm so happy to have found this community. About 2 years ago, my orthoped diagnosed me with a "genetic hypermobility disorder" but never gave me a name. Since then I have had shoulder surgery for recurring dislocations/subluxations and had over 100 visits with my physical therapist. Until this year my problems had been limited to my shoulders and one hand, but in the past 6 months things have gotten worse. I now have knee problems, had a suspected spine subluxation, and in the past month have had my hip pop out of place over 10 times.
I'm an exercise fanatic, but at my doctor said after my hip heals (2 months with nothing but walking) I will never dance, take an aerobics class, or do an exercise video again. He wants me to exercise regularly, but it must structured and only movements approved by him or my physical therapist. The lack of exercise is driving me crazy and knowing that I'm limited for life has got me really depressed. I normally deal with stress through exercise, and without exercise I don't know how to cope.
I tried to make myself feel better by taking a vacation to Disneyland. For the most part it helped, but my hip popped out on the Matterhorn so I held on to the handles tightly to reduce the pain and ended up with a shoulder subluxation. Its a little ridiculous and hard to explain to friends that I need to find someplace out of the crowd so that I put my body back together.
My question is how did you guys learn to cope with things emotionally? I've tried talking with friends and family, but they don't seem to understand. My mom's cousin is the only person I know with EDS and we're not very close. My physical therapist has an open door policy and allows me to call/email/stop in anytime free of charge, but I try not to take advantage of him. I'm considering going to a counselor, but am hoping I can cope without it. Any tips?
I'm an exercise fanatic, but at my doctor said after my hip heals (2 months with nothing but walking) I will never dance, take an aerobics class, or do an exercise video again. He wants me to exercise regularly, but it must structured and only movements approved by him or my physical therapist. The lack of exercise is driving me crazy and knowing that I'm limited for life has got me really depressed. I normally deal with stress through exercise, and without exercise I don't know how to cope.
I tried to make myself feel better by taking a vacation to Disneyland. For the most part it helped, but my hip popped out on the Matterhorn so I held on to the handles tightly to reduce the pain and ended up with a shoulder subluxation. Its a little ridiculous and hard to explain to friends that I need to find someplace out of the crowd so that I put my body back together.
My question is how did you guys learn to cope with things emotionally? I've tried talking with friends and family, but they don't seem to understand. My mom's cousin is the only person I know with EDS and we're not very close. My physical therapist has an open door policy and allows me to call/email/stop in anytime free of charge, but I try not to take advantage of him. I'm considering going to a counselor, but am hoping I can cope without it. Any tips?