EDS and me
Shawnalee0703
Posts: 1,093
For some reason it has taken me FOREVER to settle down and take the time to introduce myself! Sorry! GAZZ Has been so great at keeping in touch and apparently I suck at that right now.
My mom was a major guinea pig at the children's hospital growing up (this was nearly 50 years ago now) because she had such a unique and interesting set of symptoms. Because my mom was diagnosed so young my parents knew as soon as I was born that I also had EDS. My mom was sheltered a lot growing up since her mom was so unfamiliar with the syndrome- as were the doctors. My mom, having had EDS all her own life, she was not nearly as sheltering about life's events. I was excused from Soccer and Hockey in school PE to reduce the risk of needing to be sent to the hospital for stitches or constantly needing an ice pack from the nurse... that I understand! Part of me wishes I didn't know I had EDS until later years. I think I may have been more active had I not known.... EDS was a good excuse to a measly child or teen that had never really been encouraged to find a team sport because "it's ok you don't need to because you have more of a risk of injury ".
Oh well, now is now and I am taking life as it is. I am most definitely more active than I was in high school but that took years to even acquire an interest in. Now my fiance and I bike, hike, camp, walk/run the dogs and move much more than I had before. I think a lot of that has to do with the fact that my mom grew up with an inactive lifestyle do to he unfamiliarity of EDS at the time. Who can blame them.
I was not kept at home in padding, but when I was young my mom requested that I wear shin pads to the park... uh yeah that didn't happen! Instead I would repeatedly smack my shin on the ladder up the slide, over and over again, eventually becoming a large and unsightly hematoma that later healed from the inside out and left a mondo size scar on my shin. This is only one of the MANY battle wounds over the years.... two 4-5 inch gouges in my calf and shin within a couple months of one another and torn open knees were just part of life. Growing up my mom and I shared a plastic surgeon because we both did not have success with basic sutures when repairing a tear in the skin or tissue. So basically- cutting and bruising is just part of life! Of course I have not cut myself open i years (knock on wood) but I think that has a lot to do with being an adult and not so much of a klutz! Bruising on the other hand... ALWAYS and often.
My joints have always been VERY bendy and flexible..... even in elementary school my classmates knew I could pull all fingers backwards and put a foot behind my head..... obviously I don't show off those things nearly as frequently now as I did when I was a child... haha
Joints did not start truly HURTING until my early 20's I would say. I honestly blame my smart phone and the computer for my hand pain!! But I can't give them up- I mean it IS 2012. One day I may come to my senses!!! Shoulders and knees I would say are my worst pain. Not all the time but frequent enough that I feel 20 years older than my closest friends! My hips act ODD now and then and it is no fun. Strength training has help stabilize them BIG TIME... but at the same time has TIRED out my wrists and cause pain while training. But I would rather endure the pain in my hands during and just after training to prevent a high risk of dislocation in my shoulders.... there were times before weight loss and training that I would wake up in the middle of the night with my should out! Not so fun!
Now dislocation is much more infrequent and that is a GOOOD thing!
When I met my fiance I became more active and I had a different kind of support than I got from my mother who has EDS. With Jeremy it's different. He was a wrestler for 12 years and played many other sports as well. He was east coast champ at 12 years old and wrestled at a varsity level from 13-18 years old. He knows pain and he knows how to push through and challenge himself. His years of being an athlete taught him how much support one really needs to get where they want and how much drive you have to give to get there- no matter what it is! He has such an amazing work ethic and such an amazing way of supporting me- even with EDS. Yes there are times that he gives me funny looks because he doesn't quite grasp the severity of EDS. But he is there to guide and encourage. He is great about helping me eat well, move often, and he LOVES buy me clothes when I earn a new size! He has changed this journey called life, weight loss, family, challenges, career... you name it, I am thankful. He doesn't always understand or jump right up but he is always willing to learn and try to understand... never calling me a whiner or a wimp but never aiding me in giving up- rather helping me find a success(or really good excuse) within the struggle. There are days that we both have achey left knees and we turn to each other and wonder "what the heck will we do when we are 50" haha we will do everything we can TOGETHER!
My joints feel old- and sometimes I wonder if I am 60 instead of 27.....but life goes on and I am happy where it is!! I am taking the weight off and keeping it off to avoid even more pain in places that should have hurt so much! I just pray that having kids is successful and safe for my body and that if they have EDS we are able to find them an activity that they love, whether it be physical or artistic....Hoping Jeremy gets his athlete!
Cuz we know that won't be MY gene haha
Life is not easy with EDS as it effects so much- but it does not effect everything! I just wonder sometimes- Am I really in more pain than "normal" people??? I dunno because I am not normal.
I am glad there are so many here now that have so much in common! It's nice to have people to relate to that can understand the little things others may not get. Good luck and KEEP MOVING!
Shawnalee
My mom was a major guinea pig at the children's hospital growing up (this was nearly 50 years ago now) because she had such a unique and interesting set of symptoms. Because my mom was diagnosed so young my parents knew as soon as I was born that I also had EDS. My mom was sheltered a lot growing up since her mom was so unfamiliar with the syndrome- as were the doctors. My mom, having had EDS all her own life, she was not nearly as sheltering about life's events. I was excused from Soccer and Hockey in school PE to reduce the risk of needing to be sent to the hospital for stitches or constantly needing an ice pack from the nurse... that I understand! Part of me wishes I didn't know I had EDS until later years. I think I may have been more active had I not known.... EDS was a good excuse to a measly child or teen that had never really been encouraged to find a team sport because "it's ok you don't need to because you have more of a risk of injury ".
Oh well, now is now and I am taking life as it is. I am most definitely more active than I was in high school but that took years to even acquire an interest in. Now my fiance and I bike, hike, camp, walk/run the dogs and move much more than I had before. I think a lot of that has to do with the fact that my mom grew up with an inactive lifestyle do to he unfamiliarity of EDS at the time. Who can blame them.
I was not kept at home in padding, but when I was young my mom requested that I wear shin pads to the park... uh yeah that didn't happen! Instead I would repeatedly smack my shin on the ladder up the slide, over and over again, eventually becoming a large and unsightly hematoma that later healed from the inside out and left a mondo size scar on my shin. This is only one of the MANY battle wounds over the years.... two 4-5 inch gouges in my calf and shin within a couple months of one another and torn open knees were just part of life. Growing up my mom and I shared a plastic surgeon because we both did not have success with basic sutures when repairing a tear in the skin or tissue. So basically- cutting and bruising is just part of life! Of course I have not cut myself open i years (knock on wood) but I think that has a lot to do with being an adult and not so much of a klutz! Bruising on the other hand... ALWAYS and often.
My joints have always been VERY bendy and flexible..... even in elementary school my classmates knew I could pull all fingers backwards and put a foot behind my head..... obviously I don't show off those things nearly as frequently now as I did when I was a child... haha
Joints did not start truly HURTING until my early 20's I would say. I honestly blame my smart phone and the computer for my hand pain!! But I can't give them up- I mean it IS 2012. One day I may come to my senses!!! Shoulders and knees I would say are my worst pain. Not all the time but frequent enough that I feel 20 years older than my closest friends! My hips act ODD now and then and it is no fun. Strength training has help stabilize them BIG TIME... but at the same time has TIRED out my wrists and cause pain while training. But I would rather endure the pain in my hands during and just after training to prevent a high risk of dislocation in my shoulders.... there were times before weight loss and training that I would wake up in the middle of the night with my should out! Not so fun!
Now dislocation is much more infrequent and that is a GOOOD thing!
When I met my fiance I became more active and I had a different kind of support than I got from my mother who has EDS. With Jeremy it's different. He was a wrestler for 12 years and played many other sports as well. He was east coast champ at 12 years old and wrestled at a varsity level from 13-18 years old. He knows pain and he knows how to push through and challenge himself. His years of being an athlete taught him how much support one really needs to get where they want and how much drive you have to give to get there- no matter what it is! He has such an amazing work ethic and such an amazing way of supporting me- even with EDS. Yes there are times that he gives me funny looks because he doesn't quite grasp the severity of EDS. But he is there to guide and encourage. He is great about helping me eat well, move often, and he LOVES buy me clothes when I earn a new size! He has changed this journey called life, weight loss, family, challenges, career... you name it, I am thankful. He doesn't always understand or jump right up but he is always willing to learn and try to understand... never calling me a whiner or a wimp but never aiding me in giving up- rather helping me find a success(or really good excuse) within the struggle. There are days that we both have achey left knees and we turn to each other and wonder "what the heck will we do when we are 50" haha we will do everything we can TOGETHER!
My joints feel old- and sometimes I wonder if I am 60 instead of 27.....but life goes on and I am happy where it is!! I am taking the weight off and keeping it off to avoid even more pain in places that should have hurt so much! I just pray that having kids is successful and safe for my body and that if they have EDS we are able to find them an activity that they love, whether it be physical or artistic....Hoping Jeremy gets his athlete!
Cuz we know that won't be MY gene hahaLife is not easy with EDS as it effects so much- but it does not effect everything! I just wonder sometimes- Am I really in more pain than "normal" people??? I dunno because I am not normal.
I am glad there are so many here now that have so much in common! It's nice to have people to relate to that can understand the little things others may not get. Good luck and KEEP MOVING!
Shawnalee
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Replies
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Holy crap that's LONG!0
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Shawnalee, it's fine. Thank-YOU.
Some more HMS ppl have joined up, including another male.
I just started getting the joint pains recently myself.
I pray for healing but I feel that it is not mine to be cured yet, but to help others.
I do pray and do believe that HMS ppl are gifted in special ways and am searching the world over to see other things that spring out from it.
The Hypermobile males need not be concerned that it is primarily female syndrome, I fathered 7 children lol.0
This discussion has been closed.