Ehlers-Danlos Syndrome is an inherited genetic connective tissue disorder which affects collagen in the body.
Collagen is the glue that supports many structures in our bodies like skin, ligaments, muscles, organs and blood vessels. People with Ehlers-Danlos often have problems with ligaments that are overworked and stretched because of collagen issues. This makes their joints extra flexible and thus hypermobile.
How do people with Ehlers-Danlos deal with this?
To manage all of this extra flexibility, we need to focus on strengthening our muscles through low-impact exercises like swimming or cycling. We are told to avoid activities that might put too much strain on our joints. Exercise is possible. It also becomes a two-edged sword because it doesn’t take too much time to wear us out.
Case in point, right now I can’t swim as it is winter in Florida. I’m biking with Mellie and so far I can only do 15 minutes. Every day when we bike our route and I’m huffing to get back, I think, people in WWII biked everywhere all the time. What is MY problem? My problem is two-fold. One is my calves are getting reacquainted with biking. I constantly remind myself that my new life IS small bursts of exercise due to the breakdown in my body.
What are some things people don’t realize we are doing because of Ehlers-Danlos?
One thing I do is constant shifting to find the best position for my back but then my knee hurts so shifting again to correct that. Constant shifting is a norm with EDS. Lots of pillows are the norm now to prop hips and joints.
I used to buzz around a store shopping but now when I go (which is rare), I find myself asking to push the shopping cart so I can lean on it. It gives me stability so I won’t fall.
Having to consistently shift my position when sitting to support my joints means it seems I fidget all the time. When I was younger my mom noticed I never sat still. I’m sure some of that was my age but I’m starting to see the genetics that started years ago.
A fun thing a lot of us do is picking things up with our toes. Remember we are flexible! But not having to bend and use our joints in that manner means we can use our toes to help, too!
Playing my instrument (clarinet) or holding my phone a long time means my thumbs start getting very annoyed with me. The thumb joint pops in and out and causes pain so I shift a lot when holding things.
To help with joints not popping in and out frequently, you may see us sitting a lot. This is a double-edged sword since it helps with not popping joints out but it also means we aren’t moving (burning calories) and for some of us this means extra weight possibility.
And lastly, I have learned that no matter if I jump up (like I could do when young) or get up very slowly from sitting, blood rushes to my head. I’m learning to anticipate this and have something to hold on too so I don’t fall over.
It’s all about learning what you can and can not do.
However, this is not an article to be sad. This is an article on building confidence and peace. Life has shifted dramatically for me in the past 10 years and I am not as active as I once was. I feel like I can’t lose weight but I’m eating healthy. It is hard that I can’t exercise as much as I used to but when I get out I enjoy it. I sleep when I can and count my blessings that I’m home to work around my irregularities in my body. It is all about having a perspective of life.
The best thing you can do for your health is educate yourself on what your health needs are and then find as many natural solutions as possible. I am blessed with a family that works with me and all my health issues. They put up with my weakness, lack of energy to do things and inability to go places often. We are home a lot together and we all get along so that is a tremendous blessing.
Whatever your health needs are today. Look to God for strength, wisdom and patience. Ask your family and friends for help when you need it and learn it’s okay to say no and be home.
Ehlers-Danlos Syndrome is not will known and I am still learning about it but I can honestly say if this is the cross God wants me to bear, then I want to do it with joy and patience.
“For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end.”
Jeremiah 29:11