Young woman with EDS
A ficticious name was used for privacy reasons
My name is Karin and I was diagnosed with hypermobility / EDS on my 18th birthday. My symptoms included tiredness, weak ankles, flat feet, dislocated hip and elbow and wounds that didn’t heal properly. I am now 26 years old and following Higher Vocational Training.
I have experienced incomprehension and injuries for many years. I have received no understanding or clarification from doctors nor from friends and acquaintances. As you remain in a vicious circle of recovery and injuries, it only became worse and I could do less and less.
Cycling wasn’t really possible so I saved up for an electric bike. Even taking the dog for a walk became a problem because my arm hurt even more when he pulled on the leash. (My dog weighs 8 kg so that wasn’t much). I am lucky enough to have a handy father who could find a solution for most things but the downward spiral I was in was not good.
The physiotherapists and my GP could not think up any more solutions and did more to combat the symptoms than to actually find the solution. They did their best but couldn’t do any more. I found Gertie’s address on the internet. I have been going there for a year now and I have to say that it is going better and better.
The therapy consists of a number of exercises that I do in the mornings and evenings. I do them for about a half an hour per day. The exercises are very difficult in the beginning and you have to get used to them. But after a couple of weeks you start to notice a definite difference and they become easier. I was very aware of what you do when you tense certain muscles. After the first few weeks you start to use the exercises more and more in “real” life when, for instance, when standing up and while walking, but also when lifting. These exercises have made me more aware of my muscles and how I use them.
Of course I still twist my ankle or turn my arm wrongly but the big difference now is that Gertie and I then analyse what could have happened and how to prevent it from happening again. A good example of this is my elbow. It has not felt right and has always hurt since I dislocated it a number of years ago. It now feels much better due to lifting and using it slightly differently. I can now walk my dog without problems which is a great triumph for me. My other hobby, nature photography, is now much better. I can take photos the whole day long without my arm causing any trouble. The exercises also make me more stable and stronger.
I have noticed in the last two months that the recovery time for an injury is much faster. At first it took two months before I recovered from an injury and now only about 3 weeks. This makes a great difference to me and means that I can do and dare to do more and more. And, because I can do and dare to do more, my condition is improving. Instead of in a downward spiral, I am in an upward spiral at the moment.
As I am now physically more stable, I can finally think about my future. I know what my limitations and options are. I have also learned how to listen to my body and to act accordingly. I now do things I couldn’t do a year ago and I can enjoy the things I can do more. A couple of weeks ago I even celebrated walking without the need for crutches for a year. Before I started this therapy I needed crutches to walk about 3 to 4 times a year.