EDS: Every Day a Surprise. How I deal with those surprises? Movement is my best medicine.
Hi everyone, My name is Josine and I feel honored to be able to share my story here. All the brave people on this page who share their challenges and daily struggles and how they overcome them are a true inspiration to me. I am a Dutch mother of 4 (2 of my own and 2 'presents'), and I have Ehlers-Danlos syndrome(EDS). This is a connective tissue disorder. The connective tissue of people with EDS is not as strong and supportive as it should be, resulting in all kinds of health issues. Connective tissue is everywhere in our body, like a spider web, influencing everything: joints, organs, brain, skin, etc. People with EDS are also hypermobile, which makes their joints unstable and their muscles permanently strained from trying to keep the joints together. My biggest problems are my heart (hypermobile valves, enlarged heart, heart rhythm disorder, etc), my intestines (to keep it short: they just don't work) my spine (scoliosis, arthritis, discopathy, hernia), vascular malformations, and other ongoing issues like joint (sub)luxations and the weirdest injuries. EDS also stands for Every Day a Surprise because there is always something going on and people with EDS constantly have many health issues to manage. This is challenging, especially because there is no case manager or other main doctor that guide us, we need to manage all the different medical issues ourselves, we have to explain to doctors what is wrong, what kind of treatment we need and we are constantly advocating for the right care. Another factor is that most of the symptoms are invisible, which makes it hard for people to understand what we have. I get this because for the most part, I don't even know what is going on in my body so how can I expect somebody else to understand? There is always something going on but what helps me the most on a physical and mental level is movement. I used to work in sports, but could not combine this with my medical issues. I used to specialize in pre and postnatal fitness and was a CrossFit coach. I had to quit because I was always injured. I missed CrossFit but I thought that was not possible anymore. After an intensive rehabilitation program, I learned to move differently, walk differently, lift differently, and even sleep differently. After that, I did some fitness in a regular gym but did not enjoy it as much. I missed the variety, the challenge, and the community. After a while, I decided to try a new CrossFit box where nobody knew me and I started from zero. I scaled most movements but was very happy to be able to do it again and slowly I realized I could do more and more. This was half a year ago and at the moment I am working out almost daily and love it. Of course, there is still chronic pain and chronic fatigue but I feel that my pain is less, my joints are more stable, my muscles are stronger and my posture improved. But above all that I feel so much better in my head. I am happier, I feel stronger because I constantly challenge myself and I am part of a community that is very positive and supportive. Even on days when I have lots of health struggles, I feel better because I know there are also things that I can do and I am more than a patient. I think I am also a nicer wife and a better mother because of this. I hope to set an example by showing my kids that movement is fun, makes you strong, and makes you feel better. My sons also show signs of EDS and I am glad that I know what they have and know how to advocate and care for them. My own diagnosis took a long time but knowing they are already being monitored at this young age is a good feeling.
I know some people feel frustrated when they see my pictures and hear mysteries because they would also like to be more active. Movement can also be frightening when you are scared of injuries, an increase in pain, or more fatigue. I know better than anyone how this feels and totally understand the fear but I am always hopeful that people are still willing to try. You don't have to do CrossFit if you don't want to, but try to look for things that you enjoy, and that you can keep up with. Everything is a win: more steps in a day, more movement in or around your own home, a training program guided by a PT, swimming, cycling, pilates, online workouts, rolling with the wheelchair, whatever works for you. It also helps to find people who can support and motivate you. You don't have to go together, supporting each other online or through the phone is also helpful. And make sure you are proud of yourself for every activity and every time you try. Even if it does not work out the way you planned, it is not about the results but about how it makes you feel.
Next to my personal fitness and health journey, I am also trying to improve the sports and movement options for people with chronic diseases and disabilities because I manage a 'living lab' in Amsterdam. I am glad to have this opportunity so I can combine my professional and personal experience and put it to use to help others. Anyone who would like to connect and share experiences is very welcome to look me up on the socials. I would love to meet people with the same passion for sports but also people who would like to be more active but don't know where to start. Contact me and hopefully, we can help and support each other.
