Just surviving

It has been quiet on my end. It is a time for relaxation and vacation. Or so it should be!  For me it is all that but also a time to survive each day, getting through, day by day, creatively. 

Last month I ventured with my husband and son to Hungary for our annual vacation. The trip to Hungary would take at least 14 hours by car. The week before our trip I tried to rest as much as possible gearing up for the trip. It had been decided that the trip would be driven over two days with a stopover in Regensburg, Germany. This way, frequent rest stops, would hopefully be less severe on my body and Ronny could do the driving all himself. This way, I would still be human more or less once we arrived in Hungary and I would not need waste days recuperating from the trip! Of course, I left with an arsenal  of medication and my wheelchair as my faithful companion. 

You see, dear reader, an EDS patient, gets tired and pain from simply sitting in one position during a car trip. The life of an EDS patient is not simple as we need to recuperate from most things we do. That is why most of us use a wheelchair to help save energy to get through the day and to minimize the pain we experience. Everything an EDS patient does takes far more energy than a healthy person and everything we do causes pain. You can see how we are always living in a vicious cycle.

What most people don't understand is that EDS is far more than just dislocating our joints. Connective tissue is everywhere, in our joints, our organs, our skin. Connective tissue is just that it connects everything in our body, keeps it all together. An EDS patient has faulty connective tissues. For example, connective tissue keeps all joints together. An EDS patient relies on their muscles instead of the faulty tissue, therefore using more energy than healthy people. The autonomic system is under extra stress and gets out of bound sending wrong signals. The digestive system etc does not work as it should. You see EDS is much more than dislocated limbs.

Now you may understand that I focused on getting through the vacation, trying and enjoying it all on my own terms. That meant that I could spend less time with friends, less time with other important things. 

You may think that all I do, I must be healthy. No dear reader you are so wrong. Everything I do comes at a price: pain, discomfort, exhaustion, fevers, deregulated systems..... A price that not only I feel but my family as well!

I choose to give up valuable time for my work as president of the patient foundation. I give up my time and that of my family. I also pay the price heavily. Behind close doors, I have excruciating pain, am at times so tired that lifting my head up is an immense effort. This is what I choose to do not to show the world, not to show friends, not to show patients. But belief me, I am not the super woman most people think I am. I am an Ehlers-Danlos patient who chooses to live life as much as I can and who chooses to pay the price for it. I am trying to live in harmony with my condition and choose to do my suffering behind closed doors.

All I ask from the rest of the world, don't judge a book by its cover. I and other patients may not look sick but we are just trying to survive day by day, hour by hour, each on our own way, on our own terms!

On Saturday 7 September, the foundation is hosting a Bingo Benefit! Come and/or support us, more info here:  http://www.bindweefsel.be/?q=node/117