Just Because I Had 'a Good Day' Doesn't Mean My EDS Is Cured

It was just a good day. No, I’m not healing or getting better or being cured or whatever. I walked for a day. By that I mean I used my rollator instead of the wheelchair to go to the bathroom and crawl back into bed. I sat on the rollator a lot during these little jaunts.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Ehlers-Danlos syndrome is genetic. It’s a part of us. Just like having blue eyes is a part of you. Some people have it and can do all kinds of stuff and have minimal damage (like how I used to be), and some people are like me and my sons (J was affected his whole life, T was about 12). Our EDS affects our whole bodies. Collagen is in every part of the body, skin, joints, organs, vessels, muscles… EDS decides which part(s) will be affected.

 

For my sons and me, it affects our veins, making them stretchy and causing severe blood pooling which is called postural orthostatic tachycardia syndrome (POTS). We get dizzy spells, nauseous, blurry vision, blue fingers (Raynauds phenomenon and/or poor circulation), lightheaded and I faint on a regular basis and the boys “black out,” which means they can’t see for a time. EDS affects our joints where we dislocate, hyperextend or are “double-jointed,” and since muscles are affected, no amount of exercise “cures” it.

My son biked 10k daily, I biked 10k and ran 5k daily – we were both solid muscle. We still dislocated and blacked out. He was hit by a car biking because he blacked out. I have almost been in car accidents because I would black out. My youngest and I have scoliosis with it. I have mast cell activation disorder with it. My eldest and I have chronic myofascial pain syndrome (CMPS) with it. My sons have digestive issues with it (borderline gastroparesis). It’s not one thing. It’s a multi-system disorder.

It’s not going away, people. I’m not being hopeless or martyr-like. I’m being realistic. It is what it is. My eldest and I have workers that help us wash but I take a little walk around my house and you want to know if I can travel or take visitors or this or that. I appreciate your love and wanting to see us, but I’m here to burst your bubble – it isn’t going to happen. We are blessed on few days when we can do a few things, so I posted. There are good days and bad days, but there are no “I’m cured” days. It was just a good day.

Thinkstock photo via paperteacup.