I have hypermobile Ehlers-Danlos syndrome, which is a genetic connective tissue disorder. It often leads to a ton of secondary problems.
For those who are healthy and carefree, you take so many things for granted that I can’t anymore. Here are a few.
1. Breathing. Now, isn’t that a given? We live, thus we breathe (or the other way around?). Every being that is alive breathes, without even thinking about it. Don’t we all?
No. My breathing is often shallow, and breathing causes me pain. Mostly because of a condition called costochondritis, an inflammation of the cartilage between sternum and ribs.
2. Eating. Once again, people eat to stay alive, don’t they? Well, not all of us. I have friends who need to use a feeding tube. I, for one, have a very strict diet, trying to accomodate two different problems: gastroparesis (low fiber) and low blood volume (high sodium and lots of fluids). I can’t eat more than a cup’s worth at a time. Eating usually leads to stomach pain or nausea, sometimes to throwing up. At times, I can be weeks on a liquid diet, without being able to eat actual food.
3. Sleeping. Everybody sleeps, and sleep means feeling rested, right? Actually, the more I sleep, the more pain I’m in. Thanks to my hypermobility, I dislocate a shoulder or sprain an ankle pretty much every night. I barely remember what waking up refreshed means. And thanks to my small fiber neuropathy and arthrosis, some nights I’m in too much pain to sleep at all.
4. Standing up. Do you realize how lucky you are to just get up and stand? To be able to wait in line at the amusement park or at the grocery store? With postural orthostatic tachycardia syndrome (POTS), I’m at risk of fainting if I stand up too long. An unexpected line at the cashier can be dangerous.
5. Walking. Now, if there’s something people do without thinking about it, that’s it! Get up and go, right? Walking hurts me a lot, and the more I walk the more the pain grows. I tore ligaments under my left foot just by walking, and I have arthrosis in most joints. It happens that my legs just go weak, too. I sometimes use a cane, crutches, a rollator or my wheelchair.
6. Showering. It’s part of the routine, quickly out of the way… but not for me. Because of POTS, I need to plan the shower, I often need to use a shower chair, and it always leaves me weak for hours.
7. Cooking. You might see it as a chore, or love it like I do, but I’m guessing you don’t actually think about it. Many days I can’t cook at all. Sometimes, I start a recipe, and I get too weak to finish. There are also many things I can’t do anymore in a kitchen. Cutting, stirring, lifting… all because of injuries in wrists, dislocation-prone fingers and the likes.
8. Working. Everybody needs to work to make a living. But I often can’t. When I can, it has to be from home, and I can’t do a lot. Which is why I’m a freelance editor and translator.
Talking on the phone. Using the computer. Playing video games. Driving.
None of those seem difficult. I mean, what’s more simple than casually scrolling on your smartphone? Well, my arms and hands cramp up, they become sore very quickly, and it’s basically torture.
I could go on, but I think you get the drift.
I used to take all of these for granted, before my condition deteriorated. I knew pain and feeling weak, but it was in no way comparable to now. So I know how easy and normal it is to take the basic actions in life for granted.
I now also know how they shouldn’t be. Enjoy what you can do and take care of yourself!
Annie-Danielle Grenier blogs in French at Ma Vie De Zebra.
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