CLH Words

The weather gave me a flare up, and I am grumpy about it. I am writing this on a day where my chronic pain is worse than normal, or as I tell my friends, my bones are angry today.  I don’t have anything profound to say here, just an aspect of crip life that I don’t see shared outside of chronic pain circles.

I have Ehlers Danlos Syndrome (aka EDS), a connective tissue disorder. Most people who have heard of EDS, which despite it being fairly common few have, think of it as just being extra flexible (the technical term is hypermobile). While this is one of the key traits of EDS, it is not the only one and by far not the one that is the most annoying. For me, it is less that I am extra stretchy (though some of my joints are, but not all) and more that my joints do not like staying in place. While my joints don’t tend to dislocate in the way that most people think of, they love to be partly dislocated. My shoulders, for example, are almost always out of their sockets unless I hold them in place with my muscles. Whenever I wake up and stretch, I feel my shoulders– and several other joints–pop back into place. 

This symptom is annoying for a few reasons. For one, it means my limbs fall asleep easier  due to positioning them wrong, and  that I have to use my muscles to constantly hold my bones in place instead of, you know, being muscles. However, the more annoying effect of EDS by far is the pain. Joints do not like being out of place so consistently being partly dislocated leads to my entire body being sore.

For the longest time I assumed everyone’s body hurt all the time and learned to ignore it. Now, most days I am at a two or three on the pain scale. If I stretch and go slow and use my muscles I can go about my day barely aware that I am in pain. But then there are bad days. On bad days, I am in a lot of pain. I can usually work around it, but I am slow and my head is foggy from it. I may not be able to sleep because I can’t find a good position to avoid my bones from dislocating. It is rough.

               The weather is one of the many factors that affect my joints. Anytime a front moves in, I can feel it. My joints get loose, either dislocating easier or I have to work harder to keep everything in place.  I always feel like the trope of the old man saying, “there’s a storm a brewing; I can feel it in my knees.” There will be days when a system moves in that I wake up feeling fine and then as it slowly moves over I feel my joints falling apart. My friends all know that whenever there is a  big shift in temperature or a large storm, I am feeling worse than usual.

               Now all this is not to complain or say that the weather causes my disability. There are many other factors that affect my EDS and various other disabilities. I am also not a medical expert. I am just someone living with a disability. The weather affecting chronic illness is something that many disabled people share in our communities; half my friends will complain about the weather fucking with them. I wanted to share this as an aspect of crip life that able-bodied people may not think about. So the next time there is a big change in the weather, maybe send some kind thoughts to the disabled people in your life.