Every morning, when I wake up, I have to pop my joints back into place. Sometimes I’ll make light of it by singing, “the hand bones connected to the arm bones,” as I’m popping my wrists back into place. Other mornings, I don’t even have the strength to smile.
Once I have my shoulders, knees, hips, hands, and elbows all back into place, I can begin to stand up. I have to stand up slowly because standing up too fast will make me dizzy. Which will land me, if I’m lucky, laying back down for a few minutes or, if I’m not lucky, face first on the floor.
Once I get up and start my day, I begin to evaluate what my pain levels are at. This is where my day begins and sometimes where it ends also. Some days, I can get up and be productive. Other days, making it from the bed to the couch is my biggest accomplishment.
Most days, the people around me don’t realize how bad things are because I’m good at masking it. I function at pain levels that most people wouldn’t even consider getting out of bed for.
Every month, I keep a bullet journal tracker for all of my medical stuff. I’m able to track my pain and dislocations. Because of this, I’ve been able to notice patterns and specific triggers. But what I’ve also learned by keeping these trackers is that I’m really good at not showing how bad things are.
My body moves in weird ways. Ehlers-Danlos Syndrome effects the body’s production of collagen, which effects the stability of connective tissues. My joints aren’t stable and that lack of instability causes dramatic amounts of pain. But this is just some of the instability you can see…
There’s also a lot of instability that you cannot see. Because my connective tissues are weak, Ehlers-Danlos has led to the development of other conditions. I also have a chiari malformation and idiopathic intracranial hypertension. These conditions have begun to cause neurological deficits due to pressure on my brain and excess spinal fluid.
I tell you all of this, not to ask for pity (please, don’t feel bad for me), but to raise awareness.
A lot of times, we (people with chronic illnesses) pretend that we’re doing okay in order to not make the people around us uncomfortable. But 9 times out of 10, when we’re telling you we’re okay…we’re really not okay. But because people don’t know how to respond when we’re honest, we just pretend that everything is fine to avoid the awkwardness. But the thing is, it’s okay if you don’t know what to say because we don’t know what to say either. It’s a hard thing to deal with. But we’re the ones living through it everyday. So if your uncomfortable with it, just imagine how we feel…
You never know what someone is going through. You never know what is going on behind the scenes in someone’s life. It costs zero dollars to be kind, so just do it.