What’s Wrong With Me, Anyway?

I make comments (mostly jokes) now and then, but I don’t usually talk about my health that often. At least, for someone who has been so affected by these issues over the past few years, I don’t feel like I talk about it much.

Honestly, I don’t think most people really want to know and I don’t like to impose myself on anyone. It’s complicated and a quick “Oh, I have such-and-such” isn’t going to cut it. I don’t want to waste my time trying to explain this to people who won’t try to understand it. I don’t want people to feel sorry for me or do anything. It’d sure be nice to feel understood though. So, here’s a short (seriously, this is the short version) explanation for anyone who is willing to take a few minutes to try and understand.

What exactly is my problem?

Well, that’s a hard question to answer. The genetic disorder I have is called Ehlers-Danlos Syndrome, but it’s the symptoms of the condition (not the condition itself) that is causing me problems. People can have EDS and not have the same issues I’m having.

I have crappy connective tissue. If you don’t know what that is, it’s what holds your body parts together. It’s in your entire body. The type of connective tissue I have an issue with is found in skin, tendons, ligaments, organs, and blood vessels (among other things). Having a problem with connective tissue means you can have problems in any area of the body where this connective tissue is found.

My biggest problem is my ligaments and tendons don’t work correctly, so my joints can’t stay where they’re supposed to.  For instance, my left shoulder likes to randomly fall out of socket. My most obnoxious issue is that my spine is all sorts of jacked up.

Am I sure I have EDS?

Yes. I’m sure. I went to a geneticist. EDS is a genetic disorder. I have other family members who have now been diagnosed with this, which further verifies my diagnosis. I realize EDS sounds insane (and it is) but there’s no question about whether or not I have it.

So, I have some neck pain…so what?

I don’t care that much about pain. I mean, I was the person flirting with an EMT after I sawed off part of my thumb. (I’m thinking all the blood might have turned him off…) I soldier on through migraines. I had two wisdom teeth pulled without effective anesthesia. I can handle pain.

The problem is when my neck acts up I get headaches that make a migraine feel like a paper cut. (I get migraines as well and these headaches are so. much. worse.) The pressure in my head makes it feel like my eyeball is going to pop out. I can barely stay conscious. I can’t eat. I can’t think straight. I vomit if I sit or stand up. My vision gets blurry sometimes. They typically last for two or three days.

Sometimes, I get these headaches weekly. So, yeah, being completely out of commission for up to 3 days each week is a problem.

Why have I suddenly developed this problem?

It’s not sudden. I’ve been dealing with this stuff my whole life. I just don’t talk about it and it was a lot more manageable until recently. The biggest “new” thing is those headaches are a lot more frequent, more severe, and last longer than they used to.

Why did I stop working?

I was getting too many headaches. I couldn’t be dependable and it was getting almost impossible to focus on my work. The two things that bring on my headaches the most are driving and having to hold my head in one position (things like turning to look at someone while having a conversation or working on a spreadsheet). I went to the theater to see Catching Fire and wound up with a headache for 3 days because we sat slightly off-center in the theater. It’s ridiculous.

Why don’t I just go to the doctor?

Gee, I knew I forgot to do something. /sarcasm

Why don’t I just try *insert treatment here*?

Oh, probably because:

  • I’ve already tried it and it didn’t work.
  • It’s contraindicated  for someone with EDS (it could do more harm than good).
  • I’m broke and that treatment is expensive. Are you offering to pay for it?

Am I going to “get better”?

That depends on your definition of “better”. The EDS isn’t going away. There’s no cure for that.

I’m hopeful that eventually I’ll be able to manage the headaches better. Because of the underlying cause, I don’t foresee them completely going away. Sure, it’d probably make other people feel more comfortable if I spouted all that, “I’m going to fight. This ain’t gonna lick me. I won’t stop until I’m cured” stuff.

Why set unrealistic goals and be disappointed? So other people feel more comfortable with me? It boils down to balance. I try to balance finding the most efficient/effective way of managing this while also living my life. If I’m not living my life, then what’s the point? I can’t live my life unless I accept that I have a few limitations.

I’m very optimistic about the future. I’m pretty well convinced that in the future we’ll just be 3D printing body parts as they go out. But, none of that is ready today. For today, I’m going to accept that this is just how things are for now and not beat myself up over it or push myself beyond what I’m able to do. As a chronic over-achiever, that has been the hardest thing to do.

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