I should be studying. I should always be studying. But I’m writing out thoughts while enjoying this lovely spring weather.

I’m at a weird point in my life. I recently found that my numerous joint troubles and other vague somatic complaints can be summed up in a single syndrome: Hypermobility Joint Syndrome. Basically, the connective tissue necessary to hold my joint in their sockets is almost non-existent and weak, and my muscles are then being joint holder-inners and muscles, so when they wear out… my joint dislocate. In addition to weak joints, people with HJS are always cold, always clumsy, and are at risk for a whole slew of scary things like chronic pain, early-onset arthritis, and mitral valve prolapse.

I’m not allowed to run anymore, which has unfortunately killed my dreams of racing Usain Bolt someday, and becoming the ultramarathon queen of America. Darn. But I can weight train to make my joints stronger, and then maybe I’ll be able to survive without handfuls of pain pills or a wheel chair.

I realize that there are significantly worse things that could happen to me, but it still sucks to know that at 20 years old, I have limitations that will never, never, ever go away. And I have to work harder than the average person to reach a level of functioning of an average person.

All right. I’m done feeling sorry for myself in that regards. At least it’s not cancer, yeah?

Recently, I reached the six month point of a terrible breakup, and it’s got me pretty down. I acknowledged that fact by reading a bunch of old letters, and it was heart-rending and I regretted it. I am daily haunted by by the guilt of how I dragged the break-up out by never giving him a straight answer. I just hope that the poor way I handled things never turns him off to the idea of love, because someday, someone will cherish him.

But as for me, I don’t attract men. Only women. And the occasional autistic man (he asked me out on a date. I said no. It was awkward), and everytime I think that maybe I’m liking the idea of dating again, I am held back by the thought that I may break someone’ heart again. My own sadness and disappointment and hurt I can handle… when I cause someone else’s, I just.. I just can’t. And since my future hopefully holds a several trips with Doctor’s Without Borders, I don’t think any kind of relationship would be a good idea. It would involve being away for nine months at a time with no leave, and I can’t bear to make someone wait for me again.

Sometimes I hate my ex. I was not touchy and pleased to be that way, and he changed that. Now I find myself craving physical touch, and there is no where or one I can go to for it. I think that the Song of Solomon had it right when it said, “Do not arouse or awake love until it so desires”, because the lack of it in my life has left an achingly vacant hole that keeps me up at night. Granted, I don’t regret any of the time I spent with him. Our relationship was a beautiful, lovely thing that I look back on fondly, but I wish that my physical desires had been kept under wraps in order to spare me this awful need now…

I sure hope God knew what He was doing with that scenario, and I certainly hope He is making it better for Jonathan too.


3 responses to this post.

  1. Hey! I’ve got HMS too, and was also diagnosed in early-twenties. It’s a really sucky condition, because it kinda affects everything, but you’re right – it’s not deadly. That’s what I keep telling myself (although sometimes it’s useful to whine about how crap chillblains are and how evil physiotherapists are for making us do daft exercises!) There’s an awesome book by a lady called Isobel Knight, if you’d like to read more.
    Hope your life settles down a bit, and take care!


    • Hey, thanks! Sometimes, the best thing to know is that I’m not the only one, you know? What is the book about?


      • It’s a book about how to live with HMS, what causes it and how other people feel about it. The woman who writes it has HMS or EDS herself, so she knows how sucky it feels. I found it useful because it made me feel a bit more normal, because when I was first diagnosed it felt a bit like my body was broken and betraying me, which is a really isolating feeling. Isobel puts it across in such a way that you sit there going “Oh my god, that’s how I feel every morning!!!” It’s got a mix of practical ideas, therapy ideas and just good old fashioned anecdotes where bendy folk like us do something and the rest of the world react with sheer horror or amazement. I made my GP flinch away by hyper-extending my fingertip joints! (That’s the least gross “trick” that I can do!)
        Also, I don’t know where you’re based, but the HMSA schedule meetings in the UK for bendy folk, and there’s a lot of international members on the forums too. That way you’ll never be alone! (Also, there’s support groups on Facebook.)

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