It’s been a shitty year

I mean, there were signs. My shoulder dislocated 13 times before I turned 3 years old. My mum used to get annoyed with me at dinner because my jaw clicked so loudly every time I chewed. But it was fine. My skin never healed from anything, and I could do cool party tricks. But it was fine.

Then in 2012 I had a routine surgery, with a spinal block. And a terribly headache followed not long after. But just long enough that they didn’t put two and two together. I had a spinal CSF leak from the anaesthesia.

And it never healed. Because your dura is made of connective tissue. I couldn’t work, I couldn’t study. I just had the world’s worst headache, every day.

For 13 years.

In April this year it all got worse. The headache intensified, strange neurological symptoms followed. I couldn’t stand up. We sought out new opinions. Experts. And in June of this year I was diagnosed with EDS and a chronic csf leak.

Only these chronic csf leaks are almost impossible to treat, and no regular doctors want to touch my case.

A specialist hospital in Germany has offered treatment. But it’s privately paid, and I haven’t been able to work for 13 years.

Every month that passes by my symptoms get scarier and more severe.

I wonder if it would’ve all been different if I had known about my EDS. Would they have warned me about the increased risk of a dural puncture? Would I have been correctly diagnosed with a leak?

So here I lay, I guess, wondering if I’ll ever come out on the other side, or if this is the story of my life.

I’m really bitter guys.