Blog June, Day Twenty Eight

So I know I didn’t post yesterday, but unlike most of my other missing posts, I have good reason.

I have been diagnosed with Joint Hypermobility Syndrome (JHS), although I suspect I have Ehlers-Danlos Syndrome Type III (hypermobility), also known as EDS. Due to the nature of my disability, a lot of my joints become quite painful, particularly after overuse. I also get tired a lot. Right now I am working for three full days, spend a fourth day doing physio and hydro therapy, and running errands. As it stands, with four full days of activity per week, I am constantly exhausted.

This week I have been very busy, and have just been doing too much. Mid-afternoon Wednesday, my wrists flared up so badly I couldn’t type. They ached all afternoon, even when I was wearing my wrist braces. I should have taken that as a warning sign and gone home to rest, but I insisted on going to an ALIA NewGrads event at the State Library of WA. By the time I got home at 8pm, my whole body ached, and I was completely drained of energy. I didn’t even have the strength to stand up in the shower. Once I managed to clean myself, I went to bed and rested for the evening (even though I wouldn’t be able to sleep for hours. Insomnia is a common symptom of JHS and EDS).

It took a bit of convincing from my other half, but eventually I decided that there was no way I was going to be able to work tomorrow. I had to rest. And it is a good thing too. All of Thursday I was drained, in pain from walking for only short times, and my wrists were flaring up again after just 5 minuted on the computer.

Today I am much better. I am wearing both of my wrist braces to type, and the pain is manageable. So long as I rest tonight, I should be fine to go to Supa Nova tomorrow.

I know I talk about disability as if I am an old hat, but the truth is that while I have had symptoms of JHS since I was about 10, it has only affected me to the point that it has been disabling for the last three years. And the fact is that while physio and hydro has helped these last few months, my body is deteriorating. I can’t do everything like I used to. Even three years ago I would be at uni four days a week, and be out and about all weekend now worries. Even with my wheelchair, it is less about the walking, and more about the physical exhaustion. It is hard for me to accept that I will never be able to work full time. It is even harder for me to accept that in order for me to work just three days a week, I need to space them out, and rest on my days off.

When I got engaged to Sam, a big thing that mattered to me was that I wanted to support her. Due to Sam’s own disability, she can’t work at all, so for us to have any kind of life, I need to be able to work to support us. I know her family is well off, and they can support us if needed (they already pay for all the utilities, as well as for a cleaner once a fortnight to do the heavy cleaning I can’t do), but I wish that wasn’t the case. I wish I were able to support my family, by my body isn’t letting me.

Either way, I love my job, I love working, and I have every intention of working until I can’t any more.


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