My 5 Favourite Things for Surviving Summer

Surviving summer is always tough. There’s the heat, the humidity, and most of all, the expectation that you spend all of your time outside pretending that you actually enjoy it. Add chronic illness into the mix, and it’s tempting to find a commercial walk-in freezer and never leave it. These are my favourite products which have helped me this summer.

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Grieving and Hope

My life will forever be changed by Ehlers-Danlos Syndrome and its sister diseases. I will never be able to go back to life the way it was a year ago, and I had to mourn that life. I had to face the reality that I may never dance again, that I would have to put work on hold, and defer my university studies. I had to confront my fears that maybe this was psychosomatic, that I really just had Munchausen’s and was somehow making myself sick on purpose. But I had to stop grieving, because I needed to fight for just a little longer.

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Getting ahead of myself; or, a lesson in spoon-budgeting

I like to have my own little way of conceptualising the spoon theory, because some tasks take much more out of me than others, but I am usually able to complete roughly the same number of little tasks per day. For me, I visualise this in the form of teaspoons and tablespoons. On a normal day, I probably have about 4 tablespoons, and about 6 teaspoons.

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Progress

This morning, I woke up at 5am. Normally, like any young adult, my reaction would be to groan at waking up at such an ungodly hour, but today I was ecstatic, I slept for five consecutive hours last night! After the week I’ve had, where I’ve been lucky to get an hour total, it felt absolutely amazing to get some proper sleep.

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Wake-up call

My pain reached the point where I was actually in tears, struggling in vain to convince myself that I was fine, hoping that if I just told myself to be strong it would go away on its own. Luckily, I have some amazing people in my life who know the difference between when I’m being brave, and when I’m just putting on a brave face.

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Sanctuary

Because of my health I’ve been holed up in my room more often than not, so after I had my endo surgery we came up with the idea of creating a little sanctuary space for me upstairs.

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Harsh reality

I was really hoping that I could start out this blog all positive, but I guess that’s something that I’ll have to accept, sometimes illness has other plans. I just have to do my best to work with what I’ve got, if I have less spoons today than normal, that’s ok. Hopefully there’ll be a day when I don’t have to count my spoons quite as obsessively, but until then, I just need to come to terms with the fact that my daily supply of spoons is finite, but it doesn’t mean that my daily amount of happiness is, just, for now, I have to find it in different places.

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The Journey Begins

If my journey was a book, I guess I’d call this blog Chapter One after a long, convoluted, and confusing Introduction.

Yes, I do realise that sounds trite as anything, but my health journey has been confusing and all over the place, and I’m still trying to make sense of it myself.

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