A Spoonie’s Guide to Working From Home

(without going insane!)

Why I continue to dance through the pain

The one thing in my life, which has always been constant, is dance. I've spoken on here before about my love of dance, how with each new goal achieved I was clawing back my pride in myself and my body. The question I'm asked all the time, by my family, friends, coworkers and other dancers is why, with my health the way it is, do I keep dancing?

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.

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.

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.

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.

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.