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.

2019 Update

I've been absent for a while. Honestly, this is the first time I've even been able to go near my keyboard and to attempt to write. It hurts, but in a good way. It aches the way that muscles do after physical therapy. There's that sharp pang followed by a sigh of relief after relocating a joint. 

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.

Counting my blessings

Yes, now my days are a bit different. Sometimes I have days when I can't even get out of bed. Sometimes I have to stop doing the things that I love, and find another focus that is something more doable for my body. Sometimes my days are filled with doctors and pills, procedures and hospitals, and sometimes they tell me things that I don't want to hear, but sometimes they do.

Last night was a bad night. So was the night before, and in the small hours of the morning, I said a quiet, wordless prayer. And today, today was a good day.