There’s a lot floating around on the Internet about the importance of self-advocacy, and I see a lot about what that can look like, but not so much about what to do when everything goes wrong. I answer: What is your biggest regret? What is a common miscommunication? What is a recent success?
Like most people, 2020 was a bit of a write-off for me. I had so much on my plate that something had to give , and unfortunately it was this.... I don’t want to go into too much detail, because I want Chronically Clumsy to be a constructive and motivating corner of the internet, but I do think it’s important to discuss what happened so I can share what I learned.
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.
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.
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.
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.
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.
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.
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.
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.