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.
Thank you. I am so incredibly grateful for not only the high quality care I've received during my time here, but also for the little things you do, the things that make me feel like a person, not just a patient.
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.
A bit of a ramble about my rheumatology appointment, how to be a good doctor, and how to be a good patient.
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.
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.