Nearly nine weeks ago I left work early after feeling like I was going to faint. I got my Mom to come pick me up, and I went to bed. I thought it was the same illness going around work, that I would bounce back after a day better than ever, just like I always do.
Nearly nine weeks ago, my life changed. I now have what is known as an ‘invisible disease’.
When you look at me I look exactly the same as I always have, but I’m not. Nine weeks ago I was working and studying full time. I managed to keep my social life going as I worked my butt off to achieve my dream. Today, I consider it a good day if I can make it out of bed without wanting to fall back into it and go back to sleep.
I’ve gone from that girl who gets out of bed when her alarm goes off with a fully packed schedule for the day, practically bouncing with excitement and energy with a smile on my face; to a girl I never would have imagined myself being. Pyjamas on as I face another day laying on my bed, surrounded by the quietness of t.v. shows with volumes that barely whisper for fear of being too loud. The person who turns down social gatherings because I don’t want to admit that I’m just not strong enough anymore.
I’ve been diagnosed with Chronic Fatigue Syndrome (CFS) or, as it’s also called, Myalgic Encephalopathy (ME). I’m looking at a minimum of two to three years before I might be better, the current statistics say there is a 7%-10% chance of full recovery. It’s something my grandmother has lived with since my father was a young child. A vast majority of people who suffer from CFS/ME later become diagnosed with depression. The odds are not in my favour.
No amount of research has been able to help, for something that so many people suffer from there is scarily little research. They don’t know what causes it or have much of an idea as to how to cure it. Everything seems to be a guess, an assumption, added to a checklist of things I never realised I met. Symptoms that pile on top of each other, each more upsetting than the last.
Things like light and sound sensitivity, muscle pain, exhaustion, dizziness and memory problems, just to name a few.
I’m still trying to come to terms with this myself, what it means for me and the plans I’d started to make for next year. How to deal with going from two full-time commitments to considering it a good day if I can manage to make myself a hot drink. My life has changed, and I don’t know how to deal with that... let alone tell people I know about it, because what am I supposed to tell them? Tell you?
That going for a walk to one end of my property and back is guaranteed to land me in bed for the next day, unable to find the strength to leave. That I can’t go out because I can’t concentrate well enough to drive safely. That yes I care, but, on a bad day, please don’t talk to me because the sound of your voice is too loud and it hurts. That I can’t look at my phone because the brightness is too much, let alone trying to remember what I was going to say.
Yes, I have thought about messaging you time, and time again, but the thought slips through my fingers as quickly as melted butter on a hot summer's day. Abandoning me before I can act on the thought or even lift my phone to find your name in my contacts.
I forgot the colour red the other night, a colour that’s been ingrained in my brain since I could talk, reinforced by years at school, one of the three base colours. I was staring at it, but heavens forbid I could tell you what it was. I was about to say a word and it fell from the tip of my tongue into a void never to be heard again. I struggle with the simple task of remembering what I stood up to do, losing things the second I put them down.
I woke up this morning swearing that it was Monday, no matter how many times I was told it wasn’t. Confused when my father told me it was Tuesday, struggling to remember that I had to do a blog post today.
The main reason I decided to write this post, was real to say that I’m sorry. The quality of my blog is decreasing, the length of my writing rapidly shrinking, the motivation to do this null and void. My health has taken a nose dive and with it everything I care about.
I’m not going to stop updating, though, it just might mean that things get hectic, that posts might be late, or a mere 500 words shoved into a document deemed good enough by my exhausted brain. I might update on the wrong day, because Monday is Saturday, and Tuesday is Monday, and my brain just can’t seem to get it right.
I remember things to forget them two seconds later, start a conversation to forget what I was saying midway through, type a sentence to stop and stare, trying to figure out if it makes sense. Pause mid-paragraph to re-read and try figure out where I was going with this entire thing. (I have no idea, in case it isn’t obvious).
The truth of the matter is, I am sick, my life has changed, things have to be different for me because my health won’t allow anything else, and it’s time for me to start accepting that. Even if the first step is a blog post I can share with people so I don’t have to try to explain this time and time again.
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