A Letter To My Chronic Illness
By Sakara | @sakaradee | June 29, 2018
A Letter To My Chronic Illness
I am writing to say thank you. I do not really know who I would have been without you as two of you have been with me from birth and one since I was 5 - I would have changed a lot since then anyway, M.E. or no M.E. So thank you for helping to make me strong and determined as well as teaching me how to face a few of the worst struggles in life before I was even out of primary school. Thank you for making it difficult to make friends; for making any form of education a struggle and, hang on: there's something wrong here. I can't do this. Standing, erm, we needn't go as far as actually standing, need we? Maybe... Sitting? Yeah. Sitting up to you and saying thanks and appreciating all that I have gained from living this way was supposed to make me feel better. It hasn't.
Would you understand a little more if I told you a bit about my day? How I wake up feeling like it's time to go to sleep? Okay then, we'll start there.
Sometimes when I wake there are a few moments of 'Ahhh, don't feel so bad today!' which quickly passes into 'My mistake; still dying.' the moment I try to sit up. Other mornings (or should I say afternoons?) it's instant. I bury myself beneath the quilts and squeeze my eyes tight shut against the evil light invading my room. A few times my thought of 'No! Not another day for me to face!' has made it's way into this world through the nonsensical babbling of 'No! Can't won't do it Kara stay here no school, no move!' which is rather embarrassing in cold print as it makes me sound like a four year old who hasn't even mastered the full length of her name. I'm not at all like that in real life... Honest. Okay I admit it, maybe I am on the odd occasion when 17-year-old brain function becomes too much for me and I start acting like a toddler completely against my will.
The next stage of the horror of awakening to find being 'the girl in the wheelchair' wasn't just a bad dream is sometimes 'the remembering'. I have never drunk alcohol - aside from that one time when I decided a J20 with a nice little shot of lemon aid was far superior to 'bucks fizz'- but trust me, I have a strong fellow feeling with any who dread checking their phone in a hung over state after drinking to excess the previous night. I say 'fellow feeling' when that may not be quite right. I know how they feel but I have no empathy really, or even sympathy. I consider my current predicament far, far worse. Fake Sakara-Drunk, fake Sakara-High, Sakara-please-tell-me-you-didn't-go-on-messenger-as-well! You know my 'toddler episodes'? Well, losing the power of reasoning can also make me appear drunk or high then later, severely hung over. All this without even the fun of a somewhat questionable party!
The one thing that now worries me a few times a week is getting a little 'tipsy' at inappropriate moments. Since I don’t physically socialise all that much, ‘the remembering’ is usually limited to messaging apps. This is a cause for concern since, in September of 2016, I started on-line lessons where I am one part of a virtual class with about five other students and a teacher. Us students mostly communicate by (you guessed it) a text chat box. I will allow a pause here for dramatic effect. I have many funny stories relating to this in which I entertain my classmates with irrelevant rambles about my cat or just say something vaguely relevant to the topic but so ridiculous it sets me off laughing and means I end up missing a good few sentences worth of learning and have to ask the teacher to repeat a question here and there. Sadly, I can not relate these tales as I have lost most of the key details. That’s another side effect of living with you all: forgetting.
Something I doubt I will ever forget are all the little things. Struggling to eat, walk or read. Getting stuck on a word and repeating it until someone snaps me out of the cycle; stammering, heart pounding, crying… It’s difficult. It is beyond difficult but somehow, it always ends in (somewhat hysterical) laughter.
I feel as though I am nearing the end of this letter now. Thanking you didn't work but I feel I may have had it wrong: aren't you supposed to publicly forgive your tormentors? I forgive you. I forgive you all because I tried sitting in front of the mirror saying 'I hate you!' and screwing my face into an expression of pure hatred and disgust, thinking this was okay. Okay because I wasn't talking to me, but to M.E. & co - hating the faults in my body while denying any loathing towards my mind or 'the real me'. It wasn't okay. I thought I had to 'stay strong', fight against you, but I'm too tired for that. I need to slow down, care for me; all of me, whether that has to include you or not. My separation of mind and body only lead to fear and confusion when my mind began to fail me too, not being able to communicate or concentrate on my school work, sending 'drunk' Snapchats at 2am. You are a condition, three in fact. You hurt me more than I can ever know as I don't know the healthy me or who she would have been. However, one of the only emotions you seem to take any notice of is my stress. So I refuse to create the stress of war any longer.
Never (100%) yours,
Sakara lives in England with her parents, two rabbits and a wandering cat. She was diagnosed with M.E. when she was 5 and has been attempting to rest (which she's bad at and her body doesn't appreciate) and dream her way through life ever since. She enjoys learning, persuading animals to like her (food is key), drawing, nature, singing and -of course- blogging.