Dear M.E

I’m getting used to the words incurable, painful, and the sentence, “Its hard to diagnose and difficult to treat.”

You started off in my life as bouts of severe fevers, headaches, swollen glands, and many missed days of school. I was four. When I started secondary school the stress of the change encouraged you to grow, you became all the more vicious. i missed so much school and then that same year my great grandma grew sick, the worry, stress and grief was something you fed off of, you stormed my body like an army, I cried from grief and from pain, i could barely move, days, weeks, months off of school, so they started to call in the social workers, dragging me out of class to meet this smarmy women who was determined to convince me i was fine. The odd day I made it there my teachers gave me disapproving stares, my friends were used to me not being there, The only place i wanted to be was at home.

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Dear M.E

When asked the question, “If you could go back ten years knowing all you know now, would you?” I think of all the things i’ve had power to change, the things I would change about myself now, and answer no. because all the time machine’s  in the world, all the hours taken back, recounted, like miles in reverse, would not change you, M.E, you were not a mistake i made as a child, like falling off the climbing frame, you were a fate forced upon me with inevitability, ten years back in in time would not change you, only lengthen you, that piece of string you are would grow inexplicably longer.

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Dear M.E

There is not a lot out there to help me deal with you. No magic pill that kills you, no soothing remedy, or definite action. You are not a simple illness and therefore there is no simple cure. But there are methods we learn, tools we are given to become stronger.

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Dear M.E

You have a sister, she is called anxiety.

Like you and your best friend, you are her just fit, compliment each other in ways that are worse for me. she is the hammer, you are the nail, and I am a bad DIY job, that you feel indebted to make worse. I look like a porcupine with all these nails in me.

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Dear M.E 

   I am almost 22, in six short months I will blow out my birthday candles, and wish you gone…again. 

10th year in a row, and this wish is seeming as farfetched as that unicorn i wished for when I was five, which, incidentally was the only time I ever wished for something childish. Life has only granted me this one whimsical wish, every other year for as long as I can remember I have wished for a bad thing to go away.

You and I we’ve been together a long time, almost 18 years now, i suppose.

I should have listened to you more those first 8 years, i know, but nobody else took you seriously, so I learnt to treat you as a hurdle I have to jump. A pain barrier I have to break. But you kept raising the bar, kept upping your game, didn’t you?

You were misunderstood for 8 years, and you took that time and grew, and grew, you took more and more from me: Friends. Trust. School. Movement from my neck. Energy. NORMALITY. HOPE.

And in return you have given me; Compassion, a High Pain Threshold. Patience. An intimate knowledge of how many steps I take from the sofa to bathroom and how many things I can lean against on the way, yeah…thanks for that one. 

In these years together, I admit you’ve taught me a lot, as begrudged I am to tell you that. You took my youth, you stole from me those experiences, I won’t have wild stories to tell my children, unless you count that time I marathoned that tv show,  and the amount of times I have read my favourite book, Eragon, 56 times, in case you were wondering. 

But you forced me to stay home and search for something to love doing. I don’t know if i would love these four walls as much as I do if not for you, I don’t know if i would have my cats, who come and snuggle into me when you at your worst. And I don’t know if i would have left school and been able to explore my own education if not for you. Through the pain you have brought me you taught me a patience and skill, i didn’t think I’d have.  

I don’t know if I’d be able to write like I do, if not for you.

But, make a note, M.E, you did not give me these talents, you forced me into a corner. Backed me up against a wall, and have stolen more than you gave, and I can’t do this anymore, YOU ARE DESTROYING ME. 

I think, after all these years, I’m losing hope, I mean, I think I lost hope about 5 years ago, after I’d seen doctor after doctor, all throwing useless advice at me, the truth is all these “experts” have no idea what you are, you are an ever-changing mystery. Every time they think they figure you out you change the rules.  

They have not helped me as you dug your claws deeper, so deep I want to scream, as you extract another piece of my will.

I have been in so much pain M.E, so much, too much. I don’t know how i can do this anymore.

I hope one day you will flee from me like an evacuee escaping a tsunami. I hope my will, will crash upon you like a thousand foot wave, but I doubt it.

I have spent so long seeking out your cure, your secret you won’t let anybody know, I’ve put my life aside for you, giving myself the condition, “yes, but when M.E goes, I’ll live then.” Most have a bucket list, I have an “after M.E list” It includes exciting things like “I’m going to walk my dog.” And “I’m going to go London and just walk around without seeking a place to rest you.” And “I’m going to go out and not worry about your bloody repercussions.”

You are stricter than any of the parents seen on “world’s strictest parents.”  You punish me for such normal things, such average things, and no matter how much I try and rebel, your punishment never fits the crime.

I am almost 22 and I should be starting my life, but I feel like I’m an 90 year old who has only been awake 20 years, I should be able to experience being young. Go travelling. Make friends. Fall in love. Get crappy jobs. Get good jobs, study. Write. Taste new foods, and be young and bloody free.

But you never grant me this chance, instead you and I waste away the years, waiting for one to let go. Like an unhealthy, abusive marriage. But I never said I do M.E, I never agreed to this. 

Bitterly yours 

Me.