cfs, Dear M.E

Dear M.e

Shushhh. ShUT UP. I kind of wish you were a separate entity I could make a deal with, compromise with, or ideally leave far, far behind, ditch you on the side of the road or something and drive off with glee.  But you’re like a internal rumpelstiltskin, you have a price for everything, the small print with you is so tiny and elaborate I never quite know what I’m signing away.

Last week we spent an hour shaking with panic as the dentist drilled away at our teeth, as your friend dystonia flinched and kicked and spasmed like a two year old throwing a tantrum, You made me pay for that. ITS NOT LIKE I WANTED TO GO M.E!!! It wasn’t at the top of my list of things to do, I hate it as much as you.

I am a little wary though M.E because so far this week I’ve dealt quite well, you’ve been somewhat calm, not easy, but not as vicious as i know you like to be. I’ve not let myself believe that maybe that is down to my careful planning, control and resting, No, I know you better. You’ll kick in a week later, which incidentally is the worst time, So i’m writing you this letter to beg you, please let it go this time. Let me live my life a little. You see i’m going out tomorrow night, I want to have fun, I want to have a couple of drinks, laugh with my friend, hell! maybe dance a little, I really don’t want to be burdened with you, ashen pale, and being asked if i’m OK EVERY FIVE SECONDS.

But i’m also here to ask a little more of you M.E, you see I am going out tomorrow night and I’m thinking maybe, if i’m extra, extra careful I’ll be able to duck under your radar and escape your repercussions for one more day, but I’m worried about next week too, You see, I know you’ll make me pay for tomorrow night, i’m just begging you, spare me next saturday too. Please.

With you It often feels like i’m making compromises with some greater power, something that holds dominion over me. Its not natural M.E, you have very little order, or sense. You attack, sometimes without provocation, and with vigour and viciousness, and yet you show no signs, you take hold with deathly silence, bleeding away energy like frayed wires, and it is so hard for other people to understand, I read so many people who are struggling under your rule to be understood. they feel frustrated, let down, isolated by you, because people don’t understand, they can’t comprehend the effect you have, and I am thankful to have a family and close friends who understand, but i still feel that drop of disappointment and isolation when friends ask “when are you going to get a job.” “What is it you want to do?” and they frown at me when I go out with them and you force me into asking to sit down, or to rest, so I’m worried about tomorrow and next saturday when I’ll be in London, and I’m worried every time I attempt to make a new friends,or try new things or find a little freedom, because i know you are lingering, my oppressor, to remind me I’ll never do what they can do as long as i am stuck in this marriage with you.

Yours Bitterly



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