Sunday, 21 April 2013

Hard

This is a stream of consciousness (or mind purge as I like to think of it) piece, unedited.

There's tired and then there's tired. Today is one of those days where tired requires italicises, bold font, underlines, asterixes the works. Before getting sick in 2006 I thought I knew what tired was, but now I realise just how clueless I was. It's one of those days where every molecule of vitality has been wrung from my body. Where nothing remains. Where breathing is arduous and if I catch myself thinking about it I lose the rhythm  How that's possible I don't know. Yet every time I think about my breath I lose it. It comes up short, or the rhythm is completely lost until it resembles some mad Morse code that even my body cannot understand. And words, what are words, They flow through my mind a fleeting moment of clarity and then....nothing. I know I had a thought. It was coherent but now 3 seconds later it is gone. Lost to the ether as if it had never existed in the first place. Not even an echo remains  Speech is beyond me. To coordinate standing, breathing, being, with words, with responses and meaning becomes a......I don't know. An analogy is beyond me. Ask me tomorrow or the next day and I'll give you a cracker but now I am stuck with four letter words. HARD. Thinking is hard. Breathing is hard. Being is hard. There is no word in the English language that is sufficient to express the fatigue illness brings. I'm sure the Germans have a good one, or maybe the French, but I can't even be bothered Googling to find out. The tired of chronic illness is not like any other. One night out and pay for a day, a week, a month. Pay with exhaustion that renders the soul. The Ferryman has his due and I lay here on the bed typing with fingers that seem intent on their own path across the keys. I will them towards the keys of my choice. I beg and plead. But there is a disconnect. The fingers are not my own. Nor are my arms, my legs, my heart, my lungs. I am a being of discordant parts. And the tiredness is impenetrable  the tiredness conquers. I am wrong  Every part is wrong. But fatigue mutes my response. To move, to readjust or reposition is more than I am capable. So I lie incapable of movement, of speech, of thought, or anything. Everything is too much. My taxed body can take no more sound, or sight or touch. No more. A fractured person held together only by a heavy blanketing fatigue that will not lift for days. Bound and enduring. The weight of my body increases exponentially and time seems to stretch incalculable as my mind collapses under the weight of fatigue and I drift back into oblivion. Last thoughts longing to wake with the worst of it past. Last thoughts more feeling than words. Muted feelings. Too hard to think too hard to feel. To hard to be. Wake me tomorrow or the tomorrow after that when the worst is passed and my old normal re-establishes itself. The old normal which I bemoan and disparage but at times like this shines golden. Sometimes it's these steps back that make us appreciate what we do have. But for now I'll bury myself under donnas and blankets and pillows and form unintelligibly cries in my mind more a jumble of feelings and images than words. And just focus on being on surviving till I emerge once more. Till the pieces connect again and unity is once more established. Till I can breathe and stand. And stand and talk. And move in the tiny realm I inhabit. And live. Till the next time I dare venture into the world and am lost once more.

Michelle

18 comments:

  1. Sweetie...get lots of rest & be kind to yourself. I know I'm amazed to have a good day & than have to recharge for what seems like weeks to have what I once considered a normal day. I would take that cupcake, but I'm also diabetic on this journey...hard headed & still no insulin. Bless you on this journey!!

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    1. Thanks Cathy xx It is lovely to head out now and then and participate in life but the toll can be so hard to deal with. It would be lovely to do it just once without the the payback.

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  2. This reads like freeform poetry Michelle. Even as tired as you are you've still got it! Love your writing. Take heart as you take those breaths between here and the old normal. There are lots of us empathising with you and journeying with you.
    Wishing you restful sleep.
    Rach

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    1. Thanks Rach. It is comforting to know all the support I have a round the world. The community that has sprung up around the blog has been an unexpected joy xx

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  3. Even where you are, you find all the words i never have. Even when you can't do anything, you are wonderful. Hoping this passes quickly for you, xx

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    1. Aw thanks hon. It is finally passing thankfully though I'm still a bit tired. Can't wait for tomorrows infusion. xx

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  4. get where your coming from. this will pass, I get the breathing bit so well. if anything interrupts you mind from breathing you are messed up, you need to concentrate so hard, its beyond belief.

    I was sitting outside today sipping tea at the table, feeling like I had flu, all the life had been sucked out of me, yet this is a good day!

    hope you wont take long to get over this bump in the road. appreciate the small things, find humour in things. take care

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    1. Ah the flu feeling I understand that all too well. This is like living with a permanent flu state. The breathing thing always gets me. You'd think concentrating on it would make it easier but nope makes it so much harder. Weird bodies. xx

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  5. Words are good, and touching and important.... thanks for posting!

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    1. Thanks Brahm. If only the words weren't always so hard xx

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    1. Thanks Ilana. High fives from this side of the pond xx

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  7. So very well put. It's perfect. I hope the worst passes soon :(

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  8. Michelle, as much as you are our inspiration and support, we are not your first priority, and if you don't think of yourself first sometimes I would certainly be Very worried about you, no-one else is going to breathe for you so go and concentrate on it girl. Wishing you renewed strength x

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  9. "Crushing" is a word I sometimes use for the deep weakness/fatigue/malaise/pain that means (for whatever reason) I'm at rock-bottom, again. Rock-bottom is a relative thing. "Rock bottom" of twenty years ago would be a great day by current standards. "How are you?" continues to be a tough question. Compared to what?
    I admire and salute your continued ability to string words together from underneath a mountain of HARD.

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  10. Michelle, while I was reading your post, it brought tears to my eyes! One, because I understand from personal experience how much you are suffering, and two, because I am you. Your expressions are eloquent, disconnected and yet present to the world in such a beautifully articulate way how this disease horribly affects the many who suffer from it. Take heart, though, one day, all our sicknesses will be a thing of the past. Build faith in the promise of God when He says at Isaiah 33:24 "No resident will say 'I am sick.' Those dwelling in the land will be pardoned ... "
    My thoughts and prayers are with you.

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx