A novel experience part2

As I mentioned in this post, I’ve wanted to write a book about my experience with ME for some years now.  It will probably be crap and unpublishable, but at least there will be a record of what severe ME was like in the latter part of the 20th Century.  I’m convinced in years to come, when we finally know the cause, the world will look back on our experience and be horrified at the way we were ignored and stigamatized.  I also hope they’ll think we were all incredibly strong and brave souls to live through what we did.

I keep plugging away, doing an odd line when my brain will let me and will share parts of each chapter with you as I go along.  Here is an excerpt from Chapter2:

“‘Hi Liz, come on in’ I pull open the front door, letting in a snow flurry of freezing air which leaves me shivering in my crumpled striped pyjamas. ‘Can you come up to the bedroom, I’m still struggling to sit upright without feeling like I’m going to keel over.’

     I pull a chair up next to the bed, then clamber back into the ruckled sheets panting like I’ve just scaled the north face of the Eiger not climbed one measly flight of stairs.

     ‘Are you still no better?’ she asks incredulously.

     ‘Nope. I feel like I’ve been trampled by a herd of wild elephants.’

     ‘Have you been to see your GP? What does she say?’

     ‘Apparently I have Post Viral Fatigue Syndrome, which is common after a bug and should just go away on its own.’ Neither Liz nor I have ever heard of Post Viral Fatigue Syndrome so both agree it can’t be that common.

     ‘Oh well, you won’t want to come out for lunch then?’ Liz asks, clearly disappointed, ‘I wanted to tell you about Tony.’ They’d finally split up at Christmas but neither were finding it easy to cut the ties and I’m fairly sure they’ll have break-up sex before they’re done.

     ‘I’d love to come out for lunch, I’m going stir crazy cooped up in here, but I just don’t think I’m up to it, sorry mate.’ I hate my body for robbing me of the chance of a cheese & pineapple toastie and a steaming mug of hot chocolate with cream and marshmallows. My stomach starts to rumble. ‘Why, what’s happened?’

     ‘Oh it’s nothing important, don’t worry about it.’ She picks up her quilted Channel bag and seems in an indecent hurry to leave. ‘I don’t want to tire you out. Get some rest and I’ll fill you in when you’re feeling better.’

     I take in her immaculately pressed 501s, manicured nails and beautifully applied make-up and am suddenly mortified. I haven’t had a shower since Tuesday and it’s now Saturday, I can’t remember cleaning my teeth this morning and I’m still sleeping in the bile splattered sheets that kept me company during my stomach bug because I haven’t had the energy to change them. I watch my friend’s nose subconsciously wrinkle with distaste and am guessing my bedroom has the sickly waiting-for-death smell of an Old People’s Home. I remind myself to open the window to let some fresh air in when she’s gone.

     As I head back downstairs, following the spicy aroma of Liz’s Eternity, I feel a pang of hurt she hasn’t offered to nip to the bakers round the corner to get a sandwich and a cake and bring them back so that we could have lunch here. The only people I’ve seen since Christmas have been my Mum, step-Dad, John and my Doctor and I’m desperate for fresh company. I’m also bored to distraction, the only excitement in my day being the chance Fred will fall in the Mersey when he jumps around the weather map on This Morning. I haven’t heard from anyone at work either which has been upsetting, especially as I’m always the one to do whip rounds and send cards when any of my colleagues are sick, and although I speak to Lisa most days on the phone she’s had cancer and it would feel somehow disrespectful to whine on about my insignificant little illness. The only one of my friends who genuinely seems to care I’m poorly is my sea-faring mate Nancy, who I met on the cruise liner last year, but she lives three hundred miles away in London so it’s not like she can just pop round with a fresh cream Eclair and a dollop of sympathy.

     The thought of cake, oozing with sugar and topped with sticky chocolate, makes me hungry for the first time in days so after I show Liz out I make the most of the fact I’m downstairs and shuffle along to the kitchen to fix myself some lunch. The bread bin gapes at me empty mouthed. In comparison the fridge is a veritable smorgasbord containing half a pint of UHT milk, a scraping of margarine, two rotten eggs and a jar of mouldy tartare sauce. The freezer is marginally better, offering up three oven chips lurking in ice in the bottom of a bag and a clumpy handful of mixed veg which last saw daylight in 1989. I’ve already lost eight pounds since Christmas and at just over seven stone it’s not like I need to lose any more. Sick nor not I need to do some grocery shopping.

     I haul myself back up the Eiger with marshmallow limbs, sit on the edge of the bed to get my breath back, then ratch about for some clean undies. I find one pair hiding in shame at the back of a drawer, elastic dangling from the legs and the beginnings of a hole in one butt cheek, which will have to do. I’ve been too exhausted to do laundry and realize if I don’t put a wash on soon I’ll be sock-less. And pyjama-less. And knicker-less. The thought of wearing the same gunky underwear two days running is monumentally un-appealing.

     I get even further out of breath pulling on jeans and a thick cotton polo-neck then slump at the dressing table to brush my hair. The face staring back at me through the mirror is pale and drained with a faint artist’s flick of purple shadowing the corner of each eye. I consider painting on a cheery glow with some blusher and a pink tinted lip gloss but it’s just too much effort. My hair, which hasn’t been washed in days, is un-salvageable so I wind it into a greasy ponytail, hide it under a jaunty grey cap and just pray I don’t meet anyone I know.

     I can spit from my house to the Co-op but crossing the public car park to get there becomes a journey of perilous and epic proportions. The noise is deafening with the beep beep beep of reversing vans piercing my brain with needles of stabbing pain and hulking cars surrounding me on all sides like menacing panthers stalking prey. My senses shut down and I stagger along in a dream world, detached and unreal, dragging my leaden body along in shoes with sponges for soles. My brain heaves a sigh of relief when I finally reach the safety of the supermarket and I grab a trolley, the grating of metal as it frees itself from its neighbours frazzling every nerve. Leaning against the handlebar to support my jelly legs I shuffle up the aisles trying to remember my shopping list. The kaleidoscope colours of loo rolls and fizzy pop dazzle my eyes and the gentle background music drifting down from the low ceiling pounds louder and louder until it’s throbbing on my eardrums like a pulse. I focus on the grey mosaic flooring but it ripples under my feet making me motion sick and green to the gills. I’m disorientated, my vision a blaze of exploding stars, and can’t wait to get home.

     I dump the shopping bags on the kitchen floor and crawl up the Eiger on all fours, collapsing fully clothed onto the bed where I curl into a ball waiting for the room to stop spinning, the acid taste of vomit rising in my throat and swallowed bitterly back down. Every muscle in my body throbs, pulsing and aching as if to some long forgotten primal beat. I can’t move. I’m fossilized like a curled ammonite without the energy to open my eyelids let alone take off my boots. Hours pass, the wintry sunlight seeping through my bedroom window fading to grey, then black.

     I feel the mattress dent and the gentle whisper of feline breath as Stripe begins to purr loudly in my ear. ‘Oi, you with the tin opener, it’s past my tea time. I expect my meal on the table tout suite and if I don’t get it I’ll report you to the RSPCA for cruelty to animals.’

     I smile, open my eyes, and am rewarded by a splodge of kitty drool landing on my cheek.

     Cheers for that.

     ‘You’re welcome. Don’t say I never give you anything.’

     I drag myself down the stairs after Stripe, fill his dish, and start putting away the shopping. The frozen food is alarmingly mushy but gets shoved in the freezer regardless, even if by doing so I’m potentially making it hazardous to human health. The way I feel now, fighting a dose of E-Coli would be a doddle in comparison.

     John played at home today so is coming round in an hour, picking up a Chinese on the way.  I can’t see him looking like this, I’ve got to have a shower and at least try to get dressed in something other than flannelette. The cascading water eases my aching body and clears my clouded brain, and thanks to The Body Shop and a dollop of Timotei shampoo I smell like I’ve spent the day in a flowery sunlit meadow. I reach for a towel, cocooning my body in its fluffy softness, take one step towards the bathroom door and smack into a wall of exhaustion so solid it might as well be made of breeze block. I stagger to the bedroom, my warm pink cheeks turning ashen as the blood drains from my head and lie shivering, wet hair spreading a pool of damp on the duvet, waiting for my energy to come back from wherever it is it keeps bogging off to.”


7 thoughts on “A novel experience part2

  1. Glo

    I hope this gets published. People have no idea. I can have no idea not having ME but understand the isolation because people don’t believe you’re ill and it’s all in your head. Nobody wants to hear a loony. You are so right to be putting this out there. If you don’t have cancer or some widely accepted well known illness no one believes you. You don’t look sick being my favorite phrase. Don’t even try to explain the ties your illness has to your mental health. Who will believe that eating the wrong foods not only makes one ill but also effects your mental status. That said you have to write about your ME and MCAD. You have great writing capabilities and only wish I did. I feel like I’m just harassing people when I speak about my MCAD. Word about these misunderstood and severely debilitating diseases needs to get out there. If only we had the energy to do it. But you do a great job. Thank you


    1. Jak Post author

      Thanks for the encouragement Glo. I totally hear you on not being able to discuss your illness with people. I was told for 15 years my MCAD was ‘anxiety’ and I was treated like a nutter, and the stigma of ME is still so bad I don’t even mention it any more preferring to say I have EDS as at least people seem sympathetic to that! Jak x


  2. Livvy

    Hi Jak,

    You made me cry…
    I know that trapped in prison of fatigue vs a desire to function… I can’t believe how well you manage to capture the difference between your life and your previous life…and how hard trying to negotiate basic things like showering and the supermarket are… These things we experience are so invisible but so vile. It’s brilliant what you are doing. Xxxxx


    1. Jak Post author

      Thanks Livvy. Someone has to tell the tale of severe ME – even people with milder forms of ME have *no idea* what severe ME is like. I don’t know if I’m good enough at writing to get a book published, but if I ever get it finished I’ll try and get it ‘out there’ somehow. Jak x


  3. Lindsay

    this is brilliant. it’s the most honest, straightforward account of being sick i have read. can you imagine how comforting it would be for someone who is terrified and going through the same thing?? brilliant.

    Liked by 1 person

    1. Jak Post author

      Aww, thanks Linds 🙂 Sadly it gets worse, much worse. Thing is, I thought I was *really* ill then – I had no clue what was in store which was probably no bad thing x

      Liked by 1 person

  4. Livvy

    Well I can’t say I’m Mrs English lit here but I’d just like to say YES YOU ARE GOOD ENOUGH!!!!!!! And we look forward too reading it! 🤓😋

    Liked by 2 people


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