Night and Day

My parallel realties


Last night, as I lay in bed waiting for the pain killers to kick in, I felt an overwhelming need to write. Below are my pure, unadulterated ramblings after a nasty flare up yesterday (apologies to my nearest and dearest, it might be a tough read for you xx):

“It’s funny isn’t it, when things are going well, all the bad stuff fades into the background. Almost forgotten as I skip through the fields of joy in my rose-tinted spectacles, smelling the flowers and bouncing around the garden with my doggy. Ahhh,  wonderful life. Then BOOM! The music stops. Something happens and everything goes dark. A temporary blip? A sinister reality check? A really shit game of musical chairs where someone turns the lights off and removes all the chairs? Whatever it is, it has a very dark sense of humour and an uncanny ability to rub out all the positives very quickly.

I’ve had so many positive things going on recently that I’d started to forget about the fact I have MS. In fact, I’d almost forgotten the seriousness of my condition, treating it like a recurring cold rather than anything else. So today hit me a bit hard.  My leg went from near normal to feeling like a bag of wet steak hanging from my hip. Painful and heavy, I haven’t been able to walk properly all day. And I’m knacked.  All the positivity drained away in an instant and became a distant memory. I’m now dosed up on Gabapentin waiting for sleep to make it stop. If I make a few spelling mistakes this time, please forgive me!

I was watching TV earlier and a few phrases kept coming up regarding other illnesses: recovery, all clear, cured. Words that fill me with deep joy for other people after what they’ve been through but at the same time, deep sorrow. MS’ers may never hear these words. At the same time, I feel immense guilt and selfishness for thinking like that. Am I wrong to think and feel like that? I can’t control it, I don’t like it but it’s there. I will experience periods of remission, sometimes long periods, but it’s never going to go away. Today just reminded me of that. Don’t get me wrong, I’m extremely lucky. I’m alive, I have good use of my limbs most of the time,  I can do lots of things. But it’s not about what I can do all the time, it’s about what I can’t do after I’ve done the things I can do – you get me?! Rambling now, time for sleep..”

Writing that last night was incredibly cathartic and helped me to sleep but is that what I would have written with my blogging goggles on? No. Waking up this morning I thought I’d write about yesterday’s event with a clearer head. Not so raw and pure but this is how I wrap it up during daylight hours to ‘deal’ with it:


Oh hello MS MonSter! Long time no see! What a delight it is to see you again… Today, my MonSter has woken from his slumber and attached himself to my leg. He’s put on weight and tightened his grip preventing me from walking like a normal human being. Hilarious! I have spent all day trying to shake him off but he’s having none of it. Little bastard. Right then, I  still have a day to get through and a pile of chores to complete so I’m just going to have to drag you along. What was that? You don’t want to do the weekly food shop? Well tough, you’re coming with me. You can ride in the trolley if you like, in fact that would be really helpful but I bet you don’t!

He didn’t ride in the trolley. I tried to leave him in the fruit and veg aisle but he didn’t want to make friends with the sprouts either. Nope, he just wants to hang on my leg like an oversized toddler. Its going to be a long day.

Evening comes and he’s still there. Hmm, time to open the Pinot – he hates wine, it loosens his grip. It loosens my grip a bit too but I quite like that feeling! 8pm rolls around and I’m quite tired now. Come on MonSter, time for bed. But first, I’m just going to swallow some MonSter Kryptonite – that’s right, magic pills. He really hates those, they loosen his grip just enough that I can ease him off my leg and get some kip. Night night MonSter, hopefully NOT see you in the morning…

Night and Day, my parallel realities. Writing both has been interesting, I hope someone else out there relates. If not, I’ve clearly lost the plot! Have a good one xx




5 thoughts on “Night and Day”

  1. Love your writing. My monster has been with me for 26 years now. I can feel and see him every day : this morning he’s fizzing up and down my ice cold purple leg.

    Liked by 2 people

  2. with you all the way girl with my CFS & inflammatory arthritis. never think twice about getting it out there……very cathartic…….never think we dont understand………we are here and you are not alone. you enjoy the good days twice as much…….treat yourself & do some silly stuff …….you deserve it…..always here luv ali 🌷🌸🌹

    Liked by 2 people

  3. Night and day


    I’ve never met this particular Di – or your other mate Cath Artic for that matter – but even if I had I’m sure I’d never in a million years have captured their essence anywhere near as well

    Great writing as always Jo. Even if your ‘bag of wet steak’ had me considering veganism . . .

    Gan canny seymour

    Liked by 1 person

  4. The monster lives under my bed, his brother under the sofa, his sister in my car and his cousin under my desk at Mustard Soup, they are a vile and horrible family, I’ve never got on with them, they just make life so hard. I considered calling the ghostbusters to see whether they could help, but as they aren’t slimy, there’s a bad chance that they wouldn’t suck into the magic machine. I’ve tried kicking them, but they fight back harder as they know they’ll never ever lose. Sometimes, I mess with their heads and use my wheelchair, they get bored of holding onto something I’m not using, jump off and get the bus back to where they live. But I agree, they are a real pain…..xx


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