Friday, 12 May 2017

The Aftermath - living with ME

Monday 8th May 2017

I was out of the house for almost four hours yesterday, which is pretty epic for me. We were invited to a family get together at my sister-in-law's mother's house, and as I don't really get to see her or my nephews very often, I was delighted to be invited and determined to attend. As all outings are for me these days, it was lovely but it was hard work. Leaving the house and socialising for a few short hours is akin to a Herculean task when you have an illness. It takes planning, psyching yourself up for the inevitable energy expenditure, and even when you're back home safely, tucked up under your duvet, you still have to contend with the fact that the worst is yet to come. As the saying goes, payback is indeed a bitch. When I post up photos of my exploits online, I'm always happy and smiley because I have actually managed something pretty fantastic - I have left the house. I like to focus on the positives because no-one likes a Debbie Downer, and endless photos of me feeling poorly wouldn't do anyone any favours however that makes it very hard for people to understand just how horrible my illness actually is. So, in the spirit of raising awareness during M.E. Awareness month, I thought it was high time I went into a bit more detail about what happens next, when the camera is turned off and I have to deal with the aftermath. For every smile you see on social media, there is a hefty price to pay behind the scenes.

All smiles - a lovely time with family.

Yesterday, after my outing, I got home and staggered straight up to bed. No mean feat when your legs are protesting every wobbly step and your sense of balance has gone flying out of the nearest window but somehow I managed to ricochet my way up the stairs and snuggle down under my duvet. And then out of my duvet. Then under it again. My internal thermostat is pretty buggered at the best of times and only gets worse when I'm recovering from an activity. It's like a hot, sweaty, then suddenly freezing cold, horizontal version of the Hokey Cokey, only with added duvet and nowhere near as much fun. If I had a pound for every time I had to put my left leg out, then my left leg in, I'd have a fairly decent pile of cash by now. 

Anyway, I stayed put in my pillow fort for the rest of the day, dozing in and out of consciousness, then somehow managed to end up downstairs again for a fish-finger sandwich around 8ish. Then it was back to bed for some much-needed peace and quiet whilst I tried to ignore the searing agony I was in, hoping that sleep would fall upon me sooner rather than later. Sadly, my brain was far too wired from all the sights and sounds of being out of my little bubble. I lay awake, tossing and turning as much as one can when one's body feels like a sack of rubble, finally managing to drift off at around 6.30am, just as I heard my husband getting up for work. 

The cat miaowed me awake at about 11.40am and I really wish he hadn't. Today, as expected, the after-effects of my little jaunt are starting to set in. I came round in a pool of sweat, groggy and disoriented, with my jaw firmly clenched from sleeping through the pain. My body feels like I have been thoroughly beaten with a large stick, and my head is sore and woolly. Walking is an issue - my legs are leaden and precarious. Being upright long enough to get to the bathroom or make it downstairs for food is a real challenge. My brain won't work properly and my eyes are blurry and sore. I am currently typing this with one finger because my arms are both sore and numb at the same time. I didn't even know that was possible, but there you go. I'm often left baffled by the new and exciting ways my illness finds to torment me.


Even the cat feels sorry for me today.

In short, I feel broken. My moral is low and I just had a little cry because amongst the guests yesterday, were a heavily pregnant lady, and someone undergoing a course of chemotherapy, yet I was the one who had to leave first. I was the one flat out on the sofa as everyone else buzzed happily around me. I feel so useless and frustrated that I am reduced to this heap of awful, just from sitting and chatting and eating delicious food with lovely people for a couple of hours. Furthermore, I am despondent because I know this isn't even the half of it. I don't feel the full effects of an outing until at least 24 to 48 hours afterwards, which means that I have a whole truckload of even more awful waiting for me in the next day or two. All I can do is hunker down in my duvet bunker and try to sleep it out. Eventually the pain and discomfort will even out to a more manageable level. Until then, I am stuck in the half-light and silence of my room as the world beyond it is far too bright and noisy for my poorly brain. Today's beautiful sunshine is wasted upon me, as it hurts my eyes. Every little sound I hear feels like someone scraping the inside of my brain. Birds singing outside, planes flying overhead, even the cat snoring is too much for me to cope with today. I suspect I may be needing my trusty ear-defenders soon because my ear plugs just don't seem enough on days like today.

So yes, I had a lovely time yesterday. It was the first time I had made it to Anne's house since before I got ill almost six years ago. I had a wonderful time with family and friends, was looked after wonderfully and given delicious food to eat. I smiled in all the photos because just getting there and coping with all the hubbub is a massive, massive achievement for me. I am truly thankful that I am able to take part in social gatherings like these now, as there was a time where I honestly did wonder whether I would ever be well enough to leave the house again. To be able to have a small slice of normality feels wonderful, even if I know the inevitable comeback will feel like a journey to the bowels of hell and this is why I will keep on pushing my boundaries little by little, as my body allows, so I can experience the highs of life as often as possible. I just wish that the following lows weren't quite so low because  nobody should have to live like this, with no viable treatment options, no cure, and a large proportion of the establishment denying your illness is real. Let me tell you, the pain I'm in feels pretty damn real to me right now. I would give anything to be able to go anywhere and do anything without this level of suffering and misery afterwards. Treasure your freedom and your independence - you really don't know how lucky you are.


The bags under my eyes are designer, darling.



1 comment:

  1. I nodded along to everything you said

    "and even when you're back home safely, tucked up under you duvet, you still have to contend with the fact that the worst is yet to come."

    So beautifully written about such a dire situation. I too ricochet up the stairs and seriously think that horizontal Hokey Cokey should be a thing.

    So SO chuffed that you made it out for a taste of 'normality' but hate that you then have to suffer. Says a lot that you were the first who had to leave...

    Love from Ray

    P.S. You are one of my super shiny silver linings

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