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.

Thursday, 11 May 2017


"You must say,"
They tell you
As they welcome you in
"You must say if it's too much"
And you nod
And you grin
But when you finally find
That you can handle no more, 
When your body is screaming,
Limbs leaden and sore,
And you try your goodbyes
Before you fall to the floor 
Then there's always ten reasons
Or more to delay you
There are photos to take
Or leftovers to fetch you
So you nod 
And you smile 
like an ungrateful wretch
Because all you would like
Is some peace and your bed
But you're in someone's house
Being 'human' instead
Even though noise and light
Is attacking your head
And your heart it keeps racing,
Your limbs feels like lead,
So you wait patiently
And you try to join in
As they search for a camera
And you nod 
And you grin
But the batteries are dead
And the irony's not lost
So you wait even longer
No matter the cost
Because you ate all their food
And you managed some wine
You don't want to be rude
So pretend that you're fine
And the camera is back 
But the batteries won't work
And there's flapping and fuss
So you nod 
And you smirk
And suggest that perhaps
As we all have smartphones
Could they not just use that
So that you can get home  
And you nod 
And you smile 
For these people you love
You try to ignore 
all the noise and hubbub
Then as soon as it's done
There's leftovers to get
There are goodbyes to say
So you can't leave just yet
So you wait on the sofa
And try not to mind
That you feel like a truck
Has hit you from behind
And then finally
Once you are able to rise,
Despite the pain in your back
And the ache in your thighs,
You make for the door
And are helped outside
By some wonderful people,
So thoughtful and kind,
But they stop for a chat
And you don't have the heart 
To tell them you're struggling
And cut them off short
Or explain you can't stand
That your legs feel like sponge
And you really can't handle
Being upright this long -
You're way past your limit
But you nod 
And you breathe,
Slowly sink to the concrete
Where you wait patiently
For the talking to cease 
And you silently pray 
For some kind of release,
Someone to take you away,
For the heavens to part
And a giant hand to come,
Pluck you from pergatory
And spirit you home
But the hand doesn't come
So you nod 
And you smile
Prepare to get comfy
On the concrete a while
And then just when you think
You're ok on the floor 
The conversation ends
And you must stand up once more
With you knees a-creaking
And your spine fit to snap
You somehow get back 
to the car and collapse

And when you are finally 
Home in your bed
Surrounded by silence
And darkness instead
You grimace through the pain
And you ask yourself why,
Why your life is so hard,
And you cry, 
and you cry,
And you cry until there 
are no tears left to cry
Because all that you wanted
Was to see those you love
Not be left in such pain
That you feel you might die,
So you ask yourself even though
You know there's no 'why'
And you cry, 
and you cry, 
and you cry..........

© Charlotte Green
11th May 2017