Wednesday the 9th of May 2018
So, day three of M.E. Awareness week and by fuck do we know it in the house of Mellars. Today has been ALL about this fucking shitty illness yet again and I’ll let the cat out of the bag now, I’m really sad and really fucking angry that we’re in this shitty state of affairs.
I linked back to a BBC NewsBeat documentary on last nights blog… I’ve watched it three times now and it’s having the same sort of effect that Braveheart normally has on me, minus the need to play the bag pipes, paint my arse blue and go out and immediately vote for independence. It’s making me angry. Now I know what you’re thinking; but Braveheart was a Hollywood version of reality? Aye you’re right… and to be honest I can’t really stand Mel Gibson either. He’s up there with Jim Carey, Kevin Bacon, Robin Williams (R.I.P.) anddddddd whats that other one? Fuck… whats his name? From Forrest Gump? Life is like a box of chocolates etc? Gah Tom Hanks! That’s him! Anyway, the point is, he makes my skin itch normally but that film does funny things to me and makes me all patriotic and shit, I think because he’s pretending to be Scottish I look past it – I’m temporarily fickle like that. I feel really really let down by our government, betrayed even – just like our Mel did in the mostly made up story, that’s where the connection lies. I know, I know, I took ages to get there, it’s going to be a bit like that today – I’m all over the place. Anyway, if I had the energy I’d be getting on my horse… hold on maybe not a horse… they shit me up (they’re all teeth)… maybe I’d just get the train. Aye so I’d get the train to Westminster and I’d rattle the governments chops, all of them, and I’d make them see that M.E. patients have had decades of being fucked over, ignored, dismissed and worst of all… not being believed and it’s time they got a grip, took notice and started acknowledging that they’d SAVE money by finding a fucking cure. With an estimated 250,000 of us in the UK there’s going to be a massive chunk of us dodging work and relying on benefits.
The documentary I mentioned above filmed a few different individuals who are severely affected by the illness and it also spent some time with a family who had lost their daughter to M.E. I’ve written about Merryn Crofts before, she symbolises everything that’s tragic about this illness; she was 21 when she died. 21. How the fuck does that not shock everyone to their very core? How the fuck can Jeremy Hunt claim that 3.35 million is ENOUGH of an investment throughout the whole of the UK IN SIX YEARS to investigate the cause and possible cure for M.E. As I mentioned above there are an estimated 250,000 affected in the UK that means he’s pledged £13.20 per head and if you divide that by 6 (years) it’s a diabolical £2.20 a year? Now don’t get me wrong, it’s better than nothing but if I told you that M.E. accounts for the majority of long term sickness absence in schools, or that a huge number of young people feel that their only way out is to commit suicide because there is, and continues to be, no cure for this illness and it seems so so hopeless… would you feel the same? Do you look at that £2.20 a year per head and see that as a massive investment in getting people back to work and earning? I sure as fuck don’t.
My cage is rattled by the glaring injustice of it all for me, and on behalf of everyone who has severe M.E., because I’m one of the lucky ones you know. I have been classed as mild to moderate in terms of the symptoms scale. I can do the majority of personal care tasks myself, or with minimal assistance but it still means that I have to rely really heavily on Christiaan… and I guess we’re coming the core of my anger today because, me being ill has impacted him too. I wrote last night that he wasn’t well, and a visit to the doctors today diagnosed a rotten ear infection… as well as general exhaustion. He’s physically and mentally knackered by everything that’s going on with me. I can’t even begin to tell you how that feels, and to be honest, it’s not my feelings that are important; it’s his.
He’s had to sit in the back seat all the way through this. He’s had the same worries I’ve had when they found the growths in my brain, when I’ve had no energy to pick Eli up, when I struggle to walk to the car… hes has all of that going round and round in his brain all the time. In some ways its easier to be the patient you know, I can feel my boundaries most days and understand what’s going on and why, it’s shit but I can normally rationalise it, but for Christiaan… well he can only go by what I choose to tell him that day, and the reality is, I’m a stubborn fucker who uses “fine” all too often. I’d rather battle through something on my own than ask for help…. and he has to watch that. So why am I angry? I’m angry because not only is M.E. stealing from everyone and no one seems to be taking any notice. I have no way of changing the outcome of what’s going on for us but I WILL keep on telling as many people as I can about this stupid fucking illness in the hope it creates an uprising of awareness; lets face it, if you rely on the likes of me to rise up, you’ll be waiting all fucking day because me, and thousands like me will all be having a nice sit down. We’ve no energy to do owt else.
So, I do what I always do when I’m frustrated, I look for something, anything, I can do to show people that enough is enough. I’d been reading all of the up and coming activity on the ActionforMe and finally I found something within my current capability. Here’s what it tells me to do:
Getting involved is easy
* On an A4 piece of paper or card, use a thick black pen to describe – in one sentence – how M.E. affects you. Don’t make it too long or it’ll be hard for people to read.
* Take a selfie, or get someone else to take a photo, of you holding your message.
* Upload your photo to Facebook or Twitter with the hashtag #ThisisME – and don’t forget to tag @actionforme so we can share it.
So I did.
I have quite literally taken them at their word. My statement describes how I feel in one sentence, it’s not hard to read…. it’s flaccid. Like a knob. The similarities between a flacid knob and my life are startling really; I don’t have the get up and go I should have, I make myself and other people feel quite uncomfortable when I’m out and about, I’m the thing no one ones to talk about in a room, I’m always laid down being idle when I should be stood up looking at the world and marvelling at…. well the bushes I guess? I couldn’t be any more of a flaccid knob if I tried. The rainbow in the background is to symbolise hope…. or the fact that I’m in the play room and hadn’t noticed it was in shot: whatever.
Now, this is the bit I need your help with – I want this pic to do the rounds. Not viral as it were, because, I’m not sure we have that power in our wee Facebook community but I want at least a few people who have never heard of M.E. to be lulled into a fall sense of security with the promise of flaccid knob pics. Please share my post on Facebook tonight, I don’t often just come right out and ask but it’s important this week because more than any other week this year M.E. patients have a stage and I really don’t want to waste it. When you share I’d be really grateful if you used the hashtag #ThisisME and #tryingtodoitall alongside any other comments you have. That’s allllll you need to do to help. Get the word out.
As well as my sofa army antics I’ve been back to the doc today, as always she’s marvellous and has agreed to do some further analysis on my vitamin absorption rates, just in case the normal range numbers on my blood tests are only giving a one dimensional view. I’m not holding my breath, and I think both her and I are aware we’re probably clutching at straws but it’s one of the only things we have left to look at that could potentially improve things for me. If it’s found that my body has the nutrients but doesn’t absorb them properly, then it could account for the increase in bone pain and even if we can get that one tiny wee bit nailed I’ll be happier. It won’t cure me of my M.E. but it may well lessen one the symptoms that seem to be getting worse. So, blood tests booked for next week and another sick note for a month – I’m desperately hoping I’ll get back to work before the 4 weeks are out.
I really really miss it you know. I know I’ve said it loads, but I do…I miss the people and the camaraderie and the laughs but above all I miss having a clear purpose on a day. At the minute I’m “pacing” which is to say I’m trying to balance out the really menial tasks I have to do in a day (like making a pot of soup, or having a shower) with periods of rest in the hope that my body stops panicking and realises that if it just stopped fucking around and trusted me, that I could be trusted to use my energy reserves wisely. It’s fucking soul destroying. Even if I could contain it to just physical exertion I’d be happier but it encompasses anything mental too – 10 minutes writing this, or reading a book can wipe me out for AGES some days. That’s why everything takes SO FUCKING LONG and why quite often, when you read my blogs they’ll maybe jump all over the day. I come back to it several times to write wee bits before I can post it – otherwise you’d maybe get a paragraph of misspelled brain jibberish….. which is what I’ve been known to present at work sometimes, and why I’m not there right now.
Sooooo another 4 weeks off to fight the big fight. I need to have some goals though so I’m going to be keeping myself….well not busy, but stimulated. I want to get outdoors at least once a day because feeling caged in is awful, I’ll keep writing this (pity for you!), I’ll try and get a few more pots planted in the garden and I may attempt to try and weed the front rockery. All of which you’d do in a day I’m sure, but it’ll take me weeks but I’ll be chuffed to bits if I manage to do it.
Most of all though, I want to try and look after this husband of mine in whatever way I can. I made a start today by cooking him his favourite soup and getting him a fudge doughnut from the shop by the doctors and over the next few days while he’s off work I’ll be making sure he has plenty of time just to be still and rest. Eli will be in nursery tomorrow and Friday, and I’m used to managing on my own while he’s working so he has no excuse not to rest. I need him to be in a better place because it makes me heart sore to think that he’s suffering because of me. I hate it, not because I enjoy a wee bit of self indulgent martyrdom, but because it’s out of my control and I hate seeing him beaten up by this too.
Get better soon lovely man 😘
- Eeesht scraping the barrel a bit today really but the soup was tasty?
- I did not cave and get myself a fudge doughnut when I was buying Christiaans
- I managed to shower
- Christiaan’s got a rotten ear infection and is pretty much exhausted
- I’m off work for ANOTHER 4 fucking weeks at least
- I’m shit today, I keep going really hot and lightheaded then really cold and shivery, my bones are awful, I’m knackered and I know I’m dragging my legs around like they weigh 10 stone each.
- Jeremy Hunt is a massive cunt
- What’s on the menu Mellars?
- A yoghurt for breakfast… it’s becoming a bit of a habit really
- Lunch – a mug of home made soup – gammon and barley
- Dinner – Heck Chicken Italia & pepper casserole with spicy wedges & mushrooms
Here’s to a better tomorrow!
Are you new round here?
If you’ve just stumbled across TryingToDoItAll and have no bastarding idea what’s going on you should probably go back and read a few blogs from the beginning. Don’t panic, I won’t ask you to read them all, but these few posts will help explain. Oh stop sighing, it’ll only take you a few minutes. Fucks sake.
- Well you’re here, so you may as well get comfy
- Can’t stop M.E. now…. ahmm having such a good time, ahmm tickling your balllssss!
- When are the grown ups coming?
- Major surgery…again?
- You’ve got to be kidding M.E.?
#mecfs #meawarenessuk #mewarrior #silentillness #swearymum