Doing nothing, debates and very shameful rides

Thursday the 21st of June 2018

All those in favour of renaming the blog “Not doing very much at all really” raise your hands now.Β πŸ™‹β€β™€οΈπŸ™‹β€β™‚οΈπŸ€·β€β™€οΈπŸ€¦β€β™€οΈΒ That is, if it doesn’t knacker you – blink if that’s easier. Not too much mind, or you’ll look special and not in a good way. I tell you what, I’m getting right fucked off with this cognitive hokey kokey – I’m spending more time in the “out” than the “in”… story of my fucking life. Today, despite having been up for 3 hours in the night with bollockchops (more on that later) I am feeling a little more with it than yesterday. Not by a huge amount, but it’s still an improvement. I have no idea why. Well actually that’s not strictly true, I do know why, it’s just that it makes no fucking sense. Let me start at the beginning… actually… go and get yourself a pint of wine and I’ll wait till you get back.

wine

Ahhh right, there you are………wait a fucking minute, no one said anything about crisps. Greedy bastard. Yes, I’m just jealous…. sorry.

So, yesterday, well it went tits up to be honest. I woke up with a type of sore head I’ve never experienced before, I genuinely thought my brain was trying to escape through my skull. Apart from the normal pounding you’d expect with a typical sore head everything sounded like it was underwater and with a delay, my light sensitivity was in overdrive and everything looked a wee bit like it was blurry and had one of those Andy Warhol filters in – garish and kind of busy. It was mental.Β  As a result the curtains were drawn all day, I didn’t make the shower, in fact I didn’t make out doors at all until it was time to collect Eli at 3.30. I couldn’t tolerate the light, the noise, the wind and I desperately needed to sleep, in fact I was so tired I felt sick. Was it a migraine? I have no idea, I expect they feel worse but as always with anything brain related I needed to be hyper aware of what exactly is going on just in case we needed a wee jaunt to the hospital to make sure my brain nuggets hadn’t woken up and were kicking the shit out of the rest of my brain, or each other. It didn’t get to that right enough (and it probably never will!) and I was confident it wasn’t sinister; my brain wasn’t happy, most likely tired (shocker) and I needed to rest and this seemed like my bodies new way of telling me… seeing as I ignore it in most other ways. So I did rest, but I had to wait until the Tesco delivery had arrived, the shopping was put away and the people from the garage who were supposed to be picking up my car had arrived. The car ended up going nowhere because they didn’t stock the special thing they needed… I’ve no fucking idea why they couldn’t have said that at the booking but, anyway, it means I need to get it booked in somewhere else, which will have to wait because I have no desire to sort it RIGHT NOW. Anyway, after the fella from the garage had been I crawled into bed and pretty much passed out until I woke with a start almost two hours later thinking it was 2am and I had slept through getting Eli. It wasn’t, I’m a dick, it was 2pm and I had an hour and a half to get my shit together.Β There was no way I could have written my own name, far less a blog entry – I just wanted to get back to bed.

Today its still there but feels further away and less IN YO FACE so I guess that means it’s on it way out – and yes, I’ve drank plenty (at least 3 litres) so I’m not dehydrated *grin*. My mum thinks I’m subconsciously stressed about work, and I guess she could be right, there was that Occupational Health call on Tuesday and work is on my mind a lot but I’m not a stressy kind of person to be honest. Even when everything is going to shit I tend to be fairly pragmatic about it – I can either do something to help the situation, or I can’t. Don’t get me wrong, I get frustrated HUGELY and often quite angry but stressed? Nah, I’m not stressed, I’ve no need to be, it’ll all come right in the end.

I WAS stressed between the hours of 12.30am and 3.30am this morning right enough. Eli had what, I can only think was a nightmare. He woke up screaming his wee head off and couldn’t get himself back to sleep. We tried everything but he wouldn’t let me out of his reach at all for the first 2 hours and only fell asleep when Christiaan said he’d lie on the floor beside his bed until he drifted off.Β  Poor wee fucker was bumbling about monsters so maybe we should try and restrict the news bulletins with Donald The Cunt Trump on them before bed time. Actually, I suspect the majority of people would appreciate the restriction of his big ball sack face all over the telly – he’s a fucking disgrace that man. A shining example of an “I want, I get” society…. I’ll not get started, you know what I’m like.

So we’re all a bit knackered today, but I’ve sent him off to nursery regardless – yes I’m heartless but to be honest he’s better off being in nursery and distracted than being cooped up in the house with me because I’m fit for fuck all again today. I dropped him offΒ  instead of Christiaan this morning because we let him sleep a bit later to try and make up for his night time antics, Christiaan starts around 8.30 and I knew he’d be late if he had to drive him over so I dragged myself through the shower and got us out. He went in absolutely fine, singing and dancing and snuggling into his favourite key worker (I’m grateful he has one now, it’s been a bit of a rocky road at times) and I’ve gotta say, I was really fucking relieved. I thought that I’d get there and he’d be all clingy and whiney but it turns out he gives none of the fucks about Mummy leaving. If I hadn’t been still trying to shift some flab I’d have driven to the nearest cafe for some coffee and cake; actually I’m sat here wishing I’d done that anyway. Fucks sake. Instead though, I went via the council offices and handed in my ID for my blue badge application.

I still can’t get my head round needing to apply for that badge you know. Even as I was dragging my fucked body up the stairs to the door, I was questioning whether I was being a precious snowflake about it all. I can’t really understand how I got here and WHY there’s nothing anyone can do to help. It all just seems…. well fucked up. I’m hoping, seeing as you’re reading my horseshit that you feel the same way too, because there’s strength in numbers people and the more of us that stand up and ask “waiiiiit a minute, why is no one doing anything?” the more the question is out there, and eventually,Β  someone has to answer. Just remember those facts I gave you a few blogs ago: 1 – there are more panda’s in Scotland that M.E. specialist nurses, I could go and see the panda tomorrow without waiting, yet I’ve been waiting since September to see our speicalist nurse and 2 – there is an estimated 250,000 with M.E. in the UK but the investment over 6 years, 6 FUCKING YEARS has been Β£2.20 a head per year. That wouldn’t even pay for the equipment you’d need to START biomedical research far less have people looking into what the actual fuck is going on. So today, because people like me, and like you too (hopefully) have started to ask those very questions a debate took place in Westminster. Carol Monaghan (SNP) alongside several other speakers made the case for further investment, asking really pertinent questions like “what has the government go to lose?” which is the crux of the matter really because, and again I’ve mentioned it before, if you tally how much they’re paying out in benefits and disability to people who need it then they’re doing nothing bar fraying their own purse. Invest> research>cure is a win win. Yes the fluffy side of the story is that people’s quality of life will be drastically improve, and that’s important but basic economics suggests fixing a problem that’s preventing almost a quarter of a million people (quite probably more) from working and contributing is a good thing? Surely, paying compensation benefits for illness instead of fixing a problem is more expensive? It’s more fucking expensive than the Β£2.20 a head thats for sure. Surely the end game is to have a less reliant and more mobile society so that we can strengthen our economy instead of bleeding it dry? HELL FUCKING YES IT IS, because contrary to popular belief; we are not lazy bastards who don’t want to work, the majority of us would sell our granny for a chance at normality.

Most of the clips on the Millions Missing Scotland Facebook page are under a minute, if you’re able to give it some time watch one or two, Stephen Pounds got me especially because it’s all to easy to forget that children are also suffering with M.E. – it’s not reserved for the older crew. There are actual tiny kiddies missing their first years in education because they can’t make it out of bed. That’s horrific.Β  It’s a horrible, greedy, debilitating disease and selfishly, I want it sorted out, so watch it, absorb it, and keep questioning – it’s important.

I’m not sure I can ever fully explain just how much M.E. shapes your existence (or lack of for some of the less fortunate) to be honest. Christiaan and I were talking last night; it’s been months since I could walk any distance at all and it’s really beginning to take its toll on our wee family. We can’t go to the park together, or the shows (that’s the fairground to you Englanders), we have to drive everywhere, plan where we can go by how close by the parking is – it’s no good and it makes me feel like an utter burden (yes darlin, I know you don’t think I am, but still… its how I feel). The badge, if I get one, will help a lot with the parking thing but then there’s the walking back and forward and it doesn’t really address that. I’m not sure if it’s time to face facts…. maybe I need some kind of walking aid? The thought chills me to my very core – I’m 37, this shouldn’t be something we’re talking about for decades yet. Obviously my pride is screaming about it’s spiralling demise but if it would help, should I consider it? What the fuck would I even get? We joked about a segway because its cooler than a mobility scooter but I’d fall off the fucking thing -I had shite balance before I had M.E.! Also, how could I ever explain to people that some days I would need it and other days I can manage short distances OK? Surely people would think I was a massive faker and they’d found me out? Do I care? Aye, I do to be honest.Β  My pride has taken a battering over these last 18 months and I’m not sure I want to give in at all, but if I do and then I’m judged or disbelieved I’ll be absolutely crushed. This crash has to end soon though…. right? I might just hang on a bit longer… I guess if it doesn’t I can be as cool as this lass instead.

That’s not a random piss take by the way – that’s on actual eBay listing. She has so much sass in her face I’m surprised she’s not holding a machine gun. A slow moving, pink, electronic assassin, that’s what she is – I can tell.

The long and short of it is that my brain needs to get a bastard grip before it destroys any street cred I have left. I don’t want to be a pink fucking assassin, I want to be an able bodied normalton please. Oh and if you could sort out shifting the last few stones for me n all that would be great.

Thanks

The End

 

  • Highlights
    • Eeeesht, scraping the barrel but I guess Eli going into nursery was a highlight?
  • Β Lowlights
    • All sorts, but I can’t be arsed giving them any more air time, I’m bored of it so you must be
  • What’s on the menu Mellars?
    • Breakfast –  A yoghurt and fruit
    • Lunch – Crustless fake quiche
    • DinnerΒ  – Mushroom and onion tagliatelle for me and lamb and spuds for the penised one.

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.

  1. Well you’re here, so you may as well get comfy
  2. Can’t stop M.E. now…. ahmm having such a good time, ahmm tickling your balllssss!
  3. When are the grown ups coming?
  4. Major surgery…again?
  5. You’ve got to be kidding M.E.?

#mecfs #meawarenessuk #mewarrior #silentillness #swearymum #meblogging

#ThisisME

ME Blogger extraordinaire… not really

 

2 thoughts on “Doing nothing, debates and very shameful rides

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