Horseshit; part 2

Friday the 10th of August 2018

Experiment day 2 – time started 8.51am

Welcome to my office! Come in, sit down, take a load off. Firstly let me introduce myself, my name is Sarah, I will be your hostess for today. I am 37 years young, GSOH, enjoy food, swearing, sleeping and no walks in the country. I have one tiny Hitler, two furry idiots (no not my boobs, actual cats, we’ll talk about my tit hair another day) and a fish called Flokey…. who I’ve literally had no custodial access to since he moved to my husbands office. Oh and I have a husband; he’s kind of a big deal in the world of elasticated clothing and LEESURE WEAR (I spelled that wrong so I sounded like an American innit… sorry Americans). He’s beardy-ish and all kinds of lovely.

Right then, so yesterday I explained that writing my blog in a morning IN ONE FUCKING GO would be my training for work. I also warned you that you’d be in for a challenging ride in terms of entertainment; I think paragraph one proves my point. Still, I’m here, again, sat in bed trying my very very best to get my words into some logical order and most importantly trying to get them typed. I suspect I must have been fingering a venus fly traps arse (do they have one?) in the night because my fingers feel like the teeth of a hundred angry piranha have been having a go. Which is new for me. Now this happens from time to time, I get “symptoms” that appear one day and then go the next, but I need to be right careful because, you know what? You might have sore fingers too one day and this does not mean you have what I have. It means people sometimes get sore fucking fingers and I shouldn’t try and wedge every physical ache and pain in the same jar as my “symptoms”.  Everyone can have aches and pains, it’s normal. Very few people feel pain free and happy as larry (who the fuck is he anyway?) all the time.  So, I had a word with myself and me and me other personalities agreed; I need to suck it up and I need to keep typing because I can guarantee that when I do get back to work no one is going to be that impressed if I need to go and rest because “my fingers hurt”. I’d get my jotters.

It is right interesting though, when something new pops up because you do wonder if it’s normal or if its the start of something else.  I wouldn’t say I’m particularly hyper aware of everything my body is doing or showing me; sometimes that’s a very good thing because if I were I’d be laying in bed panicking. It’s also a pretty bad thing because it means I don’t get shit seen to as quickly as I could and it escalates. I’m not a natural born worrier, I take far too much in my stride when it comes to lots of bits of life but I am impatient. Really impatient. When I decide I want something to happen; it needs to happen quickly and right now… well I want lots of things but the thing I NEED is to shape my day to day into a new normal and try and reclaim a wee bit of the old me back.

So what does not being hyper aware but being impatient mean? It means I’ve a tough road ahead if I’m honest, primarily because I will absolutely go at this 100%, knacker myself, get pissed off and have to start again. This is my personality in a nutshell. This is why my consultant did his very best to ground me when I went to see him on Wednesday.

He asked me to explain, briefly, what challenges me most with my condition. Now bearing in mind that I hobbled in there on a walking stick because I felt someone had been at my legs with a baseball bat, and that my joints were on fire, and I STILL have those icy bastard goosebumps, and I had a sore head, and my body felt like lead and I was SO tired and blah blah fucking blah, I said “I can’t cope with my cognitive delay and confusion”,  or some such words, I dunno, my memory is wank – but it was that kind of sentiment. He was taken aback when I said that I think – he explained he’s more used to talking about the fatigue side of the illness and how to get through the day. It’s at that point I realised my approach to this is probably slightly skewed because, the fatigue CAUSES the cognitive shit storm that’s going on AND the aches and pains and everything else but in true Sarah style I have been pushing myself most of the time to try and gain clarity. See I’m alright with getting through the day with the physical symptoms; I’m lucky enough to be able to push through because so many can’t; but I’d like to do it with a clear head rather than feeling like a drugged Haribo.

I have become so used to feeling pain, like my body is filled with cement and having no energy that I almost take that shit for granted now, I file my responses to the aches and pains under “non value add” but my brain, well I have days where cognitively I feel switched on, not sharp, never sharp anymore, but not like someone who’s on a different planet. Those better days are the best days for me; I might be a mess physically but I can still be laughing and joking and talking to you crowd but on my bad days? Well it’s like I’ve had something stolen that makes me… well me. I absolutely yearn for things I can remember but I don’t really remember being pain free any more….. so it doesn’t occupy my brain space if that makes sense?  I’m not sat wallowing in my own piss bemoaning it all by the way, I just mean that I can’t remember the physical feeling of my bones and body being healthy, so I just get on with it…but the variables? They’re harder to let go of because you know they are just within reach; you’ve just no bastard idea how to get to them…. and no, rubbing your elbow doesn’t help.

When I was sat at that appointment explaining all of this to him I could see him giving me one of those knowing smiles. I fucking hate them. It means that someone is about to catch you out and I had, unwittingly, walked into his net hook line and sinker. He went on to draw me a picture of the average energy spectrum; you had couch potatoes who choose not to excel (they are probably very capable). Next in line is the normal crew who show up, do the do and then go home within the parameters of normal effort and sustainability. Then you have my crowd. Yep, it turns out that I am indeed a victim of my own persuasion because, I push – constantly. I want things to be “right” and the best they could be. I want to feel like I’m doing the best I can, like there’s no wasted effort anywhere and like every minute I’m switched on I’m doing something valuable. I’ll set myself goals, even now, like returning to work by X date, or by staying up till X time and I will move fucking mountains to make it happen. My profile of exertion is extremely common within the ME/CFS community – if you read any of the stories out there you’ll come across a huge number of “best in game” sports people, professionals, tycoons, parents who have fallen foul to this. So what does that mean? Well fuck all in real terms to be honest but it means our fall from grace is that bit harder; our standards are higher and when we fall to couch potato status (as most of us do when ill) then we look at what we USED to be and fucking cry in despair… but… why shouldn’t we be happy getting to “normal crew” level? We should, that’s the whole fucking point. So I need to get a grip. I need to make sure I listen to my body sensibly, without histrionics and melodrama, but in a way that says; “Ah you need rest? Rightio, lets give you some… I’ll stop this project management in my brain, put my phone down and just BE”. Sounds easy right? Not for me. I always have a number of thoughts and things on the go at one time; this blog is a prime example but when I’m better I also want to explore writing professionally, and I want to open a food empire, and I want to earn a decent living and solve a million other problems; my brain never stops and THAT’s why I’m so fucking tired all the time, because my body doesn’t have the sort of energy I need to sustain it. My battery charger is broken.

Ahhhh, I know what you’re thinking; Mindfulness…. and you’re right, it’s got it’s place and I do actually practice it but it’s not the answer for me. CBT is also useful but it’s not the answer to my problems. The answer is me, being more realistic now that my landscape has changed.  That’s the bit I need to nail – my own expectations and the expectations of others around me who are very used to the old duracel bunny Sarah.

I am trying though. It was a bit of a lightbulb moment for me that – realising there is something I can CONTROL that might make a difference is empowering and, given all I’ve just said about my personality I think you and I both know it feeds right into my comfort zone. So, I’ve had a slow start to the day, an early one, but a slow one. Bollockchops woke up just after 5 and demanded to watch Dinosaur Train but as much as I tried to get my head round using the telly remotes in the dark so we could watch it in bed…. I couldn’t so I gave up and took us downstairs when my fingers very nearly made us watch Pretty Woman and then a Mafia drama. No one needs that before 6am. No one. Those fucking bedside lamps may look pretty but they’re shit when you need to do something in the dark; they give off as much light as a Glow Worm. Not the natural kind either, no the 80’s toy glow worms with heads as heavy as concrete… for that extra deep sleep.

glo-worm-e1344018659703.jpg

Fuck me they were creepy weren’t they? I must have been hard as nails when I was a tiddler because that sort of shit was a walk in the park; nature was what I was afraid of – crows pecking my feet in the night and snakes biting my arse while I was sat on the toilet. THOSE were the things that sent shivers down my spine. Not the hard headed glow in the dark worm that looked like it wanted to eat your liver. HARD. AS. FUCKING. NAILS.

10.12am  now,  2012 words down and a graphic. That’s not bad going to be honest, I mean, if you judge it on quality then I guess I’d be fired but given the state of play today, I’m happy with my “progress”. Fucking hell this must be how athletes feel when they get in training. My arse is numb, my head is cloudy and my poor wee fingers.. oh my…. yep, exactly like an athlete.

The days not set to get any more exciting either – THANK FUCK. I know, I know, I should be missing not scaling a mountain or some such shit…. but I don’t. I swear to what ever divine being there is (The Wee Man, in his house) that I do not feel envious of all these outdoorsy types; it’s one thing I don’t miss having the ability to do – in fact it’s a great fucking excuse for not traipsing round in a really fucking dull circle for the sake of “getting some fresh air”. What’s wrong with the air in a nice restaurant? As I’m sat here now its pissing it down with rain, literally hammering it down. Has that stopped the Valda-Ri squad? No it hasn’t. There’s about half a dozen of them that woke up this morning, looked out the window and thought “Yes, today is a good day to walk the coastal path”… they’ve even got mountain fucking sticks with them. IN KINGHORN! Who needs a fucking stick to walk in NO TERRAIN. Ah.. hold on… I do… fair enough.

I will need to get a shower at some point today mind, yesterday, after writing the blog I had no choice but to STOP and do literally piss all till about 2.30 when I rallied and went to prep dinner and get the wee man from nursery. I suspect I’m in for more of the same today, regardless of my intentions.

I’ve got to say, I’m a wee bit worried that if writing a few words from the depths of my twisted brain is THIS hard that I’m going to have an absolute head fuck when I go back to work BUT it’s only training day 2 and I feel certain I can improve. My normal working patterns are Wed-Fri so really, this is my last day at “work” and tomorrow I’ll be writing at my own pleasure and speed – you never know, you might even get some quality content then too rather than this horseshit. I need to sort out my working hours for my phased return to work and I’m hoping that might help me plan and prepare. The advice from Mr Specialist is to run my return to work as long as I can on a phased approach; so that means I start doing a few hours a day with some annual leave scattered in and building up over as long a period as I can until I’m back working 7am-3.30pm. I’ve got annual leave to use, which will seem like I’m a cheeky bastard when I go back and get it booked but I guess I have it, and I need it, so I should use it…. I just need to make sure my gaffer knows I’m not taking the piss.

In fact my whole return to work needs to be treated really carefully. There’s a huge temptation for me to do what I did last time; try and make people feel comfortable with my situation. Lovely lovely work friends would ask “are you feeling better?” and I had no idea HOW to answer… If I say no I turn into one of “those” folk that trap you with their life story, and we all HATE them. They make us feel uncomfortable and like we have an actual itchy arsehole butttttttt if I say yes I am feeling better then I’m a fucking liar.

I don’t mind being a liar when it doesn’t have repercussions but being “better” means I am back to normal. My version of normal was fast paced, high pressured problem solving and strategising (some of my workies think I have a lovely time dealing with fluffy people stuff… oh how I laugh);  I am not my version of normal and if I lie and say I am, then people’s expectations of what I CAN deliver will be entirely skewed against what I’m CAPABLE of delivering. I’ll either look lazy or unmotivated or both; and nothing is further from the truth (in my opinion obvs and I’m my own biggest fan… clearly). So, I need a way of saying that I’m no further forward but that I’m clawing my way out of the barrel in the only way I know how… by gritting my teeth and giving it all I can. I don’t know if I’ll succeed or fail but I know I need to try. How do you even say that without people thinking you’re a massive bell end or a victim?  How do I explain that I may be able to do something one day and not the next? Or that I need to have a lie down after being on a conference call with more than one person because the stimulus has sent my brain crashing around itself? How the fuck do I keep myself useful when I have soooooooooo many limitations? I’m genuinely worried that I’ll be of no use at all… it’s my biggest fear about all this but I need to face it and see where I am and what I can do and that’s not going to happen by being off sick. Also: I NEED TO WIN THE FUCKING LOTTERY.

Before all of that though, I need to go and prepare the burger mix for tonight because it’s Friday and that’s how we roll in this house. I fucked with Burger Friday these last few weeks and utterly regretted it so its back to normal tonight.

Have a great weekend, thanks as always for your support and for reading my tripe. You’re all like my own wee cheerleading squad and I reckon I’m only THIS sane because of you guys. Yes, you’re right, you must try harder…THIS sane is not very sane. You suck at this.

Big love

S

Clocking out time after editing: 12.14pm – fuccckkkkkkkkkkkkkkk

  • Highlights
    • FRIDAY – this means 2 solid days with my 2 favourites. I’ve no idea what our agenda is but it’ll be grand just hanging out and laughing… mostly at Eli who is becoming a cheeky little twat, mostly at my expense
      • It also means burger night obvs hooray!
    • Day 2 of Fake Work done, I’m knackered and I genuinely didn’t think I could do this today… but I have. I dunno what the price will be just yet but I reckon it’ll be worth it if its helping…. but if it’s not… fuuuuckkkkk.
    • Eli is doing really well with toilet training now. He managed a whole day at nursery yesterday without pissing himself but did have a mega shite in his nappy at what was supposed to be nap time. Only MY child would choose sleep time to have a shite. He stunk out two rooms apparently – they thought more than one had shat. I am so proud. I was no so proud that he didn’t sleep…. fucker
    • We seem to be bug free in the house now. Eli’s bug has settled, Christiaans not ill and neither am I… I hope we’ve escaped!
  •  Low lights
    • Gah, sore, tired, brain not working… you know the usual
    • It’ll be 4 weeks tomorrow since I started my CBD and I’m not seeing any difference at all. Next week is “full term” which means my body’s endocannabinoid system should start to wake up and I should hopefully start to feel some benefit. You can read more about the whole process here if you’re interested: Click Here
    • This is taking way fucking longer than I would like… this writing malarky
  • What’s on the menu Mellars?
    • Breakfast –  Ere Sophie, I had more yoghurt with raspberries but went fucking wild and chucked in some melon too. I can highly recommend the Skyr Light and Free Raspberry number… its nice.
    • Lunch – Not sure yet but thinking either egg salad or the rest of that bean casserole, because farting burns calories and I need all the help I can get
    • Dinner  – MOTHER FUCKING BURRRRRRGEEEEEEEEEEEEERRRRRRRRRR and salad and chips. Epic. Welcome to the weekend.
      • I post pics regularly on my Instagram account if you want pics of some of this grub by the way – you’ll find a link to follow me here: CLICK HERE my pics all look like road kill but if I post a pic it’s because its tasty. OR wank and you should avoid making the mistake. Whatever. There may also be pictures of cats and kids. Not included in the meal… I’m not an animal.

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… a bit of a shit one, granted.

 

 

 

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