Thursday 9th August 2018
Hnnnnnnnnnnnhghhhhhh…Fuuuuuuck. Oh! It’s working! Hooray!!!!!! Hello world, this is brain. Brain, this is what it feels like to function. HELLO EVERYONE.
So, it’s been over a week since I wrote to you all and that’s becoming more and more of a “thing” now – which is depressing. When I first started TryingToDoItAll I was convinced I would be able to write daily, but it turns out I’m more of a fucking idiot than I suspected. As the days have rolled on and I’ve dropped a wee bit deeper into the well of this bastard crash I’ve had to be really savvy about how and where I spend my energy. Some days I physically can’t make sense of the worlds and letters and can’t write, other days I know that if I allow myself the brain space to write then I’m effectively scoring something else off the agenda for the day; like walking. This last week has been a really difficult one to juggle – not because we had many many plans… no… but because there have been different trigger points for me which has meant my symptoms have taken to the stage like Catherine Zeta Whatserface in Chick-ago.
I’ve tried to keep the Facebook page ticking over, I mean, I didn’t want you all thinking I was dead or owt so hopefully the majority of you haven’t bought your funeral hats already? If you have, freak people out – wear it to Asda or summit. Go on… dare you.
SPOONS. It seems like a good time to talk about spoons. What? You don’t see the connection between funeral hats and spoons? What the fuck is wrong with you? It’s obvious. Look:
Now, I know… I KNOW it must seem like I’m obsessed with cutlery but I’m not. Don’t get me wrong, it’s a useful bastard but its not my mini me; it does not complete me. Those of you who follow the Facebook banter may have clocked these images last week already but it seems appropriate to chuck them in here when I’m making so many fucking excuses for not writing regularly at the moment. So, spoons…..well they signify units of energy for us poorly sick crowd. Some days we wake up with 12, other days 22, and on bad days maybe 5. Each activity, whether it be mental or physical needs to be traded for a spoon and when you’ve run out; you’ve run out, there’s no borrowing from someone else, or buying any more – there is a worldwide spoon shortage.
Now if you a have normal functioning body you have so many fucking spoons you could build a megaspoon monster and have it charging round down with gleeful abandon kicking the fuck out of similar sized dragons and giants. You could coat a whole house in spoons if you wanted to – yes even when you’re feeling knackered from being up all night, that’s how powerful “normal” is. You’d feel shattered but you could push on until you needed to sleep. For me though, it’s a wee it different, if Eli has been up in the night a normal 12 spoon day reduces to around 8 spoons because already my body doesn’t have the baseline energy it should and at the moment my “normal” baseline is woefully short compared to yours. If I need to go to Morrison’s I use spoons getting up, dressed, to the car, driving the car, getting out from the car, walking round the supermarket, paying, walking back to the car, driving home, getting from the car to the door and so on. That’s 9 spoons. On an 8 spoon day it means I’ve done too much and I effectively crash – i.e. I cannot do any more and basic functions start failing until I rest and recharge. I lose the ability to think, talk and move as my body tries to redirect any energy it can to keeping my body functioning until I can stop and shut down. It’s fucking mental. There are days that I wake up and I feel like I have 20 odd spoons and in real terms this means I wake up feeling mostly as you do when you have a bad flu virus and for me, right now, those are good days. Those are the days where I can manage a trip to Morrisons, and B&Q and maybe even sit out in the garden: ALL IN THE SAME FUCKING DAY. Those days are the days where I’m living the vida loca baby.
Depressing innit? Nahhhhhh; I can’t let it be, there is no room for self indulgent pity in my life now – it’s wasted energy. You know what it has done? It’s meant that I lick that spoon fucking clean before I give it over. It means that the majority of time I do the things that make me and my family happy FIRST before the mundane shit in life. It means that when I crash I have a physical receipt for whatever I’ve done. Every crash, although it’s unpleasant is like an intense course in Mindfulness; it forces me to stop and just “be”, and it’s why I take sooooooo many pictures on my phone – I have a lot of time to fill. Every single night without fail I mentally relive and file my day through whatever pics or videos I’ve taken on my phone. I remember Eli’s face, or him laughing and I get to smile all over again…. except for when I take a pocket video and I’ve spent 4 minutes watching the inside of my jeans before I’ve realised what the fuck is going on. Those videos are confusing and weird and my pocket looks a lot odder than I imagined it would.
Spoons done. I hope that explains why some days I can write, and some days I can’t. It should also help anyone who sees me with my walking stick one day and without the stick another. My walking stick is part of my toolbox now, it helps me save energy by pushing the pressure that should be going through my incredibly sore fucking legs through the stick itself. It’s not that I can’t walk; I can, I mastered it at around 18 months old – it’s that the stick makes it EASIER and more energy efficient which means I can do more on a day when my spoons are low. Most of the time my pride stops me using it but I can only use that excuse when I’m on my own, our Christiaan makes me use it when we’re together and I can’t argue with him because by using it and I’m then saving a wee piece of energy that he and I could be using to have a laugh later on. So, I do as I’m told because I adore that man and I would rather spend every minute laughing and loving him – if that means I feel like an extra from Last of the Summer Wine then so be it. He’s worth it. *flicks hair*
Now I don’t want to be painting a picture of someone who has been utterly bed bound this last week – I promise I haven’t been, in fact I’ve managed to get out and about a wee bit. It’s just mean that I’ve had to divert my blog energy to life energy instead. We took Eli on his first ever train ride and he almost shit his pants with excitement (I had a nappy on him, don’t panic… Scotrail is not awash with my childs shite). Ever since his Nan and Grandad arrived, and then went home, on a train he’s been a bit obsessed with the idea of them so we thought we’d give him a wee jaunt out. Normally I’d have suggested taking the train over the Forth Rail Bridge to Edinburgh which would be about a 35 minute ride but it’s Edinburgh festival time here and every train is rammed with Fifers en route to some show or restaurant or other; it’s fucking mayhem and the train companies fail to put on enough carriages every bastard year. It’s no place for a toddler. So that was out, but we did go from Kirkcaldy to the dizzy heights of Inverkeithing and back again – so 23 minutes there with a 7 minute turn around until the return train. Never, EVER underestimate how angry an almost 3 year old can get in 7 minutes. He was livid that he couldn’t get on every fucking train that pulled in and even more pissed off when they drove by without stopping. Those 7 minutes felt like 7 hours – as you can see from photo one, he was not fucking impressed that he couldn’t get the fast train to London, or Plymouth, or Manchester. The second pic is like a snapshot of a different day – he’s having a lovely time; clearly a fucking psycho. It was good though, and it was a low impact activity that I could do without fucking myself too much so… winner.
I also managed to get my hair done. Sounds easy enough right? No. No it fucking wasn’t. Last time I went it took me near on 3 weeks to recover and this time wasn’t any easier. The noise and chemicals and chat and hairdryers and heat…. I think I may need to admit defeat for a while until I’m a bit livelier. Still, at least the greys aren’t on parade any more.
The BIG news though, is I went OUT OUT (hence the hair getting done for the first time in almost 4 months). Not to B & Q either! To a restaurant! AT NIGHT!!! WITH THE OTHER PEOPLE!!!! This is a huge fucking deal for me. It’s the only third night out Christiaan and I have had in 3 years. OK, so it wasn’t a wild one, fuck, who even has the energy for that at our age? And yes, it was with my family for my parents wedding anniversary but who gives a fuck? I WAS OUT…..annnnnd then back home and in bed for just after 10. So not a wild night but definitely a lovely way to spend a few hours and I actually enjoyed getting dressed up and ready – it knackered me right enough but at least I was reasonably chuffed with what I saw in the mirror. Shifting that weight has definitely helped me feel a bit better with how I look, which was a bit of a revelation really because I was never that arsed that I looked like a Fraggle Catcher on steroids but look… a big difference.
Did I pay for it? Course I fucking did. I came home, passed out, was up in the night with bollockchops and then woke up look like a swollen testicle after playing shots roulette…
Good while it lasted though right?
So going out happened on Monday night after a pretty full on day with Eli where he was being all kinds of mental. I didn’t think too much of it to be fair because he’s off his head at the best of times but when we got home from our meal he had become really restless. I had him clocked though; he was playing up because we’d gone out and left him. No not on his fucking own, with a baby sitter. Jesus. Anyway, I thought he’d was at it. Turns out he wasn’t. He was ill. We know this because he was crying on and off all night and I was in and out of his room for “cuddles” before he screamed himself awake at half one with a really high temp. He came in beside us after more than an hour of trying to settle him in his own room, tossed and turned for another 2 hours and then passed out so I manged to get him back in his own bed around 4 I think. He was up again at 5.30. Poor wee man just wasn’t right. He couldn’t tell me what was wrong. Well he could, he said he had a sore throat but he says that eleventy billion times a day anyway; he has no idea where his throat is. Sooo Tuesday was filled with Calpol, power naps and a hugeeeeeeeeeeeeeeeee amount of cuddles while poor Christiaan had to try and work on about 2 hours sleep. This kid gets seriously clingy when he’s not right. We had a repeat of Monday night on Tuesday night which meant, yesterday, the day I had my appointment with my M.E. specialist (yep the one I’ve been waiting for since last September) he couldn’t go to nursery. Literally couldn’t. There was no way I could send him. He was poorly sick.
I also couldn’t take him with me. It was an hours drive away, to a hospital (where people go to get better rather than sicker) an hour and a half consultation and an hours drive home and he’d not have coped well with that on a day he was feeling fine, far less feeling like shite. Christiaan had taken the day off to take me and sit in on the consultation, because I’d not manage to drive there far less process all the info and drive home again. I was starting to panic a bit until my Dad stepped in to sit with him for the time we were out. My Dad and Eli are best friends, they play constantly, laugh constantly and eat chocolate together – it was perfect, unlike my sons timing.
So he stayed and cuddled into Grandad while watching all kinds of shit on telly and we went to my appointment. I know I wasn’t expecting miracles but I was still hoping for them. The specialist was lovely, he obviously understood the condition, the triggers, the challenges and he’s going to work with me over this next wee while to help me manage them… but there is no cure. We knew that obviously but I think everyone still looks for a pot of gold at the end of a rainbow. The good news is my prognosis is good; it doesn’t mean I’ll shift it but it means I’m unlikely to deteriorate to the point of severe M.E. where I’m bed bound and struggling to breathe and eat etc. That’s epic, obviously, but me being me had never considered that a possibility so as much as it was positive, it’s not a relief if that makes sense? The bad news is there is no magic button that he can push that will make me ready to return to the real world of work and family life. Time and consistency are the only things that will help and it could be that my life has constant peaks and troughs going forward; which is what we already knew. What was great was hearing that good times are very likely and I’m not on a downward spiral forever – for every high there comes a low and vice versa. So it might be shit right now, but I will have periods where I can be more active and engaged and those periods can last days, weeks, months, even years if I’m lucky. I might crash again but it might not be for a decade – how fucking awesome would that be? So, in that respect I have an awful lot of hope, but for now, it’s just a case of plodding on and trying to get my body to calm the fuck down and begin recharging properly.
There was an awful lot of really interesting stuff in yesterdays meeting – he explained the difference between feeling tired and feeling fatigued which although sounds really fucking obvious isn’t. The body needs to sleep to try and recharge and when it needs to sleep it shuts down a bit so that you stop what you’re doing and sleep… this is what I call my “shut down” points when I struggle to function; this is happening because I’m tired. Day to day though, I’m fatigued which means everything is an effort – everything. It means I feel heavy and that my body is misdirecting energy all over the place to keep itself going. It means nothing is easy and nothing is clear, not my brain, not my body, not even the basic senses.
He also explained that if I want to get back to work then I need to start training myself now to be active during the periods I want to be active in a few weeks. It may not work, because I may not be ready but I need my body to manufacture enough to keep me going during that cycle of activity continuously. To be clear, “active” doesn’t mean physically active, it means mentally active. So today, my lovely friends, you are my experiment.
It’s 9.36am, it’s been 2 hours since I started writing and it’ll likely be another hour before I’m done. Yes, it takes a long fucking time all this because… well… HAVE YOU NOT BEEN PAYING ATTENTION? At this point in 4 weeks time I want to be “at work”, which basically means sat in my office in the house, with my laptop on, speaking to the world, designing and implementing people strategy and presentations, writing and replying to emails, attending voice conferences and taking direction from the needs of an organisation of nearly 500 people. It’s a big fucking ask when I get knackered after a few minutes on a phone as is. So I’m in training *insert Eye of the Tiger music*. You guys are my first “activity”, writing this blog in one go is my first challenge – at this point, I have achieved 2607 words on a page (it’ll be more after I’ve edited it, don’t go fucking counting them… pedants). These words are brain farts, which basically means I know what’s coming and what I want to say because they are there, the events have happened, I do not need to be creative. These words should be a walk in the park. These words aren’t and I’m fucking knackered already.
Fuck me, this is going to be tough….
I hope you’re all strapped in, I fear that you’re about to be assaulted with a multitude of shite for the next few weeks while I “get ready”.
Read at your own peril; you have been warned.
P.s. I’ll schedule this to publish later, no one wants to be reading this horseshit this early on a morning. Especially not me… and I’ve still to come back and edit it later… wahhhhhhh.
P.p.s – thank you to everyone who has been in touch this week wishing me luck or checking how things are, your support is pretty fucking awesome and hugely appreciated.
Right, I’m off. To rest and shit.
- ME Specialist initial consultation DONE. It took a lot out of me but I’m in bed today recovering so it’s all good. I’ll be seeing him again, a bit closer to home, in the next month or so
- I shifted 1.5lbs this week, I had hoped for more to be honest because I didn’t understand my gain the week before but its all semantics; it’ll catch up
- I went out OUT; only for 3 hours but I enjoyed it and felt good about myself
- Eli went on a train and LOVED it.
- Got my hair did
- Low lights
- I’m fucked. It’s been a tough week and I’m really hoping I get these few days to rest while Eli is back at nursery.
- Getting my hair done fucked me… again…
- Eli’s been feeling rotten which is shit. I hate seeing him poorly 😦
- No quick wins on the old “find me a fucking cure” front. I’m an idiot for being hopeful I guess.
- What’s on the menu Mellars?
- Breakfast – Just a yoghurt so far
- Lunch – left over bean casserole with a wee bit o brown rice…. cheeky
- Dinner – Sausage casserole and wedges I think – it’s a favourite of our Christiaans. I know how to treat my men!
- 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 over there >>>
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 #meblogging
ME Blogger extraordinaire… a bit of a shit one, granted.