Sunday the 20th of May 2018
So, bit quiet last night right? Those of you who follow my Facebook page may have seen me explain I’d not had a great day, but for those of you who don’t, well…. there was no blog last night. The world had less in the way of moans and whining because; I didn’t write a fucking word. It’s the first day I’ve missed since the 29th of March. Even at my worst I’ve managed to cobble together something over the course of the day, it might have been shite, but I had managed it. Not yesterday though, yesterday was a fucking killer so I didn’t manage to do very much at all… I won’t say sorry, because that hints at the fact you’ve missed out on summit, and actually it may very well be a blessing to those who feel they need to read each night. So, I hope you enjoyed your night off, back to business tonight, so go and find your violin and your pity face and I’ll meet you over there in “woe is fucking me” corner.
So what happened? Nothing. I “just” shut down which basically means I couldn’t write/speak very much and had no option but to sleep. It’s a horrible thing to see from Christiaan’s eyes and it’s a pretty upsetting ride for me, but it’s all part of this fucking stupid bastarding illness. It happens regularly unfortunately, it was just that yesterday instead of it hitting me like a bus all at once it hit me in stages. I guess I should have known – it’s normal for me to lose cognitive function after a period of prolonged brain fog, it’s kind of like the full stop. I’d have struggled to order a curry far less write a blog. Fuck it I would have struggled to eat a curry n all.
The day itself had been really quiet, we were all a bit knackered because Eli had a shitty night (hello 3 hour party from 12-3am) and then refused to nap, but normal tiredness is normally a walk in the park for me, it’s an utterly different feeling – in fact, it almost bears no relation to what the M.E. Army call post exertional malaise which is what I’m used to living with most days. I guess being up in the night *could* have had an impact but Eli slept in till almost 8 to recover so I ended up with about the same amount of sleep? Who knows. I’d done nothing all day because it was warm and sunny, so I sat out in the garden of broken dreams, Christiaan had taken Eli for a walk to the butchers and my Mum came round in the afternoon. That was the sum total of our day. I should not have shut down, there was no reason… but I did and it was pretty horrific. So I was in bed, asleep before half past eight and I stayed there until Eli woke up at just before 7 this morning (thanks for the lay in sonny boy!).
Do I feel better? It depends on what you define as better I guess. I can talk and type again yes, but you don’t feel better after sleep with M.E. – it’s one of the most telling symptoms; non-restorative or unrefreshing sleep so I still feel like my energy levels are on the floor, possibly sat with satan having a cup of marmite (evil stuff), I’m still sore and I could sleep for a million bazillion years and still be knackered. Do you know what though? I’ve had another “fuck you” day as a result. I followed all the rules yesterday, and all last week actually and it made no difference, I’m the worst I’ve been so, today I got up and made myself shower, it was kind of a no brainer since the time of Dr Alban is upon me. We got dressed and pondered going to the wee garden centre to get some more alpines. I know what you’re thinking; we’ve killed Alan Titface and have him locked in a Fritzl cave. We haven’t. We don’t even fucking like gardening. It’s just that we’ve neglected the place for so long its time to sort it the fuck out…. so we are. We could keep putting it off but the last 2.5 years have seen me have a C Section, a baby, spinal surgery and a year and a half of M.E. so just in case life is planning to throw any more shit at us we’re better getting it sorted now. The wee man wanted to see sharks so we went to Deep Sea World first, followed by a v quick visit to the garden centre, which isn’t so much a centre as a yard and then on to Tony Macs for lunch. We never go to eat out as a family because of my “change in lifestyle” and the fact that Eli is a fussy little fucker but there was pasta AND ice cream on the menu so we couldn’t really go wrong. Except we did, because it’s not a pasta sauce that Mummy made which caused a bit of grizzling to begin with but I lobbed it down his throat and he was happy when we moved onto the ice cream. I ate pizza, and a few chips (no dessert) which clearly is not following my fat club rules but to be honest, after yesterday I think we needed to be OUT. So we were, we ate out as a family, Eli didn’t nap bar 20 minutes in the car…. we BROKE ALL THE RULES.
Now for anyone who isn’t local the whole trip probably sounds hugely adventurous for someone like me; it’s not really, it’s pretty low impact. 15 mins in the car to get to Deep Sea World – easy, I just sit on my arse with my massive sun glasses on. As an adult the whole place would take about 10 minutes to walk around, it’s tiny…. as a 2 year old you’d probably do circuits, so then it’s about 40 mins while your mother sits on various benches round the place and your dad goes round with you, all the while sharing your excitement at more fucking sharks. Back in the car and 5 minutes to the garden place, we were there maybe 5-6 minutes choosing the plants, paid up and back in the car. Another 5 mins drive sees us at Tony Macs, my only exertion is to walk from the car to the restaurant so maybe 10 meters? Someone else cooks for us and washes up while I sit down. Then a 20 minute drive back. We were only out for a few hours, I walked very little and spent the majority of the time on my arse but I’m absolutely bone tired. I tell you what though, I loved living in the real world…. look. (the selfies are me sat down by the way, I did my eager I AM HAVING FUN face for your benefit… you’re welcome)
Yes I looked like a tit being sat down on my own. I probably should have had a bag of boiled sweets and a sign that said “I want to steal your kids” but fuck it, I was able to go out and spend the day with my husband and my boy…. and M.E. ….everyone was a winner.
Am I paying for it now? Absofuckinglutely. I’ve been on the sofa since I got back and I’m unlikely to move for the rest of the day now. In fact, I’ll be lucky if tomorrow isn’t bad and the day after and the day after etc etc etc until my head blows up, the end. I’m fucked if I do and I’m fucked if I don’t, so while I can, I will. At least my boy is happy to cuddle in and watch Shark Tale with me and the blanket of joy and hope.
Funny innit? If I posted these on Facebook with no explanation you’d all be going “Awwwww, smashin pics those. They’ve had the perfect day” and do you know, we have for us. This is as much as we can hope for at the minute and we’re grateful to be honest; any minute I’m not in bed and able to get outside is a victory. Especially when you consider the alternative to this fucking illness. I’m going to get serious in the next paragraph so if you’re not in the market for a dose of reality and a big fucking helping of sadness I’d skip this bit…..
I was SO pissed off I couldn’t write my blog yesterday, not just because I’m a massive ego, but because I wanted to share some bittersweet news with you. If you’ve read the blog from the beginning you’ll know I’ve mentioned Merryn Crofts a few times now. Merryn died of M.E. last year, just a few days after her 21st birthday. Friday was the day of the official inquest into her death and I only found out the ruling after I had posted Friday’s blog so I was planning to cover it yesterday… Obviously I couldn’t. Her story has really stuck with me, for obvious reasons but also because it’s been harrowing reading what the family have gone through before, during and after she passed away. Too many families have been on this journey and incredibly even in the event of death, there’s a need to PROVE that the outcome has been as a result of M.E. ….and how do you do that when there are no blood tests, or scans, in fact very little discovered physical evidence to prove someone has M.E.? It’s been a huge battle for the family but they have fought hard to educate not only the medical specialists who were caring for Merryn in both a day to day and eventually in a palliative capacity but also the coroner and amazingly… it’s worked. You can read about it here. So why is that even slightly relevant to me and others? It’s huge. Merryn donated her spinal column and brain to research to help find those physical indicators so that there can be conclusive evidence of M.E. for others. She’s now also the second person in the UK to have their cause of death recorded as M.E; sadly she is also the youngest. The official recording of M.E. as a cause of death is a sign that the medical community are very slowly waking up to the reality of this condition and the devastating fatal complications that can accompany it. I want you to think of this the next time you think of M.E. and I want you to correct anyone who calls it yuppie flu in front of you. Not for me, because my symptoms are mild to moderate most of the time, I’m lucky to have the quality of life I do. Do it for this beautiful young 21 year old who had her whole life ahead of her. She deserves your support, she deserves your recognition that her death isn’t something that “just happened”. It happened because our medical community are ignorant to our illness, because the government have refused to invest any more than £2 a head over the last few years to find out more, because they spent more on security costs for a royal fucking wedding than saving a young girls life.
I’ve managed to avoid the wedding this weekend. Not because I was actively being stubborn to be fair but because I was in the garden and there’s not a huge amount of chat about it up here at all, especially not in my garden. The majority of Scots just couldn’t give a shit. In fact, I saw this pic and it sums up perfectly the the vibe of most I’ve encountered… in my garden… mostly on my own.
Mum had watched a bit of it on telly though and was telling me they had a nice ceremony, and I’m chuffed for them, everyone deserves a nice wedding day and to be honest, that’s about the level of detail I need without getting all up my own arse and angry again. Thank fuck it’s done now and we can all move on (YOU LISTENING BBC?)
Move on to what though? I’ve no idea what this week is going to bring. I need to try and get Eli in for a haircut somewhere which sounds simple but he turns into an actual demon when we go – screaming, hitting the deck, flailing arms, refusing to sit…. the works. Hes not had a decent haircut in ages because wherever we go he causes such a fucking scene that it needs to be over in 10 minutes for everyone’s sanity. I might as well get the garden shears. He can’t keep going with his mullet though, it’s making me itch so we’ll try and find somewhere on Tuesday (maybe?) and get it sorted. I’ve no idea how to get him over the fear of going; we have books, we’ve talked about it loads and he’s sat in both a hairdressers and barbers watching people for ages before getting his done – it’s made no odds, he pretends he’s all invested in the idea until its time to get it cut, then he goes bat shit mental. Last time Christiaan had to physically hold his arms down while Eli was sat on his knee screaming… its mad. It’s also pretty difficult for me to do myself so fingers crossed we can get him done on Tuesday or it’ll be when I’m on my own with him and I might resort to doing it myself. Oh how we’ll laugh at those photo’s when you’re 18 my boy. Serves you right for being a tit.
I’ve also booked to get my own hair sorted on Thursday and I really hope I can make it. I’m not one of these women that finds getting their hair done relaxing or pampering, it’s a chore. Especially right now when everything hurts and my skin is so sensitive but it needs sorting; it’s bad enough I can’t wear my make up without having to make do with split ends and a colour that’s fading faster than world peace. So I’ll need to make sure I have a quiet week I guess or I’ve no chance…. or have I? Fuck knows
- Got out didn’t I? And not to B & Q… we had a family morning and it was all kinds of lovely.
- I had pizza, it was lush.
- Yesterday was one big fucking low light and I think that’s enough for one weekend – don’t you?
- What’s on the menu Mellars? Well this weekend WAS the weekend we said “fuck it, lets eat out” so we did!
- Breakfast…. a yoghurt with apple and raspberries through
- Lunch – Pizza pollo picante and a few chips GET IN
- Dinner – unlikely, I’m stuffed
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