Saturday the 12th of May 2018 – official ME/CFS Awareness day hooray
Right then, it 6.32pm and this is the first time I’ve picked up the laptop to write allllll day. Which means two things; A – this blog will be shorter than normal, it normally takes me all day to write it because I have limited brain juice and B – I’ve done too much and rested too little today so I haven’t had the opportunity to write.
Now I know that probably sounds like a negative but it’s not really; it’s a huge positive right at this minute; it’ll only morph into a negative later tonight or tomorrow when the crash arrives. You’ll see from the date header that today is officially ME/CFS Awareness day and I think that has a lot to do with me acting rebellious today. See today was also Millions Missing Scotland event, I’ve mentioned it a lot this week because its something I’d have loved to take part in and I guess I’m a bit sore that I haven’t managed. I know that’s me being a tit – the entire reason the campaign exists is to represent people who can’t get out properly in society due their illness i.e. me (only temporarily) but; well, selfishly I WANTED to be better so that I could go and campaign on behalf of people who are in a far more desperate state than I am. There’s no fucking way though. I couldn’t have made the journey, I couldn’t have lasted the pace at the event, I couldn’t have conversed properly when I got there and I couldn’t have said the things I really REALLY want to say to the people that matter….. and then there’s the journey home again and family life after; this is before you start considering he practicalities of having an Eli. So, I vetoed it early on but I am DETERMINED I’ll be there next year.
In some ways I’m desperate to represent a community who don’t get enough of a voice, because it’s the right thing to do, but in another I really don’t want to be part of this shitty love affair at all. I want to be better. I want to be the person that can tell others “I got through the other side and I’m going to make sure every fucker knows how brutal it is so they’ll DO something to help you”.
So it’s been an odd day really. I woke up feeling like I’d been hit by a bus and I’ve been a tit and pushed through that all day because I’ve had the day and it’s meaning on my mind. I’ve stripped the beds, planted out the rest of the bedding plants, cooked a curry, washed up and then made the beds again. I know to you that sounds like a very normal day but to me it’s a lot. Actually on a good day, it’s too much; in the midst of a major flare, as I am now, it’s a really fucking stupid thing to do. I know what comes next because I’ve been here before and actually I can feel it coming already now that I’ve sat down and stopped. I’ll lose my words, I’ll start feeling confused and foggy, the pain will increase, my legs won’t feel able to take my weight and my body will feel like someone has anchors tied to every limb…. and it’ll be worse than it’s been over the last wee while because, I’m already shit to begin with. So before it goes… THIS is what took my energy and you know what? I’m not even fucking sorry. I deserve a bit of normality.
I’ve been in the garden with my wee boy, I’ve sat with him while he had his snacks and talked about why the buzzy bee was busy collecting pollen on the apple tree, I’ve planted some pansies while he played around me on his slide and I’ve read his new book to him while he snuggled up. It’s been great. It’s been how it should be. It’s taken my mind off not being able to do something I wanted to do, and being part of a community that I don’t really want to be part of, and it’s swapped it for some giggles and vitamin D and colour in a communal place I’m beginning to feel proud of; it’s been positive, and if the trade off for that is that I spend tomorrow, and maybe even the next few days in bed with only the smell of my own farts for company, then….. at least I have fresh bedding.
When you as much time in bed as I do fresh bedding is THE best thing since the moment you found your clitoris. Honestly, I don’t have enough words to explain to you how sinking into a freshly made bed in fresh jammas feels when you’re sore and tired. Actually let me try…… think of having a flu, proper flu not a half hearted version of the cold, and pushing yourself into going to a gig, without beer. Then picture how it feels when you come home, the noise stops and you finally fall into bed; THAT’S WHAT I’M TALKING ABOUT.
I wish Eli enjoyed bed so much actually, today has been a fucktonne more challenging because he decided that napping was for the weak. I can’t blame him I suppose, he slept till just gone half six which for Eli is like a 2 week cruise round the Med; he’s a 5am boy by nature. It’s meant I’ve had more “switched on” time than normal which has been hard, it also meant that he started losing his tiny mind at about 3 o’clock when he was SO tired he was manic. Right at the time we noticed that Bear wasn’t well at all. He had chucked up 8 times and shat all over the place, he was swollen and he wasn’t looking a happy boy so Christiaan nipped him round to the vets. After a thermometer up the arse and some anti-emetics they decreed he was just being a Ragdoll and the bumbling idiot has probably eaten something he shouldn’t have done…. my money is on a bee…. again. His sister Bonnie did the very same 2 years ago and ended up with a Bo Selecta face and trouble breathing; she had to go and lie in a fucking oxygen tank. All because she ate a bee. Why the fuck would you eat a bee when I spend a fortune on expensive food…. furry arseholes.
I guess the good thing about leaving it so late to type is that you can have a live commentary of what is happening now… so just FYI Eli has fallen asleep in his fresh jammas, in his fresh bedding after a bath because I’m fanatical about fresh bedding (see above) and Christiaan is outside looking at the new garden furniture that needs building. I’ve told him to leave it for tonight but I think he’s as determined as I am that I spend more time outside. It’s so good to be able to watch Eli pottering about and not need to be holding my breath in case he pirouettes down the stairs of death, but it’ll be better when I can be comfy doing it. I’m genuinely excited about being able to take my blanket outside to sit in a garden that’s full of colour and tacky plastic toys and have a doze in the fresh air; I’m a sad twat.
Of course tomorrow is set to be cloudy/rainy so I’ll be indoors, but that suits me fine. I want to get out with Christiaan and Eli for breakfast in the morning if I can, but other than that I’ve no ambition to do anything other than rest and hope today hasn’t fucked me over for several days. Mad aint it? It doesn’t sound like a lot, it ISN’T a lot but…. #ThisisMe
- I’ve turned a negative into a positive into a negative again – I am a genius
- I made a right nice curry – Eli wouldn’t try it. Twat
- The garden furniture is here hoorayyy
- The garden is now fully planted up. (there’s more than just that wanky green bag thing, I’ll take more pics when I can get back up again… probably a week on Tuesday)
- I ordered a new toaster after the last one pissed me off with its uneven browning – it arrived today… I won’t be treating myself to toast until Monday though (weigh in day)
- Fucking horrible day emotionally
- I’ve pushed myself too far and I’m pretty sure tomorrow will be a write off
- Eli nap dodged.. arsehole
- What’s on the menu Mellars?
- Breakfast – yoghurt
- Lunch – Pasta with mushrooms and onion
- Dinner – Beef curry and rice with a helping of butternut squash for me (fills me up and is less calories than a mound of rice)
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