It's not often that I talk about what I go through, so I don't think people realise what I go through, so this blog post is gonna be a day in my life that talks about how I'm feeling just for one day.
I'll still keep posting the normal daily posts, but this one is gonna be focussed on my health just for one day so that you get a very brief glimpse of what I go through and why it all gets too much to support others when I'm struggling myself and why I've blown up on Facebook at the end of the year for the last couple of years.
I'll try and remember to put some kind of divider between each section before I add to it, but if I forget then you'll be able to see in an instant just a tiny thing that I've lived with since 1999.
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I woke up an hour later than normal, in a great deal of exhaustion, confusion and my legs didn't want to move properly, so pretty normal to start the day off with. I've already been for a poo 💩 and my legs have given way for the first time today, but fortunately I was in the bathroom and I'd already pulled up my leggings so was able to pull myself to my feet using the bath and wall for support... I'm relieved that the gangway is small enough to be able to do that several times a day 😁
Time for my first pills of the day. My phone says the day begins with a T so it's time for my FA as well as my OAB pill and first of my supplements of the day.
Steve's asleep so I'm glad I've got the reminder on my phone and in my calendar so that I don't forget to take them all! I've amazingly remembered to take all my pills every day so far this week, thanks to my pill organiser and the reminders on my phone and computer.
I replaced my fitness tracking watch yesterday, so maybe that's why my legs have already given way today? Steve's milk tube things are due today too, so I hope I stay on my feet when they knock on the door and until I've closed it! At least I can use the hall walls and door to pull myself up if I do.
I've just had a reminder for my morning pills, so I'd best take them before I forget.
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That's my morning pills taken but I'm absolutely exhausted and the back of my left knee has just started being really painful, so I'm thinking I'll have to add paracetamol and B12 to my morning routine today. Gonna wait and see if I can get by without them for a little while first, so that my body doesn't have to work even hardeer than it already does.
Gotta go and make Steve's toast for his breakfast soon... at least I can lean against the counter and have my breakfast while I'm waiting for the toaster to pop up each time. Steve'll want his usual four slices but I can't decide if I want two or four slices this morning... if I have two then I won't need to stand up and wobble for so long which would be safer.
Time to start on my daily blog posts now, so time to put my public mask up for the day.
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Just been for my second wee of the day because Steve's going for a poo 💩 which usually takes him the best part of half an hour and there's no way my bladder could have held on for that long and I really didn't want to wee out in the back yard again, in case Steve's milk arrived before I'd got dressed again. Apparently I'm having 4 slices of toast according to Steve, so that's what I'll do when he comes out of the bathroom and my legs have started to recover.
He had a go at me 'cos I couldn't understand his mumbling, which has sent my mood through the floor already, so I'm gonna pop a 5-HTP, paracetamol and a couple of squirts of the B12 spray after all I reckon.
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That's the 5-HTP and paracetamol taken and Steve's amazingly come back into the living room a lot quicker than I was thinking, so I've gotta go and do his breakfast now. Not gonna risk doing mine yet in case my legs give way again... need to recover for a while first. Gonna finish off my first blog post of the day first though 'cos the crunched up paracetamol and 5-HTP have left a nasty taste in my dry mouth and I wanna give them a chance to work first.
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Just made breakfast and the pills have started kicking in now, but my legs are really wobbly. I'm just relieved that my legs didn't give way underneath me in the kitchen again, or I would have been in serious trouble and have to crawl to the stairs to be able to get to my feet!
I'm hoping today will be a pretty average to good day so that you can all read how my body feels on a good day then you'll hopefully understand why and how I struggle at the best of times let alone on my bad days.
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Oh boy, I've gotta deal with hayfever on top of everything else now 'cos the window is open and the fan is spinning, so that's something else I've gotta deal with today on top of the pain, the exhaustion, the confusion, the memory problems and everything else.
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The exhaustion is starting to overwhelm me already today, and it's only 9.11am so I'm gonna limit myself to 1 spray of the B12 so that I've still got 3 sprays left for the rest of the day.
My arms and hands have just started aching too but I've already taken a painkiller so can't take another one yet... I can barely keep my eyes open through sheer exhaustion, but everyone else needs support, so I've gotta keep on battling through.
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I've just made us a hot drink each and I really can't move for at least a couple of hours now. I'm absolutely shattered, my legs are wobbly, my knees are aching like mad and my hands have joined the pain-party now too. This is what every day is like for me though 🤷
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This morning's paracetamol has now worn off and I can't remember if I took the B12 or not. Gonna spray one squirt onto my cheek now, just in case I didn't... hold on and I'll do it now while I remember.
Just squirted it, but the spray went everywhere except my mouth, so I had to go and wash my hands and my legs gave way again so had to pull myself back to my feet using the bath for support. Again.
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I'm shaking like a leaf in a storm now, but that's normal too so that must mean my body wants some food, but it's not safe for me to cook anything other than toast, so I'll have to wait until Steve's hungry and can be bothered to cook. If it's anything like yesterday though, it'll be bread and spread for lunch again. He's only cooked for us once this week when we had the burgers on Tuesday so I doubt he'll cook again this week so it'll be more bread and spread despite having a fridge freezer and cupboards full of food.
It's supposed to be pizza today, so that's easy enough to cook right? Just pre-heat the oven while getting the pizza's out of the freezer then bung them in the oven for 20 minutes then get them out, cut them up and eat, right? I'll give Steve until quarter past then try and summon up the courage to do it myself.
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Steve was still asleep, so I've just put the pizza's in the oven and set the timer on my phone. In 12 minutes I've gotta go out and change them around apparently but that just won't be anything even approaching safe so they will have to be burnt/undercooked and whole because Steve didn't want to do the cooking again.
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Just struggled to switch the pizza's around and Steve's is already slightly burnt and mine barely warm, so Steve's gone out to look after them now and I'm gonna put my laptop on the floor in preparation.
Be back after lunch!
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Back now and I'm feeling really proud of myself for managing the majority of cooking our lunch myself... it was just the cutting and plating that I didn't do because I'm not tall enough to be able to do it, but that and plating up was the only thing I didn't do for our lunch today. I've stopped shaking and my mood has lifted ever so slightly so I've just gotta wait for Steve's delivery now.
I was debating about splitting this into two sections because it's already for so long, but must have forgotten 'cos I'm still writing it after lunch 😜
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My knees are currently going "what on earth were you thinking?!" so I hope they hold me up this afternoon❗
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Just had the reminder come up for my lunchtime pill-taking time... my 8th of the day so far, which means it'll be at least 10 pills I've taken by the time I head to bed tonight. Bear with me while I crunch it up then swallow the bits... I hope Steve's delivery doesn't turn up while I'm taking it❗ 😟
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OK, that's the lunchtime pill down the hatch and I've managed to take all my pills so far this week instead of usually missing at least one a week 😀 Still got 3 days to go though, so I've prolly spoken too soon and jinxed it all now 🙄
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Cor lummy... it's not even 3pm and I'm already flagging so I'm definitely hoping for an early night tonight and hopefully I'll fall asleep as soon as I crawl into bed. I'm grateful that the worst of this morning's hayfever has significantly reduced now... it'll be back in a few hours, I can almost guarantee it, but right now I'm making the most of it.
I thought someone was at the door just now, but they weren't, so my legs and energy and motivation and stability levels were all used needlessly which means there's even less for me to be able to use for the rest of the afternoon now 😞
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Steve's milk has just come through the door (thankfully) so I'll go and make us both a hot drink then hopefully not move off the sofa until I head to bed then.
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I've made us a hot drink each so I'm not going to be able to safely leave the sofa for the rest of the day now and my legs are wobbly and killing me again. It's a good job that I'll be taking my last two pills of the day in a couple of hours then I can head to bed and recover until tomorrow when it'll all start again.
It's been a pretty good day today, thankfully... my legs have only given way a few times, I haven't had to ask for too many reminders, my head has been pretty clear, my mood has been pretty stable, I haven't wet myself or thrown up, I've taken all my pills and I haven't needed to crawl to the stairs after collapsing in the kitchen without being able to get up, so today has been a pretty good day so far I reckon. Just gotta remember to publish this then link to it before I head to bed tonight now.
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Our internet connection has just died, so I've had to ask Steve for the wire for the router so I'll be hearing about that all afternoon now. One of my friends has been going through a particularly rough time and has to self-isolate now, so I'll be doing what I can for them via email and hoping I don't need too many wee's this afternoon 'cos my legs just won't be able to cope with it.
My glasses need a good clean and I need to get my eyes tested that is about 18 months overdue, but after paying for the electricity and groceries I just can't afford it.
Friends are talking about going on holiday and stuff when the Covid restrictions allow, but I've been on one weekend away to Scotland for dolphin watching (but didn't see any unfortunately) since coming out of hospital in 2003 and I've never left Britain in my life... never even had a passport!
My connection still hasn't returned, so I'm gonna have to put this into a Word document then reboot... just what I didn't need this afternoon, along with the pain and weakness and wobbliness and exhaustion and all that other jazz I go through every day.
BBS I hope.
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Back now. There was a Windows update that made my internet connection die or something. It's back now though, and I've been for another wee while my machine was updating and rebooting and I ended up on the floor again, but couldn't get straight back to my feet 'cos my legs were just too weak, so I was sat on the bathroom floor for a few minutes before I attempted to get back to my feet again.
My thighs are killing me now as well as my knees and back and head, but apparently this never happens 🤷
I've made myself one last hot drink before I head to bed which has just about taken me over 2 litres today, thankfully.
I've just asked Steve to help me to water the tomato's later on and he's just dropped his shoulders and head and said "we'll see". Same as every day. But it was him that agreed to us having the bloody plants yet he's done bugger all to look after them, despite him being more stable on his feet. I bet he'll claim credit for it when they are grown and ripe enough to pick and eat though, just like he claims credit for gifts even when I deliberately haven't put his name on the tag and says I "must have forgotten, sorry" when asked about it. Just like with the electricity and groceries - I'm the one who pays but it's Steve that gets the credit 😡😠
I'm pissed off about how much he sees his family (every six weeks, minimum) but I haven't seen my mum since mid-July 2010 (not a typo, I really do mean that it's been 11 years since I saw my mum) just after my father's funeral.
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Got a book to read tomorrow which sounds interesting so I've put a reminder in my laptop's calendar to remind me to read and review it. I've also had a reminder come up to take my last two pills of the day, so I'll do that now then potentially publish this and link to it from Facebook... I'll wait until just before I head to bed though, just to give you all a full day's worth of my life 😊
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OK, that's the last two pills of the day taken and I'm gonna publish this now so that I don't get stressed out just before I head to bed and end up tossing and turning until the early hours.
Thank you for reading about my day and I hope you've got a better idea of what I go through on a good day, let alone a bad day now and that you now understand that when I say I can't do something, it's not because I don't want to, I just physically/neurologically/mentally/emotionally can't do it for you right then and it's pointless laying a guilt trip on me or calling me a liar either out loud or in your head 'cos I'm already giving myself a major guilt trip about it and please know that me saying "no" is a very rare occurance so please respect it when I do say it.
Goodnight all.
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