It's ten to seven on Saturday morning, my first load of laundry is out on the line, and the second one is in. I've also resolved a connectivity issue between my replacement BT hub, and my Amazon Fire TV stick gadget.
Yes, I'm crowing, but it's the fact that I can still do these things which is astounding. I was really quite unwell yesterday, and could, quite easily have descended into one of my deeply unproductive "I can't..." states. What I did instead, was step back from the issue with the Fire TV thing that I don't really use much, it's more of an electronic babysitter for the headache (husband.)
This morning, after a nice 9-hour sleep, I followed the instructions in the email from Amazon, and managed to get the stupid thing working again, without having to ask anyone to help, or phoning any helplines, where the operatives would mispronounce my name. They had evidently logged my complaints from the last time they dealt with me (The saga of the kidnapped microwave, March 2015) where I'd stated that I didn't feel entirely comfortable phoning up, so would prefer to communicate via email. THAT time, they then sent repeated emails, instructing me to phone up. I think I might have used shouty capital letters that time.
Anyway, one more week at work before the summer holidays, I'm counting every day that I manage to resist the urge to punch people, or call them something really inappropriate as a win, it's the little things that get me through. It'll be Bedlam in a bucket, but I can do it.
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Gaia_rising
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Hooray an upbeat post at last. Been a bit dour here recently I've thought a couple times this week, not as it can always be sweetness and light but come on people lets turn that frown upside down!! if I was new and looking I'd think no thanks 'what a depressing bunch'.
Despite previous comments that seem to wind a few up I refuse to turn to the dark side and go negative. An upbeat attitude works wonders! I stick by as long as you look for the worst or what you've lost you'll never get going no matter your situation. It's the one thing we can change!
Like you I've been awake from 6 today fed 2 dogs had a hot drink tidied up and umm separated the same 2 dogs about a thousand times! One young dog just coming out of season and continually pestering what can only describe a pensioner dog!! Nice, puts me off my breakfast...sausages anyone lol
Ew! I only have one dog, but he's a boy dog, so I do occasionally shout "Lipstick!"
I am a venomous, argumentative sod, but I was 'before', I'm not always Mary Poppins, but it struck me, yet again, this morning, that I'm highly functional, more so than a large percentage of the general population. My brain still works, and my body still works, yes, I have bad days, I wasn't very well at all yesterday, but I'm still here, and most of me is still functional.
I'm going to have another coffee, and see if I can make the housework into a fun game... Or, possibly hide all the husband's left shoes, because he's left three pairs of trip-hazards on the living room rug again, the git.
Hehe, I do OK with the Hoover, I haven't tripped myself up yet, even pre-BI I had the co-ordination and grace of a cross-eyed elephant on a wonky skateboard, I can fall off the floor, and do, with amazing regularity. I STILL managed to stay upright in five-inch stilettos at the school prom, mind you, I'm counting that as a win, as well.
Lol I'm known around these parts as the penguin, due to my agility - my claim to fame falling over an 8 foot long rowing machine in the middle of a gym because 'I didn't see it' 5 years post BI so you can imagine my dexterity now! Uni cycling on a high wire and juggling next....
Hehehe! I live with a bloke who dumps stuff all over the house, so how I haven't come a serious cropper before now is a minor miracle. I'm known for not catching stuff that's thrown to me, I have some pre-existing nerve damage to my left hand, it's about as much use as one of those claw-grabber machines you get at the seaside. Colleagues have stopped chucking stuff to me, because I just watch it fall to the floor in front of me.
That'll be payback for the time my son was little, and I found a big, juicy slug on the allotment. Before my brain had time to tell me "Don't!", I'd thrown it to him, and shouted "Catch!". He did.
Silly is what gets me through most of the time, I refuse to grow up, it looks boring. OK, I have to wear a suit for work, but you can bet your bum I have cartoon socks and pants on most days. I'm consistently, dependably silly, and quite frequently have to send myself out of the office, because I'm giggling like a loon.
Boiled eggs spin in a different way to raw eggs. I'm a veritable encyclopaedia of useless facts about eggs...
Hhahahaa....was my last day at work yesterday for my annual leave of 1 week and believe you me I stomped out of that place without even saying bye!!!!
Plus like you I could have gladly punched someone in the face yesterday instead I told one mouthy passenger(I work in an airport) to get out of my face and stop shouting off he went thank god...
So now a week of friends coming out to see me and believe you me I won't want to go back to work...
Gaia, you make me tired just reading about your early morning productivity !
I'm more of the 'slow and steady wins the race' these days : ))
Shuffling off to walk dog soon.I will consider in what order I am avoiding mundane indoor tasks later - I really want to 'play' in the garden and sort things out ! : )
Hehe, that's the third load in the washer now, just the bedding to do after that. As much as I like sleep, I'm at my most productive early on.
I am having an 'off' day, the vertigo is pretty bad, and I feel generally 'bleh', so I'll do what needs doing this morning, and then declare the rest of the weekend 'resting' time, regardless of what the husband wants to do, I've been ill, and I'm not 'better' yet, I don't want to go to a bloody Classic Cars show.
I keep on ticking, but I know I'm tired, and diving about like WonderWoman all weekend won't help, it's fantastic that I still CAN do all the boring, mundane stuff, but, please, if you catch me thinking about ironing, tell me to go to the hospital, that WOULD be out-of-character behaviour for me.
Lol : ) My iron hasn't seen the light of day in 20 odd years ! I lob stuff in the dryer on anticrease setting for 10 mins then onto coat hangers to dry. I am no one's idea of a domestic goddess.
Of course if it's a special occasion I make an exception...and tell them where the iron is kept !
Hehe, I DID iron myself a skirt yesterday, because it's one of my favourites, and it looked like a tramp had rolled it into a ball, slept on it, and then kicked it down a hill.
Small things, like having six weeks off work, and seeing how long I can wear the same pair of combats before they start talking to me, or stealing my lunch.
Well, i cunningly just started a new job where the dress code is casual and school has broken up so no uniforms to iron. Just about to head to my local charity shop with clothes, too, thats one way (albeit a TAD drastic) to get out of ironing them ever again. Trouble is, I know I will fall in love with something else in there..........and so the cycle goes
Angela- I spent 20 years ironing EVERYBODY'S stuff- now, if the child needs a 'smart' shirt, he gets the iron out. The husband knows where the ironing board is, after his "Are you not going to iron that?" tantrum ended with me saying "No.", he's stopped asking me if I'm going to iron things. I fold his laundry, and put it on his side of the bed, so he can put it away, which also has the bonus effect of him no longer being able to say "Do you know where my... is?"
I hated ironing before, I'd sort of stopped ironing in about October of last year, and nobody seemed to notice. Now, after the old life-threatening event, life's too short to stand in the kitchen for two hours, flattening stuff that the men-folk don't put away properly.
Cue Meatloaf : I would do anything for love..........but I won't do that ! : ))
Well done, you. Yes, anything even remotely technical, involved or complicated requires supreme brainwork and I long for someone to just sort it all out for me. As that ain`t gonna happen I just need to take a deep breath and tackle each phase slowly and calmly. Had a rare weekend completely alone so have tackled all my finances and prioritised bills etc then needed to collapse into bed nice and early. Take it easy, folks, cherish the little things, celebrate your achievements and forgive yourself anything else.
I sort of miss my old brain, Abi, but I realise that this is the brain I have now, and sometimes, it needs me to STOP. I was crowing about my achievements in the morning, because it WAS quite a complicated work-around with the hub's security settings. I then spent most of the afternoon not-moving, because the fatigue sneaked up, and bit me on the backside, hard. Massively poetic that one of the symptoms of my fatigue is numbness in my bum, it's as if it DID bite me on the bum.
I didn't even have my 'WonderWoman' pants on...
Onwards and upwards, I don't plan to do as much today as I did yesterday...
I'm new to the whole brain injury lark, I'm still learning.
I like the 'All things are small things..', never really thought about it, though obviously I 'knew' it. From a cellular/molecular level upwards, nothing big was ever achieved without a whole load of small.
I'm not ironing my work clothes, or the son's school clothes, I have no idea where the husband's work clothes are because they certainly weren't in the wash basket...
One more week at work, and then I'm FREE for six weeks, atavism approaches, with me wearing the same combats for weeks, and eating food straight out of the fridge. During the summer holidays, I become a teenage boy.
All things are actually mostly nothing at subatomic level. It is postulated too at subatomic level that particles fly about from one form of matter to another, interchanging constantly, which means this bed I am lying on, as well as being made up of 99% nothing, was probably 100% something else at a point in time (forwards or back) which may or may not coincide with this moment.
Which is another reason why the present moment is sacramental - just like matter it is at one and the same time fundamental to our being and yet too radical for our total comprehension. All mystery is there....
That's the theology of quantum mechanics lecture for the day...I need to haul myself out of this questionably material bed to go raid the fridge for brekkie! Enjoy your hols when you get there Gaia x
Ooh, I like the 'questionably material' idea! The child and I were discussing, just the other morning, that he wasn't 'him', on a cellular level, but was still undeniably still somehow 'him', we didn't descend into one of our classic "Does the dislike of wasps constitute humanity?" debates. School holidays will have a lot of those debates in them, I love our silly morning conversations.
That I'm still here, and still have that beautiful, brilliant boy-man thing in my life is a BIG thing, made up of lots of small things, that are different from the small things that were there yesterday, or ten years ago. 'Gaia' in microscope, that cyclically, all things created will also be consumed and re-born. 'Rising' in practice, in that we will strive to understand and overcome the changes.
He's fantastic, and some of him was once me, that makes me incredibly proud, even when he's asking me for advice on putting on lipstick, when I'm crashed-out-fatigued in bed. This is our normal.
These child-adult things that inhabit our space and drain our bank accounts, they are all consuming, exhausting and exhilerating. My oldest `baby` is, at this moment, miles away in Thailand and she is having (hopefully) amazing moments of joy which I will never be part of. Kids are wonderful and my two are why I fought to tackle this BI. We just borrow them, then let them go, but its a gift while they are with us. Xx
We DO just borrow them, and watch, in wonder, as they grow, and change. (Sometimes in frustration, too, but they develop into themselves by testing the boundaries, and, sometimes, we're the boundary.)
I knew, from the very start of the pregnancy, that he wouldn't be 'mine' from the moment the umbilical cord was cut, but, in a way, he's a lot like me, and I adore his don't-give-a-crap strangeness.
Soppy, and sentimental, he's his own person, but he has, in some ways, been shaped by me, and he's no less brilliant for it.
Not soppy at all. I didnt actually meet my second baby until i woke up in hospital and was told I had given birth to her so we have had a long long period of bonding and I recall nothing of the pregnancy. Its all muddling through, doing what works for us and the best we can do for them is just be there and love them unconditionally. I was really strict with my two ( i wad not their `friend, I was the boss!) but kids need that, the boundaries and the rules and they will be nicer, more rounded and wonderful human beings in the long run. If you are a parent with BI it is even tougher and my two would see when I was getting tired and tried to play on it but yes, I love every moment of it and, apart from surviving TBM, my best achievement is these lovely young people.
Wow, fab erudite posts for an early Sunday morning. So true about those small things,they become huge and meaningful when big things (cooking, shopping, bills) are diminished in importance, probably because they take so much effort...I love the idea of becoming a teenage boy! Wish I was chilled enough to leave pants (my dirty Wonderwoman ones) on the floor and never wash up but I think the flat would descend into chaos. Plan to do as little as humanly possible today after my first week in a new job. No kids here, just cats to feed and coffee to perc. Just the prospect of an utterly unhurried cup of coffee is enough to make me smile. Hope everyone has a positive and happy day x
In a continuation of this, I'm now off work for the summer holidays, except a bit of remote working, and a few meetings. I've had a cry this morning, because I couldn't physically shake the horrible kitchen rug, but said rug is now rolled up to go to the dump-it, so I won.
I'm going to try a carefully balanced mix of being kind to myself, and stretching myself, I can't be doing with this physical weakness much longer, my mind's as sharp as it ever was, it's just this meat-carcass letting me down.
One step at a time, coincidentally, my 'Pacer' app recorded over 20000 steps on Tuesday, six and a half miles of that was done in two hours and five minutes. My previous time for the school sponsored walk thing was around two hours. I'm doing OK, I just need to NOT beat myself up for things I can't control, I'll remind myself of that the next time I want to cry over something stupid.
You might find yourself having a love/hate relationship with your body/brain for a while - exhilarated when you manage something you didn't expect and disgusted when it lets you down.
I'm still like this 2 1/2 years on ! I find it's better to work with my limitations and think around the problems, trying different methods to achieve the end goal. I have learned to recruit other muscles, wide legged to help me do things like slopes and steps, use my arms and drop the signals to my legs to get up off a seat ( gets around the co contraction of leg muscles that cause a stalemate and glue me there ! ) I regularly hang onto the frame of the sash windows at work and use my body weight to pull them down as my arms alone are not powerful enough ! You will find tricks of your own : )
Just a thought but if you are able to drag the rug to a fence or chair outside to hang it over you could brush or beat it there. Better still ask a stronger person to do it and I know you won't like this cos I hate to ask for help too ! Pushing myself has helped me to strengthen what I have so I have maximum use but the spasticity is still there and the tricks make more tasks do able.
Failing that , I never liked that rug anyway ! Lol !
By the way, did I mention that you are amazing ? You might want to tell yourself that once in a while : ) x
That made me smile, thank you- I am a tenacious, resourceful sod, and I have a way of finding ways around things. There's nothing strong enough in the garden for me to hang the rug over, and I've always hated the damned thing, so I'm glad it's gone.
Me-1, Rug- 0.
I'm not imagining that I can be Arnold Schwarzenegger overnight, but I need to slowly stretch these atrophied muscles back into something resembling me. I've come away from the whole medical issue remarkably unscathed, but I'm now under 10st, which, given that I'm roughly 5ft 8in, isn't ideal. Slow, and steady, six weeks off, I can alternate between doing things, and doing what I'm doing now, which is watching Game of Thrones.
I remember trying to varnish a piece of wood to put over the sagging kitchen floor by the door in early days. ( We live in a park home static caravan, wood instead of metal and it is knackered - floors are going in various places ! )
My arm was weak, exhausted and shook like crazy, I was trying to support it with my other equally sad arm to get the job done ! I am a fellow stringbean and had lost a lot of weight too ! I hadn't realised that this extreme weakness was the forerunner to spasticity developing, in my case.
You have the perfect 6 week window to strengthen what you have and get some good nutrition in too ! I took vitamins/minerals and 3 omegas daily to try and boost my system and reduce inflammation after reading about Encephalitis. Best of luck, Gaia : ) x
Bugger. My body is giving me the warning signs that I'm about to crash again, my vision is disturbed, my right leg might as well be made of Play-Doh, and I'm SO tired, despite having done relatively little so far this week.
I'm not going to get into my usual you're-tired-because-you're-lazy argument with myself, because that was 'old' me, and I value 'new' me, even with her alarming range of weirdnesses. (It IS a word, I just said it.)
I'm always ill in the first week of the holidays, it's as if my body saves up all the aches, grumbles, and snot, then presents them to me, when I have more time to 'recover'.
Before I 'finished' work for the summer, I put in a range of double-safe checks, to make sure that, in the event of me being incapacitated, the right people would have the right information- I had a very brief period of beating myself up this morning, because I had intended to go in to work, and print and post some reports. Quite possibly wearing my Wonderwoman pants, I had already emailed them to other people, to safeguard against the possibility of me being unwell.
I suppose I'm going to 'rest' for the majority of today, seriously contemplating looking into meditation, because my brain is the bit that I need to put on 'snooze', and it's currently screeching at me about the defibrilator at work. Brain, I can't do a damned thing about the defibrilator right now, hush. Aren't brains brilliant? Mine still hasn't looked up the bus-route for my scan on Monday, but it's leaping about asking me WHO is responsible for checking the de-fib, now that the lass who worked for St John's at the weekend has left...
I have just emailed a request for self-referral for assessment with the Occupational Health Service, and I DIDN'T use any creative swearwords, or apportion blame where there was none.
Tick-tock, procedural pathway brain says they might not accept self-referral, and I might have to go via the GP, but at least I'm making a start, doing something other than sitting, surrounded by other people's kebab-boxes, waiting for my brain and body to play another 'hilarious' practical joke on me.
We'll see. I did ask the H&S manager at work to refer me, pointing out that if I did something stupid at work, due to my leaky brain, they'd still be liable, but he just palmed me off, with "I could, but it would take ages.", effectively giving me licence to do stupid things... (That's not how it works, is it?)
Back-trawling and time-flagging for myself, having just had a letter through my door to attend for the OH assessment in four weeks, not sure what to expect, whether they'll have an understanding of the wide-ranging and long-term impacts, or just do 'working memory' tests and such, then declare me functional?
In classic 'me' style, I can't process that outcome until I have it, and I mustn't let myself stagnate and obsess about the fact that I did make mistakes, when I was effectively covering two other people's jobs as well as my own. I'll have to take it as it comes, if I'm 'functional', then I need to start looking for another job, if I'm less-than-functional, I'll start the PIP-process all over again, armed with the evidence that I won't be able to apply for another job within my current pay-band... (Therefore effectively I wouldn't be able to pay my household bills, grim.)
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Feeling a little freaked out!
Found something that helps a little with fatigue 
Self-care and the things that you do
Couple of things
