When God Isn’t In

I am fortunate enough to have a big circle of friends from lots of different backgrounds, with lots of different beliefs. I can’t think of a time where we’ve ever disagreed or come to logger heads over those beliefs, and that’s how it should be.

I happened to cross paths with a lovely gentleman called John about four years ago. I either made the acquaintance through my artwork or my blog. I don’t remember which. Aye I know, the memory isn’t any better! Anyhoo, John, he’d had a near death experience in 1996 which changed his outlook on life. He found comfort in knowing that there’s no pain at the end, and that you do go somewhere better, he’d seen it.

John then asked me if I’d experienced anything, you know, when I wasn’t here. I know I definitely felt fear when my heart started racing, I couldn’t breathe and my vision narrowed, no, not dramatically fading out like on some crappy soap opera, I mean as in no peripheral vision, and almost pixilated. I don’t know or remember seeing or feeling anything beyond that, nor do I remember seeing anything or anyone. Nowt! The only thing I can think of, is that God wasn’t in that day. He was probably hanging his washing out or walking the dog, he definitely wasn’t in, because as you know I’ve knocked on him a few times and he thankfully hasn’t answered. Now I come to think about it, he was probably hiding behind the sofa like I was the Provi man collecting on a payday loan. “Jesus Christ, I’m not letting her in, I’ve already got my hands full with her lot, I can’t deal with another one!”

One thing I do know is a young trainee RGN was stripping beds, he was in his early twenties, and he was humming Bring Me Sunshine. Those of a certain age will remember Morecambe and Wise singing it at the end of their show. I have very fond memories of that show, and that song ignites memories of three members of my family that are no longer here. I used to watch the show with my Nanna and Grandad. My late Uncle taught me Eric Morecambe’s paper bag trick after many years of keeping me in wonderment. If I’ve mentioned it before, you know the drill, keep reading, I’ll get to the point eventually. When he came over to check on me, I said in the best way I possibly could back then (remember I had very little speech) “I used to love watching that.” He said “watching what?” “Morecambe and Wise, you were humming the song they used to sing, Bring Me Sunshine.” He looked at me and said “I’ve never heard of it, I didn’t even know I was humming” So maybe that was my sign, if I was ever to have had one?

So no bright light and harps playing while St. Peter stands waiting for me, with a chorus of angels. Mind you, St. Peter better have a seat for when and if I make it up there, or his legs will be knacking. There’ll be a canny list! Don’t you guys be trying to fool yourself into thinking you won’t have a fair few pages to look back on, it just so happens that mine’ll be the size of the Lindisfarne Gospels and War and Peace combined!

So what does happen to us? No one can argue that the human body is an energy field. All matter and psychological processes such as thoughts, emotions, beliefs and attitudes are made up of energy. Our bodies are also composed of atoms, molecules, cells, tissues and bodily systems, that again create or generate energy. And let’s just geek out a little further, and go all Royal Institution Christmas Lectures, or Big Bang Theory. The First Law of Thermodynamics is, Energy can be changed from one form to another, but it cannot be created or destroyed. The total amount of energy and matter in the Universe remains constant, merely changing from one form to another. Ahh! Ahh! See! Not bad for a blonde, eh?! Well, I’m more of a 7.3 L’Oreal natural dark blonde at the moment. I’m not best impressed by it, so it’ll be a 6.1 light ash brown by the time you guys read this.

Many moons ago, too many than I’d like to admit to, I answered the door to a guy from the Jehovah Witness Church. I remember he put his foot in the door like a debt collector. Yes I know I’ve made references to poor credit twice now, but I’ll have you know that Clear Score says I have a higher score than most people in my area! I’m a good girl me …. Ok, ok, you can all stop laughing now, I can behave sometimes, you know! Yeah so Mr JWC asked me if I belonged to any religion, I told him I was Christened Church of England. He said “well can you explain to me why your God created rapists, paedophiles and murderers? I bet you can’t answer that one!” So here comes the “Hold my beer” moment …. “Because God handed the earth to us, he didn’t create rapists, paedophiles or murderers, they’re manmade, we as human beings are responsible for that.” The foot moved, he looked at me nonchalantly “Can I leave this booklet with you?” And he was off. Now I wasn’t trying to tarnish his god, I was defending my right to believe in my god, as he put it, so I retorted his challenging and confrontational behaviour. Nor am I saying JWC followers are all like this bloke, because I know a few and they’re geet canny. I never saw him again, my house was probably put on the blacklist under Clever Shite!

I know folk who class themselves as spiritual. They believe in a higher being and often guardian angels. The embodiment of the elements that surround us, grounding oneself with Mother Nature. And like I referred to at the beginning, I know people who follow and believe in Catholicism, Islam, Judaism, as well as the Church of England, Community Churches and Methodist. There’ll be some friends I’ll have missed out, they can bollock me later!

I’m a huge believer in mindfulness, even before mindfulness was even a word and most certainly not on trend. In my day I just got called a tree hugging hippy. I’ve always walked barefoot, and would do so everywhere if it wasn’t for rubbish pavements. Crazy to think I was an absolute shoe addict. No seriously, I was the biggest contradiction. I had over eighty pairs of break your ankles shoes! Most have gone to charity or to friends, but I have kept some. They make canny decorations nowadays. My Mam was just saying this week that folk used to buy me slippers for Christmas, and they were all lined up in my room in pristine condition, because I’m nearly always barefoot. I love animals and nature, and being amongst it, cruel to think that my mobility is so very hindered, and my world so incredibly small. Once being hugely free spirited and serendipitous, to feeling pinned, trapped and bound overnight. I have to say, it does feel like the lowest blow of all at times. I’m sat here now with all the windows open, it’s a tropical 9° but I just can’t bear to be cooked up!

Do I believe in angels? Well I can tell you that in my minds eye I’ve put four angels in every room in my house, one in each corner, the strongest and tallest angels being in my bedroom. And I can guarantee you that my house is completely empty of negative energy. Though saying that, I’ve recently seem to have acquired a dog, no, not Dylan. I hear it when Dylan’s not here and forget myself and shout “What are you up to Dylan?!” Then I remember he’s not here, he’s at my Mams or out doing a reccy on the neighbours. It could be one of our old boys, Dale or Glen? And if so, I’m not sure why they’re suddenly around me or have made their presence known, maybe it’s a different dog? Who Knows! Where was I? Oh yeah, I have crystals everywhere, Himalayan salt lamps, and I have a Selenite lamp, I even have a Millennium Falcon and a Star Wars oil lamp just for good measure.

…. I’ve just checked my phone – it’s 11:11! I’m being honest and not making this shit up! I seek comfort in little signs like that, it makes me feel like I’m on the right track, confirmation and affirmation ….

I believe we are sent and receive signs at poignant times and moments in our lives. Feathers, butterflies, or like I’ve just exclaimed, repetitive numbers. Recently I’ve been glancing at the clock and noticing 12:12 15:15 etc so I started typing. I do feel I’m at a crossroads in my life, and I’ve been told I’m having a existential crisis. Not surprising really!

Do I send messages up above me to ask for protection, peace, serenity or to protect or help others? Absolutely, dozens and dozens a day! I fire them off like fireworks. I also believe that some people are earth angels, selfless, kind and poignant people. I do believe there’s a higher power or being. There’s something. I believe that there’s a path we follow in life, and if we find ourselves lost or strayed, we’ll somehow be put back on that path. I tend to think of it like those books you read as a kid, where you have to pick an option, and flick through to that page to find out your outcome. Do you die in battle and have to start right back at the beginning of the book, or do you bask in a victors light and finish your quest/book?! I feel this was very much the case with my accident. I won’t delve into that too much, but I was definitely lost on a path I shouldn’t have been on, with no idea how to find my way back, so the powers that be took it into their own hands. Do I feel punished? I can honestly say no.

So my point being. What if no matter how many religions there are in the world, no matter how many beliefs there is, what if we’re all praying, making a wish, asking for help to the same being? What if there really is only one higher power, one higher being, but we just call it a different name?  And what if we removed the word religion and replaced it with, a way of life, a coping mechanism, something comforting and a source of hope? A commitment to try harder, to learn to grow as a person. To be able to see where we’ve gone wrong, and put things in place to correct them. Helping those in times of need because you’re able to, not for glory or praise, just simply because you can. Is that not a religion or a faith? Does it make it less real if its given a certain name, or referred to as a religion? I don’t believe so. Reet, grab a dictionary, Christ I’m showing my age again. Ok, Google, whichever is at hand. Definition of being Religious – To relate to, or believe in something. DefinitIon of Religion – The belief in or worship of a superhuman power, especially a personal god or gods. Do you see what I’m getting at? Some people say they don’t believe in anything, ironically I don’t believe them. I bet they make a wish when they snap a chicken wish bone, make a wish when they blow their birthday candles out or hope their lottery numbers drop.

Recently, well, you know, within the last four years, I have been fortunate enough to have such wonderful people in my life. And some of those people have prayed for me, lit a candle for me, they’ve mentioned me in their prayer groups. Even Dylan was prayed for and was sent calming music in worship when he had his first hip replacement. And still to this day, no matter what my belief is or theirs, I still regard it as one of the most kindest things anyone can do.  To pray, wish or hope for you, whatever you want to call it, they’re thinking of you, they’re willing things to be better for you. Thoughtfulness is most certainly a precious gift.

Did Jesus exist? Well I think he probably did. I think he was a guy who was a huge humanitarian and empath who wanted to change peoples perceptions about one another, and life. For them to be able to relate to one another, to be able to put themselves in each other shoes, and treat those the way they’d like to be treated in return. As a kid, well, I still do, we always watched all the old biblical films. Moses and the Parting of the Red Sea, the Greatest Story Ever Told “Surely he is, the son of god” Gan on John Wayne! At Easter we used to be spoilt for choice. I always remember my Nanna saying to me. “They killed him because they were scared of him you know, that’s what frightened and ignorant people do when they’re losing control, turn people against you or get rid of you” And as always my Nanna was right.

I think Jesus promoted caring and kindness, yes I know, there’s that bloody word again! Honestly, you wouldn’t think it was a year ago! I think lockdown has made a whole new generation of keyboard warriors, selfish and self-centred arrogant twats! Bah, some folk haven’t half shown their true colours! Anyhoo, I digress …. Yes, I think he had a big desire to heal the sick and feed the poor as we’re told. In fact, I’m going to really put it out there, maybe what Jesus was trying to practice and teach those around him, was mindfulness and all of the things I’ve waffled on about above. Maybe he didn’t exist but the holy people collating the bible were selfless, caring, and charitable folk, and created a character people could relate to, not to deceive anyone but to use Jesus as a vessel or symbol to deliver important tools in life, and life lessons to learn from. I don’t know, I wasn’t there, even though most mornings I look old enough to have been! Did Jesus walk on water? I don’t know about that either, but I’d bloody love to know the trick he pulled to turn water into wine!

So what if hoping your car gets through it’s M.O.T is a little prayer to the Millennium Falcon, the car gods or Jesus himself?

What if Mother Nature, Buddha and Jesus are the same entity, but we all call them by a different name? What if the answer to the ultimate question of life, the universe and everything, really is 42?!

Who knows who or what’s up there!? After all, they say Heaven is only 3ft off the ground. What I am certain of, is that I don’t want to find out anytime soon, god can stay hidden behind his sofa!

No matter what our beliefs are, at the end of the day, we’re all human beings, and no matter what we do and don’t believe in, there’s only one race, the human race.

Try and be grateful for every day no matter what shit has been hurled at you. Try and make good choices, and try to choose one thing each day to be truly thankful and grateful for.

Like I keep saying to anyone that’ll listen, we all need hope right now, because without hope, we’ve got fuck all!


Like a Bad Penny!

I know I’m like a bad penny! Hahaha And yet again I find myself apologising for such a big gap between blogs, or maybe apologising for breaking your peace from me! Here I am, sat watching the autumn leaves fall, and the woods looking colourful, if not a little sparse. The squirrels are foraging for acorns, get them quick lads, Dylan’s scoffing them by the gob full! As many of you know, my life is far from mundane. In fact, the negative people I’ve often attracted into my life, have called me a liar and a fantasist. HA! I WISH! Those who have been stuck with me since first school and many decades; erm …. Let’s rephrase that slightly to, for rather a long time. There, that’s better and less ageing! Where was I? Yes, those folk have lived and witnessed my calamities, traumas and the devastation of many aftermaths. I honestly don’t know what it’s like to see a day go by without some kind of event. Yes, I agree, they all need a bloody medal! Haha My mam can be often heard saying ”well if it’s going to happen, it’s going to happen to you Libby!”

My Psychiatrist Chris, yes, that’s right, she’s a fully fledged Psychiatrist. Before you all go One Flew Over the Cuckoo’s Nest on me, I don’t need locking up, though some of you might disagree! I have PTSD and CPTSD. These pesky little fuckers need to be dealt with, with precision and great care. There’s many things that need gently, and cautiously unpicking. Anyhoo, Chris, she says I have Superheroism, amongst many other labels. Basically, well no, it’s far from basic, I want to save the world from all the awful things that I’ve been through, and experienced myself. Things or events that I find unbearable to think of someone else going through, to feel the way I have felt. I want to eradicate such things from their life and shield them. Thus having a Saviour Complex. It’s also often referred to White Knight Syndrome. Just today someone empathised and identified it within me. I only feel good about myself when I can help someone, and I believe I’m solely here for others, and not for my own purpose. Until I spend so much energy trying to save or fix others, that I end up completely spent and exhausted. Because it’s just me, it’s ok if it happens to me, I don’t matter. There’s two sides to this coin, one is egotistical and controlling, that’s not me, but the other side of the coin is what I’ve just described and very much me – selfless to your own detriment. I won’t take any praise or credit for anything I may have helped with, I prefer to stay in the background, and I get uncomfortably bashful and awkward. I’m not great at taking a compliment at all. Unfortunately, it’s an adaption I learnt very early in life, and I tend to attract the takers, those beasties are the hardest bastards to eradicate. As long as you’re giving, they’re going to take. The only way I can describe it, is like the Harry Potter Dementors.

I know this will shock you all, but these days my phone is rarely switched on, or if it is, it has the moon and the aeroplane on. I said this recently to a friend, and she was completely confused. iPhone users will totes get it!

I have a school friend that was in the Military, hearing snippets of his story, of how he was facing a completely different battle in life, was pretty much the first time I had heard about PTSD, or rather, gotten an insight of what it was. I never thought for one minute that I was already experiencing PTSD. The flashbacks and reliving scenarios were being clumped in with the seizure activity I started to have after mine and Dylan’s accident. As time went by, it started to become a lot clearer that I wasn’t just having seizures, I was also having flashbacks, or reliving traumatic events.

I’ve probably mentioned this before. If I have it’s the usual drill, just nod your head and keep reading. About a year and a half ago, I had a massive seizure at my Mams, she ran out into the street to find someone to help. A friend and neighbour came, she lifted me off the floor on to the sofa, how the hell she managed, I still have no idea. I started to experience a flashback right after the seizure. My seizures are a direct result of my accident, therefore being a trigger for my PTSD in their own right. I was hanging on to Dylan and repeatedly telling him that he was safe now, you’re safe now Dylan, they’re coming, hold on, you’re safe, I’ve got you. When she asked me ”but are you save? Are you safe now?” I came to, I remember that bit vividly. I can’t tell you where I was, but I can hazard a guess. Another time I was at Slaley Hall with another friend. I know, I’m geet pesh, I have all these friends! It was the first time being submerged in water after saving Dylan. Most folk know, but you’re lucky if I can swim 5 metres, and swim is a lose term! In mid swim I panicked and almost jumped into said friends arms, I was scrambling and grasping looking for safety. I was taken back to primary school swimming lessons, where Mrs Robson and the swimming coaches often shoved floats in the back of the boys swimming trunks to keep them buoyant, they did, honest! They also used to walk along side you as you swam, sometimes with their hand on your back, encouraging you to keep your back straight against their hand. As a kid I used to feel trapped even though she was by no means holding me down. But that’s what I was experiencing at that time. My poor friend was only worried whether I’d scratched her face whilst I was holding onto her for dear life. She never once said, here man, what the hell, like most would.

Even then I didn’t realise what was happening. As time rolled by they became more frequent, more disturbing and beyond intrusive, to the point of it becoming a daily occurrence. Even gardening can trigger it. There I am, happily potting my plants and the compost digs into my finger nails. The sensation, the smell and I’m right back there. I mentioned CPTSD. That’s even more complexed and derives from experiences during my early childhood. Often my flashbacks as they’re referred to, have absolutely nothing to do with a trauma I’ve experienced, but the scenes are often very similar. The feelings are the same, and at times I’m the third party paying witness to a barbaric event, but being unable to stop it or save them, like I once needed saving myself. Here stems the ‘Saviour Complex”.

I so desperately want to save the world from such hideous and life impacting pain and suffering. When I was being assessed by the mental health team, I quietly asked with an anxious dry mouth “Am I psychotic?” No she replied, you’re someone that’s gone through a great deal, your accident and all that you’ve endured since, and moments in your childhood has been a trigger, everything has condensed. I also have intrusive thoughts throughout each day, dozens of them. I have to shake them away or rub them out, but these things are all so fucking exhausting. I kinda don’t want to get into this one. One because I try so very hard to dispel them, and two, because they’re made up of stuff of nightmares, and beyond anything you could possibly imagine. I don’t even know how they’re in my head. Another label I have is Anhedonia. If you Google it, it’ll probably come up with depression, but it’s far from that, even though depression in itself is just awful. Anhedonia is a major depressive disorder (check me out! Yes, I’m being facetious again!) It’s an inability to experience pleasure from, well, normal pleasurable things, and it massively impacts your life. Yet again it’s a queer beast, Like, I’m genuinely happy for folk and appreciative, and all those lovely things, but I also feel nothing. It’s like being dead inside, just nothingness. I can’t even claim to feel depressed or of low mood, but it’s very much there within me.

This is my daily life, not some of the days, or more than half the days (those who have been through the mental health system will get my little whim) it’s everyday. Then adapting – HA! Adapting, I’m doing a piss poor job of that too! Theres nee adapting gannin on here like pet! Acceptance? Fuck off, there’s neen of that shit either! I will say that opening Pandora’s Box so to speak, takes courage in itself. And no haters I’m not saying I’m so brave, nor am I having a pity party, divint be starting that shite. I’m just saying, that again, things are very rarely how they seem.

If someone doesn’t answer their phone but they’re on Facebook, don’t think negatively, maybe they’re watching Brad Mondo, Beard Meats Food, and crazy nail art videos *Whistles nonchalantly* Maybe they prefer to text rather than speak on the phone, because its less intrusive. It doesn’t mean they don’t like you, that they’re ignoring you, that they don’t appreciate you. More than likely they find the written word easier than vocalising. I know I can express myself a great deal better via text. I’m also still relearning to read and write, ironic that I write a blog, but I have speaking gadgets and what nots to help me.

I know we’re still in the grips of Covid, but before Covid and when it eventually fucks off, if someone always turns you down and says no, maybe there’s a reason. I’m so very reluctant to go anywhere or be around a lot of people just in case something triggers me. How the hell would I even begin to explain PTSD or a reliving episode/flash back!? I know Chris told me to just tell folk, that I’ve got nothing to be ashamed of, I’m maybe doing folk a great injustice, but I’d rather not. I’ve said it before, isolation is addictive, it’s safe, it’s familiar. But don’t ever stop asking me to go or do things, because one day I might get my brave on and say yes!

More than ever we need to be kind, yes I know that’s been flung about like Lilo Lil’s knickers from Bread, come to think of it, Betty Boswell may say she never wore any, but you get the gist, and it’s true! Somehow in this shit storm of life we need to find understanding, show our love and compassion like it’s going out of fashion, hey, that kinda rhymes, and I didn’t even try, anyhoo, yes, but not to the extent that this wassik does!

Woooooah! I got through a whole blog without reciting any song lyrics! Christ, I must be unwell! Hahahaha!

No matter what Boris the Buffoon says, stay safe, make good choices, and make a little birdhouse in your soul!

I had to get one in how! Haha


Whee’s Keys Are These?

Yes, I know, I have a bloody cheek! Hahaha I disappear for months on end and decide to randomly show my face! Hahaha You should all know by now I’m brazen as hell! #TrueStory

I honestly don’t know the last time I plagued your screens but a lot has happened this year, well, 2019, yes I know that’s nought fresh with me but you know, more than usual!

I’ve had a strange old morning. I looked at my phone and my “things to remember” and it appears to be 9th January, 9th January, why is the 9th January niggling at me? Care Manager visit, meet new carer, Karbon Homes replacing window, send cousin a message, send another cousin a happy birthday …. Nope, that’s not it! Meh, who knows, maybe my konked out, wonky, bashed up brain is misfiring AGAIN! All I know is that I want to spend today peacefully, I know, that in itself should have raised alarms! Hahaha Whilst talking to my Care Manager it hit me, the memory or the thought processor in my brain obviously decided to find out what was niggling me and do a massive fuck you, run a red light or crash through a road block, as it dawns on me, that today, the 9th January is the day that I was definitely not expected to survive, in 24 hours I’ll have come round and everything we all take for granted will be gone, most of it lost forever. Though I still like the part where I defied death several times and proved lots of very important, ridiculously educated and experienced Consultants wrong, that’s my favourite bit of the lengthy and compelling Lizzie Saga, oh yes, I have saga status now, I totally surpassed trilogy status back in 2017! Hahaha

So things you might have missed. May 2019 I got the keys to my very own place, I know, right!? Don’t worry though, there’s smoke alarms and everything! Oh you all know me far too well! Hahaha The place was let to me in a pretty poor state to say the least, considering and baring in mind it’s a disabled adapted property, like the person living here is less able, yes I know you lot all get it, but the powers that be obviously don’t seem to! There was even the prior persons hair and faeces still in the bathroom, not their fault I hasten to add! Again, emphasis on disabled property! Karbon’s solution was to give me a voucher for paint and a roller – WOW, gee, thanks! And who’s going to bloody do it!? Again, emphasising that it’s a disabled property! Oh it gets better!

So I move in (I’m purposely skipping a bit here) and I place my pride and joy, my clump of 14kg Himalayan salt lamp in my bedroom and it isn’t a very happy chappy at all, it starts to weep (melt) it’s soaking wet and leaving puddles where it sits (I’m sure that’s a line from a song?? Oh come on, I haven’t burst into song for at least 3 paragraphs, that’s bloody good going man, howay!) Maybe it’s because we’ve had some very humid days? Maybe he just doesn’t like my new home? (yes, he’s a he) Hmm? I move my salt lamp into the sitting room and he’s perfectly fine. As the weeks go by, I start becoming unwell with my long dormant asthma, I’m given two inhalers and a tablet to take on a nighttime to help me breathe, as it’s always nighttime that it becomes a problem. Hmm? Karbon send out a surveyor who promises to replace the leaking shower surround, flooring, tiling, shower seals, and the list goes on. Autumn comes and woah, what’s that dripping on my head!? The external porch is dripping water, then water starts running down my internal porch walls and mould starts appearing. It starts to get cooler so it’s time to put the heating on, two radiators don’t work and the ones that do, don’t heat up the house. HOLY MOTHER MARY! Right where I sleep at night, not more than a foot away, was and still is saturated and growing a great deal of mould spores – that’s why my breathing is so bad! I moved into the spare room, guess what!? Mould growing there too! Mould started growing on my windows and front door. In total I have had three visits from the same surveyor who’s tried every excuse in the book to avoid it being Karbon’s fault or responsibility, until she had to admit defeat on her third visit, because all her “advice” was quite frankly, avoidance and excuses. Now don’t be thinking only a few phone calls went back and forth, oh no my dear friends! I rang them, the local welfare officer rang them, the social worker rang them, the OT rang them, my care manager rang them, even our local councillor Cath Homer kindly supported me and went straight to Karbon Homes Sustaining Tenancies and Northumberland County Council. Yeah, as you can imagine things have started to move along quite quickly now, plus my care manager has brought our local MP onboard too.

We’ll park all the rubbish stuff about DWP for now, as well, you guys have a life after all and you can’t just sit here reading my wafflings, yes that is a word, I don’t care if it has a wiggly red line under it, it just makes it look more poignant and pretty! Hahaha Let me tell you some great stuff!

Despite it quite possibly being the house that bloody Jack built, I love living here and so does that little villain of mine, Dylan. He’s got everyone wrapped around his little paw, honestly, he’s ruined! He has his own little daily routine of calling on folk and waiting at their doors, the winter has really put pay to this routine as folk don’t tend to spend as much time outdoors, but Dylan doesn’t seem to understand this.

So I’ve already briefly mentioned the state my new little home was left in, so let me tell you about a canny little group of peeps who could quite possibly be the sneakiest, most sly and cunning folk I may ever have come across. But in the best way imaginable. I had some wonderful friends who rocked up and stripped every bit of ripped and smelly wallpaper off the walls, prised wobbly dado rail from every wall, even the bathroom. But most of the rooms had painted bare walls too or underneath, the skirting boards were various colours, mostly half finished mid brushstroke, there were random wires leading to nowhere and not connected to anything but still covered with coving. The only room that was grand was the kitchen which had just recently been updated and newly decorated. Everyday we’d all pile in, I’d get told to sit still in the corner on a camping chair and supervise. My Mam made so many sandwiches and plied us with so many treats and crisps, that my kitchen often looked like a corner shop! My intention was to just live in it and put up with the multi colourings and save up then do a wall at a time, like who was I kidding, I couldn’t manage half a wall never mind one! Anyhoo, I was at my Mams (still sleeping there) what with the move, the state of the property and DWP took its toll and I had one hell of a seizure, like we’re talking big time! Some will recall me highly praising my friend and neighbour for finding my Mam frantic in the street, and coming to literally pick me off the floor to safety. I know she’s tall but I’m no lightweight since my accident, so that lass must have had 3 Weetabix that day!

All I remember is the house being full of lovely peeps making sure I was ok. They kept telling me not to worry and they’d finish off cleaning the place and making it smell nicer etc. Me with my already bash up brain that’s just been struck with a thunder and lightening storm and ran a marathon, fell into a week of drowsy morphine and diazepam fuelled haze. One day I asked my Mam if the girls had been and dropped my house keys off, she looked a bit sheepish, just a bit, and said no, that they were still sprucing it up. Then I asked what day it was. “Mam, how has it taken them 5 days to spruce it up, they did shit loads before I had my seizure, there wasn’t much else to do?” I just got a shrug of the shoulders. A couple of days later I decided I was going to ask my mam to help me across to my new place. She suddenly needed to take Dylan out first. EVENTUALLY, she took me across, when I got there – OMGG!! The little sneaky buggers had poly filled, sanded, glossed and emulsioned THE WHOLE PLACE!! ALL OF IT!! The main two culprits had worked their absolute arses off, they gathered all their bits of paint and chipped in what they could, because they felt that if they wouldn’t live in it, in that state, then neither should I. They say that day, an extremely rare and unheard of phenomenon occurred …. I stood silent with my gob wide open in utter shock, and didn’t so much as mutter a word for at least 5 minutes, in fact they thought they’d broken me! Hahaha Then came the most grateful words to ever lay upon their tender ears “You little fuckers!’ Hahaha

I even had my very own Charlie Dimmock hack and beat her way through the very over grown, jungle of a garden, like we’re talking Day of the Triffids status here, not a few piddly Dock Leaves, oh no, wassa weeds and even Oak Tree saplings! Again, Karbon have been promising since before I moved in to tackle the garden. My Charlie Dimmock did it all in one day, then returned with the family to present and erect a birdie feeding station. It’s right outside my window. I love it, just this morning I had a beautiful little Robin, maybe it was a little messenger from Heaven?

But back to the point I keep incessantly making, this is a disabled property. What if I didn’t have these wonderful people in my life, what if it was a little old Nanna or a little old Granddad that had moved in here, with no family or friends to help them? Would Karbon still have let the property to them in the state they did me? My gut feeling is yes, yes they would have, and for that alone, they should hold their heads in shame. Would they have let their elderly disabled parent or loved one move into this property the way they expected me to? Again I strongly suspect not!

So there you go my friends, a little instalment. So much has happened and there’s so much to tell. I’m sat here in my little home, with Dylan snoring next to me after chasing the tennis ball, he dashed indoors before I could stop him, so my throws are smeared in mud, I have designer muddy paw prints through my hallway and all over my sitting room carpet, the new cushion I received yesterday as a late Christmas gift, is now personalised by Dylan with a muddy paw print, there’s a tennis ball in every room, yes even the bathroom and I haven’t managed to do my dishes, but it’s home, it’s our home.


Home or Dwelling – Relating to a place where one lives

Brain Drain – Action For Brain Injury Week 2019

I’m aware I might be asking a great deal but if you could find the time in your busy lives to watch this, I’d be truly grateful.

I was misdiagnosed for 11 months as having “rare unexplainable strokes” until I finally won my fight to see a Neurologist. They confirmed I’d not suffered any such strokes but went on to explain I’d ruptured my left ventricle brain stem and suffered a brain haemorrhage, surviving this was truly rare. Devastatingly it’s left me with irreversible brain damage and my life unrecognisable.

The sleep part of my brain was damaged, so I struggle to sleep, even strong Barbiturates fail to flick the switch and initiate sleep. The longest I’ve gone without sleep was 6 nights/7 days and I was a complete mess, loss of vision, extreme pain, Dystonia, tremors and Dyskinesia to mention a few.

This video diary unfortunately is “normal” for me at the moment, though it’s definitely an improvement though it might not seem it!

Thank you in advance, please, share, comment, like, it might just help someone to feel less alone.

#ABIWeek #ABIWeek2019 #HeadwayHero

…. I just want people to treat others with compassion and understand that there’s many hidden things behind a smiling face ….

Did You Miss Me? …. I’ll Pretend I Didn’t Hear That!

Well hello, yes I know, sight for sore eyes, eh?! It’s been an AGE since I wrote anything. You see, I’ve been somewhat busy and life became, and still seems to be quite overwhelming. As ever life still races past me at a rate of knots and it still baffles me no end. What’s been happening I hear you cry?! Well I don’t know where I last left off and even if I did I’d still probably repeat myself! In my absence don’t be fooled into thinking I’ve been off having such a super duper time that I forgot to write, I meant what I said, I can’t manage to open my own mail even on a good day. In short, I think I’m struggling, in fact, parts of my brain is so physically damaged and messed up after my accident, that I’m not actually sure how to explain or express how I’m feeling and what’s happening. I do a rather a good impression of a fit and able bod, but in reality, a lot of my disabilities, god, why do I hate that word so much, I’ve actually just cringed typing that! Where was I?! Oh yeah, a lot of my disabilities are hidden. I sometimes think people with their arm in a sling are easy to get, you know, folk can plainly see they’ve got a poorly arm. With folk like me, it’s harder to tell. There I am with my slap on, smelling lush with my Jo Malone knock off perfume from Primani, like noughts a matter. Bollocks, I shouldn’t have told you about the perfume, they’ll be none left when I go back now! Yeah, I can have a conversation with you but if you ask me an hour later what we said, you might get a few highlights like Match of the Day if you’re lucky, but ask me the next day, well, you’ve nee chance! Though I do have a few nifty tricks from the Speech and Language Therapist to help. Like I say, I find it extremely difficult to explain, which in turn makes it extremely difficult for anyone else to understand. Why aren’t we fitted with USB sockets so we can just download our brain junk and play it back to folk?! That would be rather helpful!

There’s parts of my brain inaccessible to me now, the books, music and art I once loved are trapped behind a locked door with no way to access them, I know they were once there, their ghostly footprints are still Rembrandt but they elude me and are so out of reach. I don’t even know what I like anymore, when asked something simple like, whats your favourite food, you’ll be met with a blank expression and a lot of “erm”-ing. Time escapes me too, I can be sat in complete silence, no telly or radio etc and POOF! my Mams walking in the door from work and I have absolutely no concept of the time or where it’s vanished to! Headway have given me some fantastic factsheets to hand to friends and family but I haven’t been brave enough to dish them out. As I write this I have Simon and Nigel, also Peter in my head saying, write the book(s), those words haunt me and have done for almost a year now, where the hell would I start!? The first person to start singing Julie Andrews – Do-Re-Mi is getting a slap!

Oh, I’ll tell you what’s good! On a Monday and a Wednesday I have enabling time with Charlotte, she comes and takes me and Dylan out. I eventually got one of the best Social Workers, Becky, though I think they’re called Adult Care Managers now, anyhoo, Becky quickly identified the isolation I was feeling and the guilt I felt for not being able to take Dylan on proper walks, so she arranged a Charlotte. Becky’s moved on to pastures new but I do miss her. Yes, so a funny story about Charlotte – One day a little blue car pulls up and my Mam says oh there’s the Betterware woman, she’s dead canny but you can’t get away from her once she starts talking! Off my Mam went to the door. I could hear a conversation going back and forth, then loudly, EEEEEE, HEN, I’M SORRY, COME IN, COME IN! I sat there a bit bemused, my Mam came in very red faced followed by Charlotte laughing. My Mam thought Charlotte was the Betterware woman and kept trying to shove the catalogue in her hand and hurriedly trying to shut the door! They had the same car you see! My Mam was very lucky she didn’t get her arse kicked because Charlotte or Lottie Potts as she’s known in this house, is the British Kickboxing Champion! Oh yes, true story! When we go out, Charlotte and Dylan do ten times the walk I do but it’s just so great to be a part of it.

On one of our walks, Eee, I use that term loosely but hey, I’m doing ok for someone that wasn’t meant to be able to walk or keep their balance. We were on the fell side where I live, as kids we used to call it, the banky fields because we all live on a fell side. It’s a bank (a bloody steep one) and it’s also a field – banky fields. Anyhoo, the experience I had that day rocked my core and has stayed with me. Even though Lottie Potts was with me, I don’t think she truly understood the enormity, though she very much felt the emotion, it was bloody hard not to! By sheer chance (it’s never a coincidence!!) we came across a guy walking his mates dog. I can’t even tell you how we got on to the subject but his sister is currently battling to regain as much of her life back as possible after a head injury. In short, we shared our stories and I gave him a message to tell her ….

No matter what they say, never give up! No matter if they tell you, you can’t or you won’t, never give up! Until you’ve given it your absolute all and you find out for yourself that it’s not a win, don’t listen to anyone, because it’s your body and your mind and how the bloody hell do they know what you’re capable of!? The three of us stood there in a little universe of our own for what seemed like hours, and we all cried! And do you know what he said to me? WOW! Look at you! Nearly two and a half years on, you’ve given me so much hope and comfort today – Thank you! So you know what?! I climbed that bloody fell side just for her and I hope one day I’ll get an inbox to say, hey, do you want to show me the fell where you met my Brother?!

That’s just reminded me of poor Chelsea! Eee, poor buggar! Charlotte was off work so Chelsea was lumbered with me and Dylan. We were at Corbridge Riverside talking away and we just so happened to start talking about the day of my accident, when suddenly we heard a SPLOOSH! I called after Dylan …. Nothing …. I turned to Chel and said, he’s in, he’s in, he’s in trouble! She was like Wonder Woman, she was off! I managed to get to the clearing of the trees and I shouted OH MY GOD I CAN’T SEE HIM CHEL, I CAN’T SEE HIM!! She shouts, HE’S HERE!! There he was clinging to the edge, eyes wide with fear but listening to everything Chelsea was saying, it was icy, it was slippery and there was only a tiny ledge, the little villain couldn’t get back out! I stood physically shaking with fear and sheer panic, I couldn’t breathe. Chelsea found her footing, grabbed his collar and neck and heaved, out he came with is collar all skew-whiff like a canine version of Ursula Andress. I did the classic Mammy …. DYLAN YOU LITTLE FUCKING SHIT! I CAN’T BELIEVE YOU FUCKING DID THAT! POOR AUNTIE CHELSEA! YOU’RE A NAUGHTY LITTLE PUDDING! Then I turned to see a very pale, adrenaline pumping, shaking like a leaf and shocked looking Chelsea. Dylan ran off to soak two women passing by, whilst myself and Chel huddled together back to the car. We went for a posh coffee at Starbucks and took Dylan home to warm up. It wasn’t until Chel drove away and the house was silent that it hit me and the tears came! So that’s another reason to add to the list why Dylan is rightly called, Dylan the Villain!

And talking about Chelsea, guess what I did on Saturday night?! I got all dressed up and went to Sarah (Chelsea’s sister, ex carer, in a previous blog) and Vinnie’s engagement party. Normally I’m in my jarmies by 7pm. I only lasted a few hours but it was my first night out in Hexham since my accident, I make it sound like a proper sesh, it was a lovely small gathering of friends and family. My nerves were SHOCKING! I was a jibbering wreck and couldn’t really hold conversation for a while but then eventually I was ok, I still have shit attention span though and I found the background chatter etc really difficult, but hey, I still had a good time in my own little way. The welcome I received from Dylan when I got back, well, you’d think I’d been away for a few days not a few hours bless him. Those of you with pooches will know, it doesn’t matter what crap you’ve faced whilst you’ve been out the house, it’s quickly eradicated by the fantastic welcome you receive when you get back, to them, you’re simply the best and I try hard to be the human that Dylan thinks I am.

Anyhoo, I just thought it was about time I checked in. I’ve started having seizures again, some of them pretty bad and they take some recovering from. I still don’t sleep great, well, at the moment it’s better than it was, every other night I get at least an hour, the other night I slept for four hours, I couldn’t believe it. You’d think I’d feel amazing but I felt like absolute shite and I was all over the place. Maybe sleep is over rated?! I shouldn’t say that, my body is really starting to struggle from chronic lack of sleep. I did get referred to a sleep professor and after doing all her sleep studies, hooking me up to all sorts of wires and equipment and doing assessments, she discharged me because I was telling the truth. I really don’t sleep. Nee shit Einstein! You see, many patients she sees say they don’t sleep but in actual fact they do, it might be poor sleep or only a few hours here and there, but it’s sleep, she thought I was going to be the same, I’m not, so she discharged me with zero help whatsoever. Another true story!

When my body is beyond exhausted it becomes dyskinetic, it’s basically involuntary movement, my body twitch’s and jumps. I also have two types of Dystonia, one is like a tremor and annoying twitch, the other is just hideous, it tends to be in my feet, particularly my right foot, my muscles twist and contort in a horrendously painful and abnormal position, it makes me cry out and become a bit of a mess really. Very few have seen it and I have to say I get really quite embarrassed afterwards. And before anyone says it, no it’s absolutely NOTHING like cramp, so please don’t make me want to punch you!

Tonight is a no sleeping night, it’s 4.14am, yes I know all about the blue light your devices give off and how they stimulate the brain, but there’s zero sleep happening tonight, I assure you. Oh, I’ve just remembered! For my birthday a friend of mine kindly gifted me a Reflexology session, has anyone had it done? If not you totally need to try it. There I was all tucked in snug, softly lit room and the Reflexologist was working on my feet. I actually can’t stand my feet being touched, it’s hard to explain but it’s different, it’s not a massage. It’s pressure being applied and certain areas being manipulated. I think that’s the right way to describe it, what I’m clumsily trying to say is, if I can do it then most folk could. So there I was, a short time passed and I heard a little murmur, similar to what I used to sometimes do when I was drifting off to sleep but I had lots on my mind, I heard it again …. Hang on a minute, that bloody IS ME! I’M NEARLY FALLING ASLEEP!! It’s magic I tell you, MAGIC! I’m really interested in finding out if that was a one hit wonder or if it’ll actually work!

Well, I think I’ll shoot off and see what boxset I can watch, I don’t suppose it matters because I don’t often remember what I’ve watched, you could say I get good value for money!

And on that note, I’ll bid you adieu! (Zip it Julie) I’ll try not to leave it as long next time!


…. until you’ve given it your absolute all and you find out for yourself that it’s not a win, don’t listen to anyone ….

You, Me And Brain Injury …

Today kicks off Action For Brain Injury Week. Headway UK https://www.headway.org.uk have asked us to help our friends and family understand our head injuries and brain damage, they’re calling the campaign – You, Me and Brain Injury.

Here is a message to friends and loved ones but most importantly my fellow head injury survivors.

Please give me 10 minutes of your precious time that then might potentially help someone struggling with adapting, disability, isolation or uplift someone who’s feeling lost and alone, hey, maybe it’ll even cause us to celebrate with each other for being courageous enough to face the camera!

Who am I? Well I’m the girl who defied and lived – I Am That Girl!

Look out for Hashtags – #ABIWeek #HeadInjury #BrainInjury #HeadwayUK #ActionForBrainInjuryWeek2018 #YouMeAndBrainInjury

“Don’t ever let anyone say to you, you can’t do that or your body is not capable of doing that …”

Guess Who’s Back, Back Again ….

Ok, ok, ok, I know, it’s been an age, sorry! I bet you’ve all secretly enjoyed the peace and quiet though?! I have no idea where to start, so as per, hang on to your hats, this could go anywhere! A lot has happened since December and if it weren’t for a plethora of iPhone photos and videos, I’d be struggling to give this blog any content! Two secs, my Google Home is going off ……. Fab gadget, it’s just reminded me to go look in the freezer for something for tonight’s dinner and even better, it’s enabled me to drop my lunch time carers call. Where was I? Oh yes, from what I can deduce I had a lovely Christmas and New Year, a good sight better than the year before but that wouldn’t be too hard to achieve, would it!? A few anniversaries have come and gone, well, would you call them that, I’m not so sure? My good friend Tracy sent me a Happy Birthday message on the first year to date as it was the day my life changed or became something else, like an anniversary or a new beginning. You see, Tracy is pretty clued up as to how I often feel and some of what I’m going through, having experienced and battled through 17 years of brain related illnesses she tends to get it. It’s not my story to tell without her permission but just know that, very few words are often ever exchanged but a few tears have been shared. St Valentine’s has also come and gone. I had a tooth repaired, that’s about as romantic as it got for me, not that I could give a flying monkey’s chuff! I have a vague recollection of a conversation with Colette about men, it went something along the lines of …. After everything you’ve been through you need to marry a brain surgeon or someone like that! My reply was – After everything I’ve been through he’d have to be a flipping astronaut and totally out of this world! Hahaha Of course, I’m no oil painting or super model and don’t own a spaceship myself, though I confess to liking the notion, I do suspect you all get the gist! We were all spoilt at Easter, in fact it’s still Easter in this house, everyone showed such kindness again, that there’s still evidence of Easter dotted around the place. It’s not the presents or the possessions, what completely blows my mind (no pun intended!) is everyone’s thoughtfulness and kindness, although I’m always told they’re merely repaying me for my previous acts of kindness to them. I’ve never been on the receiving end like this and quite frankly, thank you sounds a bit feeble, naff and never enough!

I’m going through a difficulty time with regards to not sleeping. I now have 4 Neurologists, I know, there’s just no pleasing some folk, as I am experiencing episodes of Dyskinesia and Dystonia due to the lack or should I say, the inability to sleep. Not to put a fine point on it (… say I’m the only bee in your bonnet …. And she’s off! There’s a song for everything!) my body is beyond exhausted and in real pain but my brain is raving in Ayia Napa blowing a whistle and waving a glow stick! All things you wouldn’t want to experience, believe me. I’ll leave that one there for now because it’s still ongoing.

Throughout the past 16 months, yes, it’s really been that long, I’ve celebrated all of the above along with all of you guys, whether it be through social media or in person. This may sound very naïve but if I’ve welcomed you in, you’re then considered a friend and even as I approach 40, yes, I can’t believe it either and I still think I’m 19, I still make the same mistakes with people and still end up inadvertently getting into trouble or becoming a scapegoat. I’m far from any sort of angel. I make many, many mistakes and openly admit to doing so but maybe that’s my flaw and maybe, just maybe that’s why I’m such an easy target because others aren’t so prepared to do the same. In the past I’ve been handed the bullets and fired them at the wrong people, only to then discover the fucker who handed them to me in the first place, was the one who I should have been aiming at! Folk like that much rather twist the truth to make the story fit, other than admit they were wrong. I’ve been told there’s people out there that hate me, the only thing I can offer those people is a little advice, hating me has no affect on me whatsoever, it’s not damaging to me because everyone will have a different experience and opinion of me but hate takes up a hell of a lot of time and energy, I must be pretty damn special for you to use all that up on me! I’m beyond fortunate that the good people now in my life tremendously outweigh those people who once took up space, so very fortunate. I’ve probably said before that my head injury is really complexed and complicated so if friends don’t nudge me or keep in touch with me, I’d sit here and wonder where everyone was, whatever the medical science or the anatomical explanation, the people at Headway, the Neurologists and the Neuropsychologists at Walkergate Park Rehabilitation Centre aren’t unaccustomed to it and thankfully they completely understand and have seen it all before. So once again, I’m not being a ignoramus, I’ve just got some bust switches and fuses so if I don’t message back or get in touch then bloody prod me!

So, this leads me into something that irritates the living shit out me! I have always enjoyed social media. I love the sharing aspect and how ridiculously small it has made the world! It doesn’t go without it’s problems, I admit but then on the other hand I have to defend it and say it’s often the people that use it that are flawed! No doubt some folk will think I’m an attention seeker or after sympathy and such likes but in actual fact for many years I have used social media to say, hey, this is happening to me and if there’s anyone else out there, you’re not alone! Over the years I’ve received support and empathy and I’ve even had people contact me privately to say they felt or experienced the same thing but always felt they were the only one. I, myself have been there, hell, I’m there now! I’m not lonely, I’m far from lonely. I can pick up my phone or iPad and be enthralled in a conversation within minutes, maybe even seconds but I am so very isolated. The feeling of isolation is a total bastard. I don’t mean living at the top of Mount Everest, though I often feel like I do. I mean feeling separated from the world or segregated, not included, excluded, like life is passing me by. Recently friends learnt of my wish list of things I’d like to do and I was utterly amazed by the amount of offers to help me fulfil my list, though my pesky brain put pay to most of it but the list is still very much in pursuit and getting longer. Unfortunately, isolation is quite addictive and is a potent drug. I’ve been trying my very best to conquer my isolation addiction but the crazy weather we’re experiencing just now, is cumbersome to say the least but I did attend a friends wedding and surprisingly (only to me) the Chatty Cathy and sociable bod is still in there somewhere, it’s just out of practise.

Anyhoo, social media! Back in the summer I remember seeing lots of parents almost embarrassed and guilt ridden about posting, quote “obligatory” first day back to school pics. Please stop doing that! Get those photos wapped on man, come on! We all want to see little Johnny in his new uniform that will no doubt partially end up going home with another little boy at the end of the school day and little Katie’s astronomically expensive school shoes that will be batted and covered in glitter glue by the time she gets home. I wanna see that shit, it’s life, it’s friendship, it’s sharing, it’s fun! There’s nothing attention seeking, showing off or self righteous about it and the people that think it is should never be allowed on social media and are pretty much tarring others with their own brush! I consider my Facebook, Twitter and Instagram an extension of my friendship, rightly or wrongly I do. I want to see your kids on their first day of school, I want to see mushy Valentine’s messages, I want to see your holiday pics. I want to see your drunk toilet mirror selfies, I’ve taken a fair few of my own in the past! I want to see your important messages about health and the struggles you’re facing, maybe I can help shine a little light in your darkness hour. I want to send you birthday wishes, I want to send well wishes to you and your poorly loved ones, I want to sponsor you for a good cause. Don’t ever feel guilty for sharing because you know what, there might just be someone out there reading and thinking, wow, that’s just made my day or that’s exactly how I feel, thank god I’m not the only one! Let people celebrate with you, let people offer support and comfort to you, let people feel the same in return! If you don’t want folk to know ought then don’t mention it, don’t share anything if you don’t want to, you don’t have to but then don’t chastise others that do want to interact, share and communicate! Don’t you sit there and pull them to bits because they’re doing something you wouldn’t do, who said you could set the precedent!

My friendship circle has taken a hammering recently, we’ve lost loved ones to brave battles, we’ve had them tragically and selfishly taken from us and we’ve also lost loved ones that no longer felt they could stay here with us. The sheer heartbreak and unexplainable angst these friends are experiencing have all been met with condolences and support online as well as in person. People using social media in the correct way, a channel, a voice, a tool, a source. I would also like to remind people that a photograph is a snapshot in time and does not depict nor narrates the full story, do not make assumptions or judge, be mindful! And to all you fuckers using social media negatively, spying and bitching and causing trouble for folk – You plant the seeds you sow my friend, be very fucking careful, the tables can quickly turn!

So through the mighty powers of social media, I was contacted by a lovely lady called Sarah from the Blue Badge Company. (www.bluebadgecompany.co.uk) She’d read my blog and asked me to review some of their products, until I received the official email I wasn’t sure if it was a wind up or not but sure enough, it was real! The Blue Badge Company are a UK company who are committed to employing people with limited work options. Over 40 percent of their team are either disabled or a primary care giver. How epic is that?! Many of you may have seen my post on Facebook and Twitter where I was showing off my new Houndstooth cover for my disabled parking badge, well that’s where I got it from. I might as well do things with a little style whilst I’m less able! The Blue Badge Company offer fabulous lifestyle aiding products that are a little bit funky and unique, a bit like me (Hehehe) but above all else, so very practical. I’m currently typing this blog at a zooming rate because I’m using one of their fabulous Tablet Stands, it’s like a mini beanbag for your iPad or tablet, it’s not heavy but it’s kept my iPad exactly where I want it, it’s great!

What I’m trying to say is, in a world of vast technology and gizmos and gadgets, nothing beats human contact, meeting and greeting folk and sharing life but in the absence of that, whether it be by choice, inability or seclusion, used in the right way by the right people, the World Wide Web is rather a grand thing and like all things wondrous, if abused it becomes dangerous, just like anything else in this world.

“One of the basic rules of the universe is that nothing is perfect. Perfection doesn’t exist …. Without imperfection, neither you nor I would exist” ~ Stephen Hawking.

Time For A Recount ….

As I sit here looking at the white screen, the curser appears to be flashing almost impatiently at me. Today I’m going to try and write as much of this as I can without the dictaphone. Where to start? Well at the beginning silly! Oh there she goes! Julie Andrews 🎶 Let’s start at the very beginning 🎶 that bloody film haunts me or should I say my Mothers Hilda Ogden like singing does! Oh it appears I’ve digressed somewhat already, this is going to be an interesting blog! Hahaha Back to it, yes, so on 31st October I had an appointment to see some Boffins at a Transient Ischemic Attack clinic at the Royal Victoria Infirmary in Newcastle. It was an appointment to gather information about the amount of TIA’s I’d had in such a short space of time and how I was still here and recovering so well, or so I thought and was led to believe. I sat in the waiting room and I had the now usual anxiety of, are they going to be utter arseholes and patronising twats like the god awful stroke physician Dr Louw, yeah I’ve decided to name and shame the bastard! When my name was called I looked up to see an immaculately dress gentleman, suit, waistcoat, tie and cuff links, my tummy did a summersault and I thought, oh god no, please don’t be an arsehole to me, not today, I’ve had approximately 2 hours sleep due to the pain in my head and I’m growing progressively tired of putting up a fight. I raised my hand and smiled hopefully, he walked towards me and gently ushered my Mam to one side and said, Madam, I’ll do that, follow me and with that he released the breaks of my wheelchair and proceeded to push me down the corridor and into his room. Now I’ve had dealings with Boffins before with my Autoimmune and this guy looked and behaved like no Boffin I’ve ever come across. Once in the consulting room he introduced himself, oh he was no Boffin, the appointments department had mixed the dates and letters up, this gentleman was the Neurovascular Surgeon I have waited so very long to see, the gentleman that I’ve fought my fucking arse off for the best part of this year to meet. Oh no, he was no Boffin and I was oh so not prepared for the first time in almost 12 months …… Bloody TYPICAL!!

Still somewhat in disbelief and suckering suckertash-ing at myself for not having the chance to be uber prepared, he spoke the words I have hoped to hear for so long – If you don’t mind I’d like to push everything you’ve been told to one side and I’d like to start from the beginning (shut it Julie!) and try to identify how this has happened, there’s been far too much focus elsewhere. Well, I couldn’t speak, my throat was strangled by what felt like a tangerine sized lump and my eyes pricked with tears, all I could do was nod. He asked if I was ok, again I could only manage a nod but my Mam said that’s all she’s ever wanted to hear. He said great, let’s get to work then. Again he floored me when he asked if I’d been in a car or motorcycle accident, had I had a blow to the back of my head, had I had a boating or swimming accidental 4 to 6 weeks prior to mid December. Can you remember boys and girls, when I was called absurd and preposterous when I asked if I could have done it saving Dylan, remember that?! Well not one of them took me seriously and completely brushed it off and it was not once mentioned in my notes! That’s when he asked for a time line and did some background history. After 10 or 15 minutes he stopped and said, wait here, I’ll not be a minute and off he went. My Mam and I both looked at each other and she whispered, where’s he gone!? I had no idea! He came back a short time later and said, right Dr Thomas is seeing my other patients, I’ve cleared my morning clinic, we have a lot to discuss and I feel it’s my job today to clear some things up and give you the time you deserve because these Consultants have got some things so very wrong. Not just anyone can read a MRI or MRA scan and that’s very evident today. He wheeled me to his desk and went through every scan I’d ever had and showed me all the imaging, he explained every one and drew diagrams, he didn’t hold back, quite the opposite, he threw every one of them under a bus, a double decker bus at that!

So, he confirmed I sustained my injury 100% from saving Dylan from the swollen river, the force, the action, the weight, all contributed to my left brain stem being pulled and stretched causing a tear and on the morning of 14th December, straining my neck whilst driving ruptured the tear. You’ll all remember me presenting this theory, don’t you? Well, turns out I and possibly Mr Price who I never saw again, were bloody right! BUT!!! I have had NO bleeds on the brain AT all!! I’ve not had 3, count them, 3 rare types of strokes. I’ve had ONE head injury, ONE brain haemorrhage and yes, countless, exceeding 10 TIA’s as the blood flow washed along tiny healing clots. Are you all shocked?! Are you all shocked that for 11 months they have, and I quote “trying to hammer a square peg into a round hole” Yes, that’s right, they GUESSED! They misinterpreted every one of my scans or simply just didn’t know so they tried to pigeon hole me and treat me generically and hoped for the best! Oh and there’s more, don’t go away!

Can you remember back in March this year I was blue lighted to dreaded Cramlington Hospital and rushed into Resus with camera crews chasing us etc? Remember how I had to make the life or death decision to be Thrombolised or not? My chances were significantly lower than 50/50. That’s why Dr Arsehole Louw shut his trap quickly because he knew, he knew they’d guessed and took a significant risk with my life. They rushed me into CT, I’ve seen my scan and had it explained, there’s absolutely ZILTCH on it, nothing, not one fucking thing because this type of injury can not be seen on a CT scan. It’s thought that a tiny pinhead stationary healing clot was causing some confusion in my brain or it was my body experiencing dystonia for the first time, not a stroke or a clot hurtling towards my heart and lungs. Nor did I have a third rare stroke the second night I was home, again they CT scanned me, you can’t see this type of head injury etc on a CT. What was happening was the after effects of my head injury was still presenting itself. I should never have been sent home and I should never have been sent home with no provisions and care put in place! When I told the Neuro dude I’d been Thrombolised he said, did anything happen 6-8 hours afterwards, my Mam said yes, she went into shock and they hooked her up to fluids and all sorts. He nodded and said because you were over treated for something you do not have. My family are raging and feel it was all an elaborate show for the cameras and playing life and death with someone they couldn’t explain or knew what to do with. I don’t know what my theory is but I can tell you now, they were playing god that day! A Neurologist should have been consulted in January but they definitely should have been consulted in March before the treatment had even been administered because I potentially could have needed surgery never mind died at their hands.

Ever since I became poorly, I’ve always said my left side didn’t feel right either but it always got dismissed like everything else. They always said it was because my right side was paralysed or had little feeling etc WELL, wait for it, my left side has been affected. You see, the top halves of your brain effect opposite sides, my upper left side of my brain is damaged but it presented itself on my right side of my body but underneath your brain, left affects left, right affects right and I have damage and Ischaemic lesions to my left Thalamus, left Tempero-Occipital Lobe, left Cerebellum and left Pons. It also affected the artery behind my ear causing my loss of hearing and the audio sounds I experience now but I’m hoping it’s a sign it’s repairing itself. Here comes the science, the Thalamus is it’s very own structure within your brain, just above the brain stem between your Cerebral Cortex and midbrain, it has millions of nerve connections and it’s your relay motor and sensory signals. Remember when I said that back in December 2016, I could barely see and had pinpoint vision, well that was thanks to my Occipital Lobe. The Pons is your message centre, it relays messages from the Cortex and the Cerebellum which is why my messages and transmissions weren’t and don’t get passed along as well. It also plays a big role in sleep and dreaming. I’ve never dreamt since my accident, mind you I barely sleep, some of it is through worry but not all. I had a nightmare on Monday night that I was drowning but you know what, maybe that’s a good sign?! The dreaming not the drowning! The damage to my Cerebellum affects things like, emotions, impulsiveness, autopilot, unconscious memory, so, thought processes, memories and interests etc. So I can be a bit like Doug on Pixar’s Up – SQUIRREL!! It makes concentrating on a film really difficult amongst other things. I don’t really remember much about the past few years because I have memory loss and short term at that! My Temporal Lobe is also damaged so if my wonderful friends didn’t keep in touch, I’d quite happily sit there oblivious without a care in the world and I must add, lonely. I’m far from a stupid or uneducated person, I’m just living in my own tiny bubble right now and you’ve no hope of me remembering to ring or text you! Hahaha I’m also learning to read and write again. Jane the cognitive and language therapist comes once a fortnight and gives me homework which I love but by god, the simplest tasks are so incredibly difficult for me, that’s when I realised what a pickle I’m in, that’s when I realised the image on the screen of a brain with grey/white patches isn’t just a picture, it’s me, it’s my brain! I struggle to recognise people sometimes, I know that I know them but I just can’t think where or I recognise them but can’t remember their name so if you see me, please stop & say hello and if I haven’t replied to your text PLEASE text and remind me and PLEASE keep in touch cos I’m not ignoring you! Take my friend Jayne, I’ve known her for just over 2 years but I’m forever calling her Tracy. I don’t think I’ve ever done it to her face yet but when I’m talking about her (now hey, not like that! Lol) I have to consciously say Jayne and not Tracy, mind you, ask me the date and I’ll not know but I’ll say the year is 2014! I have no idea, it wasn’t a memorable year from what I can remember and that isn’t much! Hahahaha Well Jane the Cognitive lady was here the other day and she said think of a funny story about Jayne and see if that works. So Jayne, I now have that imagine of you training Ozzie on Seaton Sluice beach running backwards and falling into a giant hole in the sand! Hahahaha I think it might just work you know!

The Neuro dude did deliver some devastating news and the few that I’ve been brave enough to tell have not hid their tears and neither have I. A long with all these long technical words is another word – Infarction which means obstruction of blood supply to an organ and or region of tissue causing localised death of that tissue. So when my left brain stem eventually clotted to heal, it cut off the blood supply to that part of my brain as well as a Haemorrhage. I’ve lost that part of my brain along with some of the things it controlled and I’ll never get it back, it’s gone. To sit there and hear those words, the words to describe what it’s previous functions were and why I struggle with them now or have lost them completely, well, I can’t quite put that one into words I’m afraid. I’ve always felt there was some part of me missing or a part that needed switching back on and it turns out there really is. To see the damage on the screen was just beyond devastating. It’s not something I can brush to one side and merrily continue to skip along. I’m not dwelling or focusing on the negatives, this shit is real and I will challenge ANYONE who dares say, but look at the positives, cos believe me, there’s no one on this fucking planet that’s more driven and forwarding thinking than me so please keep that shit to yourself! It’s not welcome here and I deserve the right to grieve that loss, though, it hasn’t happened yet like but you know! My eyes are still very much on the prize. It’s going to take time to process and digest and it’s going to take time to deal with it emotionally and it’s going to take time to hopefully prove them all wrong yet again! On to the good stuff! He got me out of my wheelchair and held my hands and walked backwards so he could watch me trying to walk and keep my balance, he was intensively watching and pulling a puzzled face, when we sat down he said, you shouldn’t be able to do that and smiled broadly, just how hard have you worked? My Mam said, god she never stops! He looked at me and said, and you never went to Walkergate Park Rehabilitation Centre? I shook my head and said, nope, just me and Val at home. He grinned again and shook his head in turn, remarkable!

We sat there in that room for just over 2 hours. His parting words to me were. I’ve never met someone so forward thinking, your eyes are firmly fixed ahead and your determination is to move forward and I believe you shall. I also believe your recovery will continue for sometime yet and we must continue to support you. You have a lot to process today but take this away with you. Some of your injuries I see once every 3 years or so. I believe you’ve been told similar but I’ve never seen a one of you and nor am I likely to for the rest of my career and lifetime. You’ve beaten the odds more than once, this head injury is a one in one million chance of ever happening and it is a one in one million chance it’ll ever happen again, you must go home and SLEEP, you are safe and if you can achieve this then I believe you WILL walk your dog again but not near any swollen rivers please!

Did I sleep? Did I hell! Partly from mulling it over and trying to digest everything but also because I’ve been told so many different things. I do believe him, he backed everything up, he explained everything, he even showed me evidence but what if he’s also wrong?! I’ve trusted many before him and luckily lived to tell the tale, though not expected to have done! I’m still taking it all in I guess and I’m sure in time I’ll lay down and sleep fitfully, here’s hoping!

So what’s the scores on the doors!?

Rare Strokes ~ 0

Bleeds On The Brain ~ 0

Blood Clots ~ 0

Head Injury ~ 1

Brain Haemorrhage ~ 1

TIA’s ~ 10 ++

CUDDLY TOY ~ All together now, Awwwwwww!

After all the years of joking, I really am, one in a million and I have a Neurovascular dude who’ll back it up!

Think Hard, Think Carefully And Consider ….. 

Well hello! Some folk will be expecting this blog to be about the profound, yet devastating and powerhouse motivating news I received after FINALLY seeing the Neurologist and Neurovascular Surgeon last week, it’s not I’m afraid, my damaged little thinker is still reeling from that one and my intel processor is in overdrive. So today I thought it was about time I shared with you something I’d like you all to really think hard about. Have you had any dealings with someone who works in care? Are you a carer? Is someone in your family a carer? Are you like me heavily reliant on carers?

You see, back in the beginning, that’s January this year, the Physio’s and OT’s recognised I was really going to struggle, even with all the gadgets and gizmos that makes our already very small house seem even smaller. They suggested carers but my Mam was adamant that I was going to be better quickly, false information from good old Cramlington, who sent me home with no care provisions whatsoever! I struggled on in a confused and bewildered state, I just had to get on with it or so I was led to believe. In early March when I was admitted once more after defying the odds yet again and surviving, it was evident that my recovery wasn’t going to be as plain sailing and as short as they had first GUESSED! Yes, I deliberately used the word guessed, because after seeing the correct Consultants and getting the correct diagnosis, it’s so very clear that they simply guessed, they even misinterpreted my MRI and MRA’s and what’s more, the treatment they gave me, well let’s just say they over treated me for completely the wrong thing and in doing so put my life very much at risk rather than saving it, so after 11 months of being, as my Neurologist has described as a square peg being hammered into a round hole, I’m hopeful that I am now finally on the right path. I digress, anyhoo, I was given the most amazing after care in our very own Hexham General Hospital, where it was agreed, I needed care at home from the short term support team at first, as well as the rehabilitation crew. So my experience and journey with carers began properly in early March.

There’s absolutely nothing wrong with needing help but I do remember snippets of the days where being washed and having your teeth brushed by someone else never mind a complete stranger, strangled and choked the very essence of my soul. I’d sit and my tears would fall silently down my face, I was 38 and a stranger was helping me with my knickers and seeing me naked, all my wobbly bits and fat tummy and asking if I needed help wiping myself after being to the loo. Maybe it’s crossing some kind of unspoken boundary or it’s rather uncouth but it wouldn’t be a true account without talking about the unsaid. Again, another time, another place but my left side wasn’t the greatest either and I’ve just found out why but again, another day, another blog. I was determined that the nurses and carers were going to leave the bathroom and I was going to wipe my bits myself. Not as easy as you may think, no balance, no coordination, little gumption, bewilderment and a body despite my will and never failing strength and determination, that just wouldn’t cooperate. I was going to wipe my own foo and own bottom, whether it took 15 – 20 minutes and all the physical strength I had, I was holding onto that much dignity at least, as tiny as it was, I was keeping it. I don’t think I have one pair of stain free knickers to my name, they’ve been tackled by Vanish and my Mothers boil wash, there’s no hope for them, it’s terminal! Christ, and I wonder why I’m single, there’s nee hope for me now! Hahaha Mind you, my track record with blokes is just as stained and as terminal as my white knickers! That’s a very different blog! I may sound vain and ungrateful but I can more than assure you that I am none of those things, I’m no oil painting or pretty thing, I’m far, far from it but that’s why at the beginning I asked you to think hard and carefully. I’m not vain, it’s true but I am so very self conscious, that part of my brain still very much worked. The carers were fantastic and recognised all of this, they’ll have seen it a few hundred times before and they knew how to deal with it, in a caring and compassionate way.

Now I want to get this bit out of the way so I can then go on and sing praises and do a bit of jazz hands. I did have a bad experience with one carer and I really feel she’s in the wrong job. I believe that caring is a calling and I don’t believe that just anyone can do the role to the standard that’s required. Being a carer requires, respect, compassion, empathy as well as sympathy and integrity. This carer had none of those qualities, she made me feel uncomfortable in my own home, asked me personal questions and was wicked and cruel to my dog Dylan, to the point of kicking him. The first time I gave her the benefit of the doubt, maybe she had small children and had been up half the night, maybe she was having a bad day, maybe her last call before me was really tough going ….. I know most of you are sat there thinking, none of those things should matter, you should never be made to feel that way, well you’re right, the second time she came with the same attitude and I’d had enough. The care providers were amazing and I never saw her again. I have to add here, that she was one out of approximately 80 carers to have come through my door at that time and that number will be even higher now. One carer went outside the boundaries of care for me and my Mam one day, I won’t say who or why but let’s just say, without her quick thinking and compassion, I’d have been lying in excruciating pain for a very long time. Another act of kindness and outside the role of carer, was another kind soul who upon my garden furniture being delivered, the local town service bus crashed into the delivery wagon and narrowly missed my then car! She was straight out checking my car and refereeing the blokes, she wouldn’t leave until they had delivered the garden furniture and moved away from my car, god love her!

On to a true hero! Eee, well, what can I say about Val Kellet, I’ve just hung up from her actually, I’ve been bollocked for falling down the stairs and busting some ribs and breaking some toes, the last thing she said to me as she went out the door last week, was, don’t fall over, don’t break anything and don’t be poorly! You see, every time she’s had time off I’ve ended up in Hospital, I reckon she just shouldn’t have anymore holidays! Val isn’t a carer but I couldn’t not mention her. Val has been there from the start, she’s watched me barely able to lift my arm or bend my fingers, she’s heard me swear and shout at my body to work and desperately trying to drag my leg and foot, willing my toes to bend. She’s seen me pull and drag myself up the stairs with the rails, she’s seen the tears, the stresses and the strain of dynamic change within the household, she’s watched and aided me go from no movement to being able to walk 10 yards or just short with her support and walking stick of course. Val arranged aids to help me try and be as safely independent as possible as she identified very early on that I didn’t want to be cared for, I don’t think many folk do, I wanted help to achieve things for myself and that’s so very different. Knowing that my biggest most heartfelt goal is to take Dylan out for walks again, Val got me to go out on my scooter with her, it was the first time without the security of my Mam, she walked Dylan on the lead while I tootled along, once at the playing field, I got off my scooter and stood to give the ball launcher some welly for Dylan but Val didn’t stop there, oh no, this is Val we’re talking about, she gave me the chance to try and teach Dylan to walk along side my scooter to heal, so that I would be that little bit closer to my main goal – guess who walked Dylan home that day from the field? ME! Or maybe I should say scootered Dylan home! Val doesn’t suffer fools gladly and knows when someone is working hard and doing their best, she honestly reminds me of my Nanna and I truly believe Val was sent to me for that very reason. When I was admitted to hospital again back in March, I begged the Physio to let me have Val again, then just recently when my rehabilitation was put on hold because of whacking doses of morphine, I begged the Physio for more help and again, I wanted Val. If I ever lose Dylan, the first places I’d look, is next door on either side, Val’s car or Dorothy and Sarah’s car for that matter (we’ll get to them in a sec) He was still a pup when he met Val, he adores her and believe me, the feeling is mutual! I don’t even think she knows how huge a part of my life she plays right now, she’s my sounding board and confidante and I couldn’t begin to count how many times a day I mutter the words, Val says ….

Now everyone in the Hexham area must know Dorothy Blackburn, if you don’t, well shame on you! I’ve known her all my life, she’s lived up the road from my Aunties for years and before that near us too. I see Dorothy everyday apart from her day off which is more than well deserved. It’s quite important that I have Dorothy particularly on my morning calls, mornings and evenings are my worst times but my Mam is about for the evenings. Twice Dorothy has noticed that I wasn’t quite right and has phoned my Mam to come home and the GP has come out to see me, I was quite unwell. You see, I might think I’m alright but I’m not, not all of the switches have turned back on in my brain yet so I think I’m fine, my perception button is still asleep, if a different carer had come on those days who didn’t know my medical history or knew me as well as Dorothy, they’d have thought I was ok, anyone would, it’s not neglectful, they just don’t have anything to compare it to or go on, that could be normal for me and let’s face it, if anyone read my care file, they’d be surprised I was still here! Dorothy has also seen a vast change in me, from hardly being able to use a knife and folk and pulling myself around on the furniture to taking much more steady steps and being more alert and lucid, well, after all my cylinders are firing or the ones that still work at least. My Mam feels confident enough to go to work knowing Dorothy will shortly be with me and if anything isn’t right, she’ll get a phone call. Dylan adores her, he loves his Auntie Dorothy, I don’t blame him, she just has that quality about her, he goes mental when he hears her coming through the door. When she was on holiday, Dylan heard the key in the door and went berserk, barking, grabbing his toy and doing little excited hops but Dorothy didn’t open the door, it was someone else, well, he didn’t do a very good job of hiding his disappointment, his face said it all – you’re not my Auntie Dorothy and with a half hearted wag of the tail, he threw himself into this dog bed with a big sigh, he’s such a villain! He’s on Dorothy watch from around 8am, he’s at the window waiting and as soon as he sees her car pull up, WOOF! WOOF! Sometimes she even gets to the door before he hears her but then the greeting is even more excitable! I’m sure it’s a game to him and I’m sure he thinks Dorothy only comes to see him too! Me and my Mam would be lost without her!

Sarah Barrass, not many 24 year olds have had to learn the hard lessons of life she has in just the short time I have gotten to know her. Please don’t be thinking she comes in here full of woe and whinging to me, far from it, she empathises and shares experiences to show she can relate to whatever’s been happening in my life, I think we’re firm friends for sure. She has a much older head on her shoulders than she should, bless her. When I’ve been in a zombie like state with all the medications and morphine etc she’s sat with me a little longer to make sure I was ok and safe. We call her little Sarah as an endearment but she’s as tall and as thin as a bean pole, she’s always cold and wrapped up tight cos there’s just nothing on her. I need to invent an electric blanket type coat for her to keep her snug. She comes and sees me on a Wednesday, though saying that, she came here today and if my bashed up brain serves me correctly, then it’s Tuesday today, anyhoo, she took over the Wednesdays that Sandra Miller used to do before moving on, I don’t think Dylan has quite forgiven Auntie Sandra for leaving but he’s happy with the suitable replacement that is Auntie Sarah. Sarah and Dylan, well for Dylan it’s true love, he brings her his favourite toys, he cuddles in with her, he lies on her and looks all doe-eyed, he even sits behind her and puts his arms around her in a furry Dylan hug, he’s quite pathetic when it comes to Sarah, he really is!

Chelsea Exton is a no nonsense kind of gal, she knows what she likes and what she doesn’t. Under the bravado and efficiency is a lovely big hearted and caring young woman. Chelsea usually comes to see us at lunchtime. I say us because yet again, she absolutely loves Dylan and Dylan loves his home girl Chelsea, he even poses for a photo or two. There’s been days where Chelsea has arrived and I don’t want anything to eat because I’m feeling too nauseous from the meds or I don’t feel hungry, well I often don’t because the hunger switch in my brain is damaged. I had someone make fun of me about this because I’ve put 4 stone on since my accident so in their mind I should have been as skinny as a lat “Forget to eat, have you seen the size of you, yeah, you definitely forget to eat!” Educated folk will know that’s not often the case with someone who can’t walk or do much for themselves, plus when I was eating it wasn’t often good food. Until just recently we were on a extremely low budget so we had very little fruit and vegetables and reliant on cheap economy type foods that aren’t often classed as food. Chelsea always tries her hardest to get me to eat something, even a yoghurt bless her. I love it when she pretends to tell me off for cancelling her call, there’s been times where I’ve been taken to Hospital or to an emergency GP appointment or best of all, on a rare occasion someone has taken me out for the afternoon. The cheek and ribbing I get off her isn’t misplaced or inappropriate, it’s from building up a relationship and getting to know someone over time. It’s being able to judge whether someone needs cheering up or needs to hear some reassurance. She’s bred from good stock is wor Chelsea, she’s Sarah Barrass’s sister.

So reading a few little bits of my experiences with carers, are you shocked to learn that they get minimum wage, no sickness pay, only statutory sick pay? Are you shocked to learn that these carers can legally work a 15 or 16 hour day? Val is a little different but she has time constraints and so many folk to get around and more and more is being asked with very little in return! Tynedale is a bloody big area to cover and it isn’t the easiest or quickest to get about! I’m considered an easy client, hey, keep it clean! These carers are people’s life line. For want of a better word, I’m one of the very lucky ones, I have friends and family around me, I have support, I can pick up the phone and have a natter anytime I want. Many don’t have that, believe me, please, these carers are a godsend. They sleep over at peoples houses on sofas and on uncomfortable foldy up beds, while their own family is fast asleep back home in their own, familiar bedrooms. They cook and clean, they bathe and dress folk, they take them shopping, even if that means pushing them in a wheelchair up Gilesgate bank! I can’t even begin to explain to folk who don’t know the area or have never pushed a wheelchair, how much of a slog that is! Bloody hard work, believe me! But they do it because it’s that persons quality of life. My Mam has been a carer, my Aunties, my cousins for years but until you live something you can’t truly know. I feel very humbled by the carers that have crossed my door. They’re so much more than the person who wipes bums and gives you your tablets, it goes completely beyond that and this experience will stay with me forever. I honestly feel their rate of pay is atrocious, I know we all get outraged about the treatment of our Doctors and Nurses but that’s a different circus of monkeys. I really wish the owners of these company’s and the fat cats could do one single shift these carers do, to witness how reliant housebound and bed bound people are of them, how beyond the call of duty they go and then honestly say they are paid adequately. I reckon they’d be a hellish pay increase extremely quickly if that happened. There’s some so called carers out there, like the one I had a bad experience with, that don’t deserve a dime but there’s some out there that deserve a bloody gold mine.

For Val, Alison, Jennifer, Helen, Carol, Marg, Sandra, Chelsea, Charlotte, Paul, Cynthia, Sarah, Fiona, Dorothy, Janice, Judith, Tracy, Terri and many, many more.

Carer – a family member or paid helper who regularly looks after a child or a sick, elderly, or disabled person. *EDIT* Unsung heroes.

Is Thank You Ever Enough?….

I keep threatening to do this thank you but I never know where to start, so I’ll just ramble and see where it takes me. I’m kinda clumping them all together because I don’t want one to appear to be more important than the other, each one has surpassed everyone else. I’m a sociable little bod usually so please don’t take my next statement as factious or glory seeking, I have quite literally received hundreds of messages etc over the last 10 months, a few of them containing empty promises. Hopefully those people and they know who they are, will never learn first hand how someone in my situation then and now build their hopes up at such empty promises, its very easy to build the hopes up of folk facing trauma or an ordeal and such empty solitude as I did and still do. I’ve admitted that in the very early days I couldn’t face nor was in a place to deal with visitors, it still is not known how I’ve even survived, my left ventricle brain stem ruptured, a part of my brain has died off, I had a massive brain haemorrhage, I was paralysed down my right side and could barely talk nor did I have much mental capacity as I was living in a fog but I’m talking about the later days. I’ve also admitted and apologised to those I’ve had to cancel due to bad days but again, they don’t fall into this category. I understand everyone has a life to live and their own challenges but when did folk become so flippant?! I’ve sat there waiting for the knock on the door only for it to never come! BUT I want to thank these people for not dulling the sheer luminous sparkle of the ones that have been there for me, the ones that have truly shone! It’s funny how some of the people you’d take a bullet for are the very ones pulling the trigger! I’ll never turn anyone in need away because I know what it truly feels like to be constantly let down and you’ll see an apology later on. Being let down is not a new lesson I’ve learnt but it’s a more profound one. So if I can help any of you guys in anyway then please, please shout as per!

First up is Wor Tom or as I’ve now renamed him, 00-Tom! I’ve told you all about him before, pragmatic, loyal, steadfast and unpretentious. Tom has done a great deal, he’s done all the stuff you wouldn’t normally think about in these situations, he’s been my constant liaison with work. In the beginning things weren’t clear for anyone let alone me or my Mam, there was in comprehension, shock and disbelief. Many of you might not realise I also work a few desks away from Tom and after a decade of service, he knows my managers very well, he was able to see a way to bridge the gap without work being intrusive at such a traumatic time, he spoke with my managers so that they understood the severity of what was happening and if I remember rightly I need to apologise to my fellow Sagelings for the short staff on TSL that day because as you can imagine, it wasn’t a ten minute chat! He still plays that role to this day, he still helps me understand protocols and procedures as well as continuing to be my never-failing friend. He still helps me with car stuff *groooooooan*, sharesave, legislations and even rocks up and fits a disabled access sign to the front gate to tell folk to keep our pathway clear after being blocked in a few times. Tom was also the person who came and got me at 9pm at night from Hospital the first time I was admitted because there was an ambulance shortage and he knew I desperately wanted to get home to see Dylan my pups first experience of snow. I must tell you a not so well kept secret and unfortunately for Tom, I somehow remember it very well, possibly because it’s so funny! The nurse was “helping” Tom put me into the wheelchair, I noticed we weren’t going that fast and I could hear Tom sounding rather out of breath, Tom, are you ok? The break isn’t on is it? Oh dear the helpful nurse had put one of the breaks back on without Tom noticing!! And it gets better! In the car park a gift bag handle broke, Tom picked it up but let go of me and there I was merrily rolling down towards the car park – Toooooooom! I only rolled a couple of metres but so so funny! So 00-Tom, I thank you!

Every good 00 agent needs a Bond girl so it leads perfectly to my next victim, Colette. Now my little pal doesn’t suffer fools gladly, in fact, if you are a said fool who happens to do her wrong then you’ll be ceremoniously called out on it and served your supper cold with a soupçon of fuck you, to me she is generous, passionate and creative. She has a devil-may-care attitude but is also meticulous. She’s my problem solver and sounding board but most importantly, she totally gets my dark sense of humour and understands where it comes from and never questions my beliefs. She understands my fears and usually wants to biff my ex’s because she can see what I never can, me for who I truly am, I’m oblivious! Colette was the first person I was ever brave enough to show my artwork to, we both have a love of the arts and she encourages that side of me, even giving me her daughters easy grip paint brushes in an attempt to banish my fear of never being able to paint again, she’ll always come up with a solution. Again, Colette was one of the only ones I’d let come see me in Hospital and in the early days at home. The day I was waiting to be discharged from Hospital the first time I clung to her and didn’t want her to go because I was frightened I’d never get home. She knew how much Dylan means to me as Amber dog means to her. Colette’s the friend that upon hearing I had to cancel my physio due to folk blocking the gates, promptly ordered a disability access sign and deployed 00-Tom with his power tools to fit it! Fnar! Fnar! It wouldn’t be a Colettestiment without at least one Fnar! Whether it’s making vagina like candlestick pottery, singing into a lemon squeezer or stargazing, she’s been right there when I’ve yanked on the chain – Thank you Poppet!

Talking about chains, next up is the living life like you’ve broke free of your leash, Victoria Dillon aka our Vicki. I always want to get Vic one of those superhero Lycra suit jobbies, she’s forever off on a crusade and like the Flash, moves so quickly that at the moment I feel like I’m stood still! She’s will-o-wisp, impossible to pigeon hole and she’s Thelma to my Louise or once was, things have changed somewhat, she’s seen my spontaneity vanish, not just now but due to events last year leading up to my injury, it makes me sad when I look back on all our adventures cos believe me, just going to B&Q can turn into a fun filled quest with us! I miss our sing songs in the car and getting lost but I love it when she’s in A-Team mode and putting a plan together, bouncing ideas about and putting the world to rights, we’ve both experienced more than we should have in our lives but then that’s why we “get it” I don’t remember much about being in Hospital but I remember her trying to hide her tears, the fidgeting and restlessness wasn’t solely her Parkinson’s that day. You may not know but Vicki is a Specialist Nurse and is no ones fool, I remember her challenging and questioning the Consultant the second time I was admitted and later went into shock, he was grilled like he was on Mastermind or standing in the dock. Vicki has been supportive to my Mam too and the pair of them are going to be causing festive madness in the next up and coming weeks, definitely not to be missed! The Vickster phones/texts me every day or so or pops round to see me and she’s tried so very hard to find that carefree person inside of me again, unfortunately even a trip to her house can be a military operation but she still asks me along for a drive or asks if I want to be apart of things, no matter how much I say no, she still asks. I even trusted Vic enough for her to teach me to put my head under the water and swim to the other side, anyone who is as fearful of water as I am will understand how much I truly trust her. If I asked her to push me all the way to Newcastle she’d say no, we’ll get a limo & that’s what I love about her! Thank you Thelma!

Next up is Jayne, I’ve only known Jayne for two and a half years but she was one of the first to knock on my door when I felt as though I could hold audience. The totally crazy thing is that Jayne and I quite possibly played together on Leazes View, Rowlands Gill many many moons ago! I shit you not! Her parents still live there! She texts me every few days and has become accustomed to the daily trials and tribulations I face. Jayne may appear to be a little shy at first, not that I ever experienced that but I guess folk don’t get the chance with me, I’m like Doug the dog on the animated film Up – Hello, my name is Liz and you will like me! Jayne’s methodical, loyal, kind and hardworking, she also has a very strong shoulder to lean on and a good listening ear, though I don’t think much of her wheelchair pushing skills, let’s just say I got a very good view of Bensham as I found myself heading down the grassy bank of Saltwell Park, you know, I’m starting to see a pattern emerge here, I think it might be a good time to let everyone know I’m not insured and I don’t have a will! She’s as mad as a hatter and great at beach potholing! Thank you babe!

Now for Tracey, Tracey was the very first person besides the terrible trio that is Vicki, Tom and Colette,that I allowed to visit me. I knew her mind would never be at rest until she came and seen me with her own eyes. She’s so incredibly creative but chooses to to hide it somewhat so, like the little scamp that I am, I often have to out her! She can crochet like a beast, I still have Bessie the Unicorn from years ago and a fantastic artist! Her garden is like a little pixie kingdom. I met Tracey about 6 years ago when I worked for Tim Pearson at Orchard Vets, I was working at the Stocksfield branch that day and through one thing and another I stole her and she became a Hexhamite and a firm friend. Tracey is one of the most kindest and thoughtful people I’ve ever met, I truly wish I could show you the trouble she went to, to transport a miniature cake, it’s was wedged and balanced meticulously inside a Tupperware box with precision and not one bit of icing so merely touched the sides, that’s Tracey, she puts her whole heart into something and someone. I also have to mention her Mam June, June who upon hearing my first little go go scooter had gone to scooter heaven, was going to buy me a new scooter with her savings and be buried in a cardboard box, me and my Mam were both choked by such selflessness. Poco a poco se anda lejos! Thank you lovely!

Now I can’t leave it there, Teresa my longest serving friend, I think she should have had a gold watch and more by now, to be so far away (Worcestershire, not Middle Earth) and to learn the news via text with limited details, well, let’s just say she was fraught. I spoke to her on the phone as well as I could back then and she came and saw me a short time later, I saw her shoulders instantly relax when she saw me, I was still Liz. Kathryn, I have to make an apology to Kathryn, a massive one, her Dad passed away last year before my big haemorrhage and I was still being misdiagnosed, I was having TIA’s every 1-2 days and just off the planet, I really wasn’t plugged nor thinking straight and I put her off coming to see me because of the state of our undecorated house, I was always on the end of the phone but that’s not the same and I feel I let her down terribly. So Kathryn, I truly am sorry. I miss our walks with the boys (Dave is Dylan’s BFF) and I miss our chats, I hope that one day we’ll get to go the beaches again and walk along the river putting the world to right while the dynamic duo run and tumble along. Penny was my partner in crime at Orchard Vets, from the day I sat the interview we hit it off, we’ve been through so much together, nob head boyfriends (mine), cretinous long term partners (hers), births, deaths and the ups and downs of a highly emotional job. The hardest part of leaving Orchard House and believe me, I felt wrenched and heartbroken, was saying goodbye to Penny, actually, we never actually said goodbye but you know what I mean! Poor Penny, my brain is such a tangled mess and there’s been a few times I’ve forgotten to text her back or press send, you’re not alone Pen, I promise you!

The finale – I find it incredibly hard to find the words to express to all my friends and well wishers how truly grateful and thankful I am to have you all in my life, the support and love I have been shown is phenomenal, PHENOMENAL! I spend huge chunks of time trying to find a way of expressing how completely blown away I am, the encouragement and kindness is off the scale, the sheer abundance and enormity cannot be put into words or gesture, thank you just doesn’t feel enough, I’ve tried to find new ways of saying thank you and showing how truly blessed I feel to have you all in my life and there just is none! So to all you superb friends and well wishers out there who’ve taken the time to wish me well, to offer support, to check on me, to travel 30 plus miles to see me, who want the very best for me, who gets behind me and encourages me and urges me on …… THANK YOU! ❤️