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 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. ( 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! ❤️

Wheels On Fire …. *Advisory Explicit Content* Sorry Mam!

Sorry it’s been awhile, it’s not because I’ve got nowt to twist about, don’t be so daft! In all seriousness I’ve been poorly with excruciating pain and with no other opinion than to take high doses of morphine which makes me vomit and then sends me into a comatose state. Unfortunately I can still feel the pain, I’m just too much of a space cadet to do anything about it, it’s pants, I know! Anyhoo, the time hasn’t gone without the odd calamity and adventure though! Of course not! This is me we’re talking about after all!

A couple of things to bring you all back into the crazy Lizzie loop. The car has gone but not without a fight! I cannot let the last sentence go by without a few expletives so cover your ears – fucking bastards! And that’s putting it politely! As always I have a tale to tell. I’m naming and shaming folk today so if you know them or see them about give them a great big cheer!

Firstly, my appointment with the Neurovascular dude at the RVI turned out to be an appointment with a Stroke Specialist, I use that term loosely because he was far from special, he was a pompous, arrogant, patronising arsehole! Hexham General failed to send my notes ahead so the Neuro dude unprofessionally read the first few words of the referring letter, Stroke Physician and didn’t read any further, he failed to see I was 38 and I’d had a head injury and haemorrhage that caused a stroke and he passed me on without my permission to the Stroke Unit to the above described arsehole. I was told by said arsehole that my account of what has happened to me was absurd and preposterous and I would not be sat in front of him today, I was told that no medically trained Physician would jeopardise my life by taking the risks I claimed whether I was at risk of dying or not, he challenged me but quickly shut up when I named the drugs used and procedures, he then moved on to slander me further and again challenging my account but my answers stumped and annoyed him. He then started to contradict himself and get aerated, he insulated me further and pointed to a spot I had on my hair line and asked if that was where the pain was, the excruciating pain that causes me to be on a cocktail of meds and topped up with Morphine, the inescapable deranging pain that debilitates me, the pain that feels like I’ve been bludgeoned and if that wasn’t enough, he sat there and said he thought I was courageous, admirable and outstanding to achieve as much as I have with so little rehab but he had 17 other patients to see worse off than me. The medical student sat with her head bowed in embarrassment, my Mam released the break on my wheelchair to push me away and I promptly knocked it back on again and said I have two pages of questions I want to ask, I then started to read out a few questions to a extremely shocked Consultant, who’s only reply was, I don’t know, those are questions for a Neurologist to answer, I agreed and said, that’s who I was meant to be seeing! And there I sat with my breaks on for 55 minutes until the tears of frustration beat me! Now my family and friends, hell, even my sworn enemies will tell you that I am most certainly not a oh woe is me kind of girl, I have never once in my darkest days ever muttered the words, why me, I never have in all my life, I take what’s lobbed at me, there’s no pity me in this hoose pet, you just get on and work through it, come what may! I told my GP the only time I ever want to see that man again is for him to apologise to me because what I told him wasn’t absurd or preposterous, it was very much fact and now that he has seen my notes, I’ve received a copy of the three double sided page letter to my GP and let’s just say his tune has changed somewhat, he does say he was met by an angry and frustrated young lady but on reflection it’s understandable. Aye, you arsehole! My GP is livid and said I am more than in my rights to write a complaint, Doctors and such likes tend to stick together or sit on the fence so this really did shock us, my current Consultant who referred me is also livid about the encounter BUT something great has come out of it, my case is so rare and so unheard of that it’s being presented in front of the Neurological review board and one Professor has already found something potentially missed on one of my MRI scans which could be the cause of the Dystonia like symptoms I’m having. You know, all this is very much a two sided coin, on one side is the GP’s and Consultants that have messed up more than once and repeatedly, if not for those cock ups I might not be in this situation today or not in as bad a situation but on the flip side, I am incredibly grateful beyond words that they have saved my life five times now. I’ve had to remind myself that these Physicians are humans just like you and me, we put a great deal of faith in them but I’ll repeat the first few words of this sentence, they’re human just like you and me. That’s not me saying, oh it’s ok to mess up, I’m just saying they can! Anyhoo, let’s move on to the good stuff eh?!

So I’ve known Paul Robbie for many a year, he has a garage down Haugh Lane in Hexham, that’s 25b Haugh Lane to be precise *Plug* Back in the days when I was starting out as a young driver buying half knackered cars and some that can only be described as dodgey, Paul had the pleasure of digging me out of a few holes! He used to laugh at my enthusiasm and how much I loved my new, next to near scrap heap of a car. I also know his sister Lynne Robbie, Christ where do I start about Lynne?! Lynne has the biggest heart and is forever arranging workshops and table top sales in Bardon Mill/Henshaw. I met Lynne one night years ago at a mutual friends house, we were all there having a spiritual reading done, we instantly hit it off, we were the Chatty Cathy’s in the room with the loudest laughs! Then we met again a short time later at the Vets I worked at and still take Dylan, Tim Pearson, Orchard House Vets *Plug* and we just kept bumping into each other on nights out, theatre trips, fairs, you name it! I think it’s safe to say we’re friends now! Hahaha Anyhoo, Lynne saw me having a rant about GMAC and Vauxhall, she had a natter with Paul and asked me if they could look at all the paper work I had. Next thing I know there’s a letter winging it’s way to GMAC which took a bit of heat off for a short time because at this point GMAC were either ringing or writing everyday, Lynne also wrote to Don Littlewood and Watch Dog in an attempt to loosen the noose around my neck as there’s a legislation coming into play soon about handing your car back in certain situations. I’m sure I mentioned that the amount of stress I was put under was triggering seizures that they believe are Petit Mals, I’ll park that one there for now cos that’s another blog in the making, no pun intended! So in the end, I still wanted to savour some pride and do GMAC out of their, you’ll be 62 by the time you finally finish paying it off plan, and I sold it back to them which meant finding £2,898.46p. Me and my family accumulated our credit cards to get the bastards and their debt collectors off my back but of course, all I’ve done is swap one debt for another, it still needs paying! My Uncle Dougie drove me to Bristol Bastard Street Motors to do the deed, they’ve always been lovely to me in there, in the past I’ve given them biscuits, chocolates and flowers for helping me out and giving good service but that day none of them could look me in the eye as my Uncle Dougie wheeled me in, I don’t think they thought it was right either. We had our say and as my Uncle Dougie drove me back home he gave me a talking to about how I’d eventually pay the cards off and how I could focus on my rehabilitation now and that in the future who’s to say I can’t drive again, get your mobility and strength back and then look to get a suitable car NOT FROM BASTARD VAUXHALL who are soon to be Peugeot anyhoo! You see, my Uncle Dougie recognised that the tears that were falling weren’t for the piece of red metal, they were tears of sorrow because that piece of red metal was a symbol of my independence and freedom ……

Another little singing ray of light was my little pal Kim Cooper, Manchester lass living in Wales. This kind soul setup a Just Giving page to help me pay some of the debt off. Unbeknownst to me, my fabulous friend Andrea Ashcroft had contacted Lynne (I tell you man, I can’t get shot of her! Lol) about setting up a page too but Quick Draw Kim McGraw got there first. Admittedly, I was dead against it, I kicked and fought with it for the sole reason that I am always the one to give, never receive, I wasn’t ungrateful, far from it, in fact I was floored and brought to my knees at the sheer thoughtfulness, love and support people wanted to give me, Kim won hands down the other night when she flipped the tables on me and said, if it were anyone else would you have done the same thing! DAMN IT!! How did she get all the aces in the deck!? So now there’s a plan in place to pay all the cards off. The problem is I’m too conscientious and worry far too much about what people think, even after many a talking too! After writing this today, I hope the car etc is dead and buried because I’m spent, literally. The lovely Ali Armstrong is always sending me and Mam distance healing, Facebook page Ananda *Plug* whether you believe in the power of the universe or not, it brings me great comfort, through Ali I discovered another lady that I try and catch each morning on Facebook called Carol – Mystical Moments *Plug* Today Carol talked about letting things go {Cue waving arms and Disney singing} from the past, so I reckon that’s what this blog helps me to do, so I shall keep twisting on until I’m twisted out – that’s never gonna happen, is it?!

I also have to do another shout out to Lynne, Paul and Cameron for handing me back a bit of independence and self worth. My Mam is 5ft on a tall day and has really painful bandy legs, we always said she’d never catch a rabbit! My personal diagnosis is arthritis or she needs knee replacements, E L Clark MD! Now anyone who’s pushed a wheelchair will know how difficult it is and I’m sure I’ve mentioned it, if so I’m telling you again, I feel incredibly guilty and burdensome having people push me around. I don’t enjoy it, although I love to be outdoors and love seeing folk, I find it depressing and soul destroying just sat there and knowing the pusher is knackered, I know I’m wicked and ungrateful for saying that because there are folk far far worse off than me but I used to thank the lord when it rained on my Mam’s day off so I wouldn’t have to go anywhere or have her push me about, she used to be gutted when it rained because she knows how little I go out, 11 times and counting, she’d even feel guilty but deep down I was relieved. Mind you, some of that was anxiety and fear too, I can’t lie, it’s frightening out there as much as I want to get amongst it all. You see, I’m safe indoors, my feet and brain can register indoors and I can pull myself about quite happily, outside is scary, there’s noise, atmosphere and ground that my brain jumbles all up and doesn’t compute, I also have very little balance because that part of my brain is damaged too, my feet don’t like shoes either, my Mam will laugh because as much as I love shoes and have about 60 pairs, if I could walk around barefoot everywhere I would! So it was mentioned to me very gingerly as “This girl can!” may just nuclear explode with contempt if one more person or consultant MERELY suggests she may never master walking again, about getting a power chair or mobility scooter. I disarmed my missiles momentarily and pondered. Then the natural researcher in me started to try and do a bit of a recce with the help of my reading assistant (my Mam) Jesus, Mother Mary and Joseph and the bloody donkey that took them there! They’re expensive to hire once you add up the monthly costs, the same with the mobility scooters, you could actually buy three if you added up how much you paid over a year! I was telling Lynne all this, I know, her again! Lynne’s since passed Dad had a mobility scooter and her Mam Pamela still had it, after a chat and a tinker and a spruce up by Cameron, there was a surprise drop off, a surprise because there were no keys through my door nor was there a mobility scooter in my garden. Daft Paul had left it at the wrong house so it was definitely a surprise for the girl that lives there when my Mam and our neighbour Margy rocked up looking for it! I think Paul had kittens! Amongst all the chaos, the gorgeous Lisa Knapton who owns Tynedale House Clearances, 26a Haugh Lane *Plug* arrives with a beautiful Citrine ring I was admiring on her Facebook page, bless her heart, Citrine is a friendship stone amongst other healing properties, I just love it! As Colette said the other day, folk are only paying back what you’ve given over all the years so I feel a bit better about the flow of abundance!

So, after 9 months I finally got to go along on a walk with my beautiful Dylan the Villain and throw the ball and even chase after him, I was tearing it up Fast and Furious style-E! The video is at the bottom of the blog. I even ventured into the Town that Saturday and what a difference, I was doing doughnuts in the middle of Poundland for a little old dear who’s definitely going to get her own scooter now and not struggle on with her walker, I even had the courage to nick off with our Vicki (Thelma to my Louise) to get her prescription at Boots and say a quick hello to Kathryn, though my Mam came and found me a short time later just in case but what a difference to have a small piece of independence back, I can’t thank the Robbie’s enough! Though I have to report back to Paul today and deliver the bad news that my little Red Baron has sadly died whilst I was climbing the hill home, luckily good old Mam caught me and Nathan next door pushed The Red Baron home but there’s a plan forming to get another! So watch out for the sequel! You know what, joking aside, after everything I’ve been through, everything to be flung at me, all the angst of cars, finances, worrying what folk think, shitty so called friends, epic tremendous friends that I’m yet to tell you all about, family, my Mam, my little furry angel Dylan, fighting Consultants to get the correct treatment and being determined to prove the fuckers wrong and WALK and DRIVE and everything else they say I can’t do, I am very very fortunate, beyond grateful and so incredibly overwhelmed to be on this adventure cos what a ride, what a tale to tell, what a challenge! I’m offering life out – C’MON THEN IF YOU THINK YOU’RE HARD ENOUGH!! WHO ARE YA!! WHO ARE YA!! Remember who you’re dealing with, this girl can and I am that girl! BRING IT ON!!

🎶 This wheel’s on fire, Rolling down the road. Best notify my next of kin, This wheel shall explode! 🎶

Betty’s Granddaughter ….

Hello, yes it’s me again! She came back! I can’t possibly write or dictate in my case, another word until I have thanked you all for the response and encouragement of my last blog! Thank you! Blown away to say the least! So today started off like any other day, Dylan the Villain up to villainous things, being shouted at, the sound of running water in the bathroom and a fluffy excited 32kg deadweight upon my chest, good morning Dylan! Then my Mother’s voice, he’s been naughty again, he stole a sock! Then it’s a death defying slalom to get down the stairs, Mam goes to work and Dorothy my carer arrives to get me ready for the day, including breakfast. Nothing unusual or out of place there. But today is a different day, I can’t call it special, I always feel that implies something great and out of the ordinary, though maybe today should be described as special now that my mind has just drifted back to that day? Today marks 3 years since my Nanna passed away, I can’t say died because she’s still very much here and alive inside everyone of us. My Nanna was special to us all in so many different ways but I’m going to be selfish and tell you about MY Nanna.

Out of respect for my family, I will not and cannot go into much detail, I’m going to be in hot water for sharing this much but I promise you, you’ll feel richer for reading. The 11th April 1932 Elizabeth Isobella Middleton was born, she married John Featherstonehaugh Clark and was known as Betty Clark, here starts the life of the most strongest person I am ever to meet! It was a hard life and I don’t mean that lightly, men worked but the women worked harder, big families, illnesses, deaths, violence, abuse and kids went hungry. In society now, we give these things fancy names like domestic abuse, in those days, you got brayed, it’s exactly the same thing though and just as awful. Most of us have read Catherine Cookson’s Fifteen Streets, well, I need not say any more. I have never heard a story like my Nanna’s and I pray I never do. You’ll learn where my dark sense of humour comes from as you walk along with me, hopefully! Please stay! 
When we all get into full swing of reminiscing which isn’t too often, there’s always a story that pops up. It’s about the Toby Jugs that sat above the living room window on the wooden pelmet. There were once 6 Toby Jugs but out of necessity to feed her 5 kids while Johnny splashed the cash on a night out, she’d pawn a Toby Jug. She’d spread the remaining jugs out to hide the gap but live in constant fear my Grandad would notice, a few Toby Jugs found their way to the pawnbrokers and my Grandad never ever noticed or found out, she took that and many more survival tactics to her grave and we smile and belly laugh at some of the tricks she had to pull. Unfortunately, those laughs quite quickly turn to sadness, resentment and yes, anger for what was allowed to pass. 

I have mixed feelings about my Grandad, it’s like I loved two very different people and I’m guessing it was like that for Nanna too but on a much grander scale. I loved him yet I cried many heartbroken tears for how he could and had been. My Grandad was a hard and sometimes cruel man, having been brought up in a cold hard era, he suffered abuse, i remember being told about my Great Grandma Clark clenching her fists, rolling her sleeves up and asking him to choose between instant death or long term sickness. There was always a joke made of it but it was so very true. He was a educated man, he was a scholar, I learned a great deal from him and this is where you’ll all think I’m away with the fairies but my Grandad was just as much the gentle, kind loving man who taught me wood work, about Kings and Queens, about the pioneers of the North East and a multitude of things, I could keep listing and listing. He smacked me once when I was 3, my mam moved out of the family home and we got our own flat, I bloody loved that flat, even if my teddies bottoms did get stuck with ice to my windowsill and had to be chipped off and defrosted in front of the fire in winter. It gave a whole new meaning to bottoms up! My Grandad sent for us a short time later and he apologised and promised never to lift a hand to me again and he presented me with a wooden sledge he’d made, my Mam refused to move back but he was as good as his word and never smacked me again. I’ve made peace with my Grandad over the years and I did love him. 

When I was 19 and I had gotten my first proper stable job, training to be a Veterinary Nurse, my Nanna left my Grandad for good.  

Oh how life took off for her. She had her own little granny flat, decorated how she wanted it, she bought clothes, shoes, even “scent” with the little bit money she had, if she really liked something she wouldn’t just buy one, oh no, she’d buy it in 3 different colours, I’m giggling away to myself here, nearly everything was green. She went to the bingo, in her words she’d say “your Nanna was a jammy get, it comes in threes Elizabeth so I’m going to bingo again tonight” and sure enough it did, whether a bingo win or lucky scratch card or tombola, she’d win it lad. See, my Nanna slipped out again there! She even won the lottery you know, not the jackpot but seriously, she did, she got a few numbers, it wasn’t big money that week but she won it and gifted almost all of it to her kids, bless her. She looked after nearly everyone in that sheltered accommodation, she walked up a great big hill to go get them fish and chips on a Friday, she did little bits of shopping for them but one of my favourite things I must tell you, so please hang in there! In the big day room downstairs where they sometimes played bingo, it was decided that the local dementia group would meet there to do crafts, listen to music and play dominos and such likes. My Nanna very much feeling the need to fill a void offered her services, it went from sitting nattering to the old dears to her helping in the kitchen washing dishes and taking tea towels home to wash, to waltzing to all the old classics to THEN getting her NVQ. Yes that’s right (Oooow, I’ve just got goosebumps writing that!) at 79 my Nanna got a NVQ and became a fully pledged volunteer! When the dementia club first started up, there was a residents meeting as a few weren’t very happy about them meeting there. My Nanna was stopped on the stairs one day by a neighbour and was told it wasn’t right having all these insane crazy people in their building. Well, I can tell you, that lady was handed her pedigree right into her hands. “Don’t you go around calling them that, be careful what you say, it can happen to anyone of us!” 

Years later that lady joined the club as she had developed dementia ….

I could write about her for hours and hours, days in fact. I often got called Katie or Katie Jane but I mostly got called Flossie and when I later decided to inflict my art on to the world, I wasn’t courageous enough to expose myself for fear of criticism, I named my artists page and work, Flossie Inspired because she truly inspired me. 

I was very proud of my family the week leading up to her passing, we all piled into her tiny granny flat, we let the Hospice at Home nurses go, though we’d only had them a few nights, we cared for her ourselves, it was a promise my Mam had made her many years ago, that she’d never see inside a nursing home and I think my Mam is very proud that she could fulfil that. We decided as a family it would only be us at the end, no carers. Me and my Nanna loved to sing, my Nanna used to sing to me as a baby and there was always one song that got belted out. We’d sing in the car on our days out and I even joined a choir at one point. I remember the afternoon well, I was sat on the seat next to her bed and we had her music on, we were singing and holding hands and she kept waving my hand back and forth in time to the music, we were singing Elvis, the man is a god to me but that’s another story for another day. Suddenly I could not hold the emotion and hurt back any longer and my voice broke, that damn pesky lump in my throat the size of Australia nearly cutting off my airways, snuck up on me and my mask of bravery disintegrated. You might not think it a tender moment but my Nanna said “nu come on now Flossie, we’ll have less of that, nu stop crying, you’re going to miss the chorus, sing!” so I did, very poorly and very difficultly, it was more of a rasp than anything. 

Passing can be a slow process, we each took turns to sit with her and say our peace, I was particularly proud of my Uncle who is a man of very few words but once something was on his mind he’d be up, grab some tissues, tap the person on the shoulder to shift and he’d sit and share his thoughts and love with her in private, though she always knew how loved she was, it was more about us giving her our final love and emotional gifts to take with her. Everyone was comfortably far enough away to have a little privacy. When I sat with her I never had anything to say because I’d always told her throughout her life, we used to have little chats you see, so I sat and thanked her and reminisced about trips to Whitely Bay (I have a bag of sand from Whitley bay that I plan to put on her resting place once I can – Shhh! I know it’s naughty!) and how we were going to sail to France on the boat moored on the Quayside which later became a floating nightclub. I did however thank her and apologise for being an arsey teenager and sobbed when I said my only regret is that she’ll never meet my children if or when I have them. That seat next to her bed was never empty for even a minute throughout the day and night, for days we lay on the floor, accidentally kicking each other or crumpled up in a chair, one night I slept for 2 hours on the visitors chair in the corridor outside my Nanna’s flat. On the 18th of July, just after 4pm my Nanna found the strength and courage to leave us (goosebumps again!) THOUGH the buggar nearly left without me and my Auntie! I had nipped to my Auntie’s literally up the road to have a very quick shower, we got back just in time, my hair was still soaking wet and I have to confess Nanna, I had no knickers on when you left! She passed away on this day, surrounded by us lot, the lot that usually can’t be in the same room together for 5 minutes without shouting and arguing, in her own home, in her own bed, with the birdsong dancing through the open windows, the shadows of “that bloody tree” outside projected onto her green carpet (she always threaten to chop that tree down!) surrounded by respect, admiration and love, on this very day. 

When I was rushed to hospital back in January, I couldn’t feel her near me and I was getting myself upset, a male nurse was making the bed across from me in the dependency unit and he was whistling and humming away to himself, I instantly recognised the the song, as he walked past my bed I said with my best speech I could muster, you’re quite young to know that tune and sounding like a Nanna myself, he replied what tune?  

The one you were just whistling and humming.

Was I?! 

Yes, for a good 10 minutes.

He giggled and walked away completely oblivious. The tune was Bring Me Sunshine and was featured on the Morecambe and Wise Show that I used to watch with Nanna and Grandad, he taught me the paper bag trick and if you don’t know the paper bag trick, I suggest you get yourselves onto YouTube or Google it and find out! I looked upward and smiled, aye, she was there alright!

So who am I, well I am that girl but I’m also Betty’s Granddaughter.

🎶 Que sera, sera, Whatever will be, will be, The future’s not ours to see, Que sera, sera, What will be, will be …. 🎶

I am that girl ….

I thought I would introduce myself, I’ve never had a blog before, though I am a dab hand at Facebook and I’ve usually used that as a vessel. I’ve always threatened to start a blog and post my many calamities, triumphs, traumas and years of heartache and wonderment. I’ve also threatened to write a book! What has spurred me on is that I have recently become unwell, my life dramatically changed over night. On the 14th of December 2016 my life took a turn for the worse, for the worse or for the better? Now that’s a pondery and still to be decided! I have faced some incredible difficulties and adversity over the years, heartbreak and utter devastation, I’ve also been incredibly blessed to have met some wonderful people along the way, I’ve enjoyed life and given back as much as I was gratefully given, I believe that all that love, struggle and strife and heartache, all the ugliness in the world and overcoming incredible hardship has prepared me for this journey that I’ve found myself on. Not only how far I’ve come but what is still lying in wait for me. So back to December 2016, I sustained a head injury that ruptured my left ventricle artery in my brain, this caused a haemorrhage and a rare type of stroke, that day I should have died instantly upon it rupturing, the damage to the artery is 3-4cms, now that’s some injury! For whatever reason I survived but over the next four weeks I suffered TIAs which are commonly known as mini strokes, where the artery was trying to heal itself and tiny clogs were breaking away and being washed along with the blood flow. I was having a mini stroke every 1 to 2 days so I’d feel champion one day and barely able to move the next. Three GPs misdiagnosed me on three separate occasions, I was given various diagnoses, including suspected meningitis (ruled out quickly) labyrinthitis, a virus and even flu, I was living in a fog and holding onto walls and furniture and I experienced weakness in my limbs, it’s a good job there’s photographs of Christmas and New Year because I barely remember them, a part from a fleeting thought of, Mmmmm, I love parsnips!

In early January I had the most horrific experience that I find extremely difficult to put into words, I lost consciousness and when I came round I was paralysed down my whole right side and unable to talk. I was at hospital on the stroke dependency unit, a consultant had the difficult task of trying to explain to me what was wrong and forming a timeline to determine what had happened. I had had another Haemorrhage and a second much bigger rare type of stroke and if that wasn’t enough, 5 days later I was to suffer a third haemorrhage and a third rare stroke after being told that these types of strokes and injuries are so extremely rare. They’re only seen once every 18 months and often by people fatally injured in a car accident or a motorcycle accident. How I am here, I truly do not know and neither do my team of Doctors and Consultants. If that wasn’t enough in early March, a clot from the original injury was migrating and heading for my lungs and my heart, I was blue lighted to the hospital where they saved my life again by giving me a drug called Alteplase and I was thrombolysed. That in turn was a very difficult call for the Consultant that day. I had a 50-50 chance of survival having the drug, the reason being because of the haemorrhages and the type of rare strokes, plus I had a clotted injury that needed to be there to heal! There was no decision in my eyes, I chose life, like I say, to me there was no decision to make, I wanted to live! I had already defeated the odds more than once since December so I was going for broke! Six hours later the drugs that had just saved my life, then decided to try and take my life and I went into shock. I had a weak but rapid pulse and laboured breathing, I lost consciousness and I had to be resuscitated. In the middle of all of this and unbeknownst to me there was a BBC camera crew there filming every step, so even in the grips of death there I was on the BBC1 documentary, Inside Out. It’s official, this girl doesn’t do things by halves!

Over the last 7 months I’ve been retraining my brain/body, from little things like trying to get fingers to bend to relearning to read and trying my very hardest to walk again. I do a fabulous crawl on furniture and can manage one or two wobbly Bambi steps but often I need my zimmer frame and I definitely need my wheelchair to get out and about, though I’ve only been out of the house 7 times and counting since mid-December, not including blue flashing lights and high speed ambulance rides. I have short-term memory loss due to damage to my left temporal lobe, so I might repeat myself quite often so bear with me! I don’t have much mental capacity at times, some days I’m trapped inside my own head and unable to explain what’s happening, other days all the switches are turned on and it’s green for go, it’s the same physically, one day I can wobble and drag myself across the sitting room on the furniture, the next the switch has flicked and I can barely hold my phone in my hand. In the beginning no one knew what was wrong with me not even the GPs who misdiagnosed me. Unfortunately some people in my life decided to call me a liar and even when a more informative diagnosis was given, they still continued their quest to discredit me and deem me to be an awful person. It wasn’t me who showed their true colours! Thankfully, they are very much in the minority and the support, love and care that I have been given over these months is phenomenal, absolutely phenomenal! I have a whole wall covered in get well cards, I’ve had fresh flowers every day for the last 7 months, apart from one single day just recently, there’s not a day goes by that I don’t get a message, a phone call or a request to visit to see how i am or ask if there’s anything they can do for me, though the visits are few and far between because they all have such busy lives and there has been times I’ve been too poorly, but they’re still there and it will get easier to interact and socialise as I continue to recover. I’m sat at the sidelines of life right now but I am so incredibly thankful and blown away by everyone’s support, even in my darkest days my heart swells! On that morning in mid December I lost a great deal of things that right now, I can’t possibly begin to explain but I somehow have become richer. I’ve had people step up to the mark without even being asked and support from people who I didn’t even think I mattered to. Don’t get me wrong, it’s an incredibly lonely time, in fact, I’ve never felt so alone in all my life but I don’t feel sorry for myself, I never have but if there is one person on this planet strong enough to overcome this then bah, Christ, it’s me! So I say, bring it on!

My saviour and constant companion is my one-year-old black Labrador, Dylan or also known as Dylan the Villain and most recently, Devil Dick! It was saving him from a rapid river that had burst it’s banks that may have caused my injury. Having a head injury with all the complications etc the Doctors were concerned about the loss of Serotonin which they described as the happy chemical in your brain, obviously I’ve lost a lot of the Serotonin with the three big Chrysanthemum type firework bleeds in my brain, they also spoke to me about Post Traumatic Stress Disorder and promptly put me on the “watch” list. Even though I’m so incredibly, incredibly thankful that I am alive, they worry that sometimes people can feel differently and feel so overwhelmed and lost that they want to take their own life. I truly believe that Dylan has prevented me feeling any of those things so far, most days he is my only company a part from the fantastic carers who help out twice a day, he is my constant companion and gives me unconditional love, it doesn’t matter that I’ve got tatty hair and I’m still in my Harry Potter pyjamas, he doesn’t care he just wants to snuggle and have the crust off my morning toast. So you’ll hear a lot about him!

This might sound a bit crackers but being poorly is a luxury, we live in a world today that runs on money, as much as that pains me to say, it’s a cold hard fact! I haven’t just been sitting at home convalescing, eating grapes and holding audience, far far from it, the sad truth is I literally don’t have two pennies to rub together as my dear Nanna would have said. I’ve been kept from focusing on my recovery and achieving my goals because of constant phone calls from the likes of GMAC about car payments and repossession, even though I’ll never be able to drive that car again. I don’t get sickness money from work, I get Statutory Sick Pay and I’m sure a lot of you know that’s nothing to live on never mind paying for cars etc These companies don’t care what you’ve been through, they don’t care that you should have died 5 times in 7 months, there’s no empathy, there’s no sympathy and I have to admit that there has been days, despite my little Dylan the Villain, where they have pushed me over the edge and it chokes me to say, I’ve exclaimed those horrific words, I should have just died! I know, horrendous! Along with the head injury I’ve been having seizures and the constant phone calls have stressed me to the point of bringing on multiple seizures but that again counts for nothing, they want their pound of flesh and anyway that they can get it! I’m 38 and I’ve never ever been in this position before, I was made redundant in my early 20s through no fault of my own and I signed on at the dole office and three days later I signed off because I can turn my hand to anything when needs be, I went from Veterinary Nurse to jewellery girl because needs must. I have succumbed to trying to claim benefits and let me tell you, the information doesn’t come freely and you have to ask about and rely on people who have been through a similar situation to give you a guiding hand. I’m living back home with my Mam and we are surviving solely on her wage.

Anyhoo, who am I? Well, I am that girl! I am a big animal lover, I love the outdoors, I’m an artist, published twice I’ll have you know, I have been a part of amnesty international since I was 15 years old, campaigning for human rights, I love music and the arts, I’m very much a giver if I do say so myself and recently have discovered that I am actually extremely hard on myself and should maybe care for myself the way that I care for others. What else can I tell you, my favourite colour is blue, I was quite partial to a soupçon of Prosecco before I became ill, I love people, I love life when it’s not dealing me a shitty hand, I’m an ordinary type of being, not that special, often overlooked but if this can happen to me, it can happen to anybody. I’m hoping this is going to be quite cathartic for me but I’m also hoping that anyone reading this can relate and seek comfort that they’re not alone. Maybe someone who is possibly feeling exactly the same way as I am, maybe I can even make them laugh and smile, who knows. There is no such thing as an ordinary day in my life, what’s a normal day? There’s never been a normal day, even before the accident, there’s always a story to be told and nothing is ever straightforward with me! Behind the laughs and the smiles and the terribly dark humour, there is also sorrow, sadness and pain. The little Miss “Fix It” the “go to” girl, the one that’s always there to dig you out of a hole, is now that girl herself and believe you me, this crown doesn’t sit comfortably upon my head. I’m the girl that kept knocking on Heavens gate but St. Peter was either out shopping at Aldi or hiding behind the sofa whispering, don’t let that nutter in! I want to participate in life again and no one is going to stop me from doing that, there’s days I need a note from my Mam to say my P.E kit is in the wash but there are also days where I can write my first blog. Life is for living and once I’m off this spectators bench and back in the mix, that’s exactly what I intend to do!

As Steve Tyler the rubber lipped rock god himself once said, life’s a journey not a destination ….