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 ….