Anniversary Day : 70% complete

Firstly my up-most apologies for leaving such a massive time between my last post and this one, I had been meaning to do a big update for weeks but with work going so well (and subsequently me working more and thus being tired a hell of a lot of the time!) its basically slipped past me or I have lacked the required energy to do anything. So with my minor “The Sun style” apology out of the way* lets get on with the update.

I am gonna attempt to keep this in a somewhat chronological order as that seems to make sense to me. Basically when I last left my avid readers I had just returned to work (yay!) but in a thoroughly George RR Martin way I left you hanging by a thread as to what actually went down from there onwards.

I've basically gone from around 8-12 hours a week and no responsibility to slowly working my way back to my old role of being a shift manager and only being about 5-6 hours off a normal full time week for someone in my position. I was very much like a lost little lamb for the first few weeks and then thanks to the familiarity of my job (its now 7+ years for me) and my workmates/customers I came back out of my shell and rediscovered some much needed confidence and more importantly a large part of the person I thought had died that fateful day of my rupture.

Above is my wall planner, the green dots are work days, as you can see they have increased a lot!

I know that may sound a bit OTT to someone who has not experienced a brain injury, its hard to explain how disconnected you feel with your own thoughts and body post injury. Its like waking up one day and discovering that everything you ever knew or did has been experienced by a totally different person. You remember large parts of that person and those experiences and yet it still doesn't feel like you. Its a thoroughly confusing thing to even understand yourself, let alone explain to someone else. But I digress, thanks to work I have begun to rediscover a lot of myself again which is fantastic. There's still some way to go, and there's still a lot of daily problems (which I will detail later) but overall I cannot be more pleased with myself, and for a perennial self hater such as myself its a bit bizarre to feel pleased and proud of myself but I am.

Another fantastic thing happened for me at work, a few months back (and I did intend to blog about it straight away) my speech therapist from Rehab came in for a social-able beverage with his friend. It was the most amazing feeling for me throughout this whole experience to have someone who helped me back to where I am now come into my workplace and get served by me. He even allowed me a big hug! Even thinking about it now still makes me smile. I got on with a lot of the medical professionals in the Kings Lodge Rehab unit at The Royal Hospital Derby but my speech therapist was the one person I could truly say I bonded with, we have a similar sense of humour and equally impeccable music taste so you could say on my part it was a bit of a bro-mance. But it really hammered home to me that day just how far I have come in such a short time. Even up to the point of surgery I really doubted whether I would be able to go back to work at all, let alone work back up to my old role, and now I am doing both of those things I still cannot quite believe it.

Above is a after and before photo, just to prove that i am getting more beautiful, what a difference a year makes!

My job is a Shift Manager in a fairly busy pub working for a large pub chain (which shall remain nameless) and requires a lot of skills to do well. Its no rocket science mind, but it requires excellent time management, multi-tasking, interpersonal skills and physical strength and endurance. You're basically on your feet all day, dealing with both customers and staff. You manage money, time, products and yourself. And its full of noise, light and people. It is essentially the worst environment for a healing brain to be in, due to the masses of information constantly being bombarded at you all the time and the physical exhaustion the job brings. But I am still managing to do it well again, so once more I'm forced to be proud of myself.

That's not to say it does not have its pitfalls to it. I am left after most shifts in a lot of pain, both physical and mental exhaustion as well. Its difficult to get this point across to people because at work my quality of work has remained high, but for me everyday and shift at work is a big challenge. The main problem is my lack of energy, do not get me wrong compared to a year ago my energy has increased massively but its still nowhere near what I would describe as normal. I think when I say to people that I am tired they just think “hey I've been to work and I am tired too” which is fair enough, but life with a brain injury means most days if you are lucky you start at about 66% energy and that rapidly depletes pretty quickly.

Why? Because of what happened to me, my brain has to try that much harder to do just the simple things. I have noticed that as I get more tired at work, my left side (The side my bleed really shat on) gets really very weak and I feel as if I am going to fall over a lot, which for a 29 year old man is a sad thing to think whilst sober. I also from that have to think a lot about walking, I know that sounds insane but as my energy drops I seriously have to think through walking, its a skill I have learnt since I was a wee nipper (rumours I was born with a beard are untrue!) and yet here I find myself as a grown man having to actively think about walking so I do not fall over. It feels ridiculous to type as a sentence but its true. I also get a lot more headaches from work, which I am assuming is just me over-doing it. So I'm sensible about it now, if I feel faint or especially painful I go take a breather and then try to go about things a little slower if possible, however due to the nature of my profession its somewhat difficult sometimes. I am however determined to not give up, I love my job most of the time, I am a type of person that thrives on personal contact with people and it turns out I'm so good at my job in the first place that even after having a large bleed in the brain and subsequently brain surgery I can still do my job pretty well. Thats nice.

So a lot of my time now requires extensive energy management, I'm as bad as a iPhone for rapid battery level dropping, but it's something I am very much getting used to. That said everything in my life is pretty good at the moment something I never thought I would achieve again, I have a good social life again, I'm pretty much back at work full time, I'm losing some much needed weight, regaining self confidence, and beginning to trust my brain again. I'm still in a rich vein of musical creativity too and I fully intend to finish an album of music before the year is through. So everything is really good.

As I type this now, today is in fact my “Anni-versary” something that brain aneurysm survivors tend to use as a phrase to celebrate the fateful day it all changed. My rupture took place pretty much a year to the day today, in that time I've been through so much (most of it detailed in this blog) and whilst I would wish I could have learnt a lot of these lessons in a different less painful manner, still I am pleased I can say I have taken something good from this whole experience. Its insane when I try to think about it all because its all both a mixture of yesterday and a lifetime ago, but I remind myself its been just a year.

And what a year its been, I'm going to have to work hard to top it! In a year I have re-learnt how to talk properly, re-learnt a lot of my cognitive functions, gone from having to actually write what day it is to know what day it is, having brain surgery, relearning how to play guitar and watched Man Utd go from a bit rubbish to a bit less rubbish (can't have it all!) so overall i'm pretty pleased.

My blog title refers to “70% complete” which is a nod to rehab (where my journey really began) and in rehab one of the (I'm assuming) psychological techniques they use to measure you is to ask on a scale of 0-100 where you feel you are in your rehabilitation. 0 being not fixed at all, 100 being back to normal. I always hovered around the 50% or so line as though I rapidly improved in rehab I still felt very broken then, mainly because A) I knew so little about my condition and B) Did not know how they would “Fix me”. I'm pleased to say I now feel around about 70% complete, which is an improvement from before. I think the remaining 30% will come when I get the all-clear of being AVM free and when my energy levels start to get back to normal.

I really did not know how I would feel today, I was not expecting some kind of revelation nor total sadness, perhaps a mixture of both. Mostly it just feels like a normal day with a bit of extra celebration thrown in too, and that's just fine with me. Here's to many more normal days to come! One good thing about hitting the 1 year mark is that my re-bleed chances start to drop down to the base rate (3-4% ish a year I think) whilst its no exact science it is reassuring to now that I can be a little less scared now.

Finally I would like to thank from the bottom of my heart ALL the people who managed to get me to this point today, its been an incredibly tough journey, the hardest one of my life but I do know I would not have been able to get here now without everyone's help, support and love. So thank you, I would like to think you all know who you are, but if you think “Did I help?” chances are you did so thank you!

That's about all for me for now. Now turn this bad boy up!

*A sun style apology is generally printed in exceptionally small font on the the bottom of the page

Back to Work, Back to Normal?

So I have been a little quiet between my treatment post and now and for good reason, I have officially returned to work! Something that even as recently as March I really doubted I would physically/mentally would be able to do! It feels like a massive step forward, i'm not gonna lie its been super tough (as I knew it would be) but it certainly feels like a fear beaten or rather beaten back (its still there a bit) as it is the scene of the crime for my rupture.

Above is an artists impression of my first shift back

Its probably been the most mentally tough thing I have had to deal with for a long time, I was VERY nervous for my first shift back as my confidence in both my body and brain is still at an all time low. Pleased to say that my doubt in myself was unfounded, I did pretty good and received compliments from my fellow managers as to how well I am doing which is really nice and good for my confidence. To be fair even I didn't know what I would be like at work, so for my fellow workers I guess that was two fold!

I have suffered a lot of what is called Neuro-fatigue lately which if you want a better explanation of head here: http://www.braininjury-explanation.com/unseen-consequenses-of-brain-injury/neurofatigue

Its essentially feeling exhausted constantly due to your brain having to work that much harder to just do normal everyday things. It's difficult but due to feeling it a lot previously (when I was in hospital and especially when I first got out) its something I am aware of and am used to.

Sorry Dolly i'm not yet ready to work 9-5

I've now completed 5 small shifts back, all of which have left me dead on my feet afterwards but I have still enjoyed it immensely. If there is one (well theres many) over-riding bad thing about my type of injury its a feeling of disconnection with your fellow people, not just because of the cognitive/emotional difficulties it has given me, you suddenly find yourself feeling somewhat sub-human (or I have) because of your injury. I know I have always been a bit of an odd-ball which i'm cool with, but to feel less than human is a horrible feeling. I know its fairly irrational, silly even, but it still resides there unfortunately.

Between returning back to work, relearning how to make music and subsequently making said music I have again started to feel human again. I would not go as far to say normal, but more like the me that I was pre-injury, which is a confusing mixture of happiness and sadness of what I really was like. My wit and humour (described by others may I add) is still there but its just not quite as rapid fire as it used to be, which saddens me but hopefully one day my old noggin might repair itself enough to compensate. I still mourn for the old me, I still get very upset at all I have lost but every little gain I make now I appreciate that much more. Every little step back to becoming something resembling what I was is a major victory for me, and I know I enjoy the simple things much more than I did before, probably because of the flirtation with death.

This is NOT what my social life is like anymore (or ever!)

Thankfully relearning my music has been amazing for getting a lot of these frustrations and feelings out in a form I can understand and relate to parts of me. A feeling of emotional isolation is somewhat commonplace in AVM survivors (especially ones I have spoken to) which all things considered makes total sense, you've been put through a horrific mental episode and then asked to get back on with things which I guess nicely brings me to my next point.

Please note this is not aimed at any one person, but its a point I feel I must make just to get it out of my system

Someone tried to tell me the other day that "you can't use that brain injury excuse much longer" like now I'm out of the danger-zone (mostly) I'm all healed. It made me laugh how little they could understand of my situation, so I had a mental rant against them and made a mini list of what i would like back which you can see below:

1) When my peripheral vision returns

2) When my fatigue stops,

3) When my left side feels like it's part of my body again

4) When my mind returns to something resembling what it was before

I will happily drop my "brain injury excuse" until then I will use my "excuse" and wear it like the badge of honour it is. I'm a bloody survivor, no one will take that away from me. Until that day happens, I will understand and try to make others understand.

Which brings me to a slightly different but related point, some people have said I am obsessed with my AVM, which I am quite happy to admit I am. I feel if I was not it would be a dereliction of care to myself, but keeping with my new feeling of rather than getting angry I feel I should try to help make people understand, love is better than hate right?

So I mentally came up with a little analogy to try to explain the effect an AVM has on you mentally so people could understand.

So imagine someone real close to you, whom you have been friends with your whole life, someone who has shared your hopes, your dreams, your successes, your good times, your bad times, literally every emotion or memory you have ever had turns around one day and tries very hard to kill you?

You remember the attempt quite well, you will never forget that initial pain because it was that painful, the next weeks you have no memory of, just flashes here and there. You know something incredibly bad happened because you remember your confusing painstaking rehab process. You remember having speech therapy because at one point you could not talk. You remember the physical therapy because your left side suffered so much. You remember the effect it had on others because its written on their faces everytime you've seen them since. Even if you don't remember everything, the attacker handily left you with physical and cognitive reminders so you could remember it.

So what happens next? Instead of your attacker getting righteously locked away as far from you as possible, instead it gets locked inside of you, silently awaiting its next moment to strike. You are left with full knowledge of this, that's why its called a “ticking time bomb” you know that potentially even the most harmless of things you do could cause your attacker to have another go, even when you're on the fucking toilet (no man should die on the loo!) you know that the attacker is increasingly likely to strike again within one year of its first attempt, you know that you have little control over any of it, other than trying to live as well as you can so the attacker does not strike again. You are relatively young, you want to live but inside there is an inertia crossed with a paralysis of “Is today the day?” “If I do that will it kill me?” but still you try to live your life and get as much enjoyment out of things as you can because until the attacker is gone you truly do not know how long you have left. That my friends is what life is like for me (and probably many others I imagine) with an AVM.

Above is a man who DID die on a loo, not from an AVM though, poor bugger

Eek, I feel bad if I left things there, but I really needed to get all of that out of my head and written down. I would like to add in terms of recovery I continue to improve, perhaps not at the rate I would like but I am fully aware that my recovery will be measured more in years than months. I still suffer day to day with headaches, confusion and a terrible short term memory but I am beginning to be less harsh on myself about things. I know I am doing my absolute best and thats all I can really ask of myself, I am really enjoying being back at work and being around people a lot more even if it has made me a slightly less of a crazy cat person. Luckily I still retain the crazy!

My next goal (other than my ongoing attempt at weight loss and trying to write an album) is to slowly increase my working hours and even do a couple of shifts in charge of the pub as I've mostly just been a general bar-steward thus far (I am probably the biggest bar-steward in the world!) so that will be challenging and something I am looking forward to seeing if I can still do that aspect of my job, fingers crossed I can! Other than that I need to concentrate on being happy and alive, I have recently had a tough patch emotionally and mentally no doubt due to being a bit run down, I need to remember that is normal as a result of the beating my brain has taken and the beating my body still takes ha!

Thats all from me for now.

Merci

Adam x

Science Bitch

So I recently had two very good interlinked pieces of news, one a few days ago and one today! I guess I was kinda letting the first one sink in a bit before blogging about it, savouring it like a tasty beverage! But after todays other good piece of news I have decided to blog vomit it all up in one tasty morsel!

So

In the words of my 2^nd favourite Professor (After Brian Cox)

I am set to have my Gamma Knife treatment on the 1^st May 2015! I have struggled to describe my happiness and excitement to people but the best I have come up with to date is “Every Christmas ever all at once”

Its obviously no immediate fix but its the first step in a path to getting my life back finally! I will have to wait 2 years before I will know for sure if its eliminated the evil little swine, but its a step in the right direction. I will have to go up the night before for some pre-op assessment (checking out how Sexy I am I guess?) and then on the day comes the riskiest part of the procedure, another Angiogram. Before checking out the next day post procedure. The procedure itself is pretty quick and relatively painless other than the metal brace that will be screwed into my noggin (I get to temporarily become a rubbish Iron Man) and will probably take up a fair part of my day!

There is a very small risk of having a stroke (no not that stroke you dirty minded fools!) whilst having an angiogram, but I feel confident having already survived one that I can definitely get through number 2! I know I may be risking my luck by typing that, but I don't believe in luck, I believe in Science.

The only other side effect I should expect (other than feeling a bit knocked about for a while) is that because my AVM is located in my Occipital lobe there is a decent chance that my peripheral vision on my right eye may get worse. It has improved considerably from the dark days but its still not normal, but as far as trade offs go its two things I am happy to risk in getting the ticking time bomb out of my head (literally that!)

I am expecting to rest for a couple of weeks and then get back on with things which brings me on to good news No.2

I had another work meeting this morning! Truth be told I was absolutely dreading it, knowing that one of the outcomes could have possibly been a dismissal on medical grounds which would have been pretty devastating for me but totally understandable on works front (they have a business to run)

Delighted to say nothing of the like happened! They are pleased with my progress (my big boss even noted how well I looked in comparison to the previous meeting) and are happy with the plan of going back to light duties ( a couple of little shifts a week at first) around 2 weeks post gamma knife! With the idea of eventually building back up to my normal 45 hour a week workload. Suffice to say I was delighted with the outcome of the meeting.

Don't get me wrong I am a little fearful about going back, it was where my bleed occurred, and I am unsure if I will be able to do the job to a decent standard, but its a personal challenge now to at the very least give it a try! I feel fairly confident that I have not forgotten my skills and that I will physically be able to cope with the work. I know for sure that I am emotionally 100% stronger than I was pre-bleed because after all this how could I not be? I have gone through a veritable hell to get here, and I have no intention of doing nothing other than keep progressing forward. Sure its gonna be a big challenge, probably just as tough as my rehab process has been. But unlike that I am prepared for what is to come, and if I show the same spirit, mental toughness and endeavour that I have up to this point I should get through it. Once you have survived a close brush with death everything else is not as scary as it once was or should be! I know I am a survivor, a warrior and dare I say it pretty fucking bad ass! So hopefully its gonna be another challenge that I will pass :)

Meet Dave (My trip to Sheffield)

Sheffield is a wonderful place known for wonderful beer, a vibrant music scene (Arctic Monkeys guys!) and mainly Yorkshire men! Its also home to the UK's specialist hospital for Gamma Knife

Meet Dave (My trip to Sheffield)

Today I took a rather large step towards getting my AVM (Dave) dealt with as I had my consultation with the lovely staff at the Royal Hallamshire Hospital in Sheffield which is the specialist hospital in the UK for Stereotactic Radiosurgery or Gamma Knife as its also called.

Gamma Knife is essentially targeted radiation to shrink the AVM into something resembling scar tissue over a couple of years, which if sucessful should stop my pesky AVM from bleeding again.

From the website they have it described as:

“The Gamma-Knife is not a knife in the conventional sense, but uses a focused array of intersecting beams of gamma radiation to treat lesions within the brain.  The technique was invented by a Swedishneurosurgeon, Professor Lars Leksell and provides an alternative method of treatment for a number of conditions, for which open neurosurgery may be either not practicable or carry a high risk of complications.

Within the central body of the Gamma Knife there is an array of  separate cobalt sources (201 in the 4C model) (192 in the Perfexion Model) and each of these produces a fine beam of gamma radiation.  The sources are evenly distributed over the surface of the hemispherical source core so that each beam is directed at a common focal spot at the centre.  The resultant intensity of radiation at the focus is extremely high whilst the intensity only a short distance from the focus is very low.  This enables a high dose of radiation to be delivered to the abnormal tissues whilst sparing  the adjacent healthy brain tissue.”

The machine looks something like this 

As well as seeing the hospital I also got to meet my consultant Mr Yianni who seemed a thoroughly pleasant chap and very helpful in answering my questions and queries which turned out to be few due to the extensive research I have carried out around the subject (thankyou Internet!)

The treatment which should hopefully occur within a month (finally!) seems fairly painless with the exception of the metal frame that will be screwed into my head which will look a little bit like this

Mr Yianni also answered some questions on the size and location of my AVM which I had previously had been a little bit in the dark about! Turns out as I thought its located in my Occipital lobe (but had also affected my other brain areas due to the size of my bleed) and is around 3cm or so in size, which is good in the sense that the larger it is the worse it is. I also got to see the images from my angiogram that had taken place in December, which I had seen in real time whilst the procedure was under way (seeing the inside of your brain in real time is WEIRD!) but had not the chance since!

To explain the picture a little, the large snake like bit is a “feeding artery” and the large black blob is the Nidus of the AVM, which is basically the nasty tangled bits that cause all the problems!

                     Above is the inside of my bloody brain, or rather an X-ray showing "Dave" in all of his tangled glory, the evil little shitbag.

Gamma knife is the safest way of removing an AVM, but like any procedure involving the big pink mass of flesh it involves risks which they outlined to me. The benefits obviously massively outweigh the risks, as to leave it untreated would essentially be a case of when it would re-bleed rather than if it would re-bleed

The main risks involve having an angiogram before my gamma knife procedure, which leaves me at risk of a stroke during the angiogram. An angiogram is basically where they insert a tube into my groin (into an artery) and then inject a dye which is then carried into the brain and gives them a much better picture of the blood vessels inside which they see through an X-Ray.

A better explanation is:

“An angiogram or arteriogram is an X-ray test that uses dye to demonstrate the arteries. Arteries are invisible to X-ray so the only way they can be seen is by filling them with dye. The correct name for the dye is 'contrast', and it is the iodine it contains that is visible on X-ray.”

Its a little uncomfortable, but no biggie! There is some strange sensations as the dye gets injected (like a reverse shot) as the warmth spreads through the blood vessels, which is a little strange but not too bad. The worst part is afterwards as you have to stay still for 4 hours whilst the wound closes up.

The other risk is that the gamma knife could cause further damage to my occipital lobe, which as I discovered today is still far from recovered. I had thought my peripheral vision was pretty well recovered, or maybe I had just got used to it being poor, but as I discovered when they did a visual field test its still pretty bad. The Consultant could not put an exact percentage chance of It getting worse, but said it was fairly likely but that it should also return to normal (Well my new “normal”) after a couple of months, which I am pretty cool with. Risks and benefits and all that, its worth being a little bit blind in my peripheral vision if it means the horrible little bastard gets obliterated!

I have also chosen to now call my AVM Dave in “honour” of our current incumbent Prime Minister David Cameron (Prime Minister is a nice way of saying Grand Shitbag) as its much like the current PM in that I really wanna see it gone ASAP, but unlike Big Dave I will have to wait a little longer to see it go.

They estimate around 2 years or so before its properly gone, which they will confirm through a further Angiogram, which whilst annoying in the respect that it will still be hanging over me a little bit, its the safest option!

Even with that in mind, I am really really really really really looking forward to getting my life back in my own hands. The consultant reckons if it all goes well I can return back to work around 2 weeks or so post gamma which is nice, as much as it sometimes drove me up the wall I really enjoy working there. And it will bring back routine, human contact and further cognitive challenges that my life has severely lacked since this all happened.

I would be lying if I said I was not a little fearful at going back, as its the scene of the crime in the sense of that it is where my bleed occurred.

BUT and its a big BUT

As I have learnt on this journey, fears are there to be confronted and to challenge you and mainly to be overcame. Its something I look forward with relish to taking on :)

Thats about all for now, i'm gonna have me a beer!

We are strangers to ourselves

Today's exciting instalment is a sorta sad one (to an extent) but I feel honesty is something I certainly must bring in documenting my journey.

It is a journey that has been full of ups and downs, which has honestly been the biggest struggle in my life, but as I approach my Consultation at Sheffield Hallam hospital (Wednesday 25th) about my Stereotactic Surgery, I think its a good time to remind myself how far I have come mentally, or not in some cases.

I have never dealt with change very well in life, its one of my many personality faults/traits, which has progressed deep into my adult life.

The Oxford dictionary defines change as:

“Make or become different”

Which is certainly something that I can relate to in my journey with my brain injury.

The earliest memory I can currently recall of change is a rather silly one. I had a pair of favourite trainers as a young lad (Pink, yes Pink!!) ones that I was convinced helped me run faster, they were just cheap ones from Shoezone in Tamworth (a long gone budget shop) with nothing particularly special about them. But I bloody loved those trainers, I played out in them everyday, whether football (in a car park, those were the days!) or just Accy 1-2-3 (a council estate version of hide and seek) or riding my bike down ridiculously steep hills I used them faithful pink/purple trainers. I can distinctly remember being devastated when they had to be thrown out due to being totally wrecked by too much wear! More so when me and my Ma went back to the shop to find they no longer stocked the mythical trainers, how the hell was I gonna run fast anymore?!

That is my earliest memory I can recall at this point of change, but why bring up this non interesting tale of change you ask? (or not ask)

Because if there is one thing this journey has been about thus far it is change.

Remember change is to “Make or become different” and this continues even now, and will until the end of my days on this spinning rock in the cosmos I assume. I know that further change is ahead of me in the next year or so and I immediately was/am terrified of the prospect, but why?

I am a man of habit, as proved by my many years of relentless smoking/partying and general disregard for my own health (luckily something I have changed in the past couple of years or so)
                                      

Pictured above is me in my cooler more care free days! Ironically i have changed a lot since then!

I abhor change, I really bloody do. I like order and habit. It brings a solid base to my life that I have never quite been able to replicate in any other way. It brings comfort, peace and ease to my mind. I know big change is a coming to my life soon and still my first immediate reaction was to fear it straight away, rather than embrace it, but in a sense the human body is constantly changing mostly without your own knowledge. Writing this blog reminded me of this interesting fact on the human skin.

“Throughout your life, your skin will change constantly, for better or worse. In fact, your skin will regenerate itself approximately every 27 days “

So in a sense the outer external husk of a human body is regenerated or changed every 27 days. So I have been living with change my whole life without ever really noticing it. But internally, or rather emotionally, its not every 27 days that you get a new you!

There are these pesky things called memories, which as humans we attach importance and emotion to, even to the point of thinking that there is not a chance of making new memories to replace these old ones.

Yes, you read that correctly, your brain actually replaces memories http://www.thedailybeast.com/articles/2015/03/21/how-your-brain-deletes-trauma.html

“The process of recall causes people to lose other memories, meaning that our attempts to remember certain things lead to the forgetting of others.”

So I guess Homer was right all along 

Which means my avoidance of change is a silly thing really, change is as inevitable as death, taxes and my love of Paul Scholes.

Pictured above is probably the best footballer of his generation Paul Scholes

Why fight change? why fight against the current of the sea of change? I have no bloody clue why I do, but I do know that slowly but surely I am beginning to get better at not fighting it and embracing what happens and trying to make the best of a bad hand.

At probably my lowest point in my diary (Wednesday 22nd October 2014) I wrote:

“I hope one day I will recover from this, but I can't see it happening. I have lost hope. I have spent so much of my life fighting/struggling that I don't know if I have any fight left in me. I feel broken!”

I still feel a bit broken to this day which is natural as my brain is still a long way from being fixed, but I have changed considerably since that day. I have got stronger, emotionally and mentally. I have so much more fight and fire in my belly (and its a big bloody belly!) that its hard to see the person who wrote that anymore.

And that is the positive thing of my old friend change, which is to “Make or become different” there is always the possibility that change can be a good thing, so I guess I better start embracing it!

Deficits

Deficits

If you live in the UK and pay a small amount of attention to the news you have probably heard the word “Deficit” quite a lot recently as our overlords begin to crank up the rhetoric with the general election campaigning beginning in earnest.

Above is an artists impression of David Cameron when he's not wearing his fleshy man skin

Today's post concerns the deficits I have suffered since that fateful day way back in August, which already feels like a confusing mixture of a lifetime ago and yesterday, probably because its burnt into my mind much like Ryan Giggs beautiful run against Arsenal in 1999.

As I have previously explained, the initial weeks after my bleed are to me mostly lost in the mists of time! Its kinda like a drunk night out in the sense that I know something major happened but I have no memory of it, But in a sense I do know what happened, obviously because my memory has massively improved from its all time low of 30 seconds, but also because my bleed left me with deficits

The word Deficit is defined as:

The amount by which expenses exceed income or costs outstrip revenues. Deficit essentially refers to the difference between cash inflows and outflows. It is generally prefixed by another term to refer to a specific situation - trade deficit or budget deficit, for example. Deficit is the opposite of "surplus" and is synonymous with shortfall or loss.

The last sentence is the most relevant part really, Deficit is the opposite of "surplus" and is synonymous with shortfall or loss.

The medical terminology for my bleed is described as a “Left Occipital Arterio Venous Aneurysm intercranial haemorrhage" Catchy huh?

Which in non medical speech means I suffered a large bleed in the Occipital region of the brain

As the below image shows the occipital region primarily controls vision but I assume because my bleed was so large it also effected other regions too!

Those other areas for me were my Temporal lobe (I could not talk at one point, 30 second memory, was at least 15.8% more bastard) and my Cerebellum (rubbish balance, co-ordination) and my Parietal lobe (also not being able to talk, lack of sensation, could not read!)

For the most part a lot of these issues have mostly cleared up, but some have not, these I describe as my deficits

Left side

Lack of spatial awareness of my left sided limbs: This is probably the most difficult to describe and understand, its not that I have not got sensation in my left side, I do (luckily!) but its like my left side is no longer a part of me anymore. When I am carrying things in my left hand, I can feel them there but I have to visually check its still there, otherwise it feels like in my brain that its no longer in my hand, its similar for my leg and walking, it kinda feels like my leg is not there sometimes

The Doctor at the hospital explained it to me as you have Neuron receptors in your limbs which send a signal to your brain as to where your limb is in relation to space, for the most part for me on my left side this signal is not being received or is not being understood.

Tiredness:

As I am sure a lot of stroke/AVM survivors understand, the tiredness aspect post bleed is probably the worst after effect from the incident. Its not like missing a good nights sleep (which I could do quite regularly for work!) but its like being in a state of constant zero energy! It has improved a bit since my bleed but its still nowhere like I was pre-bleed, where I could make it through a busy 10-12 hour shift on no sleep with a lot of coffee and energy drinks! Initially on my release from hospital I could do very little other than occasionally sleep and sit on the sofa a lot! I literally could not muster the energy to even walk to the shop, which when I did would wipe me out for the rest of the day! It is/was both a physical and mental ordeal, where I could not physically nor mentally have the energy to do things, even simple things like trying to concentrate to watch a TV show or football would prove to be too mentally taxing to the point of needing to either stop or go nap! I am pleased to say it has slowly improved, I can now make it to the shop, I can now watch a full 90 minutes of football and I am working to improve my overall fitness to hopefully one day make a full return to work! Speaking to a lot of other survivors it does slowly improve over the years (which I am hopeful for!)

Cognition

This is probably the most emotionally challenging deficit for me, It was not like I was a future Physicist in the making

The above photo is not me, i repeat not me! Its Professor Brian Cox!

but I was a fairly bright bloke more than capable of running shifts in a busy pub and doing a pretty good job of it too! But my bleed really affected my cognitive ability! Simple sums/problems would bewilder me, even adding up products in a shop and having a general idea of what it would come to was too much! It for a long time really upset me, I did some cognitive rehab work in The Royal , but I found it far too distressful to do mainly because I had too much expectation of what my brain should be able to do still! In my mind I was very much like “I went to university and did some pretty tough maths/physics there and now I can't add up 99p and 50p?”

And I found concentrating really bloody hard!

But over time I have learnt to come to terms with the fact that I was/I am cognitively impaired, it was not my fault what happened and now I just gotta make the best out of a bad hand! I think for a long time it was mostly a trust issue, I felt I could no longer trust my brain was giving me the right answers, I still have that to an extent but I no longer let it bother me too much. If I am wrong, I am wrong! There are much bigger issues to concern myself with. I swallow my pride and get help where I need it (mostly from my best mate/life partner Benjamin) and just get along with things!

Headaches/Back pain

I still get a lot of headaches and back pain but way less than what I used to do which initially was pretty much all day long! It used to be pretty fearful for me, especially as an indicator of a bleed is a big bloody headache! But since my GP upgraded me from the frankly useless Paracetamol (the Nick Clegg of the painkiller world) to the wondrous Codeine (the Noam Chomsky of painkillers) its a lot more in control! The headaches are down to (so the Docs say) the immense shit-fest (my wording) my brain went under from the bleed and the pressure being slowly being released from the brain as the blood gets reabsorbed back into my body. The back pain mystified me and the docs for a long time, but speaking to other survivors its a common thing, I was in the dark until recently somebody who read my blog explained it to me as this:

“By the way, the back pain you described is from the chemical toxicity of blood as it breaks down and circulates through the cerebral spinal fluid. “

Which makes sense to me!

Until next time, as ever thanks for reading, and a big shout out to everyone who has read this blog/offered encouragement and kind words, you are all bloody diamonds!

Big love x

Loaded Gun

Today's post is on what I like to call the “loaded Gun effect” which is probably the biggest psychological challenge I have faced since being diagnosed with an AVM

To explain a little better I will go into a little more detail on AVM's in general.

Effectively an AVM is a weakened or poorly formed collection of blood vessels between arteries and veins. These vessels are particularly important for bringing the pressure of your blood down, before it is sent back to the heart to be pumped round again.

The following images are swiped from http://www.strokeassociation.org/STROKEORG/AboutStroke/TypesofStroke/HemorrhagicBleeds/What-Is-an-Arteriovenous-Malformation-AVM_UCM_310099_Article.jsp

The following explanation is also swiped from the same site!

Normally, arteries carry blood containing oxygen from the heart to the brain, and veins carry blood with less oxygen away from the brain and back to the heart. When an arteriovenous malformation (AVM) occurs, a tangle of blood vessels in the brain or on its surface bypasses normal brain tissue and directly diverts blood from the arteries to the veins.

As someone who has seen a man made version of an AVM its clearly a bad thing

AVM or Spaghetti Junction in Birmingham, You decide!

So now we know what an AVM is next I would like to explain my "loaded Gun effect theory"

Its been the devil on my shoulder ever since I was conscious and well enough to understand my diagnosis!

The idea of my AVM re-rupturing again absolutely terrifies me, I was lucky enough to survive my first rupture but would/could I survive a second?

Again from the same site

The risk of recurrent intracranial bleeding is slightly higher for a short time after the first bleed. In two studies, the risk during the first year after initial bleeding was 6 percent and then dropped to the baseline rate. In another study, the risk of recurrence during the first year was 17.9 percent. The risk of recurrent bleeding may be even higher in the first year after the second bleed and has been reported to be 25 percent during that year. People who are between 11 to 35 years old and who have an AVM are at a slightly higher risk of bleeding.

So to break it down in my first year post bleed I am much more likely to have a second bleed! This risk over time slowly goes down which is comforting, but its still meant I have been left in a state of near constant fear and terror since I learnt this fact. The chance of this is somewhere between 6-17.9%

Minor headaches after a traumatic brain injury such as mine are fairly normal, in hospital they said this was the brain healing itself, as well as the pressure being slowly released from the brain. Because my bleed was so large this took a long bloody time, I still suffer headaches most days but this is being controlled with medication and rest mostly.

Psychologically this has been the toughest thing for me, always being in an element of doubt whether its a normal headache or one I should be particularly concerned about, its been very much like having a loaded gun to your head! Every little fizz, minor pain, major pain has led me to instantly think “Oh Fuck, its going again” which I can assure you is not good for your mental health!

Over time I have become more and more comfortable with it, initially I was so terrified of being left alone, especially after being in hospital for so long. Whether you like it or not you become institutionalised, it becomes a safe place! On my release back in to the big wide world I had to quickly deal with not being in a safe place any more, which looking back was tough, but as well the fear was a little silly and illogical, just because I was in hospital did not mean I was any more likely to survive a re-bleed, although it would be useful to already be there!

The fear manifested itself in keeping me locked in doors for a time, even to the point of being too scared to leave individual rooms, I am much better with it now, I had no choice but to come to a form of peace with it really. I still get a bit fearful of walking around outside but that is more because I do not want to fall over and hurt my big beautiful mess of a brain more than what it already is hurt!

But its always there whispering in my ear “Is today the day?” “Dont do that, you'll die” and such forth, its really affected my already destroyed sleep pattern (which was already terrible due to years of bar work/partying!)

Above is an artists impression of my sleep pattern

But over time like much of my experience with my bleed/AVM I have begun to form some peace with it. I know I have done everything in my power to keep myself alive, i have barely drank, not headbanged, done much more exercise and followed my doctors orders in terms of my meds and general well-being, so its out of my hands now, and I think that's the core of the issue really if I am honest. I no longer feel my fate is in my own hands, its down to pure dumb luck again but ain't life always been like that really? I guess it has really!

Above is a man who puts his  own survival down to dumb luck as well, I think its his love of whisky, rock and roll and his bass guitar personally (in which case hopefully I will be ok too!)

A Beginning

Have you ever contemplated how incredibly lucky as a species we are to be alive? Obviously dependent on your belief system you may have a different view to me as to how the universe came into being (thats fine, a belief is just that, something you believe) but I choose to believe sciences current theory of the big bang.

From this we know that if the earth had been a few miles closer or further away from the sun, life as we know it would not exist, just a few degrees warmer or colder and we would never had been given the chance to evolve from the primordial soup from whence we came.

Scary huh? Or an example of how incredibly lucky we are to be alive. Forget the wars, diseases, poverty and species higher on the food chain than us. Our entire existence comes down to some pure dumb luck billions of years ago (if you so believe) that gave us all the amazingly lucky chance of life!

Have you ever seriously contemplated not existing? I don't mean in a depressive, suicidal way, its pretty hard to contemplate non existence right? Our brains are the life blood of our bodies, the input/output for the human machine. They process masses of information billions of times in our lifespan, mostly without us even realising. They have an in built survival mechanism, which usually manifests itself as fear. Fear is healthy, its a survival mechanism from our early days on this earth when we were not the top of the food chain.

As far as we know the human brain is the most complex piece of biological machinery in the known universe. This next bit is swiped from Wikipedia

“In a typical human, the cerebral cortex (the largest part) is estimated to contain 15–33 billion neurons,[1] each connected by synapses to several thousand other neurons. These neurons communicate with one another by means of long protoplasmic fibers called axons, which carry trains of signal pulses called action potentials to distant parts of the brain or body targeting specific recipient cells.¹

A 3 pound or so mass of flesh, that is our key to existence in this world.

Recently (August 2014) I suffered an extensive brain injury from a birth defect called an AVM

http://www.strokeassociation.org/STROKEORG/AboutStroke/TypesofStroke/HemorrhagicBleeds/What-Is-an-Arteriovenous-Malformation-AVM_UCM_310099_Article.jsp

I survived by around 10%, not without some major complications mind, but I am alive that's the main thing!

Through this blog I hope to document my recovery and explain my story. Mainly in the hope that anyone else that suffers from this terrible affliction feels a little less alone in all of this! As well as as that It's going to serve as a form of therapy so that I can hopefully learn to type with two hands again, and improve my concentration and cognitive abilites. Something that my bleed has robbed from me for a long time

The person I was before my bleed was a fairly regular 28 year old man. I enjoyed football, music, beer, tv, movies, friends and family. The only black mark I could particularly put on myself is that I had perhaps lost my focus in life (in terms of long term goals/happiness) and probably took a lot of things for granted.

That person ceased to be on the 24^th August 2014, I did not die but rather I was reborn into the person I am today. I can remember much of the day but its still a little hazy in parts. From memory it was just a fairly standard day at work.

I do know in the weeks leading to that date I had been suffering panic attacks fairly regularly, mild ones but scary never the less.

Looking back in hindsight it was probably my brain giving me a gentle warning, somethings not right here man!

But it was not a warning I took on board.

There is a certain inevitability with AVM's, most people with them either rupture at a young age (which is the best time in terms of recovery) or they are found post mortem.

Brain AVMs occur in less than 1 percent of the general population. It’s estimated that about one in 200–500 people may have an AVM. AVMs are more common in males than in females.²

So in one sense I was both incredibly lucky to exist in the first place, but also terribly unlucky to have an AVM and also an AVM that ruptured!

I can remember the rupture, it was the most terrible pain I have ever felt, and i've done some incredibly dumb stuff in my life that have also been pretty painful!

A top 5 would run something like this:

1. AVM Rupture
2. The time I sliced my hand open drunkenly dueling a pair of scissors with a mop in university halls 
   
3. The time my brother dropped a storm drain on my hand and later all my fingernails fell off
4. Numerous Hangovers
5. The Time Man City won the league (Aguuuuuueerrrrooooo!)

To describe the pain is pretty difficult it was like a flash of hot pain (I thought I had been stabbed) in the back of my head. My bleed was rather large in the occipital region (vision mostly) but also affected my speech (which went later in hospital) and memory, I literally had a 30 second memory recall!

I can't remember much of the initial hospital experience, which is the clever brains way of protecting itself, if somethings too traumatic it shuts down and protects itself or so i am told. Much of my time in Queens Hospital Nottingham was later relayed to me, what I can remember are like small flashes but it still kinda feels like it happened to someone else. I was lucky to be found  when the bleed occured by my work colleague  and all round awesome human Craig Western who quickly called an ambulance when he realised it was not just a bad headache! 

Above is a photo i have no memory of being taken (like much of my twenties!)

The comedy highlights of my hospital experience include:

Singing “Staying Alive” by the beegees in the back of the ambulance

Waking up one evening, carefully taking off all my monitoring equipment and walking into the next ward and peeing into a sink

Constantly accusing various Nurses of stealing my Morphine

Sometime in September I got moved into a rehab ward in Derby (kings lodge) where they unfortunately did not make me a King despite my many protestations!

It was in this period that the seriousness of my condition truly began to hit home, I was recovering very quickly at this point but when you are in the eye of the storm its difficult to see the calm waters ahead.

I was constantly frightened, I struggled to sleep (Noisy ward +Fear = no sleep) mainly because I was scared of a re-bleed, my AVM was at that point untreated due to my bleed being so large they did not wanna touch it!

It was easily the worst experience of my life and something that I never thought I would ever recover from.

On Sunday 28^th September I wrote in my diary, the diary that I had to use to keep track of the days and to remember things

“ I think my brain is getting worse! I get confused very easily, hopefully its just the tiredness, my back is now agony most nights! I just wish I could sleep properly (nothing new there!)

I think the fear doesn't help, but I got to stay brave even though I am fucking terrified! I try to re-assure myself that I have got through the most dangerous part, but I am fucking terrified of dying!

Why am I such a wuss?

I hope I ain't like this forever! In some ways I do feel I am getting bettter, I am so so so tired! I am getting minor headaches again but I cant remember if they are like the last ones (When I had the bleed)

I try to reassure myself that the confusion and headaches are down to the tiredness I just feel so so so scared! :(

What a fool i was! 

I later got discharged in October, and it was very much like walking back into the world as a newborn, everything was bright, noisy and very very confusing! I had an early discharge team that helped me assimilate back into normal life, and some wonderful family and friends that provided me with more support and love than i will ever be able to pay them back for!

It took me a while to readjust to the new me, and even longer to accept that the life i had before was forever gone (as was the person i was before the bleed!) but slowly and surely over time i have begun to accept this.

I still have bad days, scared times, days when i can't make it out of bed due to being too tired/painful

I still get easily confused and i still regularly forget to boil the kettle before making a cup of coffee!

In terms of my treatment/recovery i continue to get stronger everyday, I still suffer a lot of deficits from the bleed, but they are lessening in time. My vision is almost back to normal and my speech is 100 times better than what it was (literally could not speak at one point!)

The next step for me is a consultation with the wonderful folk at Sheffield Hallam hospital on the 25th March to begin planning my Stereotactic Surgery which over time (hopefully less than 2 years) should obliterate my AVM and i can return to a relatively normal (ish) life!

Finally:

If you take one thing from reading this dear reader, its not to feel sorrow or compassion for me, its to live your bloody life to the max. Because you truly never know what is round the corner, life is a blessing that we are extremely lucky to have

whether its from the dawn of time  and our amazing evolution into what we are today, we are all very very lucky to be here. So enjoy every moment!

Some useful links:

http://www.strokeassociation.org/STROKEORG/AboutStroke/TypesofStroke/HemorrhagicBleeds/What-Is-an-Arteriovenous-Malformation-AVM_UCM_310099_Article.jsp

http://www.joeniekrofoundation.com/

Finally i would like to give a huge thank you to all my amazing family and friends that have got me this far, theres still some distance to go, but that light at the end of the tunnel is getting brighter (No not that light folks!)

Thanks for reading :)