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 :)