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