New Challenges

New Challenges

NB. While this post is intended as more of an official announcement I hope you will be able to see why this is very relevant to aspects of ABI/TBI recovery. I hope you will see the sense in what I am saying and understand why I am doing the things that I am doing.

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It’s been nearly a year since I started. The first blog I posted was online on the 31st of August 2015. It was a spur of the moment thing (though I didn’t realise it at the time, it was exactly six years since the attack that caused the injury took place). I had talked for a long time about starting a blog and detailing my experiences of rehabilitation post-ABI primarily to get into the habit of writing regularly and to try and get noticed as a writer, how I live and deal with the way my ABI has manifested itself in the seven years between when I suffered the injury and in the here and now and finally, I started the blog in the hope that my experiences could be helpful to people, provide them with different ways of thinking about problems that they cannot solve, provide a source of comfort and hope for people who think that life is over after a Brain Injury, I hope that I have managed to do these things.

Before I started this blog I didn’t really know what kind of reception I/it would get. It is always a nerve-wracking experience; expose yourself emotionally to people, allow yourself to be vulnerable. For me though, this kind of revelation has always been easier in the written form. It would take a very particular type of person for me to divulge the kind of information to in the way I have on my blog (which is strange because basically anyone in the world can read this and gain an insight into my mind, thoughts and emotions). It took a long time for me to take action when I was starting the blog. It had been in my minds eye for many a month prior to its beginning. However that is the thing, I think there comes a point where thoughts, plans, organization and talk can only take you so far. There comes a point where you have to bite the bullet, and just do what you need to do. Stop planning, stop organizing, stop talking and do it!

The Truth

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The truth is that as the months have gone on, I have found it difficult to maintain the discipline and motivation to continue writing blogs. This is because any of the reasons for writing it have changed, it’s because I have changed. I have found that the prospect of looking within, examining the self, going over experiences that, quite honestly, I wish I would never have to revisit; these thoughts can make me angry, depressed, sad and really affect my mental health in general. That effect in turn, affects my day-to-day functioning, my sleep pattern, my meal times, my willingness to socialise and the way I engage with my mum and dad. I have come to the conclusion that if I continue to look inwards I will never be able to move forward and look outwards, at the many possibilities that are available in the world, even for people with a disability.

Announcements and Changes

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Even though I said that none of the reasons for writing the blog and that these have remained solid and the main basis for writing my blogs posts, I believe that I neglected one key issue regarding my motivations; writing to get my name out there, to be recognized as a writer and write for the love of writing. There are many other aspects of writing, different platforms and mediums that I love and that I want to explore. The time has come for me to concentrate on those forms and move forwards towards the direction I really want to go in and find the area I want to make a career for myself in.

So here are the real announcements, the 1st of September after a year of blogging, will be my final blog post for a while. I feel that I need to spend some time on making some life changes and changes to my daily routines that will make living independently a more achievable goal. I am currently in the process of making dietary changes and changes to my exercise habits, learning to cook properly and generally how to do all the things we need to do around the house on a daily basis to make living well independently achievable for me. The intention is to spend some time focusing on engraining certain habits; cooking healthy meals myself, keeping a consistent sensible sleep pattern, regular cardiovascular exercise to compensate for the sedentary career choice I have made and focusing on looking outward into the world and what I can achieve in it once I have engrained these habits into my day and composed a healthy, consistent, realistic and sustainable lifestyle.

While I wont be producing original content I will be doing my best to continue with my brain injury advocacy and advocacy for people with disabilities as a whole. To compensate for my lack of content production I will be doing my best to share blog posts written by the other brain injury and disability advocates and the amazing work they are doing. Also, I will still have my Twitter page and my Instagram page available where I will be doing my best to share valuable information with you all. I will also be using these social media platforms to keep you up to date with my own progress. Finally I will announce that I will be continuing my blogging work for Headway Worcester (a much simpler and convenient writing process to fit in with the kind of life changes I am going to be making over the coming months).

Finally, I am going to say this that any I original content I may produce in the future will act as a breath of fresh air. Sometimes you need to look at things from a different perspective to learn more (as I have said in many of my previous posts) and I feel I have distributed all the information I can for now that will be of benefit to you all.

A Note of Thanks

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Finally, to conclude this post, I just want to say a huge thank you to those who have followed me on Twitter, Instagram and on WordPress. I have spoken to many incredible people from all over the world who are going through similar situations who seemed to have gained something from my blog. I feel very bad and apologise profusely to those people that I cannot continue with my blogs. However, I hope that you understand that I cannot continue staying static and standing still in my life living with ABI. The effects of brain Injury never cease, they always seem to be changing and as they do life changes with it and when opportunities arrive to make changes that will benefit your life, as you will all know, that you have to take them.

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I feel incredibly touched at the way the blog has been received and the way people have reacted and that people have found it useful to them and that it has done what I intended it to, even if it was only for a few people. So, to all of you that read and shared my posts, you will have my never-ending gratitude for believing in me and for supporting me. I hope that we will see this through to the end together, that you will read my final two posts as enthusiastically as all the others and find them as helpful or useful or what have you as all the of the ones preceding it. I also hope you will continue to monitor my activities and progress as time goes on and that you will still check in on Twitter and Instagram and help to continue what I started by sharing information and stories about brain injury and help to bring it closer to the forefront of the conversation about healthcare in the UK and worldwide. Thank you so much for all of your unwavering support. You have been what has made this possible!

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Mental Health: What We’re Dealing With (Part 2)

Mental Health: What We’re Dealing With (Part 2)

Just so that people know, this post is directly following on from last week’s post Mental Health: What We’re Dealing With so if you are just starting to read my blog I would advise you to go back to the last few weeks and my writings (ideally Only lessons, Simplifying ABI Recovery, The Importance Of Family, A Cruel World In The UK. I realise that it is a lot of reading but this post is part of a larger discourse so sorry for that). My main aim of the last month or so is to try and get people to understand how we, the ABI patients, in turn making it easier for people to try and understand what it is we live with in day-to-day life. So here comes part 2.

Affecting All Aspects Of Life

Last week I spoke at great lengths regarding the manner of the changes that happen when a brain has been damaged after something like an ABI or TBI. My aim last week was to try and put those changes that are so hard to put into words into a (potentially) real life, everyday situation that people could relate to. I wanted people to see and understand the confusion that occurs after ABI, the lack of familiarity, the feeling of being out of your comfort zone, and most importantly that these changes are not a gradual decline; these changes are foisted upon you in a life changing instant.

I used memory as a subject because everybody has a memory and certain times when they forget things. Memories are a key part of who we are and it is a good way to expand upon the subject of “What We’re Dealing With” because everyone knows that feeling when you suddenly forget something that you know is important, or that frustrating feeling when you know that you know something but you can’t find it amongst the stores of other memories and information, but at least people without an ABI know it’s there to be found and where to find it.

This is the real issue after an ABI; having to learn again where different information is, finding out what information remains, what abilities you have lost and whether anything that has been lost, damaged or changed can be recovered.

Where Last Week Comes In

Last week I spoke about the brain in terms of an organ and likened it to a house, rooms that have different uses and contain different equipment, tools and information. Each room has a specific purpose and which you go to when a particular need or skill has to be accessed out of necessity and I wanted to show that after an ABI or TBI that the rooms have had items moved or swapped around or even removed entirely. The example I gave last week of making a cup of tea and being unable to find the necessary items to make it because everything had been muddled up.

As I said, I used memory as my example because the feeling is a universal one. All of us at some point have had our memory fail us but with the notion that we have all of other cognitive functions to help us retrieve the memory from a well organized fully functioning brain. But what happens when the rest of the functions AREN’T there to compensate? What if the lapse is not a momentary one, but one you have to fight against for the rest of your life? And it’s affecting many different/all areas of your brain?

Deep Rooted Confusion & Anger

The reason that I chose to use an example that everyone (ABI or no ABI) could relate to was to try and give an people an understanding of the next piece of the puzzle, something that not many people will have gone through. That is a complete questioning of who you are post-injury. The effects of the injury go from things such as what makes us who we are on a social level, the stuff that is closer to the surface such as interests, habits, likes and dislikes and so on. However it also goes far deeper, into both physical psychological issues such as emotional impairments, changes in sexual behaviors, cognitive processes, issues with speech vision and of course, physical disabilities.

Now if you can, imagine my memory example from last week and the type of confusion that would cause and think of dealing with that, alongside the issues (which are just a few ways an ABI can manifest itself) I named in the previous paragraph. All of those functions that we relied on, overnight, no longer work at the speed we want them to, in the way we want them to and in a way that we are familiar with. The point I am trying to make (and I may be making it in a rather blunt and heavy handed fashion so I apologise if that is the case) is that all of these changes are happening simultaneously and we have to find ways to deal with and cope with each individual problem while the others are there just below the surface waiting to trip us up as we go.

All of these changes happening at once lead to a deep-rooted confusion as to who are now compared to who we used to be before our injury. This is the other issue that can be often overlooked; we have a basis for comparison. We can look at ourselves before the brain injury and compare who we are now to that previous version of ourselves – the fully functioning person that did not have to deal with or think about any of these problems. For me this caused a huge amount of resentment and anger towards both the person who had inflicted my injury upon me, towards the world and its injustices in general and worst of all resentment towards myself. I resented who I was, what I had become, the unfairness that my livelihood had been taken away and at the time, the early stages of recovery, I thought this was who I was, who I would be for the rest of my days. Alongside these feelings of anger and confusion there are a whole plethora of other emotions and states of mind that came with them: loneliness, fear, nervousness, anxiety (there are many more) all about who I was now compared to who I used to be and how I had changed. When I was around people I used to ask myself: “I know I’ve changed and that I’m different, so they must know it too. What if they hate me? What if they think I’m stupid? What if they don’t love me or don’t want me anymore?”

Looking To The Future

After an ABI very rarely is there a cause for hope straight away. I personally found it extremely difficult to look beyond the moment I was in, the day I was living and experiencing. Basically what we’re dealing with after an a brain injury is a monumental, internal change both mental and physical. In the early stages as you come to terms with the types of changes I have talked about, you realise that the life you led previously is gone and you spend a lot of your days just existing, making it through the day while wallowing in and mourning your losses. However, I need to emphasise that there is a cause for hope. These last two posts have not been the most positive or uplifting ones, I am aware of that. That was not their purpose. The purpose of the last two posts has been to try and help people understand the turmoil and chaos going on inside the brains of ABI patients in the hope that I can, over the next weeks/month post useful information that can help overcome the disorder and internal conflict that can so often boil over over and spill out into the real world. I want to try and help anyone who is reading my blog to try and see that there is a future out there for you and I’m going to try and help you reach for that future and it’s successes and options so you can grab it with both hands.

Mental Health: What We’re Dealing With

Mental Health: What We’re Dealing With

Over the last four weeks, barring any reposts I simply saw as supplying useful information, my posts (Only lessons, Simplifying ABI Recovery, The Importance Of Family & A Cruel World In The UK) have intended to be a sort of guide to steering clear of and warning you of negative influences, environments and the potential negative outcomes of certain ways of thinking. The aim, trying to create something of a guide to controlling aspects of life after an ABI and if you are a patient protecting yourself or protecting the patient if you are a carer from the steep slope that is mental health problems that often manifest themselves during the recovery process.

Things like depression or anxiety, both of which are devastating mental health issues that are taken far too lightly in today’s society, can have catastrophic consequences for anyone let alone for patients post-ABI. In my previous posts I have talked about environment within the home and the exterior influences that can contribute to mental health issues. Over the next few weeks I will be talking about other contributory factors that can supply mental health issues with the fuel they need to really gain momentum. Today’s post will be giving focus to the way an ABI feels for a person who has just suffered one (or how I felt when I first came to and was discharged from hospital) and how that can feel.

This, for me was one of the biggest factors that contributed to issues with depression and anxiety, though it is more of a long term one. After a severe brain injury everything is different. I have tried hard the last few weeks to think of an appropriate metaphor or simile to communicate what living with an ABI is like for people who don’t have one and this is the best I could come up with, so please hear me out.

How Best To Describe Having An ABI To Those Who Don’t: “The House Simile”

Before the injury, your brain is like your house. You know where everything is, every room has its uses and within those rooms there are things that you use, let’s say the kitchen for example. Within the kitchen there is a fridge, a cooker, a sink and all the usual equipment needed for everyday use. But also, there are cupboards that have designated uses: cupboards containing food, drink, pots and pans. Then there are the draws that contain knives, forks, spoons, and chopping boards, also essential equipment but kept separate. Then there is a cupboard that contains things that we don’t use very often; the pasta maker your aunt brought back from Italy as a gift, the super shredder cheese grater bought on a whim and so on, rarely used but still kept in storage for if it is ever needed.

What I am saying is that that the brain is almost compartmentalized: each section (or room for the sake of my simplistic simile) has different places where different things are kept so we can find, retrieve and use them whenever we need to.

Now, imagine that you wake up one morning and enter your kitchen. You go to make yourself a cup of tea with the plan of watching some TV and having a sit down, relaxing for a while. You go to the cupboard to get a cup but upon opening that cupboard instead of cups, you find a pile of papers that are normally kept in the desk draw upstairs in your office. You look through the papers, rummaging until finally at the back of the top shelf you find a chipped, cracked old mug. Once you’ve found the mug, you open the box of tea bags to find it is empty so you struggle through different storage compartments of the kitchen until you find them. Then there is the process of boiling the water, the process seems to take longer than usual, frustratingly longer in fact but the kettle eventually whistles and you make your tea. You normally take sugar but you have abandoned that for now because of the way that your house, with its usual familiarity, set out in a way you know has been so unceremoniously changed and rearranged. You go to the lounge and the sofa has been removed, your bed has been left in its place…

You see what I mean? Imagine if that scenario occurred in real life, most of the rooms and their contents had been swapped around and rearranged. How long would it take you to return all the things to exactly the same place they were before? Not a close position, the EXACT position, it is an impossibility. Imagine in five years time, even when you had returned everything as close to it’s original place as you could, that you were still finding/not finding items that were/weren’t there yesterday, that you had used yesterday but now you cannot find again.

That is the best way I can describe having an ABI to anyone who doesn’t have one. I worked a long time on that simile and I hope that it has made things easier to understand and enabled those without an ABI to see it from a patient’s perspective. As the title suggests, that is what we live with everyday. A lack of familiarity with how our brain works since the injury. If we were to take an example from my own life, the place where I keep certain memories has been damaged. When someone asks me to recall a certain situation, I flick through the memory bank like it’s an old photo album, only to find that some of the pictures that captured precious memories have been removed. “No I don’t remember that occasion” is the response I give. I get a quizzical look from that person that clearly implies a response of stupidity or indifference on my part when really it is just a lack of information on the part of the person asking the question, if you see what I mean?

That Is What We Live With

Each day we, people with ABI’s/TBI’s of all sorts, try to get up and handle the manifestations of our injuries and we do the best we can. It is often forgotten, ignored or simply unknown by some people that these are the type of issues we are dealing with; trying to retrieve information that camouflages itself inside the different compartments of the brain or that has left it completely. During recovery, especially during the early stages of the process, the first day you go downstairs to find that everything has been changed, moved, replaced or removed, the anger, the frustration, the lack of understanding and confusion as to why your brain isn’t working properly is ferocious. I would say though that it takes a while before you’re even aware of the changes. In the first six month of my time at home it was like I was just floating through life in my own little bubble. Totally unaware of myself, the way I was talking, acting or moving. I was totally unaware of other people, their needs or any social codes or conventions. Eventually though, as I said, probably about six months after I arrived home I slowly started to become aware of myself and of the presence of others.

What Is My Point?

The purpose of this post is to help people to understand what it is that they are dealing with and the thought processes and the way the brain changes after something as traumatic as a brain injury. I wanted to try and tell you as accurately as I can what life is like dealing with an injury so that if you are a carer, you can get some kind of insight into how we are feeling and if you are a patient, maybe put how you feel into words a little more accurately than you could have done before. I hope I have managed to do that. As a final point, I would also add that this idea of unfamiliarity, this feeling of isolation,the frustration the anger, the confusion, all of it are the thing that contribute to mental health issues gaining momentum. I believe that if people understand something they are much better prepared to tackle the issue and hopefully find a solution. So I hope that my insights can provide you with some clarity, some idea of what living with a brain injury is like.

Thanks for reading and I hope you keep coming back. Please, join my mailing list here on WordPress and take a look at my Twitter page @ABIblogger for updates on my blogging/writing work and take a look at my Instagram page abi_wordpress_massey on ABI awareness. Thanks again for reading.

 

 

 

 

SHARE: Getting My Act Back Together

Over the past couple of years, I feel as though I’ve let a lot of things slide. The main focus (with my neuropsych) was really on getting myself to not have such a harsh view of myself, and to lighten up on the “Type A” behavior and mindset. That had its advantages, and I did … Continue reading Getting my act back together

View this blog for more great insights on life with an ABI/TBI, he has a lot of good things to say on the subject of life after a brain injury and the work that goes in to try and regain some balance in life throughout the ongoing recovery process.

via Getting my act back together — Broken Brain – Brilliant Mind

Acknowledging Disability

It took me a long time to finally accept the monumental change that had happened in my life. In my past posts on Independence, Health, Employment and Taking Back Control, while being focused on being able to live as an independent adult with our own lives have all had a common theme of acknowledging where our strengths and weaknesses lie. In essence coming to terms with our disabilities.

Coming to terms with having something like brain damage and accepting myself as a disabled person, was a really difficult thing for me to do. However, more than six and a half years have passed since the horrible night I suffered my brain trauma and I can confidently say now, without fear “I am a disabled person with brain damage.”

Now, I used the word “fear” there. I personally think that’s interesting when I consider my brain injury in the grand scheme of things, purely on a human level. I have to then ask and analyse myself (again!) what was it that I was afraid of?

A Short Series Of Questions

So here I have to ask questions to myself, what were the things I feared that made it so difficult for me to admit that I was disabled? Was I afraid that, by admitting to myself and to others that I was disabled, I would be excluding myself from the rest of society? Did I fear rejection, ridicule and prejudice in a society that increasingly seems to be turning a blind eye to the plight of those in need? Where, in this new sense of self that I was coming to terms with, would I fit in? Finally, had I subconsciously adopted an unknown, subconscious prejudice (not vindictive, violent or exploitative, more a feeling of discomfort when in their presence) against “the other”?

A Short Universal Answer

The answer to all of these questions is yes. I realise I may be making myself seem more unlikable to you in admitting that but I feel it is only fair for me to be truthful. I would be doing you a disservice if I made up some weak, halfhearted excuse as opposed to telling you the truth that my fears were based on basic human instincts; the need to fit in, the need to have a place and a role in everyday society, the need to be “normal”. Of course these are things that everybody wants really. They make for an easier life, a life you can float through without analysing, thinking for yourself, challenging or disrupting the natural order of things. What I see when I look at all of those previous questions and the answers I have just given is that the fear that stopped me accepting myself for who I am after my brain injury is one very basic, human fear…

The Fear Of Change

The fear of change is a very basic and, quite honestly, understandable fear. As human beings we like security; we like to know when our next paycheck is coming from, that there is food in the fridge and that we have a job to do when we get up in the morning. It is obvious that this gives us a feeling of safety and purpose each and every day. So when something occurs that has the potential to disrupt that harmony, something that could take away the things we rely on to get us through life feeling contented and secure, it is only natural that we are wary, cautious or afraid of that change.

So when we ourselves are fundamentally changed from the inside to out, the organ that controls our speech, our movement, that voice in our head that help us make decisions, decide what to say or do, the consequences to our cognitive abilities is damaged so that we are (I realise I’m speaking universally here but I’m only speaking from my own experience) an almost completely different person to who we were. That is a terrifying prospect for both patients and their families. That the person you are and that they love will be different from the one that they know, have known for years and that they love and cherish.

I don’t know about anyone else who may be reading this, but I feel as though my brain has been switched with someone else’s since my ABI. I am a totally different person now. Taking on the challenge of recovering from an acquired brain injury is taking a step into the unknown; as I said it feels as though my brain has been witched with someone else’s. It’s like a game of roulette; you never know what number the ball will land on or whose brain you will get.

Carrying on from that, what do we rely on more than our own brains, than ourselves? When someone has suffered a brain injury, not even the best experts and consultants are willing to predict the ramifications and consequences until the patient is fully awake. So for those on the outside, looking at a brain injury patient it’s the fear of the unknown. Not knowing how much of the person that they knew and love they will get back.

What Do We Do?

Fear, we all suffer from just in different ways. When I look at the questions I asked myself earlier (barring the prejudice one), they are all reasonable and similar questions one would ask themselves in other more conventional life changes. For example, if they were moving to a new place, quitting their job to start a new business or getting back into dating after a divorce. Those types of fears are deeply rooted within us; the fear of change and of the unknown.

It’s what I have come to learn. Life itself is an unknown thing, full of change. We can’t control everything all the time and we never know what is waiting for us right around the corner. Whether that is meeting the girl of your dreams in a café on your lunch break for example, or suffering a brain injury on a night out. Life is peaks and troughs. If we can accept that life is an unknown, that it has good and bad elements and if we can embrace the fear that comes with that and confront it head on, we can move forward accepting ourselves for who we are.

I can safely say that I have fully accepted that I am a disabled person. Confronting the fact that life will change and it will throw bad things at you has made me a stronger person. Now that I have suffered my brain injury and have seen what is truly the harsh side of everyday life, because of the strength and the determination it has given me to prove to everyone that disabled people are incredible, brave, valuable and talented, despite the disabilities I have now, I wouldn’t go back to the person I was before.

Brain Injury Recovery – Independent Living

In my post the week before last, I moved on from asking Where Am I Now? am now regarding my brain injury https://lifeafterabraininjurydotorg.wordpress.com/2016/01/28/where-am-i-now/; asking questions like, what are the permanent physical consequences of my injury & how does my injury affect me both socially and domestically? What are my strengths & weaknesses? After I felt I had answered those questions in a sufficient manner, the next step was to highlight the goals that were most important to me. The intention to assess them and look at the potential difficulties I would likely encounter. https://lifeafterabraininjurydotorg.wordpress.com/2016/02/04/brain-injury-recovery-where-do-i-want-to-be/ Then I could think about how I would go about achieving them, the steps that needed to be taken, taking into account the answers to the first question I asked. Following on from last week and the goals I picked out as being most important to me, here is my view on my own situation regarding moving out and living independently.

Getting Out On Our Own

This is something that every adult, young or old, male or female, rich or poor, disabled or fully abled wants as they progress through life; independent living. As you get older and become an adult there are certain things that change in who we are. We develop social lives, a love life, particular interests and hobbies that are our own. We come to the conclusion that we want our own personal space; we do not need to be under the constant watchful eye of a parent. We can look after ourselves, perhaps in a nice, cheap, little one bedroom flat. With some tender love and care and some Ikea furniture, we could definitely make that place our own.

The Considerations & The Struggles

In the paragraph above, I painted a very romantic picture of what living independently is like. What I learned from my own experiences is that there are pretty severe reality checks in store. We hold the kind of romantic vision I described above in our heads. However, what comes with living independently is a series of heavy responsibilities that need to be taken seriously.

There are contracts to be signed, rent to be paid, direct debits to set up, bills to be paid to name just a few and finally, ensuring you are earning/receiving the money to ensure all of the payments can be handled. Also we must consider the fact we have to look after our new abode and we are also depending on ourselves for survival in terms of food, money and all the other necessities involved in life. We also must manage our conditions that have accompanied the ABI. We cannot be under any illusion that we will get to a point where these disabilities will go away completely. However, There may come a time with the right discipline, help and determination that we can get them under control. A position where we control our conditions as opposed to the conditions controlling us. To do that though means being strict in terms of taking the right medication at the right times.

Why I Do Not Live Independently

I have tried on three separate occasions with varying degrees of success to live independently. The main obstacle in this process over the past five years has been the ever-worsening extent of my epilepsy. Here are the ways I have tried to live independently

  • University was, to all extents a success. I achieved a 2:1 (BA) degree despite my ABI with a lot of support from the university and epileptic episodes were kept to a minimum.
  • After university, I went to live in London to pursue my dream of being a writer. Again, epileptic episodes were at a minimum but slightly higher than they were at university, which meant my dad having to come all the way to London once a month to check on how things were going with me.
  • After a year of living in London due to financial reasons as well as health reasons it was necessary to move back to Dorset. Upon my return, I found myself a flat and a job. It was at this point that things took a turn for the worse.

While I was living independently in Dorset, the number of seizures I was having escalated hugely. Being a larger than average young man (around 6,2 and 17.5 stone) I usually end up with a broken bone or a losing some teeth after a fit and living alone put me at huge risk if, for some reason, the fit I was having escalated and my health was put in more jeopardy. With the seizure’s becoming more and more regular and the potential risk to my health while I had one rising, it had become clear that living on my own just wasn’t practical or sensible at the time.

What Did I Learn From My Attempts?

What did I learn? Well, firstly that living alone and having your own space allows you to be who you truly are and it is wonderful to have that kind of freedom and independence. What we should all be aware of though, is what that truly means. Independence means you are doing it for yourself. For people in our type of situation where there could be a crisis or an emergency regarding many things; physical health, mental health, panic or anxiety attacks, it may be a good idea to ensure the place you have chosen to live is not to far away from people you trust who will make every effort to help you.

Secondly, I would say that moving out and taking care of a place of your own is far more complex just in terms of the technicalities and bureaucracy that are involved in making the whole thing official. Sorting out housing contracts, direct debits, council tax and ensuring that the place is right for you depending on your situation are complex issues that can be confusing for anyone, let alone someone who has suffered an ABI. This leads me to number three…

The third thing I learnt follows on directly from number two. I would advise anyone who has suffered an ABI to get someone reliable whom you trust to act as an advocate on your behalf. Or, if it is necessary, take advantage of the help the social services may be able to provide or it may even be a good idea to go and see an attorney who can help guide you through the process and help clear up any misunderstandings so you know exactly what it is you are signing up for. Just to clear up the bureaucracy that is in all those contracts. It is unfortunate, but there will be people out there who may try to take advantage of situations such as ours.

My last Piece Of Advice

Finally, My biggest piece of advice to anyone recovering from an ABI or a disability is to not rush the process. To take your recovery a step at a time and this is one of those steps that should only happen when everything is in place and everything is ready for it to happen. Particularly, only when you are healthy enough for it to happen. That is when you will have the most chance of success.

Where Am I Now?

Hi folks! I am back again after a week or so off due to epilepsy related complications. It would appear that I am becoming resistant to my current medication (Epilim Chrono or Sodium Valproate). I actually had six seizures in the one night last week and would not come out of them so I spent a little time in hospital and have taken some time off as my body becomes accustomed to the new drugs I have been prescribed. So I can only apologise and hope you will understand my absence last week. But now, onwards with the blog and where I left you last we met.

As I mentioned in last weeks post, the process of assessing the self is a difficult one. I have decided to share with you the ways in which I have looked at myself since I took a break over the Christmas period and the conclusions I have come to. This should hopefully give you a better idea of the type of things we need to examine about ourselves when approaching recovery as well as establishing where is it we want to get to and what are the things that are holding us back. Now, as I start with the assessment process, I ask myself what is holding me back? Lets start with the obvious…

My Brain Injury

When I suffered my ABI in August of 2009 my parents were informed that it was very unlikely I would survive. I was admitted to Southampton Hospital with a GCS (Glasgow Coma Scale) of 3 (the worst you can be) after suffering a subdural haematoma, bilateral frontal contusions, and subarachnoid blood in the basal cisterns, a midline shift and multiple skull fractures.

I am extremely lucky to be alive let alone here typing away and talking to all of you fantastic readers. I made a fairly successful recovery and have been very fortunate in terms of the effects the injury has had on me permanently. Below I go into the consequences of my ABI that I am still living with today.

  1. Deafness & Tinnitus (a constant ringing) in my left ear.
  2. Loss of sense of taste & smell.
  3. Diplopia in my left eye (a state of constant double vision due to my eyes being knocked out of alignment, a surgical correction took place but I have been told this correction is only temporary).
  4. Loss of balance (I can’t stand on one leg).
  5. Short & long-term memory issues.
  6. Slower processing of information and responsiveness.
  7. Social conduct and propriety (in terms of not filtering what I say before it comes out of my mouth).
  8. Short temper.
  9. Issues regarding personal space and proximity to people.
  10. Mental health issues – now I am not sure whether this is down to the ABI entirely. However, I am placing it on this list, as it is definitely an issue that didn’t occur until after the injury happened. The problems I am having seem to be based (mostly) around issues in my life that have come up since the ABI or are directly related to the ABI.

These are just some of the issues I am dealing with in the here and now. Some of them are physical disabilities, others are issues regarding my cognitive abilities and some don’t fit into either category (see number eleven). I know that there are more issues that I have not mentioned; I just cannot remember them all (see number six).

When I look at the list I have made and I think about each disability alone, they do not seem to be that bad, especially when I look at them in a positive note by considering what could have been. There are plenty of people who have to live with far worse things than I do after a brain injury. However, I would also say that when you put all of these things, all these afflictions together, it makes for quite a difficult lot to manage day to day. I do believe though that very few of the disabilities listed above are things that cannot be compensated for, improved upon or worked around with the right attitude and work ethic.

Home Life

As a consequence of my brain injury I am currently living at home with my parents. Now, as a twenty-six year old man, this is not ideal. We only live in a small, rented house that is not really big enough for my parents and me. We’re currently living in a small village where there is little to do so my social life is non-existent and it becomes very difficult to meet people.

Having said all of this, I have to say that I will always be grateful to my parents for allowing me houseroom. After trying to live independently saw a rise in the number of epileptic seizures I was having, it was becoming clear that I needed support and that living alone was not a viable option for me at the present moment. To move back in with my parents was a difficult decision to make but I know it was the right one for me at the time. I now know that I have the support I need should a seizure occur but they are also kind enough to ensure that I have time to focus on my writing ambitions without dealing with all of the stresses, pressures and responsibilities of living independently.

Work Life

One downside though is that the epilepsy has continued since I moved in with my parents and has had a pretty big impact on lots of aspects of my life. One thing you should probably know is that I am currently unemployed. I suffered many seizures while working for one of my old employers. She was extremely understanding about the situation and was aware of what action to take should one take place. At my most recent job however, I was made redundant just two days after suffering a seizure at work (the first one that I had there incidentally). I couldn’t tell you whether that is coincidence or not but it seems pretty suspect to me.

Social Life

My social life is something that has suffered quite badly since I suffered my ABI. Prior to the injury I was somebody who enjoyed a good night out on the beer on Friday and Saturday night followed by a take-away, before arriving home late. This is certainly an aspect of my life that is no longer possible due to the affect alcohol has on the way and the speed my brain processes information the day after. The consumption of alcohol also makes it more likely for me to have a seizure during the following days.

I know this may sound strange (although perhaps to some people reading this it doesn’t because they know exactly where I am coming from) but I live in a town where there are very few opportunities, facilities and activities. This means that going to the pub in the evening is a big part of people’s social life. There is very little that can be done from a social perspective that does not revolve around pub life and the people in them. But what if this does not suit me? Or what if I do not want to do this or am unable to do this? What are my other choices? Go somewhere else, I suppose.

Saying that, I also happen to be a fair distance from any of the major cities, Bournemouth being the closest which is a thirty mile trip one way, so many of the social opportunities that I would like to get involved in, that suit my interests are not realistic for me to pursue or get involved in. I can not do them where I live now, I can not fund the travel to go to the venues where they take place and I am very much alone in terms of having people with similar interests.

Conclusion

The subjects I have covered this week are a basic breakdown of my current situation in practical terms: how my ABI affects me, how those effects make living an independent life almost impossible for me in conventional terms. Over the coming weeks I will be exploring where it is I want to be and, if I cannot get there by conventional means, what alternative routes are there available for me to take? Then I will be moving on to specific issues I have that can not necessarily be solved but be worked around and compensated for to give me, and hopefully you, a better chance at a successful recovery.