Believe In Yourself!

Believe In Yourself!

The last two weeks (Identifying Triggers & Managing My Mental Health) have been focused on, in my own opinion, two key parts of addressing issues with mental health. I hope that over the last few weeks, the posts I have published have perhaps made you think a bit more about the way YOUR mind works. Hopefully, looking for triggers of negative thought patterns and analysing where those thought patterns lead and what the resulting mental and emotional state is will have enlightened you about yourself in the here and now and the situation you find yourself in. If we are to get through ABI and get our lives back into some kind of order and be satisfied with those lives, our achievements and be proud of who we are; a person with a disability, who is managing their emotions and mental state as best they can. Even if managing your mental health is not something you have completely mastered yet, recognising that there is a problem, accepting that problem and taking steps to address it, is a huge break through.

In my last post I went into thorough detail about the issues that I struggle with most and methods I use to help me in times where those mental health problems rear their ugly heads. I realize now when I look back at the post that a majority of the advice on methods to manage any mental health conditions were mostly physical actions that worked for me. I don’t apologize for that as the post was about my own mental health. When it comes to your mental health the actions you take that help you will things individual to your own interests and personality. However, I do believe that there are certain states of mind and certain attitudes that we can all adopt that will help us to find the right coping mechanisms and strategies. So here is what I believe to be sound advice to anyone who is suffering from anxiety, depression or any other mental health issues post-ABI; that confidence and self belief can be a huge part of managing mental health issues post ABI or TBI.

Focus On Your Strengths, Not On Your Weaknesses

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This statement, in itself when looked at through the eyes of someone who has not suffered an ABI, seems like a fairly obvious one. However, when we HAVE suffered an ABI we are still coming to terms with the fact that we have newly acquired weaknesses that weren’t there before. In the recovery stages it is (as I have said many, many times, so sorry for repeating myself) difficult to see past what we have lost, what we can no longer do and focus on what we do have and what we can do.

I think when it comes to certain aspects of recovery and especially mental health it is about acceptance. To a certain degree we have to submit to CERTAIN ASPECTS of the consequences of an ABI but not submit to ABI and how that word can be interpreted. The way that ABI is often thrown around and used as a general term is very damaging for those who live with the consequences of it. ABI is often used as a general term, a word for those that suffered from an Acquired Brain Injury that now dictates the rest of their life. This is the wrong interpretation in my opinion. It will dictate the way that we live our lives due to its consequences but it will not dictate how our lives turn out unless we allow it to. I think that we must submit to the fact that, as a result of our injury and its effects, there are certain things (but only certain things) we can no longer do in certain ways.

How does all this affect our state of mind in a positive way, I hear you ask. My answer to this is that while we must acknowledge and, in some cases, submit to restrictions imposed on us by our ABI, we also have to be able to see that there are strengths that still remain, abilities and functions that are still intact. Here is where we find the tools to look at things from different angles and assess situations from different perspectives. To use the strengths that remain to find alternative routes to the same destination, reach the same ends but by different means, focusing on the strengths because we have to find the things we can do, that we still have a talent for or even find new talents that we never knew that we had. Make sure you use those strengths as a tool to progress and achieve.

As I continued with recovery I started to think more broadly about tasks or targets I had set myself and ask more questions. “Is this achievable right now? What am I good at? What am I not so good at? How much can I manage? What is stopping me from doing this? Are there other ways to do this? ” Those are just a few of many questions I asked myself. By a process of trial and error I started to get answers to those questions that allowed me to find ways to do things just in a different way than before. When we start to see successes and achieve the targets we set ourselves (which we will if we persist and continue to ask the question: “How is my target most easily achievable for me in in my situation? Given my strengths and weaknesses”) confidence begins to grow. The more successes we have the more confident we are, when we are confident we try more things, we feel more sociable and are generally feel better as a result. In short, the small successes should be valued and built on as the long process of recovery continues.  

Look For & Try New Things (And New Ways Of Doing Things)

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As I mentioned, both in my last post and in the section above, whether we see it yet or not we all still have talents and strengths post-ABI. I spoke last week particularly about examining yourself in the hope of ascertaining what our potential strengths and weaknesses are in the emotional sense and finding techniques to manage those emotional states. Since my ABI, many key parts of my daily routine and things that help my state of mind nearly seven years later are things that I thought very little of before my injury. Many of them I was too close-minded about and thought of them with derision. I think that having an open mind towards different methods of healing has a huge impact on the likelihood of success.

It can be surprising what we find to be helpful, constructive or a useful tool. As an example, before my injury I was never someone to believe in the idea of holistic healing methods. Holistic meaning the following:

In terms of philosophy – The belief that parts of something are intimately interconnected and explicable only by reference to the whole.

In terms of medicine – Medicine characterized by the treatment of the whole person, taking into account mental and social factors, rather than just the symptoms of a disease or illness.

However, since my injury I believe that if it weren’t for certain aspects of holistic medicine and healing, then my recovery would most likely have been hindered. Certain moments, things that were real breakthroughs for me, came as a result of certain holistic methods of healing. For example learning different mental disciplines such as mindfulness and positive affirmation to keep negative thoughts at bay and TO START GIVING MYSELF CREDIT FOR THE THINGS I OVERCOME AND THE THINGS I ACHIEVE EACH DAY.

Then there are the positive lifestyle changes of diet (less sugar, less saturated fats, less caffeine, and increased exercise. I also have given up smoking and drinking alcohol. All of these things are allowing me to get a little fitter, slowly but surely, so that I can lose the excess weight I am carrying and feel better about myself and the way that I look.

Finally, having left my previous job in August 2015, I have decided to throw myself entirely into pursuing a career as a writer. Writing is something I have always had a talent and a passion for and that I love doing. With its various mediums, writing it allows me to express myself in many different ways about different things that are close to my heart, whether that is through my blogging on WordPress or for Headway, or writing prose and poetry that I write at home. The mere fact that I am doing something I love each day and doing it in a way that suits my injury and can work around the injury and my subsequent deficits gives me motivation and happiness as well as leading to different things, again things that I did not know about. Through my writing many small successes have come, both personal and commercial, which provides me with more confidence and more momentum to move forward.

Combining these aspects, disciplining my mind, living a healthier lifestyle and treating my body better and fulfilling myself with the things that I love to do are key parts of holistic philosophy. They have allowed me to find happiness, gain confidence and improve my health. This has all come from something that I had, in the years gone by, sneered at or looked down upon. So it is important to always keep an open mind, put your skepticism aside and test the different avenues available that might give you some kind of benefit, because one of them could change the course of your recovery for the better and change your life.

Listen To The Words Of Loved Ones

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We can find comfort, inspiration and solace in the words of others. Whether a loved one, a partner or a friend speaks those words, whether they are words written in a book by someone who lived centuries ago, or they come from a monologue in a blockbuster Hollywood movie, we can take those words and keep them close, interpret those words and find a way to make ourselves feel better about the life we live, our actions or the situation we are in.

The Words Of My Family

Much of my confidence and belief in myself was the constant reassurance of my family. Every day through the early stages of my recovery they would tell me, “we’re going to get through this”, “you’ve done really well today”, “go and have a rest, you deserve it after today”, and so on. Always it was constant assurances of my progress. It is vital that we as patients listen to the people who support us, the people who are outside of our clouded minds. For in the early stages of recovery, we cannot see those gradual improvements we make, the people outside of our negative and sometimes-oblivious mindset can. They see the very small improvements that we do not notice and they start to gather hope. That is where those words of encouragement come from, hope. It is our actions and our attitudes that can really ignite a spark of hope so that it is not just those on the outside that feel it, we the patients can feel it to.

Someone Else’s Words In Your Heart

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This is a very short section and really just an example of a quote that inspires me. Very often, words can provide hope that we never thought was there and inspire us, motivate us and articulate something we feel deep inside that we ourselves cannot put into words. Such are the following verses from the Rudyard Kipling poem “If” which I believe can be applied to many people who live with the aftermath of an ABI or TBI, if not they still hold significance to me and the struggles that I fight with every day.

If you can dream – and not make dreams your master,

If you can think and not make thoughts your aim;

If you can meet with triumph and disaster

And treat those two imposters just the same;

If you can bear to hear the truth you’ve spoken

Twisted by knaves to make a trap for fools,

Or watch the things you gave your life to, broken,

And stoop and build ’em up with worn out tools:

If you can make one heap of all your winnings

And risk it on one turn of pitch and toss,

And lose, and start again at your beginnings

And never breathe a word about your loss;

If you can force your heart and nerve and sinew

To serve your turn long after they are gone,

And so hold on when there is nothing in you

Except The Will, which says to them; HOLD ON!

Just as a final note, the entire poem encapsulates everything about living life with an ABI/TBI and the lifelong fight that goes on afterwards.

Be True To Yourself

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This post has been about experimenting with different avenues of recovery and looking at things in a different way and finding ways to making living with ABI more tolerable. There is one thing that I must say though, do not sacrifice who you are during this recovery. Take into account some of my last posts about triggers for mental health, and how I managing my mental health. My point is not to be experimental to the point of recklessness or in a way that contradicts who you are and what you believe in. I would not like to think that anything I have written has encouraged someone to sacrifice who they are.

What I have tried to say is maybe go a little out your comfort zone and try new things as often as you can but not at the expense of your health, your belief system or your own moral compass. I believe that with a little open mindedness we can all find ways to improve living our lives and managing our lives with an ABI or TBI. I hope this has been helpful in maybe giving you some ideas. If you want more info on my activities, head over to my Twitter page @ABIblogger or my Instagram page abi_blogger and please, follow and share my blog to learn more and raise awareness on Acquired Brain Injury and Traumatic Brain Injury. Thanks very much again!

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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!

Go Back A Step – Depression

Go Back A Step – Depression

First of all, I want to thank everyone for their continued support and interest in my blog over the pact eight or nine months. I have had some wonderful responses and talked to some inspirational people, with amazing stories who have overcome many similar obstacles (and in some cases more) that I have. There are also those that are still struggling and I am glad that you have taken the time to read my words, whether they offer, hope, knowledge or even just a different way of looking at things, it is amazing just to have my work taken seriously.

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I would also like to take a moment to offer an apology. Over the last few weeks, I have really struggled with issues of my own regarding depression, anxiety and just a general feeling of negativity. I have overworked myself over the past month, taken on too much and as a result my writing and commitment to you, the readers, has not been good enough.

Where I Failed

Over the past few weeks my linear narrative (which was focused on issues around depression, as will the posts over the next few weeks) has been disrupted by many events like ABI week, National Epilepsy Week and so forth. Over the past month I felt my mind and my thoughts sinking into the bog that is the negative thought process of depression: easy to get into, extremely difficult to get out of. My passion was waning and I produced content that was average at best and I knew was average but posted it anyway. There was a lack of enthusiasm, a lack of passion and to be honest, just a lack of care.

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After I had pulled myself out of this funk of depression and negativity I went back over the content I had posted and saw that the quality was poor. Not just in terms of the content that was written but just as much in the content that was not written, particularly when I spoke of what we go through (Mental Health: What We’re Dealing WithMental Health: What We’re Dealing With (Part 2)Post-ABI: Depression) with regards to our mental frailty and fragile mental health post-ABI. If there is anything I can say about the previous post on depression it is that it was written in very broad terms, talking only in a general way, about the issue and about things that people who have never experienced it generally presume to know anyway. What I didn’t write about is the feeling nobody other than someone who has suffered from depression will know: the dangerous period of time where people hit the bottom. When people feel as though they have no escape, no way out and that life is a game that they don’t want to play anymore. This is a serious discussion that is often avoided (I myself skipped ahead in my last post, Depression – The Positive Effects of Exercise, trying to provide methods of recovery when I had not fully explained the severity of depression.) At times in my recovery, I have felt that way and I will try my best to shed some light on why I felt the way I did and hopefully redeem myself for some pretty poor work over the past month.

Where the Depression Stems From

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As I have stated in past posts, in the early stages of recovery is where the seed is sewn regarding depression. We are mourning the loss of our former selves, the loss of certain abilities, brain functions and physical function, talents and personality traits. However what I believe to be the water that gives this seed the nourishment to grow is the feeling of, as we become more aware of our situation in passing months, a feeling of uselessness. You begin to question what exactly is your function and whether this will be your condition forever. When you are in the situation where you are gradually adjusting to living life with an acquired brain injury, it is difficult to see past the present and look to the future. Only with the right support from the right people can you avoid this trap. If you slip into a state of mind where, seeing what others around you are doing to support you, you end up asking yourself, am I a burden? Am I useless?

You Are Not a Burden

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As I say above, when you see what others are doing around you to help your recovery it can feel as though you are a burden. For a long time after my injury (the severity of which took complex brain surgery to save my life) I thought, “I wish I could just die!” Or I kept asking myself, “would it have been better if they had just let me die?”

The answer to that is a short and simple one, NO.

We all have something to contribute to this world everyone’s presence is vital. I firmly believe that. What we have to ask ourselves is that when parents and siblings, cousins, whoever do the things, do they do them out of obligation? Of course not, the reason that they do it is because they love us and have hope that things can get better for us. It is a hope that we need to find ourselves during recovery and it is a difficult thing to obtain. But as recovery slowly progresses we will find ourselves being able to do a certain thing that we weren’t able to do a few months ago (using examples from my own experience now, get up and walk down the stairs). That provides hope. We slowly improve on certain things and obtain other new skills that ease certain pressures on the people who are caring for us (being able to go to the bathroom and bathe without support). That provides hope.

There is also something to the notion that accepting that you need help is a big stage of conquering depression. Accepting that there will be setbacks and negative outcomes along the way is essential. It took me a long time to recognize and accept this notion. I think that is a result of that idea of mourning and that sense of loss that you feel after an ABI, that a thing that you used to be able to do so easily is now a real struggle. It makes you so angry that (in most cases) a situation that was not in your control has left you in this state. Getting over that resentment is the hardest part of ABI recovery in my opinion. It is only in the last year or two that the anger in me has subsided. In this particular situation it is a case of learning to control that anger and finding a suitable and constructive outlet.

It is my belief that the key to seeing through the mist that is that early stage of hopelessness, is to take the little victories that you achieve, hold on to them and keep them close. Because if you can achieve that, there are certainly other things you can do. I would also advise you to accept the help that is offered and listen to the positive words and the advice of those around you. Why not set yourself a larger goal for the long term?

Futures & Goals

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I was barely aware of what a future might entail. It took a lot of verbal support and a carefully monitored recovery plan (that was always adaptable and in transition) and the help of a (very) small number of workers assigned to my post-discharge rehab for me to see that there might even be a future. Establishing the fact that enough people believed in me, that I still had the abilities and that I could achieve things if worked hard enough was what enabled me to set myself a target and work towards a future. Trust me when I say this, the people who love you have these hopes for you to. They know you can achieve the things you want with the right amount of determination and the right work ethic. As for me, that target (getting back into education) was the closest thing to a long-term target I had, what I would do after that? That was another target to be set when I had achieved the first one.

I was extremely fortunate to achieve my goal and that the outcome was the best I could hope for. During my time at university, having a spent a year at home to recover, I was forced to try and confront all the challenges that I had struggled with. The things I had had to learn at home (cooking, regular bathing, cleaning my room etc.) were now completely up to me and I didn’t have anyone immediately near by to fall back on. It was a long, hard and some points miserable time. For the most part though, it was good for me, not just in terms of improving my health and my skills but in helping me socialise and learn new things. It was a big gamble for me to go to university but it is one I am glad I took. That can be a big contributor to improving your state of mind; changing your surroundings and challenging yourself!

We Need To Look Forward

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All people, whether fully abled people or people with a disability can contribute big things to the world. Everyday and throughout human existence you hear stories of great men and women achieving things, not just building a future for themselves but going down in history. Look at people such as Stephen Hawking, the greatest mind the world has ever known, confined to a wheelchair due to Motor-Neuron disease. Julius Caesar, according to studies of records and history, suffered from Epilepsy (or mini-strokes according to new findings) and he was the ruler of the Roman Empire and the reason that the empire was the size it was in the first place (that isn’t me advocating revolution and imperial dictatorship, but hey!). As a final example, David Weir (six time Paralympian gold medalist wheelchair racer) became the person in a wheelchair to complete a mile in less than three minutes.

My point being that we all have something within us that lead us onto greatness. After something like an ABI and while trapped in the quagmire of depression, anger and resentment that comes shortly afterwards, we need to find something to hold on to. Whether these are our own achievements, the love and support of family, friends or spouses or simply a determination to succeed in the pursuit of a long-term goal, they are the flames that keep burning and produce light in the dark, dank caves that are our minds during serious periods of depression. It is essential that, whatever you do, you do not let that light go out!

Epilepsy – A Monster In The Shadows

Epilepsy – A Monster In The Shadows

National Epilepsy Week; a week to raise awareness of epilepsy, steps to take when someone has a seizure and the potential ramifications of regularly occurring seizures and the way that lives can be altered, changed and devastated by the effects of epilepsy as a condition.

I have agonized over this for the last few days, thinking how best to write a piece that would bring attention and raise awareness regarding epilepsy. Equally important, I have wondered how any words that I write down here can have an impact that may contribute to positive change that make day-to-day living with the condition of epilepsy any easier.

I have struggled with the idea of writing a rallying call, a way that if we all contribute we can improve the facilities, work environments and conditions as well as eliminate stigma and the negative connotations that are still attached to epilepsy. However, I came to a decision before I started writing today, that for me to attempt to write something as epic and revolutionary as that between one thousand and one thousand five hundred word in length would be a futile enterprise.

I intend merely to examine the effect of epilepsy on the lives of people and the issues that epilepsy has as a condition that prevent it from being both accommodated for in current society and for people who suffer from the condition to be assisted in their day-to-day lives while out and about.

How It’s Different

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The main issue I see with epilepsy is also a key one in identifying how it differs from other disabilities, neurological ones or otherwise. Specifically what I mean here is that the most prominent effect of the condition, when a person suffers a seizure, is not static. It is different from other disabilities in that sense. For example, with sensory disabilities lets use blindness as an example, it is a static condition; the effects are consistent. The condition very rarely worsens or improves but remains static. I suppose, in that same way disabilities such as paralysis are static and the lives that wheelchair users have to live are similar in the sense that they rarely improve or worsen.

The point I am trying to make by using those two examples is not to try and get into a “who has it worse?” style, slanging match but merely to emphasise where I believe the differences in these disabilities and epilepsy are and I believe it to be very significant.

In the static nature of disabilities such as the examples I gave, blindness and paralysis, there comes with that a consistency. There is a knowledge to both the victim of the disability and just as importantly to the outside world what action can be taken, and should be taken, to aid people who suffer from these disabilities to live as full a life as possible while managing their disability as best they can with the help of family, friends and carers. Many positive actions have been implemented to aid people in wheelchairs such as wheelchair accessible ramps and lifts to aid with staircases, adaptations to public transports such as accessibility ramps that can be lowered as well as sections of buses & trains they can sit in that allow room for their wheelchair with instructions on how and where to sit to keep them as safe as possible. Similarly there are the use of things such as tactile paving, sound based aids at road crossings and improved increased advertising regarding guide dogs to lead the blind.

What I am saying I suppose, is that when a society knows what to do, how to react, how to aid a certain disability and what to expect, it can take steps to ensure the aid and protection of people suffering with those disabilities. When it comes to epilepsy though, to take a quote from the Epilepsy Society’s letter regarding applications for work and welfare, which I will be referring to throughout the remainder of this post:

“Epilepsy is a condition that poses unique challenges to those living with it and should be considered a ‘special case’.”

Epilepsy Society UK

A Special Case

First Aid

 There are many aspects of epilepsy that make it a special case and make it a very challenging issue to deal with in terms of awareness and aids being provided in every day life. Firstly, we as patients have to accept the fact that more often than not, the condition cannot really be explained; why we have it, what caused it and very often what the triggers for a seizure are. This is where that issue of a condition being static comes back into play. When a seizure occurs in a patient it often happens at the most inappropriate time (then again I would say that there isn’t really an appropriate time for one to occur) and that for me, they come very often, out of the blue and with no warning with my seizures lasting a proximately two minutes and normally taking me forty eight hours to recover from (I suffer from full on tonic-clonic seizures).

Though some people do get warnings and know what triggers their seizures, giving them time to either get to a safe position or to avoid certain situations or places that would be likely to induce one. For some, seizures last for only thirty seconds say. Then there are what I have come to call absences (formerly “blips”, something I also suffered from), which are tiny seizures that last for a matter of second, maybe less, so that they are barely noticeable. Sometimes it even takes the patient a long time to realise that these absences of awareness and concentration are in fact mini-epileptic seizures (as was the case with me. It wasn’t until my early/mid-teens that the presence of these absences was realized and diagnosed). The complexity and wide variety of seizure types, triggers and the effects they have on different people are the main obstacles in epilepsy being tackled or brought up within the current disability discourse, as the quote from the Epilepsy Society’s letter below suggests.

“Some people know their seizure triggers, making them easier to avoid. Some get a warning a few seconds or minutes beforehand, allowing them to get to safety before it develops. For most, seizures are unpredictable, a constant fear of what might happen and when.”

Epilepsy Society UK

The point is that epilepsy, as a condition is actually not fully understood, even by professionals. Obviously they know much and can help you to try and manage the condition. But the scale of epilepsy, its seizure types, manifestations and outcomes is so large, ever changing and unpredictable that to be able to aid the people who suffer from it who are walking down the street becomes almost an impossible task. As an example of the way that epilepsy evolves, I have started to have seizures during the night, while I sleep, a particularly dangerous type of epilepsy.

Even the same types of seizure affect different people in different ways and produce hugely different experiences. Another extract from the Epilepsy Society’s letter reiterates and concludes all that I have touched upon in this segment.

“Epilepsy types and seizures vary in different people and can also change over time in an individual. There are over forty different types of seizure and even people with the same seizure type have very different experiences. It is not possible to generalize about the impact of epilepsy.”

Epilepsy Society

How De We Deal With This?

Ideas:Questions

I have to say that I am not as close to any close answer or solution to tackle the issues that epilepsy presents. The thing that I would say is that if you or someone close to you suffers from epilepsy and seizures continue to occur regularly firstly seek help from a professional. It could be that something as simple as a medication change could solve the issue (as was the case with me. Recently started a regime to change my medication from Sodium Valproate to Levetiracetam and I have not had a seizure for over three months, hooray!). But it could be that the seizures are brought on by the very nature of epilepsy and the things I have discussed above.

The unpredictability of this strange and terrible disability can have huge effects on a person’s confidence and state of mind. Sometimes epilepsy can feel like a monster that is stalking you, ever present in the background, sharpening its claws and waiting to pounce at the most inopportune moment. This feeling can be overwhelming seizures are uncontrolled. The key that I have found, even during those periods where the condition was uncontrolled, is to not let the condition rule me and dictate my life through fear and anxiety. Because epilepsy does produce emotional and psychological effects that cannot be ignored or even acknowledged I would say. I realize that that is all well and good for me to say, but if we allow those feelings of fear and distress to overwhelm us it will only worsen the condition, turning the epilepsy into a cyclical condition. As a final extract from the Epilepsy Society’s letter it explains how that works: “Seizures can be debilitating for the duration and for some time afterwards. Not knowing when a seizure will happen is disabling and can lead to fear, anxiety and isolation.” It then goes on to say that: “People with epilepsy can experience emotional and psychological effects on health. Memory loss, concentration problems, depression and anxiety all impact on seizure control, creating a vicious cycle.”

So, by ensuring that we are taking the correct medication in the correct dosages, with the help and support of family and friends to enable us to live a life where we can socialise, exercise, be creative and boost our confidence, we can contribute to managing epilepsy ourselves. In my opinion, this will be a key aspect to living with epilepsy. All the evidence and everything I have listened to in the discourse surrounding disability in the UK suggests that it will be an impossible thing for society to accommodate for in terms of facilities. We need to make sure that this point is continually raised to ensure that epilepsy is included in discussion surrounding disability and treated as seriously as it deserves to be so that in the future as more is learned about the condition, facilities, services and accommodations can be made and put in place in society.

Thanks for reading everyone. I hope you have found the post to be useful and informative. If you want to read more of my work on ABI, TBI and brain injury awareness follow my blog. Just so people know, another copy of this post can be found on

Headway Worcestershire‘s website as well as plenty of other useful information and inspiring stories regarding brain injury. If you are looking for more information regarding epilepsy, I would start with Epilepsy Action UK and The Epilepsy Society for lots of helpful information on living with and caring for people with epilepsy from two outstanding charities who work tirelessly to help people like you and I. If you want to read more of my work, follow me on Twitter, my handle is @ABIblogger and on my Instagram page where I have now changed my user name to abi_blogger

 

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

The Importance Of Family

Here I am, back again. I suppose I wanted to apologise for the last few weeks where the posts I have written may have seemed a touch negative. I feel that I don’t need to defend myself so much as explain why I have highlighted the potential damage things such as Simplifying ABI Recovery and downplaying manifestations of the injury can be to the overall recovery process. If we search for Lessons from the outcomes of challenges an ABI patient takes on as opposed to trying to give the outcomes a definitive and often one-dimensional label (i.e. a success or a failure) then everyone can learn from the experience.

What My Family & I Have Learned

I have learned that the more we (as in my family and I) attempt to understand my injury the better we are for it. Having learnt more about me, my abilities, my limitations and my strengths and then tailoring a recovery path around those things, we believe we are making slow and steady progress. It takes a long time to learn about the issues that surround ABI and an equally long time to get used to and adapt your own thinking and behaviors to a person who, very often, has been significantly altered by their injury. It also takes years of expert knowledge from some of the smartest and most intelligent doctors to really get to know who we (the patient) are and what we are about from a purely objective point of view. So imagine how incredibly hard it must be for those who are not objective but subjective and have had to bear witness to that change of personality and abilities. What the last post have been about is emphasizing the role of educating ones self and learning from experience can be to making a path towards recovery an easier one for patient and carer alike.

What Can The Family Provide After An ABI

“There’s no vocabulary for love within a family, love that is lived in but not looked at, love within the light of which all else is seen, the love within which all other love finds speech. This love is silent.”

-T. S. Eliot

The family and the home environment after an ABI, as I have stressed in my last two posts, will have a dramatic effect on the patient’s attitude, confidence, mental state and all other aspects of a person that we do not see. Or perhaps we see them only in their actions and maybe only in mere flashes, in single moments (that final thought was a sentence that only just occurred to me, just this second).

From my experiences as an ABI patient, I was fortunate enough to be provided with a relaxed, quiet environment. I was allowed to take challenges on in my own time. I was given time to relax, sleep when I wanted to sleep, I was gently encouraged to do things if it seemed I was becoming to negative or was closing myself off and shutting myself away, but I was never put under any kind of pressure. I had my own room with things that would keep me entertained during the day in a house where there was a garden if I wanted to go outside. Finally and, perhaps most importantly, I had a mother and father who were always supportive, accommodating and flexible to my needs, willing to work with my strengths and around my weaknesses, and willing to fight for me in battles I could not hope to win individually.

All of these things combined allowed me to move forward with my life after an ABI and get to where I am today. We are not a rich family, a family with powerful influence or friends in high places; we are just a close one. What perhaps I didn’t realize at the time is how extremely fortunate I am to have the family that I do around me; The father who worked split shifts – six AM until twelve PM followed by seven PM until two AM – and a mother, sister and brother who would arrange their own work schedules as best they could to ensure I was not left alone for any prolonged period of time (not always possible but they did their best and would always come and visit me after they had finished their shifts). Because for every person like me who was fortunate in this way there are plenty more people, either OAP’s, people from broken families or just people that slipped between the cracks, that don’t have the kind of support that I did.

How Does ABI Fit In To Current UK Society?

The short answer is that it doesn’t and that we are not considered or represented and our injury is thought of in society, particularly in bureaucratic and institutional terms as the same as every other disability.

Now I will give you the long answer. What I have learned, especially since it now directly affects me on a day-to-day basis, is that in recent years things have changed in British society, and from my point of view for the worse, particularly in terms of our frontline services. Due to government policy and directives as well as huge budget cuts, Doctor’s are put under pressure to provide outcomes that look good statistically rather than ones that benefit the patient and their wellbeing in the long term. NHS budgets are being cut while doctors are being forced to do more hours for less money. Outpatient services attempt to shoehorn people in to programs that are not suitable in the hope of providing some kind of suitable statistical outcome while having no real resources to provide any long-term care. Most people are ineligible for most forms of welfare due to the process now being means tested and based upon a report written by someone that has met you for one hour to conduct an “assessment”. Finally, in the past six months I can think of two separate occasions where medical professionals, while I was in a vulnerable state, have taken advantage of my situation to placate the people at the top who have set their statistical targets.

Playing To Win

Now these issues have not been as much of a problem for me because of the support I have from my family. However, if you are not in the same situation, what do you do? What would have happened to these people, if they had found themselves in the same two situations I mentioned, who don’t have the advocacy and the support that I have had to fall back on? It’s nothing short of scandalous the way that the people with disabilities are being treated in this country at the moment, portrayed as lazy scroungers or fakers, what’s worse is that that poisonous mentality is seeping into the media and into general society.

It seems as though, at the moment, with the huge financial constraints imposed by the government, any good will that was previously the foundation of things such as the NHS and the welfare state (both are things we, as citizens of the UK, have been paying for since the mid-1940’s with our taxes by the way) have been obliterated. It has now become a charade, a game of sorts. They have set the rules and if you want to win you have to play but it is vital that we have our teammates beside us, playing just as hard, if not harder than you are to ensure that you pick up the win.