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!

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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.

 

 

 

 

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.

Post-ABI – Returning To Work (Part 1)

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. In my previous post I mentioned the potential positive effects returning to the “mainstream” could have for people who have suffered a brain injury. This post will look at how to approach returning to mainstream employment. Last time I spoke at length on the positive effects higher education had to me and what I hope was some helpful advice on choosing the right course and accessing the support you, as a disabled student, would be entitled to. This time I hope to do the same regarding a return to work.

How Will It Help?

Returning to work can seem like a daunting prospect when you have suffered an ABI like we have. You are coming to terms with a new sense of self; there are things that you cannot do any more (perhaps cognitively, physically or both), there are issues with regards to your physical and mental health (such as fatigue, anxiety and depression). Those are issues that we face everyday (to name just a few), but I believe that a return to work can help improve most of those issues. Working a steady job, supporting ourselves and increasing our independence, grows our confidence and sense of fulfillment. This in turn plays a massive part in contributing to a positive mentality where we do not feel defined by our injury or inferior to other employees.

Looking At Yourself & Being Honest

Nobody knows you better than you. That’s a fact. It is a fact I believe to be especially important post-ABI. After a certain amount of time, you will start to become more aware of what it is you may or may not be able to do anymore. You will start to see where it is you are having difficulties. Equally, it will allow you to see where you are still strong. You may not be able to see it yet if you are still coming off the back of the injury, but you do still have strengths and abilities that make you valuable. Taking notes of these strengths and weaknesses will be crucial in terms of when you are finally ready to return to work, in applying for a suitable job for you in the long-term.

Having a positive mindset and at the same time, having a firm acceptance of your disabilities and sense of who you are key when thinking of returning to work are massive contributory factors in terms of potential success. When it gets to a point of looking for jobs, it is much better to look at the job listings asking yourself “What can I do?” as opposed to looking for what you can’t do.

Again, Start Small

I realize that this has been something of a recurring theme in many of my posts but I am a firm believer in it. When returning to work it is certainly best not to jump in with both feet. Starting out small is key to this. I believe a good way to gauge your ability to work is through voluntary employment. Offer your services to a local charity shop, or work with the head injury charities available in your area (Headway UK offer local support groups for returning to employment and there are other disability employment organisations that can help you find appropriate voluntary work, follow the link to access their website –www.headway.org.uk) . The benefits of voluntary work are that it offers a flexible working schedule and environment. This flexibility will allow you to assess yourself while you are being challenged. Again, you can look at where you are perhaps stronger or weaker; try to think of strategies that help you cope with certain situation where you struggle and how to increase your involvement in situations where you are strong. If all is going well and you would like to test your strength a little more, you can ask for more hours or more shifts while at the same time, if you are finding that the work is too demanding, you will be able to reduce hours and shifts accordingly. The positives of this is that it allows you to assess your strengths and weaknesses in the working environment in a situation of less pressure and also, if you do well, get a nice reference off the back of it.

The Support Is Out There

There are many different types of support available for people who suffered a brain injury from many different sectors. There are specific rehabilitation services, such as some of the vocational rehabilitation services that offer courses to teach new skills to those adjusting to life post-ABI. Acquiring a new skill could be just the tonic you are looking for if you are, as I was and many others are, at something of a loss as to which route you should go down. There are many vocational services offered by local branches of the NHS and accessing them should be relatively simple through your specialist.

Other potential benefits that can be gained by accessing the services of the NHS are things like appointments with occupational therapists. Getting involved in those kind of services can really help you to focus in on what it is you want to do as well as bringing potential programmes that could benefit you to your attention. I believe that just because we are the victims of a brain injury we should not be stuck in a job we hate for the rest of our lives. We should be able to gain employment that we are enthusiastic about and that gives us fulfillment (P.S. In terms of accessing the kind of support I have mentioned above – occupational therapy and vocational rehabilitation – a good place to look is in the service directory under the resources tab, on the UK Acquired Brain Injury Forum, just follow the link to their website – http://ukabif.org.uk).

There are also the Disability Employment Advisors (DEA’s) at the local Jobcentre Plus who can help you to shift through the many job opportunities out there to find something suitable for you and your specific situation. The Jobcentre Plus also offers specific programmes for disabled people who are trying to go back to work as well as information on potential welfare eligibility. Many of the Jobcentre’s effectiveness and their ability to help you will be dependent on the amount of funding they receive. I would urge you to go into it with an open mind and explore all the options that they have available (PS. Follow the link to a useful Jobcentre Plus guide – http://www.jobcentreguide.org).

In Conclusion…

It is only now I have completed this post that I have realized there is so much more I can say on this subject. So I have decided to elaborate on this subject on Monday as I think there is a lot to be said regarding the ABI in the working environment, so this one has ended up being something of a two-parter. Thanks everyone for reading and I hope it was of benefit. To find out more about my blog follow me here on WordPress @ABIBlogger or follow me on Twitter @ABIblogger (yes the lower case ‘b’ is intentional). Thanks again and be well.

Post ABI – Embracing The Reality With A Positive Mindset

My name is Tom; I am 26 years old and the survivor of an acquired brain injury. I have covered much of the initial issues that came up in the immediate aftermath of me suffering my injury. This post will be focusing on how a positive mindset can make all the difference to you as you move forward in your recovery.

I believe that the key is to assess where the limitations that have been placed on you make a difference and where they don’t. In my opinion, it is about allowing the situation to dictate certain elements of the way you live day to day because it has to. While at the same time, not allowing the injury to define who you are and what you can achieve in the grand scheme of things. Alright, so you may not be able to have a drink anymore, or play a certain sport that you enjoyed previously like rugby for instance, but going back to work? Going to university? Those are all achievable things, things that you can do with the right mindset.

ABI – The Inescapable Reality

We all know that as survivors of something like an ABI, we are affected everyday by the consequences of our injuries. Of course, we feel resentment and frustration towards something that is inescapable and that makes us feel marginalized when we look at those around us. There will be successes and failures on the road of recovery as there is for anyone but sometimes it can feel as though there is only failure. This post is to say to you that success, lasting success, can be achievable. A lot of successes depend very much on the way that you regard your injury when you approach potential opportunities and problems. Whether that is using your brain injury to get the things that you need, to channeling your frustration and anger into a constructive, or will you allow the injury to beat you? Will it go on to define who you are and what you are able to do for the rest of your life?

Accepting The Situation

It is only after many long stays at both ends of the spectrum between success and failure that the gains from the successes started to outweigh the losses of the failures. When I look back at my own experiences, it was out of a desire to live a life unaffected by brain injury that most of these failures seem to have stemmed from. Thinking I could do the same things as everyone else without any help, when the truth is I can’t. Or I can, but only with lots of help from loved ones and in a very well organised set of circumstances. Now I have finally decided to embrace my situation, not to hide from it or evade it, the successes are becoming more plentiful.

More recently, I have started to think in a more logical way regarding my ABI. As I have stated before, the after effects make us victims feel frustrated, angry and marginalized. We find ourselves asking “why me?” I have started to think though, that if the effects of the injury are here to stay, if the consequences of the ABI are going to be an ever present, shouldn’t we all try to find a way to turn these problems to our advantage?

What Do You Want!

I firmly believe that the majority of opportunities in life that are available for (for lack of a better word) “regular” people are accessible to people who have suffered from brain injuries. One thing that must be acknowledged is the amount of hard work that will go into accessing those openings. There is a lot of paperwork and bureaucracy to go through as well as the most problematic thing to overcome, difficult people in office jobs and positions of “power”. Seriously though, look at yourself, look at your situation and ask where do I want to be? What do I want to do? Do I want to go back to work, do I want get back into education, is there a particular job I want and so forth.

The key is, to set yourself a goal that you can work towards. Focusing your energy and applying yourself towards attaining that goal is not only a positive in terms of it helps to exercise your brain and improve its function (or it certainly did for me), but also it doesn’t allow you to fester on the things you have lost as you are focusing on something else. You have the knowledge that if you work for it you can achieve the same things as everyone else, which is a huge positive and helps drive you on.

Also, it is worth bearing in mind that while we currently live in a time where austerity is the word of the day, there is help out there. The important thing is to find resources who can offer help in guiding you toward the right kind of help that you may need. In the next couple of posts I will put up a few links that can help you get the right support to help you.

An Example

Pre-ABI I was weeks away from starting on my chosen university course. Something I had been looking forward to, as any nineteen year old does, with huge anticipation. To find post-ABI that I would have to wait at least another year before I could go was a real kick in the teeth. My neurologist told me that we would monitor my situation over the coming year and decide then, when it was easier to see what the long-term consequences of the injury would be. The thing was, while it was so frustrating knowing I would have to wait a full year before going to uni, the fact that I could still go motivated me more than anything else has ever done. I worked and worked, my father worked with the disabled students centre at my chosen university to ensure I would have all the support I needed. When the time came to be assessed again, my neurologist supported the idea of me going to uni as he believed it would benefit me in the long run (that is a very brief overview of the process of access to education, merely to talk about mindset, there will be more detailed information on this in the next post and over the coming weeks). I got to that point mostly from a determination not to allow my ABI to define who I was going to become. It shouldn’t define us! We can be what we want to be and achieve what we want to achieve, same as anyone else!

You Can Do It To!

I will say to you again that most of the things that people without head injuries do in life are accessible and achievable for ABI victims. The importance of a positive mindset cannot be underestimated, especially when combined with determination and a strong work ethic. Next week I will be sharing my experiences of accessing education and sharing some of the ways that helped me to become more independent. I will also share some of the servicesI had access to, without which, I probably wouldn’t have completed my degree.

Thanks again for those that have read today. As always, I am open to contact and constructive criticism if you want. I am available on Twitter @ABIblogger or you can follow and comment on here. Thanks again and be well!

 

 

 

Socialisation & Engagement (Part 3) – Some Hard Truths

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. The key points that I wanted to illustrate in the last two posts have been to highlight the aspects of your life that are affected by an ABI: the physical and cognitive limitations as well as constantly having to be aware of your general health and well being (more so than most other people) means that in many ways you are limited in what you can do in terms of building a social life post ABI. I also hope that I made my opinions clear that much of these limitations can be really emphasised by a lack of understanding from the general populace regarding head injuries. A healthy social life is something that I found to be key to my recovery, but once again it is something that can be difficult to establish and it may require thinking outside the box in terms of what may be out there that is doable for an ABI patient.

A Limitation of Freedoms

You need to find a way to be able to enjoy yourself and some people can get this gratification from the aspects of health and well being such as exercise and diet and so forth. Many people also get a lot of fulfillment from their occupations, however there does come a point where you need to address the fact that because of some of the limitations the ABI has left you with, you may not be able to go back to work for a while or do the same kind of work that you did before. Finding and keeping work has been a big struggle for me which I have found incredibly frustrating as someone who was brought up in a family where having a job has been not just important it has been a necessity since I was sixteen. So I am going to talk about my experiences of how my life has changed in terms of some of the things I can no longer do have difficulty doing that I perhaps took for granted pre-ABI.

Struggles With Work

Let us start with a for instance. As I have said in past posts, a lot of socialization stems from people’s employment. People going for a drink after work; or there is a work 5 a-side football team, there are even romances that begin at work. Not to mention, depending on the type of work you do, socializing can be a large part of it. Take me for example – pre-ABI, I was a waiter. My entire job description revolved around socializing with people; making them feel welcome, engaging with them and making them feel comfortable. Pre-ABI, I had five years of experience in the service industry and I was good at my job. Having spoken to doctors, I have been told that the service industry is probably the worst industry I could work in, in terms of what my brain would be able to tolerate.

My neurologist said to me that the unpredictability, the chaos and the constantly having to be aware of my surroundings, that is required in the service industry would be too much for me. That the stressful nature of the industry did not work well with an injury like an ABI. To give an example of a similar problem, it would be similar to a man with a bad back getting a job as a removal man. However, post ABI, I was foolish enough to attempt to re-enter that industry.

My return to the service industry resulted in a spike in my epileptic seizures: seizures on the way to work, seizures while I was at work, and these are Tonic-Clonic seizures (the kind you see in movies where the character collapses without warning and starts frothing at the mouth) so a pretty frightening experience for people around me. Fortunately, my first boss was fairly understanding towards me and seemed to think I was a good employee and kept me on… until the café closed. So I relocated to another place, a bistro pub this time. After three months, I had a seizure while I was at work. A day later, I returned to tell them I would be in for my scheduled shift on the Monday. When I arrived I was informed that I no longer worked there.

Now, I cannot prove that the seizure was the reason for my termination but at the same time, I never really received what I consider to be a justifiable reason for that termination, and the timing seems a little coincidental. As I said, I cannot prove that this was my reason for termination, but I believe it was. In my opinion, it was down to some of the issues I still have as a result of my ABI . In particular, the effect the ABI has on my epilepsy and how retaining information as long term memory made it difficult for me to learn the way a new employer wants me to do things and the methods and routine they use. That’s the worrying thing. While we like to believe in equal opportunity, and that we, as victims of ABI, are no different from others, in the eyes of others, we are. That statement is particularly relevant when it comes to employers. If a large-scale company with a union employs you, you’re less likely to have those kinds of issues as there are procedures that need to be adhered to and processes that need to be gone through.

However, smaller businesses, which do not have those sorts of protection for their employees, are less likely to persist with you, attempt to understand your situation, and help you make the necessary adjustments any new job requires. The reason being, and I’m sorry if this sounds cold but I am merely talking from my own experiences, that for an employer, its an inconvenience knowing that an employee could collapse at any point and disrupt the working day, or having to persist with them regarding the “on the job” training. It is much easier to get somebody in who does not have a situation you need to accommodate for.

This has left me in a position where I now have no job, through no real fault of my own, all of my previous work experience in the service industry counts for nothing as I have no other industry experience on my CV (with the exception of a years labouring when I left school at sixteen). I have had to move back in with my mum and dad as an epileptic I cannot live alone due to the health risk but due to fatigue I still suffer from as result of an ABI I cannot work full time anyway. The point I am trying to get to is, that even with something as seemingly mundane as applying for a job, the consequences of my ABI (and the effect those consequences have on my epilepsy) play a huge part in what I can and can’t apply for. As such, any job I am lucky enough to get will then have a large effect on my work life and life at home; either in the way it adversely affects my epilepsy, or my ability to engage with people in the work environment.

A Social Life

When I look at this part of my life, it is only really over the last year that I have taken charge of my social life. The thing is, after my ABI, I was determined to desperately cling to the life I had prior to it. I don’t think that this is unusual but I have not met many other ABI patients my own age to talk about it with. As I have said before, upon my discharge from hospital, there was a general feeling amongst my family and friends that things would return to a state of normality in due time. However, it took me nearly four years to recognize that this was not the case. The ABI was going to be permanent.

As I say, I was twenty years old when I was released from hospital (my twentieth birthday happening in the rehabilitation wing of a Dorset hospital). This time is a crucial time for young people, a time where we do not want to be inhibited by the rules of parents and the thoughts of general society. It is a time where we want to be free. Those years in the early twenties, in my opinion, are the years where you find out who you are and what you really want to do. I believe they define your future.

For me, I was a step back. I had to rediscover who I was before I could truly discover and define who I wanted to be. One of the key things that defined me was a realization, a moment of clarity if you will. The key to moving forward for me was the phrase “Who cares what they think?” Because the truth of the matter is, when you go through difficult times you find out who your friends are, at least I certainly did. The people who you need to keep in your life rise to the occasion magnificently. These people make allowances for your difficulties, your problems, and accept the reason you can’t do certain things because they are sympathetic, sensible, beautiful people trying to empathize with your situation. The vast majority of them however, you will rarely see again because to them, you are nothing more than an inconvenience and trust me you are better off without them.

It took me until years after the ABI to realize that many of the “evening out” options with people seemed to revolve around alcohol, at that age they do anyway (I’m not sure if it’s purely an age thing or whether the place I was living and the drinking culture that was there also contributed).

Since the ABI, I have greatly reduced my alcohol intake, my desire to drink is lessened greatly due to the way it makes me feel for the next day or so (absolutely awful if you must know). Unfortunately, I am and most likely always will be, one of those people who wants all or nothing. I have an addictive personality. I have a fairly heavy smoking habit (as in daily, though this was the case pre-ABI). If I want a drink, I want a lot of drink, you know? Over the last year, I really started to realize what the consumption of alcohol did to me; it had a tendency to induce seizures a few days after a booze binge (I recently found out that the time alcohol is most likely to induce a seizure is when it is just leaving the body, approx. 48 hours after the binge has taken place), or even if I didn’t have a seizure, I would be fit for nothing for 48 hours anyway. Over the last year or so, I have (for the most part) given up alcohol entirely, but as a result of that, what was previously a full diary in terms of my social life, now has very few entries.

The key to a healthy social life, where you might want to join some friends for a drink at a pub, is to surround yourself with people that have tried to empathize and attempt to understand your situation for what it is and why you can’t do the things that everyone else can. Surrounding yourself with people who are aware of your situation and care for your well being (not just their night out). This will not only benefit you in terms of your health and well being but, while you may find yourself with fewer friends in terms of the number, they will be better friends who want what is best for you. The absence of that added peer pressure, which for young people especially, can heavily influence decision making most often for the worse (that is a particularly relevant point because post-ABI, our decision making ability is not good at the best of times).

Let me give you an example. After I was discharged I was told that I was not allowed to drink alcohol for an entire year. I live in a very quiet town with very little going on. Going out for (often, more than) a few pints in the evening was a large part of our social lives for my friends and me. Since the ABI, I made it something of a mission to greatly reduce/give up boozing. Having made that decision, I realised that I am still in regular contact with only one of those people on a regular basis. This is because the others have faded away as they realized I would no longer be the beer-swilling socialite who would go along with what the group wanted to do, that I was pre-ABI. They were unwilling to make the effort to understand and make allowances for my abstinence.

As I have tried to make clear, building a social life that is of benefit to you as a patient and finding appropriate activities and (as a long term goal) appropriate employment is both extremely important and extremely difficult. So, on the next few posts I am going to focus on dealing with doctors and trying to understand where they are coming from. Following on from that, finding charities and organisations that allow for and ensure a safe environment for people with ABI ‘s and Brain Injuries in general to be able to socialise and meet people with similar interests and ideas.

My blog is only early stages so I am still getting to grips with the medium. I think I am starting to get the hang of what people are after, so I hope you are all gaining something from it. I will try from now, not to merely repeat what I did in terms of a methodology, but try to address how those things make me feel, how/whether they affect me today and my subsequent conclusions (what I have tried to do over the last few posts). I hope you will follow me on Twitter, my handle is @ABIblogger, and that my posts are beneficial to you, whether patient or carer.