Socialisation & Emotional Instability

Socialisation & Emotional Instability

 

Emotional balance and states of mind are a difficult thing to manage for me. I see many of my emotion precariously balanced on a knife-edge throughout my day-to-day life. There are small moments, events or incidents that may seem insignificant to other people of the non-disabled community, that they can brush off in a moment and see these incidents as merely small irritations in their day-to-day life. What I have found is that a moment, which could be interpreted as the smallest inconvenience for them, can turn out to be the blueprint that will reflect my mood and my attitude towards other people and the world at large for the remainder of the day (and in some cases a period of days).

We like to think (when I say “we” I mean all of us, people with a disability or anyone else) that we have these emotions under control from the start of our day to the end of our day. Much of what allows us to keep that kind of emotional control is (I believe) our cognitive abilities, in particular our social skills. For people who have not suffered an ABI/TBI, in essence the fully abled population of the UK, waking up in a bad mood is an inconvenience; they may be grumpy, have a slightly sharper tongue than usual and slightly less prone to socializing. What is more, when issues such as anger, mood and emotional instability become a problem they still have their cognitive abilities in tact to be able to deal with whatever the issue is. They can think around a problem, read a social situation and decide clearly what is the best way to respond and most importantly of all emotional reaction can be kept in check and (in the vast majority of cases) the person can put forward an appropriate emotional response.

Why Is That Different For Brain Injury Victims?

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I believe that there are many factors to consider in terms of the difficulties of determining an appropriate emotional response to situations for ABI patients and the potential emotional instability that we suffer from. But these I believe are the biggest contributing factors.

Firstly, I would argue that people such as myself and many reading this post who have suffered an ABI have a tendency to focus heavily on the abilities they now lack, the things they can’t do since they suffered their injury which causes a feeling of insecurity and a sense of fear that those (what we the patients) perceive to be “weaknesses” will be exposed (a point I highlighted in last week’s blog post Anxiety & Low Self Esteem and other posts in previous weeks Go Back A Step – Depression and Identifying Triggers). Fear and anxiety are states of mind that will contribute to any emotional social interaction and by-proxy emotional reaction an ABI patient has.

Secondly, something I believe to be strongly related to the first factor, people without ABI’s or TBI’s tend to be better in social situations. I am not necessarily being specific about a patient’s ability to perform, say verbal communication, tone of voice, articulation and body language but rather an their ability to read and interpret those aspects of language and communication accurately and correctly when they are delivered by other people. The skill of interpreting the codes and conventions of communication are vital to social interaction and it is common amongst recovering ABI and TBI patients that those skills can be lessened, damaged or lost post-brain injury.

Finally, something that I suffer from a great deal and that is the ability to cope with the unexpected or with incidents that can ruin a plan that a patient has arranged. I have tried to emphasize the importance of developing a routine, developing positive habits and processes that help you manage your day and living with your condition as well as trying to find things that you can enjoy each day. When these plans go astray due to outside influences, our emotional reaction can often turn out to be disproportionate to the event itself. It is a lack of ability to get to grips with disappointment, anger or whatever emotion takes hold, master ourselves and to not let the emotions that come from that event disrupt the rest of our day and the mindset we carry throughout the day.

My intention this week is to explore these particular topics in further detail and then, in the next few weeks, try and provide some helpful techniques as to how we handle the different emotional instabilities and mental health issues that can seemingly come from nowhere and ruin days, even weeks.

Social Engagement – Self Doubt

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In a society that is applying increasing pressure on people to conform, to meet a required standard in their abilities, their appearance, opinions and behavior, it is extremely difficult for people with ABI’s and TBI’s to feel comfortable with who they are, the way they act and to know if the way they are acting would be considered “normal”. This societal pressure (heavily influenced by the media) means that many ABI/TBI patients feel anxious about the idea of social engagement before it has even begun. If the activity is a pre-arranged event, I know that I myself have spent days leading up to an event fretting, worrying about how people will see me, perceive me and whether or not they are judging me. When we apply this kind of pressure to ourselves the likelihood that things can potentially go wrong in social situations increases dramatically.

Social Engagement – Communication

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I think it is safe to say, at least from my own perspective, that after a brain injury, we are fairly unsure about ourselves. For a certain period of time I would also add that we don’t understand ourselves. We have gradually recognized that there is something different about ourselves after our injury; there is something about us that is different to everyone else. I often think that our (or at least my) emotional reactions can have a tendency to ride roughshod over our cognitive abilities and for lack of a better term, “common sense”.

I have found that I will often blurt out a response in a conversation that is a statement composed entirely by my emotions can often be blurted out without any real thought of how people around me in the conversation will interpret it. The way a statement can be interpreted by people consists of many things, the statement itself, whether or not the timing of the statement is appropriate within the “flow” of the conversation (so timing, subject, the opinions of those taking part in the conversation on the subject at hand and finally the direction of the conversation), the tone of voice, the speed of the conversation, body language and so on. From my experience with an ABI all of these things can contribute to difficulties in social engagement. Mostly because of a patient’s inability to take in all of these contributing factors, decipher the meaning, think of an appropriate considered response and deliver that response with all of the contributing factors I mentioned previously applied so that other people in the conversation can interpret the correct meaning but also the fact that those people do not consider all of the intricacies of social conduct. Those intricacies have become so engrained that they do them almost automatically. Whereas for patients, many so called automatic bodily and cognitive functions have been damaged so that understanding, performing and interpreting those functions in a social setting is incredibly difficult.

What Is The Result? Emotional Instability

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Well when you consider the issues I have mentioned regarding self-doubt and the difficulties brain injury patients have when it comes to social interactions and the pressures those things ensure is that emotional knee jerk reactions can often overtake the processes of composing a measured and appropriate response.

For example, when we are involved in a conversation and (as so many of us experience) a statement we make is met with an awkward silence and the other people in the conversation staring at you, unsure how to respond, panic kicks in. The silence is deafening, we start to wonder what we have said and done, what the other people are thinking. We also feel the colour in our cheeks rise; we are embarrassed, humiliated, and angry at our inefficiency. The deafening silence continues so we try to make amends by filling the silence. We start talking again, not realizing that the things we are saying this time are just as awkward for the people listening as the last sentences were. We keep talking though like a man with a shovel who just keeps digging until finally the reaction, the looks on the faces of the other people (amusement, embarrassment, disapproval, confusion) and the overwhelming silence forces us to clam up.

Here is where the anger kicks in; we can react angrily to the people who we are talking to; “What the hell are you laughing at?” Or “Don’t you dare laugh at me!” Or we can be angry at ourselves, embarrassed and humiliated, attacking ourselves for our lack of skills, our inability to keep up with the conversation. These reactions to social engagement, ruled by emotion and reaction can be devastating to a re-integrating post-brain injury. There our many outcomes to a circumstance such as the one that is described above, each one detrimental to a patient and how they react to social engagement and how other people receive them.

The first, people can feel uncomfortable around you. These are the people I find that don’t really have the slightest clue about the type of battle we are fighting and have to fight day in day out (your true friends will understand and will know how hard this is for you and will make allowances for the social faux pas you make). The second is that you will become more resentful towards your condition, allow that anger, embarrassment and awkwardness to turn inwards so that you feel uncomfortable or even ashamed of who you are. The final one is that experiences such as the one I have described can make you unwilling to socialise and wake you more introverted. The last two issues for me are the most harmful. The ones where you start to despise yourself and your condition and become ashamed of who you are. NEVER BE EMBARRASSED OF WHO OR WHAT YOU ARE. None of us asked for this and the final two issues I have spoken about in this paragraph can lead you down a path towards isolation and loneliness which can then lead to deeper more troublesome psychological/mental health issues such as depression, anxiety or even a form of escapism through something like drugs or alcohol. All of those things are detrimental to our recovery.

Coping With The Unexpected

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I have spoken before about the importance of developing a routine and how a solid dependable one can have a really positive influence on the way we live our lives post- acquired brain injury. One thing I can say though is that too much dependence on a routine to make your life tolerable can have potentially damaging consequences. This is due to the fact (particularly when parts of your routine rely on things that are under the control of other people) that things beyond your control can disrupt your routine.

Take yesterday as an example. I woke up in the morning after having a dream. The dream was about a person (she broke my heart actually but that’s a story I wont go into) so I woke up angry, reflecting on all the ways she had hurt me and how those wounds were still sore. So I was angry before I even started the day. There are things I should have done in the morning to gather myself but I didn’t think properly, I was overwhelmed by a sadness and anger. Already, here was something I can’t control affecting me in a negative way.

After I had a cup of tea and had appropriately woken up, I decided to go into the local town where I would have breakfast and do some work in a local café (this is something I do often as the mile long walk to town gets me some exercise and gets me out of the house amongst people, both of which are important as being a writer can be a lonely profession and by its very nature is a sedentary one). I undertook the walk, with that haze of anger, frustration and sadness still hanging over me like a rain cloud. But I had my routine to look forward to; get a bacon sandwich at my favorite place (they do THE BEST BACON SANDWICHES EVER!) and a cup of tea, go to one of my favorite coffee shops where I have a cappuccino, use my E-Cigarette and listen to music for about half an hour before going to a different coffee shop to do my work.

I arrived in town, still feeling less than happy but the walk had done me some good. I went to get my bacon sarnie but as I approached the doors I saw that the blinds were down and there was a notice on the door that read: CLOSED FOR REFURBISHMENT – UNDER NEW OWNERSHIP. When reading this I couldn’t help but feel as though this might not be my day. I tried to continue as normal, I went to my café to try to enjoy my coffee, enjoy my E-Cig and listen to music. I tried to compensate for the absence of a bacon sandwich with a pastry in the café but it just wasn’t the same. I listened to my music, watching the other people sat outside drinking coffee and smoking REAL cigarettes (bastards! I gave up seven months ago).

My mood was moving further into decline, I was thinking about the girl, I was thinking about the lack of bacon sandwiches and cigarettes. So I moved on to my next café where I could work on my blogs, thinking I could take my mind off of things and concentrate on something else. However, when I started to write, I realized that the topic I was writing about (brain injury and emotional response) was making me think about all the other things in my life that I hate and resent. That hatred normally stays under the surface but today it was bubbling over. Then, the final nail in the coffin of the day; I received my coffee from the barista and received a luke-warm beverage. This was the climax of a day of complete crapiness. I closed my laptop left the cup of (now stone-cold) coffee on the table and walked home with thoughts of the girl that broke my heart, the effects and manifestations of my disability, the lack of bacon sandwiches, the fact that I wanted a REAL cigarette but couldn’t and the fact that someone who is paid to make coffee as a profession couldn’t make one to a suitable temperature, weighing heavily on my mind. I was so unbelievably angry at how the big things in life had all popped up at once to impact on my day combined with a series of little things aiding them in their sabotage of my emotional stability, state of mind and mental well being. This is actually the reason this blog comes to you a day later than anticipated.

That’s Life So…

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My point is that I had expected for things to go my way the other day and in many ways (nearly all the ways I can think of) they certainly did not. So from that experience I’ve had and the issues I spoke regarding socialisation earlier is that we cannot necessarily predict how life and events are going to work out for us. I think it is important that we don’t set too much store by whether or not things go well for us first time or indeed, all the time. I think that what we have to do is to try and do our best to handle situations the best that we can and not be too disheartened when things do not go our way. Equally important is our ability to overcome the disappointments, the times we do not succeed and develop an ability to come back and try again. We mustn’t allow the times where it seems as though the world is against us and we become angry, embarrassed or humiliated to dictate our actions in the future.

There are plenty of disciplines, thought processes and physical actions we can take that can improve our emotional stability as well as our state of mind and mental wellbeing that I will be exploring over the coming weeks. I hope that this has been beneficial to you all and that you will be back to read over the coming weeks. Meanwhile follow me on Twitter @ABIblogger to follow what I am up to. See you soon!Emotional Instability

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Brain Injury Recovery – Employment

After detouring a little last week, going from specific subjects and speaking more of my method of recovery using a process of Gradual Gains, we’re back on topic this week. Don’t worry, I haven’t lost the plot (or have I?).

This is one of the more difficult issues to address after you have suffered something like a brain injury. There are so many factors that have to be taken into consideration, all of those things that came up when I was talking about “Where am I now?”. A few weeks ago and the factors I listed when I asked myself Where Do I want To Be?” All jobs require skills. Whether that is working behind the bar at a local pub and having the necessary people skills, specific technical knowledge to do a job in IT say, or whether it’s a trade job such as carpentry, all require skills and the ability to learn.

Where We Are At A Disadvantage

Now, here is the issue and it comes with the nature of brain injury and it cannot be helped. It tends to be that people who have suffered an ABI are affected in the way that they think, in their cognitive abilities, thus affecting our ability to learn new skills, commit things to memory and not to mention fight the terrible fatigue that comes with a brain injury. All of these factors direct consequences of our injuries put us at a disadvantage when it comes to applying for jobs, finding & keeping work.

In conjunction with the issues that we face every single day, we also have to face the fact that we are currently in a socio-economic situation where the job market is extremely competitive. This does mean that there are some employers who are not enthusiastic about the idea of hiring someone with the type of disability we have. What we suffer from is an invisible disability where, from the outside, apart from perhaps a few scars, we appear to be fine but people cannot possibly see or understand the problems we are forced to deal with each day, even at home let alone in the work place.

What To Consider When Thinking About Employment

There are many things that must be taken into account when it comes to jobs and the type of jobs you should apply for and whether that particular job is right for you.

  1. Know your limits! Do not over exert yourself. Consider the type of routine you have at home, what tires you out? Do you get migraines or seizures, if so; is there anything that triggers them? What skills are not as badly affected by your injury? Consider your working hours in terms of shifts. Does the job you’re applying for suit your strengths as opposed to incorporating your weaknesses?
  2. Consider whether money is essential in your current situation. Do you have rent and bills to pay? If NOT, if you are living at home and money is not as much of a problem (like me, I support myself mostly through the compensation I received after my injury) then perhaps voluntary work could be an option. Not only could you test your strength, test your limits in terms of what is manageable regarding hours and concerning the work environment, it can also be a huge confidence boost when you get out there and mix with different people; it gives you a purpose, after a brain injury I know that sometimes it can feel as though there is no purpose. If money is a necessity then there are benefits available from the state to help support employment or voluntary work if you are unable to work full-time and have no other source of income (however I would add, do not expect the government to do you any favours at this present moment in time in terms of financial support).
  3. The type of work environment you will be in if you get the job. For example, prior to my ABI almost all of my employment history had been in the service industry, either as a waiter or behind a bar. When I was ready to return to work I went back to those types of jobs. Now it turns out that, according to my neurological consultant, this is the worst, most stressful environment someone with an ABI and epilepsy could possibly work in. So it is always worth talking to a consultant or doctor prior to applying for a job or accepting a job offer.
  4. There are some larger companies that receive government grants for catering employment programs specifically for the disabled. So it is worth looking around online for this kind of employment, schemes such as these stands to benefit both parties.

What We Don’t Have To Stand For!

We do have to acknowledge that we are at a disadvantage when it comes to seeking employment. As I have mentioned, the consequences of our injury have left us less able than other people when it comes to certain things involving cognitive or physical challenges or our social skills may have been affected. I would also guess that most of the people who are reading this that have suffered an ABI suffer from fatigue in a big way. Rest periods being essential to us in terms of managing what life throws at us throughout the day.

We have to accept the limitations that have been forced on us when it comes to looking for work and take them into account when looking at job descriptions and the work environment we will be in. There are certain things we do not have to stand for though, mainly, prejudice in the work place. We should be considered just as capable and be just as valued as employees if we are given the opportunity. Here are a few things that you may want to consider doing when taking on a job. The following list is more of a guide to protecting yourself and your position while you are employed.

  1. Ensure that when you take on a job and the terms and conditions have been agreed, that you sign a contract and make sure your employer signs it as well. Please make sure that you read the contract carefully, with an advocate if necessary, to make sure that you fully understand what is going to be required of you. The contract will explain things such as codes of conduct, responsibilities, working hours, benefits, holiday and so on. These being written down will give neither you nor your employer anywhere to hide should there be a legal dispute later down the line. Finally, with the contract, ensure that you have a copy of it yourself to take home.
  2. Ensure that you are receiving at least the national minimum wage for what you are doing. You do not deserve to be paid less than anyone else, for the same job, because you suffer from a disability!
  3. When you have signed the contract for your employment, I would advise you, straight away, to join the trade union for whatever industry it is that you are working in. For a minimal fee (a few pounds a month) you can get legal advice, protection and representation should there be a dispute between you, another employee or your employer in the work place. The trade union also makes disability discrimination a key focus in their aims and targets. It is good to have them on your side rather than having to hire a lawyer at your own expense, which, for many of us is not possible for financial reasons.
  4. If you are dismissed from a job, in your opinion unfairly or that your disabilities contributed to the decision, ask for a letter of dismissal written and signed by your employer, listing the reasons for your dismissal. The next step is to then compare the letter to the contract you signed and see if there are valid reasons for dismissal, again with an advocate if necessary. If you both agree there are not, then contact your trade union.

The Key To Success In the Working World With An ABI…

I wish I could provide a magic remedy that would guarantee success for all of us. Unfortunately though, I cannot. The best advice I can give you is that you need to be ready to acknowledge the disabilities and issues we have as a result of our ABI’s and instead of resisting them, incorporate them into the job search itself, apply for positions where the limitations you have are not going to be as much of an issue.

I would also suggest opening our minds up a little. Even though it does not pay, voluntary work can do wonders for confidence and social skills. If they are issues you are struggling with, then a period of voluntary work could be hugely beneficial. If you find that it has helped you improve certain aspects of abilities that you fought with previously, it can really go a long way to improving your chances of getting a paid job. After all, is that not something we all want? Voluntary work shows a positive work ethic, a positive attitude and capability. All of those factors will go a long way towards achieving achieving our goals and gaining the financial independence we all so desperately want.

 

 

 

 

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.

Brain Injury Recovery – Where Do I Want To Be?

N.B. Before we start, may I apologise for my absence recently in writing fresh blogs inconsistently for https://lifeafterabraininjurydotorg.wordpress.com, the last few weeks have been an unmitigated disaster regarding my epilepsy. You have been fantastic over the last five or six months and I can’t apologise enough. They have changed my medication now though, dosage and type, so from here I’m hoping for progress and more consistency on my part. Thank you again and please follow my blog, follow me on Twitter, my handle is @ABIblogger and share the posts on there, that would be immense! Now, we shall begin…

Going Back A Bit…

The lead up to this blog post goes quite a way back, so let’s start from there. Over the festive & New Year period, I was considering the idea of change and what that exactly entails. When I say change, I mean actual change. Not the usual rubbish you seem to get at that time of year; “I’m going to give up drinking,” or “I’m going to join the gym and go at least three times a week.” Most often, what actually happens is that the first promise is broken by the end of the first day back at work after the Christmas break when, after work, we’re gagging for a pint. The second is broken by a gym membership that is used three times, never used again but continues to take £19.99 out of our bank account every month for the next three years.

The problems with these examples are not the promises in themselves but the way in which they are made. The two examples I gave are very noble promises done with nothing but good intentions for the person’s health. However, while the promises in themselves are good ones, they are very rarely built on a foundation of reality, quite the opposite in fact. They are made in reflexive manner without thinking of the variables in their lives; the constraints on their time, their strengths and weaknesses and, in the end, the promise filled with good intent is doomed to failure.

Where We Are Now?

Now, my first post of the New Year spoke of the nature of self-assessment. Last week after a missed update (due to epilepsy related complications) I tried to lay it all out in the open for you in a way that was manageable in terms of length and that was hopefully readable and something you could all relate to. I would hope that in the month that has passed since I posted A New Year – Self Assessment (https://lifeafterabraininjurydotorg.wordpress.com/2016/01/07/a-new-year-self-assessment/) all of you who have been reading my blog have had time to look at yourself, look at your current situation and ask what is possible and what is not, assess your own abilities & disabilities, strengths & weaknesses, what you enjoy and what you do not (hopefully last weeks post – Where Am I Now – https://lifeafterabraininjurydotorg.wordpress.com/2016/01/28/where-am-i-now/ should have given you some indication as to the type of thing you need to think about) Hopefully, having thought about these things, asked those difficult questions and answered them, having really looked at yourself, you will be able to answer another tough question: where do I want to be?

Where Do I want To Be?

I think there are certain things that we, as victims of Acquired Brain Injuries (ABI’s), can all say. From here I am going to assess the four things in a brief way (if I want into depth on them I’d writing an essay!) that most of us have a burning desire for. Firstly, I will be putting them in no particular order. To give them any kind priority would be insensitive and ignorant on my part as I know that many of you reading this would put them in a different order, may have completely different permanent issues than me, and some people would want to exchange one or two for other things (also I have ways to link up the subjects quite nicely in terms of the flow of the writing and the way it reads). The plan will be to go into these topics in detail in the coming weeks in the order they are listed in today and how to potentially overcome and work around the obstacles that have been put in front of us through misfortune or chance.

Independent Living

When I say independent living, I am speaking in the broadest possible context. Independence can only be defined, interpreted and achieved to the extent that our brain injuries and the subsequent disabilities we suffer from allow us to. Whether we are able to live alone and manage all the complexities with it; complexities such as housing contracts, sorting out direct debits for paying the rent & bills, or paying for insurance and council tax. I myself did not realise the extent of the complexities and technicalities involved in just sorting through the bureaucracy of it all.

Then there are other options such as living with a professional carer, parents, other family members or partners being employed as a carer (for which you can receive a government funded carer’s allowance depending on your income). As well as the carer’s allowance there is also the social housing list and housing benefit depending on the severity of the disability of the disabled person involved and the income of the carer if they are not a professional and are someone like a parent or partner.

Finding Employment

When it is all signed, sealed, delivered, then comes the issue of supporting ourselves financially and accessing the support (both in terms of financial welfare and front line social services. In this section the issue of employment will be particularly important. Finding the right employer, the right type of work for someone in our position, working hours, contracts and unions.

There is also the important issue of not allowing us to be discriminated against by employers. It is unfortunate but it does still happen and in many different ways. The important thing is to recognise when you are being discriminated against and when you are being treated unfairly and how to respond to that situation.

Looking After Myself

Maintaining personal hygiene, eating a healthy diet, regular exercise, cleaning your house or flat, washing your clothes. These are all important things we have to learn to cope with. But there is also the issue of building a social life, socializing with our peers, even forming romantic relationships. It is important to keep an eye on mental health as well as physical. It can be easy to slip into bouts of depression, aggression or mood swings. Here, I am speaking from experience; I know of what I speak.

All of these things come with independent living. Trust me, I have done it on three occasions, I am twenty-six and still living with my mum and dad.

To Have Control Of My Life Back

There are certain consequences of ABI that make life very difficult for me: panic attacks, mental health problems, increased stress, tonic-clonic epileptic seizures to name just a few. What I am going to do is work hard, research and learn as much as I can about my conditions and aspects that may benefit me: diet, exercise, things that may induce a seizure or a panic attack and record what I find. In the next year, I intend to know myself inside and out. So I can begin to take control and move forward.

These are the subjects, in that order, that I will be covering over the next four weeks. So come again next Thursday where I will be talking about independent living, the obstacles that we must overcome and the problems that are presented to us as disabled people. So follow Life After A Brain Injury  get the next update direct to your inbox. For more news and updates, follow me on Twitter. My Twitter handle is @ABIblogger.com. Finally in addition to Twitter, I am just starting an Instagram page which is in its infancy but I would love for you to follow me on there as well, my user name is abi_wordpress_massey

 

 

Christmas; Simple Solutions To Ease The Pressure & Regain Control

The festive season is upon us, the end of another year, a period of cheer and celebration. At this part of the year, convention dictates we conjure up images that cannot help but be viewed as comfortable, idyllic. The image that has been created over years and generations has, at least from my experience, been romanticized to the point where the images and expectations we have in our minds in the month preceding Christmas are never lived up to. I am not speaking just for people who are suffering with a head injury; I believe that to be the case for many families around the country.

The Picture

When we consider Christmas for the first time in the year, when it suddenly dawns on us that it is creeping ever closer, we think of an ideal scenario with images that are out of a Christmas film or story book. The fantasy in our mind shows us exchanging gifts with loved ones beneath a Christmas tree, the smell of pine needles fresh in the air. We create a picture of ourselves wearing Christmas jumpers and Santa hats, eating mince pies and sipping on mulled wine while Wallace and Gromit is on the television. Finally, we see ourselves sat at the dinner table with friends and family, tucking into a sumptuous turkey dinner; we raise a glass as a toast is made wishing each other the best for the year to come as everything for the rest of the day falls into place.

The Reality in General

Christmas day and the build up to it is a stressful experience for all (the exception being small children), most of us don’t take on the responsibility of handling and hosting a Christmas day celebration. We go to our mum & dad’s, our grandparent’s or get invited to a friend’s house to celebrate the occasion. I have only ever experienced a family Christmas, hosted by my mum and dad or my brother or sister, aunt and uncle and so on.

These days are filled with humour, laughter and fun but also with inevitable conflict (my dad banning anyone from entering the kitchen in fear of someone ruining his masterpiece turkey, my niece and nephew arguing about who got the better present and so forth). It is going to be stressful, but we somehow manage to get through it. When that turkey is brought out and we sit at the table for dinner, the bickering and petty arguments stop, we tuck in and toast to the chef, the host and wish each other the best for the New Year. It is a good day but certainly not the image we had in our mind in the time leading up to it. That is generally how things go in the regular household.

The Reality For Us

What if that second option, the stressful reality of Christmas were made all the more demanding by a whole other set of stresses and pressures you had to deal with, in the build up and on the day itself? What about us, the people who certainly aren’t that organized, aren’t as together, people who are more susceptible to stress, fatigue and anxiety as a result of our injuries. Where do the problems, the practical issues that surround the festive period, lie for us and how do we overcome them?

The Present Problem

One of the biggest anxieties I face in the build up to the festive period is the worry about gifts and whom I am buying them for. Firstly, due to the issues I have with my memory, remembering all the people I have to buy for is more than a little challenging. This is made all the more taxing by the size of the family I have: parents, a brother, a sister, their partners, nephews a niece, grandparents to name just a few. When you sit down and actually think about it, there are a lot of people to consider, ABI or no ABI.

Not only do I then have to worry about remembering all the people to buy for but I have to ensure I then get them the RIGHT gift, a truly traumatizing experience in our family. When it comes to buying people gifts, there are the people who will tell you, straight down the middle, exactly what they want. Then there are those who are easy to buy for and are happy to receive a gift from you or the people who have very specific interests and are just as easily catered for.

Then there are the problematic people, the people who give you no idea what it is they want or would like. Not even an area they might be interested in. Keeping what they might like shrouded in mystery leaving you at something of a loss.

A Gift Wrapped Solution

Now, as I said earlier the anxieties of making sure you have remembered all the people you need to buy for and making sure you get them something they will appreciate can be a huge stress but one that can be solved relatively easily. It is a fairly practical solution that I used this year. With my mother in tow, I sat down at the table with a pencil and paper and, with the help of my mother’s excellent memory/organizational skills that all mum’s seems to have, we made a list of all the people I needed to buy for. We also wrote down any of the gifts I already knew I was going to buy and for whom. This left me with only a few people not catered for. With my mother’s help we soon found gifts for those who I found difficult to buy for.

I realise this may seem a very simple and not very extravagant solution but having time to sit down and think and talk through idea’s with someone who also knows the people you are buying for, such as another family member can be a simple and effective way to ease that particular pressure.

Trying To Be Social: Take Control of Your Condition

If you are anything like me, as a brain injury patient, you can find social situations, particularly ones with lots of people, noise and no respite difficult; children shouting, adults talking, the TV blaring and a CD of Christmas classics playing in the background. After a certain amount of this sustained stimulation, I know it about myself, I feel as though there is a pressure building inside my head, I am tired, I start to get snappy with people and irritable with them; I know that fatigue is setting in. Again, the solution to this is a simple one. After a period of time living with an ABI you will start to know your limits, recognizing when you need rest, when enough is enough.

When you start to recognize those familiar feelings, start to feel the warning signs, tell the people you are with. There is no reason to be ashamed of the consequences of your injury, simply inform whoever is hosting the Christmas party, tell them you need a lie down, a nap or just a quiet place to sit and relax. There is no reason why that should or could not be afforded to you.

Christmas; A wonderful Time Of Year

Despite all of the stresses that come with it, Christmas is still one of my favourite times of the year. It is one of the few, wonderful times of year where we can all get together and show our appreciation for one another. It should not be forgotten though that despite the idyllic pictures we have developed in our minds over the years it is a very stressful time of the year for everyone.

As well as that it should not be forgotten that for people such as us it is even more stressful. One way to help ease that pressure is to communicate with friends and family members and try to explain to them the type of issues we are dealing with. If we can find simple and practical issues to help solve our problems, alongside that communication and being in an environment with loving, supportive people, we can make Christmas the fun and festive day we all know it has the potential to be.

Overcoming Negative Influences & People

My name is Tom; I am 26 years old and the survivor of Acquired Brain Injury. I focused a lot on the importance of self-belief as well as having a supportive group of family and friends around you. These things can make huge difference throughout your recovery. Having faith in who you are and what you are doing combined with words of encouragement, congratulations as well as having a shoulder to cry on when things get tough, can in fact be the thing that is the difference maker in the rehabilitation process. Those supportive sentiments of close friends and family go a long way towards building up that sense of self belief, that belief that there is a life after a brain injury that can be productive, fulfilling and exciting.

But what about the people out there who seem to do their best to exude sentiments that make us feel the opposite to this, people who say things that are seemingly designed to try and bring us down. Having to accept the presence of people like this has started to make me think. When engaging with people, aside from the close group of people who have supported us throughout our recovery, do the opinions of other people, what they think of what we do and who we are while we go through our recuperation, do their opinions really matter?

Don’t Let Them Bring You Down!

My answer? My opinion? No. These people and their opinions do not matter in the slightest. We all have a rough target (I would assume), a goal we want to reach, a place we want to get to; the important thing is to believe that you can get yourself there. This is the thing, brain injury or no brain injury, we are, all of us unique. We all have talents, traits and factors that make us valuable, talented and the lack of a better word, special (I know it sounds cheesy and I swore I would not get too sickly but I couldn’t think of another way of putting it).

We need to keep the Faith that these talents and abilities, combined with a enough hard work and determination and maybe a little bit of fortune, Will eventually take us where we want to go and where we deserve to be. We, as survivors of brain injuries, of all people make better than anyone that life is not going to necessarily be fair. It will be hard, unfair and I’m kind where it can be. When life knocks us down, we have to get up, dust ourselves down and get ready to go again.

Trust In Yourself

I realize that I have covered issues regarding self-belief and confidence in the previous post but it does need to be mentioned again. If you cannot rely on and believe in yourself it does become very difficult to set yourself apart from the crowd and understand that you do not necessarily need the approval or the endorsement of others for your own actions.

It seems particularly odd to me that many people seem to have especially strong opinions about things that have absolutely nothing to do with them, that will not affect them and that they know very little about. Yet, they seem to think it appropriate to judge a person when they actually have no facts or any context, the two main things that tend to dictate the decision-making process. We have to acknowledge that in certain environments people are going to talk, gossip and form opinions based on those two things. You must have the courage and the awareness to realise that, even though it is not ideal, perhaps you’re better off on your own and without these people in your life.

Friends, Relationships & Trust

This is a difficult subject for me to address. I found, as I know you all have, that’s a brain injury changes your abilities in many ways, particularly in the ways that you perform socially.

I found that after I suffered my injury, many people I previously counted as friends once all that interested in staying in touch any more. The reason? I have spent some time asking myself this question over the last two years and I have in fact come to a conclusion. The truth is my health situation meant the time is now something of a burden, an inconvenience. My situation disrupted the norm because certain allowances had to be made for me. As this became more obvious to the people who were, at the time, the people I counted as friends it just became easier to not invite me to do things at all.

I have had plenty of time to think about this question. When I do now, I realise that I am not hurt by it. In fact, to some degree, I even understand it. I do not resent them for it, when I see them now we still get on very well. It is simply the way life goes; friendships will breakdown. It is an inevitable and regrettable fact of life.

But this is not what I am here to talk about what I want to say to people who have suffered a brain injury, if you find yourself associating with people whom you have not met before, do so with an element of caution. Something that I realized quite quickly when I started to socialize with my peers again comma is that there are people out there who will try to take advantage of us; treat us like things that into time that and the only be a friend to us whenever is something tangible to be gained from it from their perspective.

This may sound incredibly negative and I am not suggesting that we distrust everybody or in any way you cut ourselves off from society. All I would say is that after her brain injury you, I, we are very vulnerable and an easy target for people who would want to take advantage. As such I would suggest being very selective as to whom we trust. Since my injury, after experiencing people who, on reflection, What obviously trying to take advantage of me, I have kept a very small, very close circle of friends to support me alongside my family. After a time you will know who these friends are; they will be the people who come through for you time and again, the people who are there for you without you having to ask.

Let The Haters Hate…

Now, I realise that heading maybe far to pop culture for me to pull off, but in this case never has a truer phrase been said. As I said earlier, relationships breakdown that is an inevitable part of life; however, there will be some people who tried to use your injury as some kind of excuse for that breakdown or as an excuse to treat you differently. An example from my own life, when it became obvious that, due to my epilepsy as well as my brain injury, returning to work would not be possible for me I have been accused of having a lack of ambition and called lazy as a result. I have been told that because of the allowances that need to be made for my conditions, it will be nearly impossible for me to find anyone who would want to get involved with me romantically.

When this kind of nastiness occurs, we just have to tell ourselves that these are merely weak people trying to make themselves feel strong. Their opinions are being stated to cover their own insecurities. Deep down, we are much stronger than them. We must rely on our inner strength and keep the faith the what we are doing is right, that we know ourselves and our own situation better than other people do. Finally, we should acknowledge that we are different, the things we do are different because they have to be and I, for one, am proud to be different.

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.