ABI: Mind, Body & Soul

ABI: Mind, Body & Soul

Here is our first “ABI: Mind, Body & Soul” blog post. I hope you enjoy and can gain something from it. For the picture below describes how I felt for a long time after my ABI.

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Mind – Mindfulness

https://www.psychologytoday.com/blog/the-courage-be-present/201001/how-practice-mindfulness-meditation

Mindfulness meditation is a technique that when used in the right way can be extremely useful in gaining a sense of piece and control and eases the feeling of unpredictability that goes on in the mind of an ABI patient. If you’re an ABI patient you’ll know, issues regarding mood levels, state of mind, and positive vs. negative outlook are difficult to manage. Trying to find that sense of contentedness and stability in your mind and thought processes can seem like a never-ending struggle. Mastering certain aspects of Mindfulness can help you manage these issues. I will not lie to you; it is not an easy thing to master, the particular aspect that I am talking about especially. I would also add that you DEFINITELY CANNOT master it overnight. It can be a period of weeks and even months but please, don’t let that deter you because it has done wonders for me.

What Is It?

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It is a case of disciplining yourself, not allowing your brain to think the thoughts that lead down a road to depression, anger, and anxiety etc. all of the things that we struggle with as ABI patients, heading them off before they gain momentum and simply being yourself in the moment with no thoughts, anxieties or worries.

The first step of that is learning the thought patterns of your brain. Think of your thoughts almost as a road map, you have to learn that road map inside out.

For example, say you have one of those moments where you suddenly realise that you feel down and depressed, in and Mindfulness it is a case of analyzing the thoughts you were having previously: what was I thinking about? Was it a memory? Was it a hypothetical scenario? Was it an imagined situation? Was it an encounter with a particular person? Was it thinking about things outside my control? Ask yourself the question “how did I get here?”

How To Master The Process

For thoughts to get to a certain place there is a trail, a road to that negative destination. There is almost an element of detective work about the process: looking back through the thoughts you had previously that led you to the place you are now. Analyze those thoughts and see whether they cause a negative, positive or passive response. This can be difficult to do and requires a lot of hard work, discipline and practice. I realise that memory is a problem for people like us with an ABI so when trying to recall your thoughts and analyze them, maybe try jotting them down the subjects and responses in a notebook (this will also come in handy later on).

As time goes on and your unpredictable moods continue (unfortunately having to live with them is all part of the mastering the discipline) and you continue the analytical approach of examining your thoughts and how you respond and writing them down, you will gradually start to build up a list of subjects that you do not react well to (and perhaps another which is made up of things which have a positive effect). So you have the beginning of the trail that leads to the negative places we so desperately avoid.

What Is The Outcome?

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The final piece of this process is the most important one and probably the hardest. Once you are aware of your thoughts, where they lead and the emotional responses they cause, it becomes a case of training your mind to block off banish the negative thoughts if they occur in your mind. Actively say to yourself “No, I’m going to think about something else,” if that is necessary. Another option is to find a distraction, for example try learning a poem or the lyrics to a song that you like and repeating them to yourself or turn to one of the thoughts you noted that had a positive effect, a comedian you like. You will notice that these positive thought process can gain momentum as well. The most important thing is learning where your thoughts lead and being aware of the effect your own mind can have on you. Learning this technique can help you to use your mind to be positive, be happy and build confidence.

It also allows you to spend time, as I have said, just being. Being able to clear your head of negative thoughts and live in the moment, in the here and now is an amazingly freeing thing. I don’t know anyone who has truly mastered it, I think the only people to have done that might be monks living in Tibet but if you can get to grips with it and set aside some time in the day to practice and discipline yourself to be able to do it even to an average standard, then your day to day life and state of mind will be hugely improved.

Body – Sunrise Wellbeing Tea

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NB: To anyone new to loose leaf tea you do need a proper teapot and follow the instructions regarding serving methods to get the best results. Also I must advise you to check the ingredients on the packets for information regarding allergies or for ingredients that could aggravate or exacerbate any specific conditions.  

Before this collaboration with my friend Chelsea from @TastetheTeaBlog (Twitter) I was very dubious and wary of green, herbal and fruit teas. My experiences had consisted of tea bag Company’s mass-producing them with very little care or expertise. However after ordering the loose leaf teas Chelsea advised me to try and properly brewing them I found that my opinion has been changed.

I chose to drink Sunrise Wellbeing tea (as the name suggested I should) in the morning. As someone used to builders tea in the morning it was a little different I have to say. However, once I got used to the idea and the taste of green tea leaves, I started to pick up a few other tastes in there as well. I found the subtle taste of ginger and lemon to be extremely pleasant, extremely refreshing and thirst quenching. I have to say that I felt in a better mood after drinking it. It was a more uplifting way to start the day.

Many green and herbal teas also offer less caffeine. They are a more natural way to start the day using the goodness of nature and the benefits it provides. Order some Sunrise Wellbeing tea for yourself from the following link and start brewing! http://www.birdhouseteacompany.com/shop/green-tea/sunrise-wellbeing-tea/

For more information regarding teas of varying flavors and different properties and ingredients head over to Chelsea’s blog http://www.tastethetea.co.uk.    

Body – Probiotics

We often see products being advertised these days using the word “Probiotic” as an influential factor. It sounds like a fancy word and it’s surely a positive thing to have in drinks and yoghurts, or else why would they be telling us about it? In advertising they only tell us what we want to hear and what is good. A good example is soft drinks companies. They tell us what is good about the product; tasty, refreshing, best served chilled with ice on a hot da. What they exclude is the bad; there is so much sugar in them that they are a big contributor to the increase in diabetes and obesity over the last five years in the UK (http://www.nhs.uk/news/2013/02February/Pages/Latest-obesity-stats-for-England-are-alarming-reading.aspx). The thing is though that many people do not know what this fancy word that is obviously supposed to be good actually means.

Well, probiotics are essentially good bacteria or as stated on http://www.medicinenet.com/probiotics/article.htm “live microorganisms that, when administered in adequate amounts, confer a health benefit on the host.” Most of these probiotics, good bacteria, are available in specialist dairy products. The main areas these products will produce results is in strengthening the immune system (Activia) and the digestive system (Yakult) renowned for aiding those who suffer from the many forms of irritable bowel syndrome, as well as being available in products such as Activia probiotic yoghurts. If we can keep the key systems that keep us going well maintained and provide them with things that will be beneficial to their functioning, then I believe we should do it. I can assure that when our bodies feel good inside the feeling spreads to the mind.

Soul – Talking to Positive People

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When we are feeling down engaging with the right kind of people can have a really positive impact on our frame of mind and our thought processes. We all have at least one person in our lives, whether a friend, family member or co-worker, who has that ability just to make you feel better. They encourage you, they make you laugh, and they stimulate your mind. Whether you go to see them in person or talk to them over the phone is up to you. I do believe being able to see and touch a person, read their body language and expressions are important but that’s just me.Whatever it is they are providing they have that ability to make us feel good and that’s important.

Having these people in your life is so valuable. Take my Granddad for instance, where my parents see it as their job to keep me grounded and to not get carried away he thoroughly encourages me to get carried away, to have dreams and ambitions that may be a little out of reach. If you have the foresight or ambition to dream about achieving certain goals and vitally, someone who can validate the dream and not treat it with scorn or ridicule but encourage you and believe in you, then you really have someone in your life worth holding on to. After all an ABI/TBI can take away so much from us, why can’t we dream a little? Aim for the stars, you might only reach the moon but its still a bleeding long way!

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Post-ABI: Depression

Post-ABI: Depression

Last week, my intention was to highlight and emphasise the types of internal crises ABI & TBI patients are going through. The early stages, and when I say early stages I am talking anywhere up to the end of the year, maybe two, are a case of discovering who you are, you’re abilities, aptitudes, likes/dislikes, and thing you can and cannot do. Again as I stated last week when these changes have occurred in an instant, seemingly overnight, it causes a huge emotional upheaval. The final thing I want to highlight that I mentioned last week was that an acquired disability has a wide array of contributory factors (age of the person, how the disability occurred, at what stage in their life they’re in) that lead to different reactions from different people in terms of coping with the long-term effects of the disability. For example, some people see things in different ways and from different perspectives depending on what stage of their life they are in. This is what I was trying to get across when I talked about “a basis for comparison”, which was an extremely insensitively worded explanation of what I mean and was a case of me trying to explain a very complex issue in a short sentence or two.

I suppose what I am trying to say is that the human psychology surrounding ABI or acquired disability of any kind is such a huge field full of variables that depend entirely on the circumstances of each particular person. It is a subject I am nowhere near qualified to tackle or explain. So from this point, when it comes to human psychology, I will only speak from my own experiences and how I felt. That is something I am qualified to talk about.

NB: Please note that I am NOT a mental health professional. I would also add that the advice I am giving is for standard mental health issues such as depression, anxiety, stress etc. and NOT for any of the more serious, specific conditions diagnosed by a doctor or mental health professional (i.e. Bi-polar, Schizophrenia). Any advice for potential solutions or ways to improve situations regarding these conditions found in my blog only helped me and worked for me as an individual. IT IS ONLY OPINION & ADVICE BASED ON HOW I MANAGED MY CIRCUMSTANCE & CONDITIONS.

Mental Health Issues I Struggled With

Mental Health has become a hot topic of conversation in the UK for everyday citizens. It seems as though more and more people are suffering with issues such as depression, stress and anxiety are conditions that are becoming more and more frequent. So this is obviously one of the more important issues to address to people who have suffered the sever trauma of something such as an ABI or TBI. There is a lot of media attention at the moment from more liberal media sources, charities and on the Internet focusing on issues regarding depression and mental health so I will do my best to provide some brief info on the conditions, how I felt and some web links to sources of info that can better help in terms of what you are facing and the medical causes of the conditions, before next week where I will look more in depth at each individual condition and the way that it affected me and the way I handle and manage them.

Depression

This is a key one to look out for. All aspects of mental health are important but after something as traumatic as an ABI or TBI it is essential in the long term that a patient finds a way to manage any issues regarding a negative state of mind and depression. Finding a way to be positive is difficult and it can seem as though all hope and good in the world is gone when you find yourself in a situation where you have to adjust to being a new person. As I said in the last post (rather bluntly and insensitively) that as people with an acquired disability, we have a tendency to look back at things we have lost, I know that I did. It is essential to not let yourself drown in the flood of emotion that comes with those losses. I know that this seems like a cliché and just something people from the outside say when they are looking in but it is important to look at what you do still have rather than what you have lost. Also it is important to remember (something I often lost of during my recovery and sometimes do so today) that people are trying to help you. There is only so much other people can do for you though. It is a case of finding a way to manage negative thought processes yourself in a way that works for you.

It can help to make a list of the things you still can do, or a list of things that you want to do. I found that setting myself goals helped immensely. As did the knowledge that I was fighting for something. The fight against myself and against the adversity I face every single day is what keeps me going most of the time. I think it is a case of having to find a reason to keep going. My reason is to prove everyone wrong. This may sound spiteful but the knowledge that I CAN AND WILL carry on and succeed and prove all those people who gave up on me wrong. The doctor’s who said I wouldn’t be able to do certain things, the “friends” who bailed as soon as MY life was too hard for THEM to handle, the strangers who have mocked me and the employers who didn’t want to keep me on because my condition was too much hassle. The fight to prove to all of these people that I can do things that they never even thought of or aimed for is what keeps me fighting every day.

Lifestyle Tips

This will be a fairly short paragraph. It is mostly just basic things that can help our bodies feel better which can in turn help ourselves feel better in the mind. Eat and drink a healthy and balanced diet and try a few new things. I have recently been getting into herbal and fruit teas. These are full of anti-oxidants, nutrients and vitamins. When our body is receiving the right things it will do us a favour right back. Feeling good in your body will make the mind feel better.

Plenty of exercise does incredible things for the body and the mind. It oxygenates the blood, gets the blood pumping and energizes us for the day ahead. Walking just a solid mile or two each day improved how I felt immensely, now even, nearly seven years on I still try and include some exercise into my day. Again try something different in terms of exercise, maybe yoga or Thai-chi, each involve deep breathing, stretching and clearing the mind, all of which are helpful in releasing endorphins into the bloodstream, making us feel good, happy and energized.

Finally, this one is a fairly obvious one; give up drinking, smoking and any other recreational drugs. While these things may seem like an escape they only exacerbate issues like depression, can lead to addiction and an even further degeneration of your health.

Advice For Carers

If you are a carer or family member reading this and you are concerned about issues regarding depression there are certain things to watch out for, certain signs. Look out for anti-social behavior when you converse with them, watch out for the patient withdrawing for long periods to their bedrooms for example, over eating (or under eating for that matter), not wanting to be social or leave the house. After that list of points, the final one that is perhaps the most important; really listen to what they say to you. You know when someone says something that is extremely alarming and perhaps even indicative of a future action that could be harmful to the patient themselves or others. The first thing I would say is most important that if a circumstance such as this occurs that you do not brush it off, you must take it seriously. If someone says something that is potentially very serious or could have very bad consequences we can be very much out of our comfort zone. However, do not be afraid of talking calmly and clearly to a patient about what they have just said, asking for (not demanding) a clarification. Secondly, if you are still concerned and feel it’s necessary reach out to your neurological consultant or a brain injury nurse if you’ve been assigned one to ask their advice. There are also charities and forums that can be helpful: Headway UK has chapters for different areas of the country. The Child Brain Injury Trust has a lot of useful resources you can use as well. Finally don’t rule out broader search on social media like Twitter, Pinterest and on blogging sites like WordPress. There is also Mind, the UK’s leading mental health charity who can provide you with useful advice and resources.

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

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

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

Affecting All Aspects Of Life

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

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

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

Where Last Week Comes In

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

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

Deep Rooted Confusion & Anger

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

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

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

Looking To The Future

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

A Cruel World In The UK

At the end of my last post focusing on The Importance Of Family, it may have seemed as though I was starting to wander of topic when I was speaking about the current political and media discourse surrounding people with disabilities. I do get passionate when talking about that particular topic because when I watch the TV news or read a newspaper, it always seems to be an outsider looking in and telling us what having a disability is like, how we feel and what our aims are, based on very general, blanket surveys and statistics. That’s not to say that those opinions and statistics are unimportant but it does seem as though the use of expert opinions and statistics are being used in the wrong way; it seems to me that the current government has, grabbed the wrong end of the stick. As I say it may seems as though Im’ having a political rant but it is going somewhere, I promise.

All Good Will Is Gone

I read in a recent article that the percentage of the UK’s disabled population and lives on funding from the welfare state that wants paid work was in the sixtieth percentile (which is actually not bad when you consider that approximately half of the UK’s disabled population are OAP’s). These stats have been used as a tool to cut the welfare expenditure currently being paid by the government in order to reduce the deficit and increase the current spending budget. By using this statistic they have been able to justify cutting benefits such as the DLA (Disability Living Allowance) and introducing PIP (Personal Independence Payment, a non means tested, weekly payment based on the extent of your disability and how it affects your daily life. A payment much less in terms of the amount paid and is extremely difficult to access), cuts to Carer’s Allowance and an excessively strict screening process to become a carer, the cut to Tax Credits, Housing Allowance and so much more. All of these things contribute to people with disabilities and people living in poverty feeling ashamed of their disability and/or hating themselves for being the person they are and the life they lead.

The Power of Government & Media

“Make up your own mind, don’t let other people tell you. What we are saying is take a critical view, find out about it. Don’t believe something just because someone tells you to. If somebody says something, question it and work it out for yourself.”

– John Cleese

How they have justified these actions? The current government has stated that these cuts to the welfare state are to incentivize those people that make up the sixtieth percentile of people with disabilities that want to get paid work into actually doing it. The implication of that statement is that the disabled population of the UK have not been pulling their weight, have not been trying hard enough and that their inability to find paid work is because of their own failures and laziness, not the disability that they wake up and live with every day. The idea that people with disabilities are taking advantage of a welfare state designed and implemented to look out for their wellbeing, due to a lack of incentive, as opposed to being unable to do certain things due to their condition or disability is preposterous. Especially when certain disabilities can rule you out of most and, in some cases, all forms of employment. The accusation is that people with disabilities rely on the state to help them get by in life and that this attitude of reliance on government aid and welfare support from the disabled population is unacceptable. Isn’t that the point of a welfare state though, to look after the poor the weak and the vulnerable?

For further insight into the type of cuts and welfare reforms implemented by the coalition government since 2010 and now being expanded and hammered home by the Conservative government follow this link to statistics produced by www.unison.org.uk, the public service trade union.

When this is the narrative being produced by both politicians and certain aspects of the media, it is humiliating. The implication that the people with disabilities in the UK are a bunch of lazy, scroungers taking advantage of a system put in place to help us is terrible. When it is a dialogue being discussed by those who are in positions of power and influence it is even worse because other people hear it on TV and read it in newspapers and magazines and start to believe what they are being told. This dialogue becomes a virus and spreads to the point where a stigma attaches itself to the subject of disability. In my view, the problem is that people don’t think for themselves anymore, nobody ever questions what they are being told; they seem to just accept it as truth.

How I interpret These Changes

As a disabled person who has gone through many of the different processes in welfare, health and social care, I can only speak for myself. I think though, given the current mood of people with disabilities and of the poor and working class people in the UK that I am not alone.

These narratives I have mentioned in the above paragraphs that are being fed to the UK public are demeaning and diminish our disabilities in the eyes of the general population. The new model of welfare, health and social care is one based on doing more with less (an impossible feat by it’s very wording). Access to the services is based on a fixed model, with fixed criteria and no variation or accommodation for individual circumstance.

We are at a stage where the model is almost like this; an authority, one that hasn’t met you before, places a mark on the wall at two meters. They then state that to be eligible for the financial aid and the many programs of health & social care you need, you have to be equal to or exceed this height. Anything under that, even if you’re one meter and ninety-nine centimeters high, they say: “YOU DO NOT QUALIFY. YOU ARE NOT DISABLED TO A SATISFACTORY STANDARD THAT WE HAVE IMPOSED, YOU DON’T MEET WHAT OUR IDEA OF DISABILITY IS.” What the current UK government are essentially saying is that disabilities do not include variables such as I was born this way, or (what we are here to talk about) I had a brain hemorrhage (for example) and now I’m not good at interacting with people, I do suffer from fatigue, I can’t retain information as well as everyone else. But I can walk and talk, that’s enough for me to get a job. None of the different aspects and manifestations of different disabilities seem to matter anymore. We all have to be the same in terms of the definition of disability. Does nobody else see the flaw in this model? Am I alone here?

(Very Few) Exceptions To The Rule

When the systems implemented by the government and reinforced by narratives from the media, as a person with a disability, I can say that I have since felt lousy. Authorities have told me that I do not qualify for certain aspects of a welfare and health and social care system that we pay for as citizens of the UK with our taxes (paid by ourselves, parents, grandparents and great-grandparents, mine and yours). Instead we are told that there is not enough money in the pot and ill, vulnerable and disabled people are sent out to do their duty of a hard days graft. After all, “we’re all in this together” (accept the wealthy elite who seem to see tax as beneath them).Is this what we call a civilised, compassionate democracy?

A Conclusion: How All Of This Makes Me, A Person With A Disability, Feel

Being forced into work with a disability such as an acquired brain injury wreaks havoc with your mind. I started to question myself. I had been judged to be just as capable as everyone else, so when I realized that I obviously wasn’t, I questioned why I was doing so badly (a question with an obvious answer). But the state had said to me, “your acquired brain injury and all of the ways that injury manifests itself have been measured at only one meter and ninety-nine centimeters, not enough I’m afraid to be eligible for the welfare and services you have applied for.” The way I saw it, if the state has not judged me as disabled and ineligible for support and with all the things going wrong for me, there must be something wrong with me as a person. “Are the things people at work are saying true? Am I lazy? Am I not a team player? Am I rude, inappropriate and antisocial? Why am I getting so tired when nobody else is? I always seem to forget things, why is that?” You start to question your own ability, disability and it’s manifestations and you turn any anger and hatred that was previously aimed at the disability inwards, on yourself. You start to hate yourself and think you don’t have any value when you have been sacked from a job for another mistake or for an incident which is actually a consequence or manifestation of your ABI.

When this happens our self-confidence and how we see and value ourselves plummets. These are the type of things that carers do not get to see or feel with brain injuries and in previous posts (Only lessons and Simplifying ABI Recovery) I mentioned the dangers of not seeing the bigger picture or only seeing 1 dimension of a brain injury patient’s recovery, this is the type of thing I was talking about. Finally, when talking about the role of the family in last week’s post there was something important that I missed, seeing an ABI in all three dimensions is so important because the family are the people who can help build a patient back up when he or she continues to get knocked down in unkind world.

Thanks for reading, sorry if I droned on a little this week but I really want to emphasise some of the negative influences around at the moment as next week I will be moving onto the topic of mental health. To see more of what I am doing, follow me on Twitter (my handle is @ABIblogger) or follow my me on Instagram where my handle is abi_wordpress_massey. Thanks again and please, join the mailing list and follow me on WordPress to to raise awareness on ABI & TBI.

The Importance Of Family

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

What My Family & I Have Learned

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

What Can The Family Provide After An ABI

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

-T. S. Eliot

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

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

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

How Does ABI Fit In To Current UK Society?

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

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

Playing To Win

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

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

Why We Shouldn’t Simplify ABI Recovery

This post is aimed more toward family members and those living in close contact with patients recovering from ABI’s and TBI’s. It links on quite nicely from the last post Only Lessons and was not a subject I had really thought of covering while I had been planning out my blog posts and yet here we are. Last week I spoke about the slightly less tangible aspects of brain injury recovery. These are areas that in some places, even after six and a half years when I think I have seen, felt and heard it all, still throw surprises my way. So after last week I thought very hard about what it was I had said to you and tried to add another carriage to that train of thought.

Something To Remember…

Unfortunately, much of this post has a “what not to do” kind of message. I know what some people reading this will be saying, and I completely agree with you, that “it is so hard to learn the best way to approach recovery and what to do when things become uncertain and when things don’t go right and its easy for him to sit here and type away telling people how to and how not to approach a type of recovery with so many variable factors”. If that is how this post comes across, I sincerely apologise but the truth is that, after discharge, families get very little outpatient support. It cannot be just my family and I that has seen and experienced the majority of outpatient services, for ABI patients and carers alike, and believe the majority of them to be a complete joke. So the reason I am writing this particular blog post is to try and help you bypass some of the lessons our family had to learn the hard way.

What Can Happen When We Don’t Properly Analyse The Outcomes Of Challenges During ABI Recovery?

If you happened to catch last weeks post and if you have been following me on Twitter, I spoke about not seeing and defining the outcomes of challenges as either success or failure, not to see things in that narrow, one dimensional frame of mind but try to look at the bigger picture of brain injury recovery particularly when a patient takes on a new challenge.

It is important to ask where were the strengths? Where were the weaknesses? What positives or negatives were there to take from the experience? Were there any external factors that may have affected the patient when they took on the challenge (distractions such as loud noises, crowded places, invasion of personal space)? The list of questions and factors that need to be considered when analysing the outcome of a challenge taken on by an ABI patient in recovery is huge. It is important that you think of it as huge as well because basically what happens when we don’t properly analyse and try to understand the outcomes of challenges faced by ABI patients, we think of it in simplistic terms and downgrade the severity of the condition, its long-term manifestations and consequences.

What Are The Sociological Outcomes Of This?

If we have simplified the consequences of something as complicated, devastating and life changing as a brain injury, it is inevitable that we will then simplify the outcomes of challenges an ABI patient faces down to naïve one-word definitions (as I mentioned in my previous post) such as “success” and “failure”, does it not follow the pattern that we will react in a simplistic way? It is likely, given preceding events, that reactions will be based off of emotions, or worse, based off of the abilities of non-disabled people (the reason I say that the latter is worse is due to the fact that none of us can keep our emotions in check 100% of the time). To react in a way where we compare outcomes to challenges based on the abilities of people with a disability to non-disabled people is discriminatory, plain and simple.

What Are The Emotional Outcomes Of This (For The Patient)?

To start off with, let me say that I am very fortunate to have the parents I have. Without them I would never have got through this period of my life where my world was turned upside down. They have never expected or asked for more than I could give. We have tried things and they have not gone to plan but never once was I blamed for any mishaps that have happened along the route of recovery. Any disagreements we have had or any time I have felt hard done by is when (as I mentioned earlier, emotions cannot always be kept in check).

If I may give an example, when I am suffering especially badly from fatigue my memory, speech and thought processing are particularly affected. It takes a long time for my thoughts to find the words I want, then for my brain to send them down to my mouth and for my mouth to sound out the words. My sentences become particularly disjointed and filled with lots of “err’s” and “umm’s” between words. When relaying a phone message during our recent house move, one of my parents lost their patience with me as my brain/speech was affecting my fatigue/anxiety and meant I was not delivering the message correctly. When this happened it made me feel extremely angry and a little hurt. It was only because it was one of my parents and the stressful context the disagreement occurred in that it didn’t affect me more deeply. It has happened on other occasions and when it first happened it was extremely hurtful.

 

What Can We Take From This?

“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

Albert Einstein

I believe that the above quote says it all. When an ABI patient takes on a challenge there will always be positives and negatives to be taken from the outcome (next week I will focus more on the positive approach methods to recovery). More importantly, there are lessons to be learned that will inform our recovery for the future. It is important to remember this and ensure that we do not allow ourselves to try and simplify a complex matter into something trivial and permit thoughts, led by emotions, confusion and a fear of change to rule our reactionary processes throughout recovery.

We, as people, are all different. The key to finding a successful route through the minefield that is ABI recovery is to be as flexible and open minded as possible and find ways to approach recovery using the tools to hand and using tools that suit the abilities, emotional state, personality and goals of the patient.

Thanks for reading. I hope you have found my post interesting or useful. Follow me here on WordPress and join the mailing list to receive the post via email every week. To stay up to date with my other goings on, follow me on Twitter (my handle is @ABIblogger) or on Instagram where my user name is abi_wordpress_massey.

 

 

Only Lessons

Since the New Year, the majority of my posts have been focused on the life changes we have had to accept as people with a disability. The main message of those posts, Health, Independence, Employment and Taking Control Of Our Lives Back (a message I’m hoping I managed to get across accurately and clearly) was that we should not settle for less in terms of our expectations of life. The other thing I was trying to communicate was that once we get to a certain point, i.e. when we have acknowledged our disability for what it is, a disability that makes things harder for us in life, then we have reached a milestone. At this point we can really take off into different and, in some cases, slightly less tangible areas that really are about your own state of mind, the type of person you are and adopting a certain mentality regarding Acquired Brain Injury.

This post is predominantly going to be about positivity, negativity, how you see yourself and the way you judge certain situations and their outcomes (that’s what I meant by those slightly less tangible aspects of brain injury). Really, those thought processes are what can determine the degree of success that an ABI patient has in their recovery. After all, we are all individuals and we are all different and it is for that reason that I see this post as particularly important. I hope you will see what I mean by the end of it.

Failure

  • FAILURE (noun) – failing, non-performance, lack of success, an unsuccessful person or thing.

Failure is a horrible and ugly word. The English Dictionary defined this word with negativity etched into that definition (which can be seen above) in all of its meanings. Taken at face value, if we were to interpret meaning purely in the academic sense and how the dictionary defines it, there is no way in which this word can be used which has any positive connotations.

For you now, as a patient, carer, family member, get yourself into a state of mind where this word no longer exists. Erase it from your vocabulary if you are in any way involved with an ABI recovery. This ugly word’s use is one that should be carefully considered taking into account the dictionary definition I have provided above, when you are dealing with anyone, let alone someone who is going to be as emotionally sensitive as a person recovering from an ABI.

So what word do we use when the inevitable setbacks that will most certainly occur rear their ugly heads? Well, what we do is we think about things in context and we most certainly do not give the outcomes of a challenges a simple a one-word definition.

Engaging With Things & Testing Ourselves

After we suffer something as traumatic and life changing as an ABI, we cannot shut ourselves away from the world. We must be brave and throw caution to the wind in trying certain things and conquering new challenges. Of course this is, again, within context. I’m not saying we should try and climb Mount Kilimanjaro, but when opportunities and challenges that we see as manageable present themselves then we shouldn’t be afraid to try them. It is all about perception and how we scale the size of the task in front of us. Weigh up the potential positive outcomes against the potential negative outcomes in line with the situation of the patient. If you feel that the overall potential benefits outweigh the potential negatives, then give it a try (if you are a patient reading this, perhaps with the help and advice of an advocate or carer). Not only does this ensure that we are out, engaging with the world but it also allows us to test our strength; find out where we are weak and where we are strong and areas where we should be focussing in terms of trying to improve.

Secondly, one of the key things I have learnt over quite a long period of time after my ABI was that recovery progression (progression is the key word there, that is what we all want for ourselves and our loved ones, progression in life) was essentially an elongated process of trial and error. Trying different things, new things and even old things that seemed unfamiliar to me post-ABI. Trust me when I say this, sometimes I came back from outings on the verge of tears because I couldn’t handle the task I had tackled and I was tired, frustrated and angry. Sometimes I had mini emotional breakdowns in public because someone had barged into me and invaded my personal space or the amount of stimulation I was getting from being in a loud, crowded street was too much. Sometimes I wanted to give up. But I didn’t.

When my parents and I realized that certain situations and tasks were too much for me to handle, we tackled something smaller. If that didn’t work out we reduced the size of the task further still until we found something manageable. Even if the task to stimulate a patient is something as simple as going to a park with a parent or carer and feeding the ducks, it is a task that the patient can do, in a relaxed atmosphere that they can enjoy. It is then a case of, when the patient is ready, moving up to something slightly bigger, something more challenging and see how they get on with that. I would also add at this point, don’t progress too fast. Communicate regularly on whether they still enjoy whatever simple task has been chosen. Or, even wait for them to ask you for a change.

No Failure, Only Lessons

I guess what I am trying to say here is that there is a steep learning curve when it comes to recovery post-ABI for patients, parents and carers alike. You musn’t be afraid of trying new things and gradually challenging yourself more and more as the road to recovery goes on. When setbacks occur for a patient tackling a challenge, do not define the outcome of it in one-dimensional terms of success vs. failure. Try to see it as a lesson learned and know that, for now at least, that challenge is too much. Take a step back, look at something smaller. Or, you may have found an area where a patient is managing quite well, a huge positive that you can jot down when planning the progression of the recovery, you now know an area where he or she is capable, that you can build from. Either way, do not judge any experience as a success or a failure but as a lesson learned. Ny learning as we go we can build up a programme that will suit the abilities of the patient and hopefully slowly build strength in areas where he or she is struggling. Remember, never success or failure, only lessons.

I hope that this post has been helpful for you. If it has, follow my blog on WordPress and join the mailing list to get them sent direct to your inbox via email. For other information on who I am and what I am about, follow me on twitter. My handle is @ABIblogger. Thanks very much for reading and I hope you’ll be back to read more.