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

 

 

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World Mental Health Day! (Only A Day?)

I realise that I am posting on a day other than my usual Monday and Thursday slots. Today, however, is a day that needs to be brought to the forefront of discussion. Today is the 10th of October and is marked in the calendar as World Mental Health Day, a day to raise awareness of and broaden the dialogue surrounding mental health and to hopefully address the negative stigmas attached to it.

Mental Health In The Context Of The UK Population

The truth is we must understand mental health problems before we can answer the question “HOW do we address it?” The truth is that, statistically, one in four people are likely to have issues regarding mental health over the next year. Most of those people will, again statistically, be young people. So what we are saying is that approximately 25% of the UK population is likely to have mental health issues over the next year, the majority of them being young people. A statistic even more alarming, though, is that 28% of UK residents would be unwilling to talk about issues regarding their mental health and the mental health of others. That is extremely alarming to me. Nearly one third of the British population is unwilling to talk about something one quarter of the population has – there is something terribly wrong there!

So, what does that mean? So many people will be and are going through mental health issues in our country. It is predicted that, by the year 2020, major depression will be the second most common health issue in Britain behind heart disease. It appears we are approaching a mental health epidemic in Britain and someone seriously needs to sit up and ask the question, when are we going to talk about this?

What Is It Like To Suffer From Mental Health Problems?

I can only put mental health into a context where I can understand and relate to it. After suffering from an Acquired Brain Injury (ABI) I have suffered terribly with depression. I have seen councilors and neuropsychologists to help me with my issues; I have tried more holistic methods such as mindfulness thinking and meditation classes. Finally, six years after the ABI, I am at a place where I am reasonably well balanced in terms of my mental health.

I am not fully balanced though. It is something like walking a tightrope, lose your balance ever so slightly and you can take a massive fall (It is lucky I always have the safety net of my family there to catch me). People are never aware of mental health, not really. It is that problem and a perception that people with depression are having a bad day or feeling sorry for themselves that hampers the potential discourse surrounding the subject. For anyone that doesn’t understand or has never experienced issues with something like depression or the myriad of other mental health issues, the paragraph below (in a very dark manner) will explain what it felt like for me to suffer day in, day out, with depression.

            “Depression is cancer of the soul. I still see a neuropsychologist regularly to try and fight against the parasite that riddles my brain; stabbing at my insecurities, whispering nasty, vindictive things about who I am and the way I am, the voices that don’t want me to succeed and seems to hold the positive voices as hostage with a gag stuffed down their throat. It is the thing that locks all the positive thoughts and emotions; optimism, love, hope, self-belief, confidence in a cell with no windows.” (Written by myself approximately two years ago).

Media Representation Of Mental Health Problems

We often see in mainstream media such as the news, film and TV a representation of mental health issues which depicts the extreme repercussions and effects they have on people’s lives. People so depressed they are self-harming or committing suicide, murderers who were schizophrenic or bipolar. We see the extreme consequences of these illnesses but what is never addressed are the issues everyday people are having regarding mental illness and mental health problems – that the person you sit opposite to in the office may be on medication for a mental health issue that they live with, manage as best they can and live with negative feelings and thought patterns every day rarely occurs to most of us and gets very little air time in terms of media coverage as it is not shocking enough. What is shocking in my opinion, though, is the number of people in our lives who are likely to be suffering from this kind of issue.

What becomes more frustrating for people in that situation is the blasé nature in which objective social commentators seem to address their condition. As we move forwards into the future, the Internet plays an increasingly larger role in the influence it has on the way that we are thinking. Let’s not beat around the bush, the media we consume plays a large role in influencing the way the general population thinks. What has really started to upset me is the emergence of what I like to call “the sickening meme” (two examples of these can be found at the end of this paragraph. Maybe I’m negative but hey!). With social networking playing an ever-expanding part in people’s lives, both socially and professionally, it allows people to show their creativity and promote their creative works to a large audience of people. Now this, I am all for. However, it becomes increasingly frustrating when people address issues and over simplify them. In doing this, creating a meme with a nice picture and a sickening quote that overly simplifies an extremely complex issue. While you are being creative and your work is very impressive, you are not part of the solution, you are part of the problem, in over-simplifying the discourse that surrounds a complex issue. This helps to minimalise the discussion around issues of mental health as it makes it seem as though the solution to issues such as depression and mental health conditions are easy ones when THEY ARE NOT. I realise that memes such as these are not intended specifically for people with mental health problems, but people suffering from those problems see these pieces of creativity and they feel worse, they feel isolated, as they start to ask the question, “Why can’t I pull myself together?” It makes them feel more and more as though they are failures.

Mental Health In Relation To ABI

For people with ABI’s, the reasoning behind depression post-injury can be so varied because an ABI changes so much in our lives; our physical abilities, our cognitive abilities and mental capacities, it can stop you from finding, keeping, even being able to work, it can change personality traits, it can make it so that relationships cannot be developed or maintained, it can ruin careers, ruin lives! There is some academic thought that it could come from a biological reaction to the trauma itself – I do not necessarily agree. I think if we look at all of those things I listed previously, what they have in common is loss. I think the depression post brain injury is us mourning our loss and adjusting to a new sense of self and realising that we have to be someone new and find new ways of doing regular things to be able to get by and live a regular life.

Ways ABI Patients Can Regain Control

Fighting depression post-ABI can be a difficult task. It is incredibly important though as something like depression can be as debilitating as a physical disability. The key is to find ways to fight those negative voices that can be so influential and powerful in our brains. So now I am going to list a few key ways (some I may have mentioned in previous posts) that helps me fight depression after my injury.

  1. Exercise – A simple one but very effective. Doing something as simple as going for a brisk walk for an hour each day will produce endorphins, opiate like neurotransmitters (chemicals that pass on signals from one neuron to the next) that come from the pituitary gland and spinal chord, and other parts of your brain and nervous system. Endorphins are often produced during periods of stress, fear and pain and mostly interact with the receptors of cells found in regions of the brain that suppress pain as well as controlling our emotional levels. The release of endorphins can give your mood a real lift, leading to the term “the runner’s high”, meaning a feeling of euphoria post-exercise.
  2. Holistic Methods – These methods can often be scoffed at but I found them to be very effective. Practices such as the one I used, mindfulness meditation, is aimed at really paying attention to where you are, in the present and being aware of your thoughts and where they lead. As well as this, mindfulness if done in a specific location can allow you to really be aware of the natural world as it is. The intention is to really come to terms with yourself and your presence in this world and can be really effective in instilling a positive thought process, which will improve your mental health and your wellbeing in general.
  3. Recording & Celebrating Your Successes – I have talked in previous posts about targeting small achievable goals. One of the things I am not sure I put enough emphasis on was recording those goals and your victories. When I was recovering from my ABI, I made a diary to record the things I had achieved. This enables you in darker times, when the negative thoughts get overwhelming, to look back over your successes and see what YOU have achieved. The things that YOU did. It was all your work! What’s more celebrate those achievements even if they are small ones. To give yourself credit give you confidence and self esteem which will allow you to press on and go for bigger things. Those two things also play a big part in overcoming depression. If you do enough things and tell yourself enough “I ACHIEVED THAT” or “LOOK AT ALL THE THINGS I HAVE DONE”, that self affirmation is the kind of thing that allows the positive voices to shout over the negative ones.

The point I have tried to make with this post is that, while we now have one day to bring attention to mental health, there are people suffering with those kinds of issues every single day. One day or one week even, does not seem to be enough in my eyes. Why aren’t there, for example, trained social workers in schools? The person you went to talk to about issues such as depression when I was at school was a PE teacher who also taught PSHE. I have to ask, if young people are suffering with these issues as badly as recent studies suggest, WHY AREN’T WE DOING ANYTHING ABOUT IT??? Until we are all on the same page with regards to mental health problems and the kind of things that are required to overcome them such as:

  • Easy access to trained councilors
  • More education in schools
  • a kinder and more accurate portrayal of mental health patients in the media as well as a less polarized depiction of the severity of mental health issues in general society.
  • Finally, everyone being able to open up to each other and talk openly about how we feel.

Until we can provide this, then we are still going to be in the same place in the year 2020, asking ourselves how have this generation been allowed to get to this position? The middle of a mental health epidemic!

Now, I hope that this has been helpful. I think that these issues are all one that need to be addressed and talked about. I realise that some (maybe many) may disagree with what I am saying and my opinions on this subject. I have not written this as an inflammatory gesture, these are merely my opinions on the subject. If anyone has any criticism or issue with what I have written, don’t hesitate to contact me on Twitter (@ABIblogger) or by email: lifeafterbraininjuryblogchat@gmail.com.

The last of the pseudo-science…

My Name is Tom and I am the survivor of an ABI.

In the last post, I covered the injuries to the brain that I suffered (as I understand them in layman’s terms). In this post, I will be looking at the different sections of the brain, what they do (again, as I understand it), and that will lead us on to the next few weeks where I will discuss the problems I had when waking from my induced coma. Trust me, I am doing my best to get away from the medical stuff, the neurology, and move quickly on to my experiences and the real meat of this blog.

From the research I did through my medical notes, it seems that most of the damage was done to the temporal lobe, the occipital lobe, and some minor damage to the frontal lobes (and I’m sure other places suffered some minor damage due to the midline shift/increased ICP). Now, finding out the function of the different parts (or lobes) of the brain has been interesting to me as it has allowed me to put the after effects I still suffer from in some kind of context. I had done little to no research prior to this blog on what effect the damage to different parts of my brain has had on me. It is much easier to not address it: to live in denial of something is a lot easier than accepting it and taking steps to address and overcome it. After all, it is only really in the last year to eighteen months where I have started to truly accept my ABI and what it has done to me.

Now, the different lobes of the brain and what they do. This is how I understand it and the picture below should give some clarity on the locations of the different lobes.

Colour coded and labelled picture indicating the different lobes of the human brain.
Colour coded and labelled picture indicating the different lobes of the human brain.

The main section of the brain is called the cerebrum and provides the tools for thinking that we use in every day life. It is divided into right and left hemispheres: The left hemisphere is responsible for the logical side of thinking, numbers, words, lists, logic, sequence, linearity etc. and controls the right side of your body. Whereas the right hemisphere controls the left side of your body and is responsible for the more creative endeavors such as rhythm, spatial awareness, colour, imagination and daydreaming. The cerebrum is then split into four different lobes, each of which has a different function.

  1. The Frontal Lobe – The frontal lobe controls so many different aspects of what we do and what our brain does. To include just a few, it controls creative thought, problem solving, intellect, judgement, behaviour, attention, physical reactions, muscle movements, smell and personality.
  2. The Parietal Lobe – The Parietal Lobe mainly focuses on comprehension, monitoring things such as language, reading, visual functions, internal stimuli and sensory comprehension. It is also home to the Sensory Cortex and the Motor Cortex. The Sensory Cortex receives information from the spinal cord regarding the position of our many body parts and how we are moving those body parts. The Motor Cortex helps to check and control the movement of the body.
  3. The Temporal Lobe – The Temporal Lobe controls our visual and audio memories. Located here are sections that help us with speech and language as well as hearing. It also has an effect on some of our behavioural factors. The Temporal Lobe also houses Wernicke’s Area. Little is known about this area by even the best doctors but it is known to help us formulate/understand speech.
  4. The Occipital Lobe – located at the back of the head, it helps to control vision. The Occipital Lobe also houses Broca’s Area, the area of the brain that controls the facial neurons as well as our understanding of speech and language.

So theses are the four main lobes of the brain. I promise you, that that should be that on the science jargon. But I felt it to be important to include some of the scientific/neurology stuff as it places my future experiences in a proper context. So I hope to see you here again. Would love it if I could get a few more followers on Twitter (follow me @ABIblogger) and maybe follow my blog while you’re here. I assure you I am doing this with the main aim of helping people. Any feedback I can get would be amazing! Thank you so much everyone. Stay strong!

The Injury…

The Injury…

My name is Tom and I am the survivor of an ABI.

(N.B. I am hoping that the above gallery will help with understanding some of the injuries I suffered.)

To start off with, I think the most important thing will be to cover the injury I suffered. I am trying to explain what happened in layman’s terms so it is easy to understand for you readers. I’m not sure I fully understand it myself but I have done my best. At the end of this post I am hoping that you will have a basic understanding of the injury I suffered.

On the 30th of August 2009, I was admitted to Southampton Hospital having been assaulted on a night out with friends. The night out had been to celebrate my acceptance into university, it was something of a last hurrah with my friends from my home town, a small town in Dorset in the south of England. At the end of the night, while waiting for friends outside of a take-away restaurant, two men confronted me. After a verbal altercation with one of them, the other punched me in the head, knocking me out before I hit the ground. My head smashed into the pavement with such force that it caused multiple fractures to my skull and internal damage to my brain.

I was admitted to the hospital as a 3 on the Glasgow Coma Scale, more or less the worst you can be. I had suffered a comminuted fracture of the occipital bone, a longitudinal fracture of the left petrous bone, a subdural haematoma, extensive subarachnoid blood in the basal cisterns, bilateral frontal contusions, and inferior temporal lobe contusions. These injuries also meant that my intracranial pressure (ICP) was extremely high.

This may seem like a lot of medical jargon to you (to me too, really), but I have done some research that has helped me to understand, in very basic terms, what these injuries mean.

  1. Intracranial pressure – Bleeding and swelling of the brain, causing it to push against the cranium from the inside. This puts pressure on the brain itself and damages it from within.
  2. Comminuted fracture of the occipital bone – A comminuted fracture is essentially the result of a massive impact to the skull, causing the bones to be forced inwards. These fractures are most commonly associated with assaults: the use of weapons, blunt objects, kicks to the head etc.
  3. A longitudinal fracture of the left petrous bone – The petrous bone supports the temple as well as housing the bones and vessels required for hearing. A longitudinal fracture is one where “the vertical axis of the fracture parallels the petrous ridge” (I have to say, I am not sure what this means. I will do my best to update this info so it is easier to understand).
  4. A Subdural Haematoma – Bleeding on the surface of the brain caused by the bursting of small blood vessels that bridge the subdural space, the space created by the abnormal separation of the Dura mater and the arachnoid mater. This is likely to lead to an increase in ICP.
  5. Subarachnoid blood in the basal cisterns – Bleeding into the wide gap between the two temporal lobes.
  6. Bilateral frontal contusions – This is essentially severe bruising to the frontal lobes of my brain. The force of when I hit the pavement caused the brain to rattle around inside my skull.
  7. Inferior temporal lobe contusions – Severe bruising to the inferior temporal lobe due to the way my brain moved about inside my skull at the point of impact.
  8. Midline shift – Midline shift is a shift of the brain past its centre line. Presence of a midline shift is an indicator of high ICP.

Upon arrival at Southampton hospital and the diagnosis of my injuries, my family were told to expect the worst as I was rushed into surgery where a craniectomy was performed: a procedure where a section of the skull is removed and placed under the surface of the skin in my stomach (as the skull requires the presence of blood or it shrivels and dies), to allow the brain to swell and subsequently reduce the intracranial pressure. A procedure was also performed to remove the shards of skull caused by the comminuted fracture of the occipital bone.

After the surgery, my family was informed it had been as successful as it could be given the circumstances. The doctor told them I would be placed in an induced coma to allow my brain to rest, and the waiting began.

(Please follow my progress with my ABI awareness by following me on Twitter, located on my profile but for anyone my user name is @ABIblogger)