Identifying Triggers

Identifying Triggers

Mental Health – The Triggers

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“Better the devil you know”

– Common Idiom

When it comes to mental health I believe that the above quote is a very appropriate one. Last week I spoke openly of depression, while this post applies to depression it also applies to other mental states as well so I’m hoping it will be useful to lots of people.

One of the biggest issues that I used to find was that the internal attacks on my mind from negative thoughts, whether they were attacks of anxiety, panic, depression or anger, seemed to be random. They were out of my control and I could never predict them. It was as though the most seemingly anything, whether it was a cataclysmic life changing event or stubbing my toe in the morning could shatter any fragile state of rare calm and peace I may have been feeling that day.

This opinion and state of mind persisted for a long time, as did my frail mental state. I was halfway through my second year at university when, I think it was my counselor Helen (to whom I owe an enormous debt to. I don’t know if I would’ve survived university if I had not used those weekly one hour session to let my guard down and talk about the things that were troubling me) where she mentioned sleep therapy and mindfulness meditation sessions at the Southampton City Library. Mindfulness is something I will talk about thoroughly in later posts, but it was during these session that I learned my entire outlook on mental health, the control of my mental state and my subsequent mood were entirely within my control.

 

Unconscious Thought Patterns

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In the days prior to my brain injury, I would have considered myself a very happy, outgoing and positive person. I think that I had a good outlook on life and I knew roughly where I was going and what I wanted to do. Now, the brain is an enormously complex machine. It sends messages all around the body to keep it functioning. It tells us what to do. To use a geeky metaphor it is the motherboard to our computer. It sends out the various signals without us being aware that it is doing so. For example, a person decides to go for a walk. When they leave their front door and have selected their destination and the brain issues the command “begin to walk”, the brain unconsciously does the work. It is not a series of conscious instructions where our inner monologue is saying, “right foot forward, now left foot forward, now right foot again…” and so on. The reason for that is that walking is such an essential everyday function it has become programmed and so engrained that it is almost an automated function, programmed deeply into our brains. We do it without thinking about it, we aren’t aware of the thought process and it does not leave a trail. Many of our physical attributes and skills operate in this way, as an automatic pre-programmed function. That is when we are talking about physical functions and physical actions, our mental functioning and the processes that dictate it is a very different story.

Inner Monologue and Memories – Conscious Thought Patterns

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When it comes to emotional and mental health, states of depression and low mood do not just happen. For us to end up in a state where we feel that low or that anxious, the thoughts that travel around our brains have to follow a certain path to arrive at the self destructive destination that is panic or depression or any other state of mind that drives us to distraction. Often, the vehicle that pushes us towards those undesirable locations of angst, irritability and negative thought are conscious thoughts, in other words, thoughts we are aware of. Often they are thoughts or memories we have rummaged through the archives to find. Ones we have chosen to analyse, reflect and look back on.

Certain thoughts evoke certain emotional responses. Positive thoughts instigate a positive emotional response while negative thoughts produce a negative emotional response. If we take that to be true then people who suffer from mental health problems and feel as though they cannot control their thought patterns and the subsequent emotional responses, with the right discipline, patience and hard work, in fact CAN learn to master and control them. It is a case of learning what the TRIGGERS for said thought patterns are. Unlike unconscious thought patterns, conscious thought patterns DO leave a trail. If we can follow the trail, analyse and monitor our thoughts carefully, then we can identify if there are any particular thoughts or memories that act as a trigger for a negative emotional response, giving us back more control.

Finding & Identifying The Triggers

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Think of our thoughts as the first time you take a long journey in a car. It is a journey which you will have to make many times in the future. Inevitably, it will take a while to learn the correct way to the desired destination. There are many alternative routes, many turns that come off the main road and in some cases, dead ends that don’t really go anywhere and worst of all, roundabouts. Roundabouts where we keep going round in circles trying to find the right road that gets us out of the never ending cycle of going round and round and round. In our minds, we can often take a wrong turn that leads us down a wicked road. We can try to get back on course on our own and we try a few different turnings to get us back on course, but finding our way back is extremely difficult. However, if we take time to study and analyse our thoughts, we become aware of the side roads, the junctions and where the roundabouts are that can send us in the wrong direction. Mastering this type of discipline will act as your road map.

As I said in the introduction to this post, this discipline is a key component of a meditation known as Mindfulness. A particular part of Mindfulness focuses on learning about our minds, the way they work and the thoughts we have. Then we can analyse certain trains of thought and where they lead. It is about identifying the particular thoughts that send us in the wrong direction where we end up lost and in a terrible place with no idea where we are or how we got there. By identifying the particular turn offs (I.E. certain memories, how we view ourselves, certain things we think about life and the world in general, things beyond our control etc.) and where that turn leads, we can avoid taking that particular turn off in the future, as we know that it leads us to a bad place. Those memories and thoughts are triggers for depression, anxiety, panic or anger. Once we know what the triggers are, when you come across them, is about mastering the ability to knowingly turn your thoughts around and send them in another direction. As that becomes easier and you master that discipline it is then a case of turning that conscious effort into unconscious thought, of doing it without thinking.

Where Does The Quote Come In?

In fact, the full Idiom I quoted at the top is as follows:

“Better the devil you know than the devil you don’t.”

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The point I making here by referencing this very wise and very intelligent saying is to reinforce the entire message this post has been sending (or, at least trying to send). That once we have identified certain weaknesses or problems we are much better equipped to develop strategies that allow us to accept them and manage our lives around them. By being aware of the weaknesses and problems we have and developing strategies that allow us to cope with them, we can the live a fuller live without mental (or physical because the idiom does apply to both) health being a serious impediment or a shadow that we have to live our lives under forever more. Once we identify the devils inside us we can figure out ways that work for us on how best not to engage with them.

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Go Back A Step – Depression

Go Back A Step – Depression

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

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

Where I Failed

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

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

Where the Depression Stems From

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

You Are Not a Burden

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

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

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

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

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

Futures & Goals

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

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

We Need To Look Forward

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

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

Depression – The Positive Effects of Exercise

Depression – The Positive Effects of Exercise

One moment your life is mapped out, you know who you are, what you want and where you are going. We wanted to live the dream! But what if life is not a dream though, what if the dream that movies, news coverage, advertisements and politicians have described and tell you is imminent if you work hard enough turns out to be fake? What if it suddenly turns into a nightmare? The next moment you find yourself in a hospital bed with your life changed, as if someone has blindfolded you and dropped you in the middle of a rainforest and told you to find your way home. After many mishaps, mistakes and the feeling of injustice at the ridiculousness of the size of the challenge you have been set it is inevitable that feelings of anger, despair, futility and so many others will inevitably pile up to the extent that you don’t even want to get out of bed in the morning.

Depression & Exercise

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Now we all know that exercise is good for us in the conventional sense. We should all exercise daily according to our GP so as to keep blood pressure down, keep the blood pumping and oxygenated, to keep ourselves at the right weight and to generally make us look and FEEL better about ourselves. Depression is the parasite, a condition that is fed by our negative thoughts, our dark desires, our self-loathing, or stresses, traumatic experiences and our hatred. There are many ways to control that parasite though, not just medications (which, in my opinion, are handed out extremely frivolously these days), but by more natural methods that we can do ourselves with a little discipline and hard work. I personally believe that if you are susceptible and vulnerable to mental health issues that it is a case of getting those negative thought patterns well controlled, that with the right lifestyle we can ensure that they lie dormant for long periods. What I believe is that when it comes to depression, it is something that is linked to your own mind, the type of person you are and your own experiences. Therefore I believe that, as is the case with ABI, that you aren’t really ever cured. Because of the type of person you (or we, I also suffer from issues with depression anxiety and anger) are and all that you have been through will be prone to spells of depression or moments of anxiety for the rest of your days. This is also the reason I believe there are other ways to deal with them aside from just throwing pills and medications at the problem in the hope that it goes away.

The Science

There are two key parts to how exercise can keep us healthy not just physically but improve our state of mind as well. The first is the release of endorphins and the second contributory factor is ensuring that our blood remains oxygenated and circulating well. I will do my best to explain the processes, as I understand them but I will say this now; I am no expert scientist.

What Are Endorphins?

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Endorphins are a neurotransmitter (a chemical that continues the passage of signals from one neuron to the next) key to the central nervous system. They play an extremely important role in the nervous system as they can encourage or suppress the signaling of nearby neurons. They are also our brains response to certain stimulants, such as pain as well as emotional stimulation to the brain. Think of endorphins as the brains own drug and react mainly with the part of the brain responsible for blocking out pain and controlling our emotional state of mind.

While endorphins block pain and control our emotions, they also cause that great feeling of excitement and enjoyment from the things we are really passionate about, enjoy doing or are just something of a giddy thrill. So when we do an exercise that we are extremely passionate about, not only do endorphins block out or relieve us of issues such as pain but also emphasise the positive emotional state we are in when are enjoying our exercise. When you hear people talk about the “runners high” that is due to the rush of endorphins the runner is getting while their brain is active and their body is being pushed.

Oxygenated Blood

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Now, I’m not going to get too caught up in this. I’ll keep it brief, as I’m not sure exactly what the correct scientific explanation would be (Here is a good article on oxygenation of the body and body detoxification – http://www.naturalnews.com/032096_oxygenation_body.html – ).

To keep it simple, the oxygen from the air we breathe in diffuses through membranes into our red blood cells, the cells designed to carry oxygen around the body. The red blood cells then carry this oxygen to the places where it is needed most in the body.

The best way to ensure a good supply of oxygen in the blood and that your organs (particularly the brain), muscles and nervous system stay oxygenated is to focus hard on breathing patterns with slow and steady breathing.

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To help maintain both of these things, a steady supply of endorphins and a healthy supply of oxygen to the blood, those breathing patterns I spoke of earlier combined with regular aerobic exercise (hiking, running, cycling) or just breathing and stretching exercises such as yoga or tai-chi. The point is exercises.

I can guarantee that with the continued focus on breathing patterns and with regular daily exercise (it doesn’t have to be a big grand effort, just walking for half an hour a day) can have a really positive effect on the state of mind due to your body’s natural reaction, the release of endorphins; your body’s own natural high.

Confidence

One thing that exercise also provides that is a huge boost in the fight against depression is confidence in ourselves. During recovery and rehabilitation post-ABI I know that there are so many things that are foreign to us and that have changed, against our wishes. The situation escalated beyond our knowledge and control. However, when we find a particular type of exercise that we enjoy, we can implement an exercise regime that will enable us to set targets and, by achieving them, bring back an element of control.

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Depression can cause issues such as a lack of appetite, or a tendency to over eat, both of which cause issues with weight. Exercise can help to counteract both of those things wether it is exercising to build up an appetite or exercising to burn off excess calories you have consumed. Exercise can be used merely to keep your body in balance and ensure that you stay in good condition and that your health doesn’t suffer. It can also be used to set yourself goals such as adding muscle definition, increasing targets such as distance run or weight lost or gained. With regards to exercise, it can work as a way to motivate ourselves and as a tangible, visual incentive because it shows that the effort we are going to is worth it.

NB. For more information on how exercise can act as a positive influence in life post-ABI check out the inspiring story of Nick Verron and how exercise changed his life after his brain injury. Follow the link to his blog: nickverron.com 

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.

Acknowledging Disability

It took me a long time to finally accept the monumental change that had happened in my life. In my past posts on Independence, Health, Employment and Taking Back Control, while being focused on being able to live as an independent adult with our own lives have all had a common theme of acknowledging where our strengths and weaknesses lie. In essence coming to terms with our disabilities.

Coming to terms with having something like brain damage and accepting myself as a disabled person, was a really difficult thing for me to do. However, more than six and a half years have passed since the horrible night I suffered my brain trauma and I can confidently say now, without fear “I am a disabled person with brain damage.”

Now, I used the word “fear” there. I personally think that’s interesting when I consider my brain injury in the grand scheme of things, purely on a human level. I have to then ask and analyse myself (again!) what was it that I was afraid of?

A Short Series Of Questions

So here I have to ask questions to myself, what were the things I feared that made it so difficult for me to admit that I was disabled? Was I afraid that, by admitting to myself and to others that I was disabled, I would be excluding myself from the rest of society? Did I fear rejection, ridicule and prejudice in a society that increasingly seems to be turning a blind eye to the plight of those in need? Where, in this new sense of self that I was coming to terms with, would I fit in? Finally, had I subconsciously adopted an unknown, subconscious prejudice (not vindictive, violent or exploitative, more a feeling of discomfort when in their presence) against “the other”?

A Short Universal Answer

The answer to all of these questions is yes. I realise I may be making myself seem more unlikable to you in admitting that but I feel it is only fair for me to be truthful. I would be doing you a disservice if I made up some weak, halfhearted excuse as opposed to telling you the truth that my fears were based on basic human instincts; the need to fit in, the need to have a place and a role in everyday society, the need to be “normal”. Of course these are things that everybody wants really. They make for an easier life, a life you can float through without analysing, thinking for yourself, challenging or disrupting the natural order of things. What I see when I look at all of those previous questions and the answers I have just given is that the fear that stopped me accepting myself for who I am after my brain injury is one very basic, human fear…

The Fear Of Change

The fear of change is a very basic and, quite honestly, understandable fear. As human beings we like security; we like to know when our next paycheck is coming from, that there is food in the fridge and that we have a job to do when we get up in the morning. It is obvious that this gives us a feeling of safety and purpose each and every day. So when something occurs that has the potential to disrupt that harmony, something that could take away the things we rely on to get us through life feeling contented and secure, it is only natural that we are wary, cautious or afraid of that change.

So when we ourselves are fundamentally changed from the inside to out, the organ that controls our speech, our movement, that voice in our head that help us make decisions, decide what to say or do, the consequences to our cognitive abilities is damaged so that we are (I realise I’m speaking universally here but I’m only speaking from my own experience) an almost completely different person to who we were. That is a terrifying prospect for both patients and their families. That the person you are and that they love will be different from the one that they know, have known for years and that they love and cherish.

I don’t know about anyone else who may be reading this, but I feel as though my brain has been switched with someone else’s since my ABI. I am a totally different person now. Taking on the challenge of recovering from an acquired brain injury is taking a step into the unknown; as I said it feels as though my brain has been witched with someone else’s. It’s like a game of roulette; you never know what number the ball will land on or whose brain you will get.

Carrying on from that, what do we rely on more than our own brains, than ourselves? When someone has suffered a brain injury, not even the best experts and consultants are willing to predict the ramifications and consequences until the patient is fully awake. So for those on the outside, looking at a brain injury patient it’s the fear of the unknown. Not knowing how much of the person that they knew and love they will get back.

What Do We Do?

Fear, we all suffer from just in different ways. When I look at the questions I asked myself earlier (barring the prejudice one), they are all reasonable and similar questions one would ask themselves in other more conventional life changes. For example, if they were moving to a new place, quitting their job to start a new business or getting back into dating after a divorce. Those types of fears are deeply rooted within us; the fear of change and of the unknown.

It’s what I have come to learn. Life itself is an unknown thing, full of change. We can’t control everything all the time and we never know what is waiting for us right around the corner. Whether that is meeting the girl of your dreams in a café on your lunch break for example, or suffering a brain injury on a night out. Life is peaks and troughs. If we can accept that life is an unknown, that it has good and bad elements and if we can embrace the fear that comes with that and confront it head on, we can move forward accepting ourselves for who we are.

I can safely say that I have fully accepted that I am a disabled person. Confronting the fact that life will change and it will throw bad things at you has made me a stronger person. Now that I have suffered my brain injury and have seen what is truly the harsh side of everyday life, because of the strength and the determination it has given me to prove to everyone that disabled people are incredible, brave, valuable and talented, despite the disabilities I have now, I wouldn’t go back to the person I was before.

Brain Injury Recovery – 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

 

 

Never Change Who You Are…

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. After suffering a brain injury it is inevitable that your life will be changed. When I say this I am talking about changes perhaps in your cognitive ability, in certain physical abilities or in the way that you look at life.

The one thing you should ensure never changes, is who you are as a person. After I suffered my injury I found that the majority of my desires, passions and drives remained similar to what they were before it. Six years later, I am still working towards achieving the goals that I set myself post-ABI and slowly but surely, I am starting to get there. With persistence and determination, and just as importantly, by staying true to yourself I firmly believe you can achieve anything you set your mind to. With that statement in mind I will also share with you some of the things I have learned as I have made progress.

Nobody Knows You Better Than You

This is one of the key things you must continue to tell yourself. Off the back of a brain injury there will be plenty of people who think they know you better than you know yourself. They will think they know what you want, what is best for you both in the short term and the long-term, and in some cases they may even place a glass ceiling above you. What I mean by that final point is that often due to the issues that we struggle with as a result of our injuries, people seem to have placed limitations upon what we can achieve. A maximum expectancy, if you will. This is one of the things that I have struggled to cope with since my injury, the lack of belief people seem to have, peoples assumption that I deem it appropriate merely to “settle”.

I will give an example if I may. I am currently, as I have mentioned in previous posts, living at home with my parents. This is purely due to a combination of my epilepsy and the effects of my brain injury, which make it not only impossible but also dangerous for me to live on my own. The lack of independent living is not from a lack of trying. I have worked Jobs before, as well as living independently both in London as well as in my hometown in Dorset. After I came home from the year in London and I got settled in my new flat in Dorset I returned to the job I had been working before I moved, working as a waiter. A month or so after my return, I had an appointment with my neurologist to assess my progress. It was at this meeting when he suggested that perhaps it was time to stick to the waiting job and see how things went.

The point I’m trying to make with this example is that purely because you’re struggling with things, it does not mean you have to settle for life that you’re unhappy with all that is beneath the expectations you set for yourself. You know what you are passionate about, you know what you want today and most importantly you are aware of your own abilities and how far those abilities can take you. Nobody knows these things better than you so do not allow anybody to presume that they do. That goes for friends, family and doctors. While their advice is important and most likely well informed, they cannot possibly know what is going on inside your head.

Don’t Just Consider The Here & Now

The terrible circumstances of suffering a brain injury certainly dictate some of what we do in here and now. Unfortunately, that is inevitable. Not only do we live with the physical and mental consequences of the injury that causes problems each and every day, but also it can force us into circumstances that we did not foresee.

If, at the age of 18, somebody had asked me where I would be when I got to the age of 26, I certainly would not have said living at home with my parents in a cramped two bedroom house. However, these are the circumstances that I am in. The only way to overcome the challenges that we face and improve our circumstances, is to persevere: to get up each and every day and carry on. It took me along time to come to terms with this fact; that any progress I was going to make was going to be gradual. If you can accept these things and, as I have said in previous post, even embrace them with a positive mindset, you can go along way to insuring that what you see as a negative circumstance right now, will not affect who you are and can even be turned into a positive circumstance further down the road.

The other approach to enduring the negative circumstance is to allow anger, self-pity, and frustration to take hold of your entire being. The result of this, and I speak from experience here, is that you fall down into a dark hole of despair. For some people there is no coming back from this. So focus your energy on remaining positive and trying to look for the good things in your circumstances, because they are there and the more you focus on the positives (i.e. what you do have as opposed to what you don’t have) the less chance there is for the negative thoughts to take hold and take you to place you can’t get back from.

Things Will Get Better

It is one of the things that are really difficult to deal with on the road back from a brain injury: that progress is slow. What the above post has been trying to say, is that we always need to stay calm and think clearly. While it is in the human nature to seek instantaneous results, that is almost an impossibility with something like an ABI. To be more specific, the point I’m trying to make is that throughout the recovery you should always try, as best you can at least, to stay true to who you are. I do not believe that a brain injury dictates every facet of your life. Nor do I believe that it changes every aspect of your personality. I consider myself a person who is that different now, than the person I was before the brain injury (perhaps a little more mature and a little less naïve). You certainly should not give up on the things that make you an individual and I firmly believe you should continue with trying to achieve similar goals to the ones you had before your injury. Because the truth is, you can!