Socialisation & Emotional Instability

Socialisation & Emotional Instability

 

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

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

Why Is That Different For Brain Injury Victims?

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

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

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

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

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

Social Engagement – Self Doubt

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

Social Engagement – Communication

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

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

What Is The Result? Emotional Instability

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

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

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

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

Coping With The Unexpected

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

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

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

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

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

That’s Life So…

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

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

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Anxiety & Low Self Esteem

Anxiety & Low Self Esteem

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This week I am moving on from depression to look at another issue I suffer with, anxiety, paranoia and low self esteem. Now, a key part of looking at anxiety in my opinion is truly defining what it is and what it means. I think that it is fair to say that one is a biological reaction that everyone suffers from to different degrees of severity when there are moments of stress or more accurately anticipation. That is nervousness. I then believe that Anxiety is a much deeper condition that is engrained in the mind and is very much to do with confidence, how we view ourselves and how view the world. I realise that description of anxiety may seem very simplified to some people but I will expand on why I think that as the post goes on.

Is it Nerves or Anxiety?

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I often think that there is confusion when talking about anxiety. I think that many people confuse anxiety with nervousness. It is very often that before a significant event that you are about to participate in you may well be nervous. You may suffer from butterflies in the stomach, light-headedness, shakes/tremors or poor communication skills. Whether you are about to deliver a speech at a work conference, participate in a competitive sporting event or approach someone to ask them out on a date. In the lead up to the event we are nervous both about our performance and the outcome.

All of the things I have said above are also symptoms of anxiety. There is, from my experience, a large difference between the two conditions though. When it comes to being nervous about something is that it is generally noted by many people (professional athletes, professional businessmen and women, professional speakers) that once you actually come to the point of performing whatever task it is that has got the nerves jangling, your body tends to react biologically, adrenaline kicks in and the nervous feeling goes away as you focus on your task rather than worrying about what might go wrong. Your mind becomes focused on participation rather than outcome; you lose yourself in the moment in what you are doing. To simplify it, nervousness is a biological response to a situation. That is how I see it anyway.

However anxiety is a condition that is very different to a person who suffers from nerves. I find when I am suffering from anxiety; I tend to look at things in a much larger and broader view. I see the consequences of my potential actions and my failures, before siting what I would do if or when that potential consequence comes around and so on and so forth. I continue to look at the potential negative outcomes of my actions and my decisions and then create a trail, a story made out of potential scenarios that haven’t even happened yet but nearly always end up with a bad outcome.When I have built this imaginary mind map, all of the things that could go wrong (in my experience) generally come from mistakes or bad decisions I would make. When Then I start to examine myself, looking at the things I am bad at, the skills I don’t have instead of focusing on all the things I am good at.

My Social Anxiety

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In the early stages of anxiety and how the condition develops (this is just my opinion, I am speaking in terms of what I think about the way my own mind works, not from medical fact) I focus on my flaws, my mistakes and my lack of skills rather than the positive parts of my mind and myself. When the lack of certain abilities sabotages us in a particular way, that memory will remain with us and so will the emotional response that came with it whether that is sadness, anger, embarrassment or any other negative emotional response you wish to think of. Those times where we have been unsuccessful at certain things or certain abilities where we are less able have been highlighted act as a catalyst for periods of anxiety. I think that much of the anxiety I suffer from is doubt in my abilities and myself and having to put myself on display in a place where those, for lack of a better term, weaknesses may be exposed.

I can also be prone to small emotional breakdowns that can strike at any moment. I think lots of people who have suffered an ABI, TBI or even a severe emotional trauma can relate to that. When stresses in public places such as (for me) an invasion of personal space, strangers approaching me, an unexpected pressure being put on me or a decision that needs to be made it affects the way I think, my social and communication skills as well as my mood. An alarm bell goes off in my head because any of those situations that occur now are a threat to my safety and my wellbeing. At this point I want to turn tail and run. I want to hide somewhere, I want to go back home, get into bed and hide under the covers where I am safe and I cannot be exposed as a cripple or a spastic or any of the other negative generalized terms that ignorant and uninformed people use to describe people with disabilities. Words that have somehow found their way into my mind that, in times of darkness in my own mind I apply to myself. It is an attack of self-sabotage. When I re-read these words I can’t help but think what a coward I am. I’m a coward for caring what these people think. Their opinions will be informed by the actions I perform and the things I say which are not always in my control and are in no way my fault.

Anxiety – Is It A Cyclical Thing?

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When I look back at what I have said regarding my social anxiety it does, it all comes back to how I view myself, my own abilities and caring about how people perceive me and my disability. The last point is what really makes me angry with myself though, why should I give a damn about what a bunch of strangers or uninformed people think about whom I am? Why should I feel ashamed of the way I am as a result of my ABI? Finally, why do I allow their opinions and thoughts to pressure me into revealing the worst manifestations of my disability? It becomes a cyclical thing; trying not to upset or offend anyone with your disability or even reveal your disability, when you’re in a situation where the consequences of your disability emerge upsetting or scaring someone with your actions or what you say, then going back to trying to hide your disability or offend or upset anyone except this time with more of a pressure on you to not reveal who you truly are. The anxiety and the pressures are amplified each time we try to hide from who we are. The best thing we could probably do is just to be ourselves and say, “This is me, take it or leave it.” But are we brave enough to do it? Are we brave enough to overcome the pressure, the anxiety and the expectations of a fully-abled society? I have proven in this section that I am not. Not yet anyway.      

Managing My Mental Health

Managing My Mental Health

What To Do Next?

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In last week’s post (Identifying The Triggers) I talked about the combination of identifying the conscious thought and memories that sparked off the chain reaction that is a negative thought pattern. Within that same post, I also mentioned the discipline of Mindfulness and being aware of ones thoughts and where they lead so that we can learn what the triggers are and discipline our mind to avoid thinking about those particular negative thoughts altogether.

However I realize that this is firstly, not a solution to the issues regarding emotional triggers that can be used in the here and now as it is a discipline that takes a lot of effort and a certain time to master (as do the many other positive meditative states that we can learn). Secondly many people will be asking, “if I choose to investigate ideas regarding meditation, mindfulness and mind training and it takes a long time to master these methods how can I help myself in the mean time?” Well, this is what today’s post is about. Using examples of my own experiences and my own triggers, I will provide examples of how I managed to work my way around everyday situations where my switches that brought on dark spells were more than likely going to be flipped. I will also talk about them in order of which most regularly affect me in day-to-day life.

My Mental Health Problems & Triggers

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Anxiety & Paranoia – This is by far the most pressing issue for me. It happens most of all when I go out in public to engage or socialize with people. Only when I return to my home, in a quiet, comfortable environment does this feeling recede. When I go out in public, particularly when there are a lot of people around, I constantly feel as though I am in jeopardy and that the people around me are a threat or are there to harm me. I think this is mainly because of how my injury occurred, an unprovoked attack on a street corner. It means that when I go out I can never really relax or be at ease. If I am going to a particular place, as many people with any issues regarding anxiety problems will say, it is not the same as something like depression where you find yourself in that state and don’t know how you got there. You are aware of the sense of uneasiness and anxiety building as you approach your destination. The sense can be overwhelming. For me it has now got to the point that even when good things happen, I often find myself bent over with my head between my knees, taking deep breaths and choking back tears. I am shocked when good things happen to me, that good things can happen to me, such is the extent of my anxiety and paranoia.

I find that the biggest external factors that influence my state of anxiety and paranoia tend to be crowded places and invasion of personal space, loud and relentless noise and long and complex conversation and questioning. In terms of internal factors, the first one is a big contradiction to the one above where I mentioned personal space. I often feel as if I am exposed, too visible and that people are staring at me or watching me. The second is that when in social situations and talking to people I fear that they are judging me and disliking me (who doesn’t want to be liked and accepted? I think that’s more the. I want to be accepted for who I am, regardless of my condition).

Despite the extent to which it affects me, I have to acknowledge that going out in public is not something that I can avoid. (As I say that, I must confess to you that the amount I go out, socialize, number of friends I have and my ability to form and maintain relationships have decreased hugely since my ABI. My inabilities to manage my emotions in social situations that are in busy locations combined with the difficulties I have in trusting people are the main contributor to this). What I can do is try to avoid the things that have a tendency to really exacerbate my mental state of anxiety. These are the steps that I take to try and ensure that I master myself in public and in social situations.

  • Arrive EarlyI always try my best to arrive early. Very often by arriving early and doing what you need to do quickly and efficiently, you can avoid the mad crowds and the hustle and bustle.
  • ALWAYS Bring My iPod When I mentioned noise and crowds and the way it makes my feeling of anxiety worse, I always bring my iPod. On my iPod I have an album of Mindfulness/Relaxation music composed especially to be relaxing. It does not have any lyrics, it is just gentle music you can absorb, not interpret and analyse. It helps me to walk through the crowds, block out the noise and be at peace in my mind.
  • Strategic PlacementWhen entering a place, say a café or pub, I strategically position myself at a table with my back to the wall where I can see the whole floor as best as possible. It eases the feeling that someone can come up behind me and I can see the other people in the place. This gives me comfort, I’m not sure why.
  • Always Do Your BestThis may seem like a fairly obvious one. I do feel that we need to try and test ourselves when it comes so socializing and see where the line is regarding how much we can handle. Very often found that at the start of a social engagement, I find myself to be anxious or nervous for one of or many of the reasons I listed above. However, I think that the more we can make ourselves comfortable at the start, the easier it is to continue when a social situation gathers speed. There are ways in which to manage anxiety throughout interaction and exchange, whether through breathing exercises, disengaging slightly and allowing other people to do the majority of the talking or just taking a step outside for some fresh air and space every now and again. I used to fear that doing these kind of things may make a bad impression and that people will found me weird or antisocial. Trust me when I say that the people worth socializing with are the ones who will understand why you are doing this and accept that, for you, it is a necessity  

Depression

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 Issues regarding depression have been slightly less of an issue for me over the last year or two. I have become less concerned by what people think of my disability and the effect it has had on me. I have found that I am quite happy in my own company. I have mentioned in past posts and in my blogging work on the Headway Worcestershire site, I have found that I am able to stand on my own two feet with just the support of my family such was the degree of which many of my so called “friends” left me to deal with the consequences.

However, as a result I would now say I am not the most sociable person in the world, mainly due to the issues with anxiety and paranoia I listed above. I don’t have that many people that I feel I can trust or confide in and I spend a lot of time on my own. To contradict the statement in the previous paragraph, when I say that I am happy in my own company, I would hasten to add that MOST of the time, that is the case.

When certain things happen in your life, whether they revolve around relationships, ambitions or just general musings about your own situation, it would be nice to have someone to confide in that is not a blood relative. There is only so much you can or even want to tell a parent or a sibling. So you look back at days where you had those confidents and that outlet simply from picking up a phone to arrange a meeting. What I’m saying I suppose is that it can be a very lonely existence.

I also have a tendency to look at the lack of spontaneity that my life has now. The resentment towards the fact that my life is now mostly dictated by a routine that my health and livelihood depends on can have a very large impact on the way that you view life. For example, the few very good friends in my life (friends from university who are scattered all over the country) are arranging a “Lads Holiday” for the summer. Now, before my ABI I have gone on a few “Lads Holidays” and I know what they entail. I know for a fact that many of the activities that would take place would not be possible for me to take part in. It is extremely painful to have to admit that by making the sensible decision for my health, my disability is excluding me from being involved in something with my best friends that, prior to my injury, would have been something I would’ve enjoyed greatly.  

Finally, the biggest regret that I think all ABI victims have is the mourning of the losses we have suffered. It is easy to become depressed by looking at the things we can’t do anymore and resenting the loss of certain skills, capacities and abilities we had. All of these things combined can have a tendency to pull my mood down and get stuck in that never-ending cycle of thinking negatively and resenting both my overall situation and myself.

Over the last few weeks I have spoken of mindfulness. I have studied the disciplines of mindfulness, positive thinking and so forth but as you see from what I have written above (which are only a smattering of the thoughts I have that affect my mood), I have clearly not mastered it so that my issues with depression and low mood are totally under control. But here are some of the ways I try to help myself when these periods of depression take control.

  • Be Pro-Active – By this what I mean is to have something that you are moving towards. I find that these ill feelings and poisonous thoughts occur most often when things in my life are static and I feel that I am going nowhere. Exert your energies as regularly as possible into things that fill you up, things that make you feel good. Don’t just do them for the sake of doing them though. Try and set yourself a goal or target to reach. It could be a target to do with your physical health, with certain abilities, employment or anything! Stay occupied and be ambitious is the advice I would give. There is no reason why we, as people with disabilities can’t achieve the things we want, the same as anyone else.
  • Try To See The Beauty In Life – This is one of the things I have found particularly over the last few months. When you look at the world try and see the beauty around you. It probably sounds corny or cheesy but it is there; the ocean, the fields, laughing children, the beauty of the world is all around us. All we have to do is find it and see it for what it is and through that lens. That life is beautiful and that it can be beautiful for us to.
  • Consume Positive Media – This plays a big part in helping me when I’m struggling with issues of depression. Depression is like being trapped in a cell with no windows, the air is stifling, it can be claustrophobic and it can even feel as though drawing breath is a chore or a difficulty. When we trapped in that cell, we need for a light to come on and a window to be opened. When we feel more comfortable and at ease with ourselves, the light becomes brighter, it’s easier to breathe and we can see the door. We can turn the handle and struggle our way out. Despite previous posts where I have highlighted the negative impact of the media and the way that television news and newspapers have portrayed people with disabilities over the last 4/5 years, media can also have a positive impact on the way we feel about ourselves and the way we see things. There are poems, books, short stories, film and music. All that tell the story of good deeds, talk about the emotions that are the antithesis to depression; love, hope, friendship, beauty, bravery, independence, doing the right thing and overcoming adversity. I find, very often, that the things we consume can be the catalyst for the light we need when we are locked in the cell that is depression.
  • Positive AffirmationAlways take a moment at the beginning of each day and at the end of each day to look at what you have done and recognize your achievements. Take even the smallest victory you have had and take the time to give yourself credit for that and make sure that you recognise that you were the one who did it. We are often too quick to pass on credit for the little things we have done to others or acknowledge that without a certain circumstance it could not have happened. Be kind to yourself and acknowledge the credit for your own achievements! No one else did it, YOU DID!

Anger & Irritability

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 This has certainly become less of an issue now since I have taken more control over my own life. Over the last 9/10 months, I made the decision to focus on my blogging and writing full time so that I could control my situation. I realized that the main trigger for the anger and irritability I was suffering was down to situations I couldn’t control (customer’s at work, accidents or disorganization at work). When I returned home I would take out my anger and frustrations on my family. I realised that I needed a change. So here is my advice for those who are suffering from similar situations.

  • Take Control Most often it is an external presence that is causing the anger issues we are suffering from. For me it was work and the frustrations and other issues that came from it (I was working as a waiter!). Often people feel that this external presence can be an obstacle that cannot be passed or altered. It is absolutely not the case. We have to take control of our lives; it is just about working up the nerve to do it! Using work as an example, I found that to control the hours I worked, to not have to follow the instructions of others and not be under a pressure to present myself (in terms of my personality) to people and not have to worry about potential mishaps in that environment has helped me massively and that many of the anger issues I was suffering from have abated.
  • Have An Outlet Find a way to relieve any issues of anger you have through an outlet that is either fun or constructive. Many people use exercise for instance. Though I find that is more useful for me to relax and find piece of mind and lift my mood. My outlet in fact is a more sedentary one. I play video games. Mostly first person shooters and shooter games anyway. But this also has a second advantage, not only do I get to blow stuff up and shoot the opposition in my games, it is also suggested in research that playing video games can be beneficial post-ABI (unless you suffer from photosensitive epilepsy) as it exercises multiple brain functions at the same time (sensory function, cognitive thought via gaming strategies, co-ordination and dexterity of the hands by using the controller, and testing fatigue by how much you can play as they do stimulate the brain very much). Either find an outlet that is fun, constructive or both.
  • Draw A Line – There has to be a line where the issues of work or whatever it is that initiates these feelings of anger is drawn. There are obviously serious matters that need to be considered and have every right to make you mad, but there are certain issues you just have to accept are out of your control and should not or will not affect you.The action of others for example, which was a large issue for me, and my reaction to them, was something I had to find a way to control. The actions of customers and even work colleagues could drive me to the brink of despair. But once I got my head around the fact that I had no control over what those people do or say, the problems became less common.It is kind of like picking your battles in your own mind. There are things that we have every right to get angry about but there are some things that get us so worked up it doesn’t seem to be a proportional reaction. It’s about accepting what we can control and what we can’t as well as having a reasonable expectation of fairness and what is right.

Face to Face With Myself

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So, this is me in all my dysfunctional glory. I hope that some of the techniques I suggested in handling my mental health issues can prove useful to anyone who reads this. I realize I have droned on a lot longer than usual but I hope it will be worth it so I can try to help people tackle the nitty-gritty of mental health and actually help people find productive ways to help themselves along the way after something as life altering as an ABI. I think it is fair to say that when we know ourselves, how our mind works and where the emotional weak points are, then we will be better prepared for mastering those emotions and mental states when they start to take control. Thanks for reading. Remember; check out my Twitter page @ABIblogger and my Instagram page abi_blogger for more ABI info. Hope you’ll be back to read again soon.

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.

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 

Epilepsy – A Monster In The Shadows

Epilepsy – A Monster In The Shadows

National Epilepsy Week; a week to raise awareness of epilepsy, steps to take when someone has a seizure and the potential ramifications of regularly occurring seizures and the way that lives can be altered, changed and devastated by the effects of epilepsy as a condition.

I have agonized over this for the last few days, thinking how best to write a piece that would bring attention and raise awareness regarding epilepsy. Equally important, I have wondered how any words that I write down here can have an impact that may contribute to positive change that make day-to-day living with the condition of epilepsy any easier.

I have struggled with the idea of writing a rallying call, a way that if we all contribute we can improve the facilities, work environments and conditions as well as eliminate stigma and the negative connotations that are still attached to epilepsy. However, I came to a decision before I started writing today, that for me to attempt to write something as epic and revolutionary as that between one thousand and one thousand five hundred word in length would be a futile enterprise.

I intend merely to examine the effect of epilepsy on the lives of people and the issues that epilepsy has as a condition that prevent it from being both accommodated for in current society and for people who suffer from the condition to be assisted in their day-to-day lives while out and about.

How It’s Different

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The main issue I see with epilepsy is also a key one in identifying how it differs from other disabilities, neurological ones or otherwise. Specifically what I mean here is that the most prominent effect of the condition, when a person suffers a seizure, is not static. It is different from other disabilities in that sense. For example, with sensory disabilities lets use blindness as an example, it is a static condition; the effects are consistent. The condition very rarely worsens or improves but remains static. I suppose, in that same way disabilities such as paralysis are static and the lives that wheelchair users have to live are similar in the sense that they rarely improve or worsen.

The point I am trying to make by using those two examples is not to try and get into a “who has it worse?” style, slanging match but merely to emphasise where I believe the differences in these disabilities and epilepsy are and I believe it to be very significant.

In the static nature of disabilities such as the examples I gave, blindness and paralysis, there comes with that a consistency. There is a knowledge to both the victim of the disability and just as importantly to the outside world what action can be taken, and should be taken, to aid people who suffer from these disabilities to live as full a life as possible while managing their disability as best they can with the help of family, friends and carers. Many positive actions have been implemented to aid people in wheelchairs such as wheelchair accessible ramps and lifts to aid with staircases, adaptations to public transports such as accessibility ramps that can be lowered as well as sections of buses & trains they can sit in that allow room for their wheelchair with instructions on how and where to sit to keep them as safe as possible. Similarly there are the use of things such as tactile paving, sound based aids at road crossings and improved increased advertising regarding guide dogs to lead the blind.

What I am saying I suppose, is that when a society knows what to do, how to react, how to aid a certain disability and what to expect, it can take steps to ensure the aid and protection of people suffering with those disabilities. When it comes to epilepsy though, to take a quote from the Epilepsy Society’s letter regarding applications for work and welfare, which I will be referring to throughout the remainder of this post:

“Epilepsy is a condition that poses unique challenges to those living with it and should be considered a ‘special case’.”

Epilepsy Society UK

A Special Case

First Aid

 There are many aspects of epilepsy that make it a special case and make it a very challenging issue to deal with in terms of awareness and aids being provided in every day life. Firstly, we as patients have to accept the fact that more often than not, the condition cannot really be explained; why we have it, what caused it and very often what the triggers for a seizure are. This is where that issue of a condition being static comes back into play. When a seizure occurs in a patient it often happens at the most inappropriate time (then again I would say that there isn’t really an appropriate time for one to occur) and that for me, they come very often, out of the blue and with no warning with my seizures lasting a proximately two minutes and normally taking me forty eight hours to recover from (I suffer from full on tonic-clonic seizures).

Though some people do get warnings and know what triggers their seizures, giving them time to either get to a safe position or to avoid certain situations or places that would be likely to induce one. For some, seizures last for only thirty seconds say. Then there are what I have come to call absences (formerly “blips”, something I also suffered from), which are tiny seizures that last for a matter of second, maybe less, so that they are barely noticeable. Sometimes it even takes the patient a long time to realise that these absences of awareness and concentration are in fact mini-epileptic seizures (as was the case with me. It wasn’t until my early/mid-teens that the presence of these absences was realized and diagnosed). The complexity and wide variety of seizure types, triggers and the effects they have on different people are the main obstacles in epilepsy being tackled or brought up within the current disability discourse, as the quote from the Epilepsy Society’s letter below suggests.

“Some people know their seizure triggers, making them easier to avoid. Some get a warning a few seconds or minutes beforehand, allowing them to get to safety before it develops. For most, seizures are unpredictable, a constant fear of what might happen and when.”

Epilepsy Society UK

The point is that epilepsy, as a condition is actually not fully understood, even by professionals. Obviously they know much and can help you to try and manage the condition. But the scale of epilepsy, its seizure types, manifestations and outcomes is so large, ever changing and unpredictable that to be able to aid the people who suffer from it who are walking down the street becomes almost an impossible task. As an example of the way that epilepsy evolves, I have started to have seizures during the night, while I sleep, a particularly dangerous type of epilepsy.

Even the same types of seizure affect different people in different ways and produce hugely different experiences. Another extract from the Epilepsy Society’s letter reiterates and concludes all that I have touched upon in this segment.

“Epilepsy types and seizures vary in different people and can also change over time in an individual. There are over forty different types of seizure and even people with the same seizure type have very different experiences. It is not possible to generalize about the impact of epilepsy.”

Epilepsy Society

How De We Deal With This?

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I have to say that I am not as close to any close answer or solution to tackle the issues that epilepsy presents. The thing that I would say is that if you or someone close to you suffers from epilepsy and seizures continue to occur regularly firstly seek help from a professional. It could be that something as simple as a medication change could solve the issue (as was the case with me. Recently started a regime to change my medication from Sodium Valproate to Levetiracetam and I have not had a seizure for over three months, hooray!). But it could be that the seizures are brought on by the very nature of epilepsy and the things I have discussed above.

The unpredictability of this strange and terrible disability can have huge effects on a person’s confidence and state of mind. Sometimes epilepsy can feel like a monster that is stalking you, ever present in the background, sharpening its claws and waiting to pounce at the most inopportune moment. This feeling can be overwhelming seizures are uncontrolled. The key that I have found, even during those periods where the condition was uncontrolled, is to not let the condition rule me and dictate my life through fear and anxiety. Because epilepsy does produce emotional and psychological effects that cannot be ignored or even acknowledged I would say. I realize that that is all well and good for me to say, but if we allow those feelings of fear and distress to overwhelm us it will only worsen the condition, turning the epilepsy into a cyclical condition. As a final extract from the Epilepsy Society’s letter it explains how that works: “Seizures can be debilitating for the duration and for some time afterwards. Not knowing when a seizure will happen is disabling and can lead to fear, anxiety and isolation.” It then goes on to say that: “People with epilepsy can experience emotional and psychological effects on health. Memory loss, concentration problems, depression and anxiety all impact on seizure control, creating a vicious cycle.”

So, by ensuring that we are taking the correct medication in the correct dosages, with the help and support of family and friends to enable us to live a life where we can socialise, exercise, be creative and boost our confidence, we can contribute to managing epilepsy ourselves. In my opinion, this will be a key aspect to living with epilepsy. All the evidence and everything I have listened to in the discourse surrounding disability in the UK suggests that it will be an impossible thing for society to accommodate for in terms of facilities. We need to make sure that this point is continually raised to ensure that epilepsy is included in discussion surrounding disability and treated as seriously as it deserves to be so that in the future as more is learned about the condition, facilities, services and accommodations can be made and put in place in society.

Thanks for reading everyone. I hope you have found the post to be useful and informative. If you want to read more of my work on ABI, TBI and brain injury awareness follow my blog. Just so people know, another copy of this post can be found on

Headway Worcestershire‘s website as well as plenty of other useful information and inspiring stories regarding brain injury. If you are looking for more information regarding epilepsy, I would start with Epilepsy Action UK and The Epilepsy Society for lots of helpful information on living with and caring for people with epilepsy from two outstanding charities who work tirelessly to help people like you and I. If you want to read more of my work, follow me on Twitter, my handle is @ABIblogger and on my Instagram page where I have now changed my user name to abi_blogger