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!

A Cruel World In The UK

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

All Good Will Is Gone

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

The Power of Government & Media

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

– John Cleese

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

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

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

How I interpret These Changes

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

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

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

(Very Few) Exceptions To The Rule

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

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

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

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

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

Why We Shouldn’t Simplify ABI Recovery

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

Something To Remember…

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

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

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

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

What Are The Sociological Outcomes Of This?

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

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

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

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

 

What Can We Take From This?

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

Albert Einstein

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

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

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

 

 

Only Lessons

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

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

Failure

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

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

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

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

Engaging With Things & Testing Ourselves

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

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

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

No Failure, Only Lessons

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

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

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 – Taking Back Control

I have only just realised it, but it is only now that I have written the previous four posts on Independence, healthEmployment as well as the idea of Gradual Gains as a method of obtaining these goals, that I am in a position to write this particular post. It all comes back to that idea of self-assessment regarding ABI recovery that I posted at the start of the New Year. We have to be constantly aware of our weaknesses and the issues we have after suffering something as life changing as an ABI. Not only that but we have to always be conscious to the potential challenges, struggles and, sorry to say this, prejudices we may come up against when it comes to addressing those difficult tasks.

Back To That Metaphor

I come back to the same metaphor, the idea of building a house, using that metaphor has allowed me to prioritize what I am hoping to achieve regarding my recovery and given me some kind of perspective in terms of what a successful life after ABI means, just how difficult it will be and how long it could take. To say it could take a long time is silly really, it is now six and a half years since my injury, I live at home with my mum and dad, I have no job and my situation regarding health such as epilepsy, anxiety and anger is still in bad shape. Since I have shared with you what my main goals are, I am now going to share with you the order in which I am going to prioritize and pursue them.

  1. Health Is My Foundation – I have realized as my struggle with an ABI continues that if your health, whether the state of health is an affliction that is a consequence of the injury or a pre-existing condition, a poor state of health always has the potential to pull you back. Take me for example; I am currently working hard to change my life style in a way that may positively affect my epilepsy and the frequency of my seizures. I have drastically reduced my caffeine intake, given up smoking, and started taking multi-vitamins and drinking pro-biotic drinks as well as undergoing a drastic change in types and amounts of medication. The main reason for these changes is due to the fact that so long as epilepsy still has the potential to disrupt my life at random and, often, inconvenient times, my chances of progress are poor. If I can conquer epilepsy, if I can control it and have it not control me, then it will provide me with a foundation I can build on to move forward with my life. The problem is that this can take time, so the best way to approach it is to concentrate fully on the health situation. Not to have any other distraction or targets in mind and gain as much control over your mind and body as you can.
  1. Employment & Financial Independence Are The Walls – When, and only when, I am sure that I am in control of any illnesses or conditions I have, I intend to start pursuing more ambitious goals regarding my writing ambitions. I have tried the paid work route, working for someone else and it has not worked mainly because of the restricted abilities I have as a result of my ABI. As such, I have decided to try and set up my own business as a freelance writer (which this blog is the start of really). As well as the idea of starting a business, other options are to find work within a private business, there is the option of seeking out businesses who profit from running programs by providing paid employment and empowering the disabled, or it could be that you will find fulfillment simply working voluntarily with charities. You will also find that there is government funded financial aid available. Once you have gained, hopefully paid employment, then you can start to dream about the idea of independence. Employment and hopefully, the wages you will be paid as a result will provide the walls that surround you and protect you; if you need something to help your situation you can buy it, if you wanted to obtain some kind of private medical care you could get it. It seems to me to be the next logical step in this recovery process.
  1. Full Independence Is The Roof – I think I can speak for many people who have suffered an ABI when I say that this is the overall goal. I think it would be naïve of me to suggest that we can live alone with no support ever again. However I do believe it is achievable for many of us to live a life where we have our own place of residence, we support ourselves or are as active as possible whether that is through paid employment or voluntary work.To say we can achieve these things alone would be, as I said, naïve, but with more than six years experience of living with an ABI, I know from experience that improvement and movement towards independence can happen. We can get the roof over our heads, the last part of our building project. It will be long, it will be difficult and it will be slow but we can move forwards and start to take control of our lives back, slowly but surely.
  2. Any Successes That Come After Are The Decorations

Taking Back Control

When it comes to all of the things I have posted about in previous weeks and prioritized above, as time progresses with an ABI,we come to the realization that it is not going to mend the same way a broken leg does. We will most likely be living with the consequences for the rest of our lives. So we start to question, if we are facing hardships (using my situation as an example) such as living at home, no job and not much of a social life, we start to question, “will things ever be better than this?”

The answer is that they can be. It is the changes we fear and the unknown challenges we are to face that frighten us most. But with the right attitude, a steady platform of health to build on, ensuring we know our limitations, we certainly can overcome those daunting tasks. Finally my most important point I think, is not trying to take on too much, too soon and to take on more than one thing at a time. When my situation gets me down, I try to think of it like the story of The Tortoise & The Hare, slow and steady wins the race!

 

 

Brain Injury Recovery – Employment

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

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

Where We Are At A Disadvantage

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

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

What To Consider When Thinking About Employment

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

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

What We Don’t Have To Stand For!

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

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

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

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

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

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

 

 

 

 

Brain Injury Recovery – Gradual Gains

The last two weeks I have focused on specific aspects of brain injury recovery and rehabilitation. My last two posts blog posts looking at Health and Independent Living and why they are significant to me and what you, me, all of us with ABI’s, need to consider when approaching those targets.

When I finished my last post on the importance of a good foundation of health, having the conditions we suffer from as a consequence of our injuries under control and as manageable as possible that a thought occurred to me. By putting these posts back to back, one following directly after the other, have I inadvertently sent a message out, that these targets and goals we all have, each individual to us depending on the extent of our injuries and our ambitions in life, should be addressed simultaneously.

This was a thought that I was suddenly worried by. The thing that I cannot stress enough is that each target we have on our list should be addressed slowly and patiently, worked towards with an attitude of gradual gains.

What Are Gradual Gains?

Gradual gains are a method of improving certain aspect of a person’s body. It is an old technique that has been used in sports fitness. It is a fairly simple premise of trying to make small improvements on certain aspects of the body that one knows to need improvement.

If I may give an example, say you are a cyclist trying to improve your fitness. The way to do this is not to do it in a short length of time with highly ambitious goals, saying to your self “I’m going to ride an extra thirty minutes on my bike today.” Something, which will potentially damage your muscles, cause fatigue and soreness, which will then takes a few days to recover from. The best way to obtain lasting improvement is to do the opposite, not to seek ambitious goals from the off. The final destination can be ambitious; in fact I think it should be, as I believe that we are all capable of achieving great things. For the cyclist though what should be the approach to gain long-term improvement is to say you are going to cycle for an extra two minutes and do that for a week. The following week he says I will do an extra three minutes, and do that for a week. The basic idea is to do a tiny but more each time for a week or so, where you don’t feel the difference in terms of the demands it places on you or the consequences when you’ve completed the task. I think the way that we approach our attempts at improvement should be through a series of small improvements over a long period of time.

How I used Gradual Gains In My Recovery (Physical)

This time, I will give an example that is more directly related to ABI patients and how this can work in our favour. When I left hospital and was discharged into my mum and dad’s care, I had been bed ridden for nearly 3 months. I was skin and bone, my muscle mass seemed to have evaporated and I could barely stand, let alone walk. Literally, as soon as I arrived home I was straight through the door and up to my bed where a room specifically for me with a TV and DVD player had been set up where I could sleep and eat and watch TV. That was predominantly what I did for the first few weeks of having arrived home. When I needed to go to the bathroom or have a shower, I would be escorted/supported to the bathroom by my dad, who would wait outside the bathroom until all I was all finished, then he would escort me back to my room.

After a month or so of this, having gained weight and put some muscle back on through the small amount of walking I had been doing pottering around the house, we decided to increase the amount of physical exercise I was doing. So now, each morning I would walk to the bottom of the garden and back and do the same again in the afternoon. Then as things such as balance, muscle mass and confidence improved we could start walking on the pavement up to the bus stop and back. So it continued. It took about six months until I was confident enough to walk to the bus stop, get the bus to town with my mum to have a cup of tea and then come back again.

How I Used Gradual Gains (Cognitive)

The technique that I have used and the example I gave regarded the improvement of my own physical condition. It must be stated though that the exercise can work in a cognitive sense as well (so long as you are rested enough post ABI).

Just as a quick example, if you find yourself getting to a point where you want to start reading again, start reading a simple book, large font, not hugely challenging or stimulating. Using that book start reading say, five pages a day (or another a manageable amount where you don’t feel as though you could sleep for twenty four hours after). Read five pages a day for two weeks. After those two weeks increase the amount of pages you are to read by one or two pages to six or seven pages a day, and do that for two weeks. Continue this process over a period of weeks. But the point is you can take your time with it and not over stimulate yourself. If you feel that the daily target is too much then decrease the amount you are attempting.

This did work for me but it took a long time. It was only when I went to university, around twelve to eighteen months after my ABI that I started this process. Reading had become a necessity, it had really started to become easier due to the fact that I was using this process and had started reading comics & graphic novels as well. So progress is slow with this method but I do believe that it prevents us from overworking ourselves. The fatigue we feel after we have done too much and gained excessive cognitive stimulation is the same as a cyclist that has sore mussels after a particularly long ride; he has tried too much, too fast and his body wasn’t ready.

So, What Is It That I’m Saying?

What I’m saying is, that if you take the two examples I gave, the cyclist and the ABI patient, they are two vastly different examples of people with different aims and ambitions. The point I am trying to make is more regarding the time span of which they intend to achieve their goals. I have said many times in my blog and I’m sure that countless doctors and consultants have told you that the recovery process from an ABI takes time. This was my main fear that was based on the last two posts; I didn’t want anyone reading this to feel as though I was encouraging them to take on too much at the same time. In fact, right now, I want to emphasize the opposite.

Take your time with all the goals you aim for and I would advise, based on my own experiences, to take on one challenge at a time, seeking small improvements over a long period. That way we stop ourselves becoming overwhelmed by fatigue or other issues that may crop up (my epilepsy is a good example there). We need to make sure one thing is secure and under our control before we move on to the next thing. ABI recovery is a step-by-step process, a marathon, not a sprint.

 

Brain Injury Recovery – Independent Living

In my post the week before last, I moved on from asking Where Am I Now? am now regarding my brain injury https://lifeafterabraininjurydotorg.wordpress.com/2016/01/28/where-am-i-now/; asking questions like, what are the permanent physical consequences of my injury & how does my injury affect me both socially and domestically? What are my strengths & weaknesses? After I felt I had answered those questions in a sufficient manner, the next step was to highlight the goals that were most important to me. The intention to assess them and look at the potential difficulties I would likely encounter. https://lifeafterabraininjurydotorg.wordpress.com/2016/02/04/brain-injury-recovery-where-do-i-want-to-be/ Then I could think about how I would go about achieving them, the steps that needed to be taken, taking into account the answers to the first question I asked. Following on from last week and the goals I picked out as being most important to me, here is my view on my own situation regarding moving out and living independently.

Getting Out On Our Own

This is something that every adult, young or old, male or female, rich or poor, disabled or fully abled wants as they progress through life; independent living. As you get older and become an adult there are certain things that change in who we are. We develop social lives, a love life, particular interests and hobbies that are our own. We come to the conclusion that we want our own personal space; we do not need to be under the constant watchful eye of a parent. We can look after ourselves, perhaps in a nice, cheap, little one bedroom flat. With some tender love and care and some Ikea furniture, we could definitely make that place our own.

The Considerations & The Struggles

In the paragraph above, I painted a very romantic picture of what living independently is like. What I learned from my own experiences is that there are pretty severe reality checks in store. We hold the kind of romantic vision I described above in our heads. However, what comes with living independently is a series of heavy responsibilities that need to be taken seriously.

There are contracts to be signed, rent to be paid, direct debits to set up, bills to be paid to name just a few and finally, ensuring you are earning/receiving the money to ensure all of the payments can be handled. Also we must consider the fact we have to look after our new abode and we are also depending on ourselves for survival in terms of food, money and all the other necessities involved in life. We also must manage our conditions that have accompanied the ABI. We cannot be under any illusion that we will get to a point where these disabilities will go away completely. However, There may come a time with the right discipline, help and determination that we can get them under control. A position where we control our conditions as opposed to the conditions controlling us. To do that though means being strict in terms of taking the right medication at the right times.

Why I Do Not Live Independently

I have tried on three separate occasions with varying degrees of success to live independently. The main obstacle in this process over the past five years has been the ever-worsening extent of my epilepsy. Here are the ways I have tried to live independently

  • University was, to all extents a success. I achieved a 2:1 (BA) degree despite my ABI with a lot of support from the university and epileptic episodes were kept to a minimum.
  • After university, I went to live in London to pursue my dream of being a writer. Again, epileptic episodes were at a minimum but slightly higher than they were at university, which meant my dad having to come all the way to London once a month to check on how things were going with me.
  • After a year of living in London due to financial reasons as well as health reasons it was necessary to move back to Dorset. Upon my return, I found myself a flat and a job. It was at this point that things took a turn for the worse.

While I was living independently in Dorset, the number of seizures I was having escalated hugely. Being a larger than average young man (around 6,2 and 17.5 stone) I usually end up with a broken bone or a losing some teeth after a fit and living alone put me at huge risk if, for some reason, the fit I was having escalated and my health was put in more jeopardy. With the seizure’s becoming more and more regular and the potential risk to my health while I had one rising, it had become clear that living on my own just wasn’t practical or sensible at the time.

What Did I Learn From My Attempts?

What did I learn? Well, firstly that living alone and having your own space allows you to be who you truly are and it is wonderful to have that kind of freedom and independence. What we should all be aware of though, is what that truly means. Independence means you are doing it for yourself. For people in our type of situation where there could be a crisis or an emergency regarding many things; physical health, mental health, panic or anxiety attacks, it may be a good idea to ensure the place you have chosen to live is not to far away from people you trust who will make every effort to help you.

Secondly, I would say that moving out and taking care of a place of your own is far more complex just in terms of the technicalities and bureaucracy that are involved in making the whole thing official. Sorting out housing contracts, direct debits, council tax and ensuring that the place is right for you depending on your situation are complex issues that can be confusing for anyone, let alone someone who has suffered an ABI. This leads me to number three…

The third thing I learnt follows on directly from number two. I would advise anyone who has suffered an ABI to get someone reliable whom you trust to act as an advocate on your behalf. Or, if it is necessary, take advantage of the help the social services may be able to provide or it may even be a good idea to go and see an attorney who can help guide you through the process and help clear up any misunderstandings so you know exactly what it is you are signing up for. Just to clear up the bureaucracy that is in all those contracts. It is unfortunate, but there will be people out there who may try to take advantage of situations such as ours.

My last Piece Of Advice

Finally, My biggest piece of advice to anyone recovering from an ABI or a disability is to not rush the process. To take your recovery a step at a time and this is one of those steps that should only happen when everything is in place and everything is ready for it to happen. Particularly, only when you are healthy enough for it to happen. That is when you will have the most chance of success.

Brain Injury Recovery – Where Do I Want To Be?

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

Going Back A Bit…

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

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

Where We Are Now?

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

Where Do I want To Be?

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

Independent Living

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

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

Finding Employment

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

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

Looking After Myself

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

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

To Have Control Of My Life Back

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

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