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.

typewriter-1138667_1280

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.

window-view-1081788_640

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

forest-977718_1280

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

horse-73477_1280

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

children-725143_1280

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

business-idea-1240834_1280

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!

Advertisements

Post-ABI: Depression

Post-ABI: Depression

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

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

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

Mental Health Issues I Struggled With

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

Depression

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

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

Lifestyle Tips

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

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

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

Advice For Carers

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

The Importance Of Family

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

What My Family & I Have Learned

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

What Can The Family Provide After An ABI

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

-T. S. Eliot

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

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

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

How Does ABI Fit In To Current UK Society?

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

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

Playing To Win

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

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

Why We Shouldn’t Simplify ABI Recovery

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

Something To Remember…

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

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

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

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

What Are The Sociological Outcomes Of This?

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

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

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

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

 

What Can We Take From This?

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

Albert Einstein

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

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

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

 

 

Only Lessons

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

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

Failure

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

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

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

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

Engaging With Things & Testing Ourselves

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

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

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

No Failure, Only Lessons

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

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

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.

Where Am I Now?

Hi folks! I am back again after a week or so off due to epilepsy related complications. It would appear that I am becoming resistant to my current medication (Epilim Chrono or Sodium Valproate). I actually had six seizures in the one night last week and would not come out of them so I spent a little time in hospital and have taken some time off as my body becomes accustomed to the new drugs I have been prescribed. So I can only apologise and hope you will understand my absence last week. But now, onwards with the blog and where I left you last we met.

As I mentioned in last weeks post, the process of assessing the self is a difficult one. I have decided to share with you the ways in which I have looked at myself since I took a break over the Christmas period and the conclusions I have come to. This should hopefully give you a better idea of the type of things we need to examine about ourselves when approaching recovery as well as establishing where is it we want to get to and what are the things that are holding us back. Now, as I start with the assessment process, I ask myself what is holding me back? Lets start with the obvious…

My Brain Injury

When I suffered my ABI in August of 2009 my parents were informed that it was very unlikely I would survive. I was admitted to Southampton Hospital with a GCS (Glasgow Coma Scale) of 3 (the worst you can be) after suffering a subdural haematoma, bilateral frontal contusions, and subarachnoid blood in the basal cisterns, a midline shift and multiple skull fractures.

I am extremely lucky to be alive let alone here typing away and talking to all of you fantastic readers. I made a fairly successful recovery and have been very fortunate in terms of the effects the injury has had on me permanently. Below I go into the consequences of my ABI that I am still living with today.

  1. Deafness & Tinnitus (a constant ringing) in my left ear.
  2. Loss of sense of taste & smell.
  3. Diplopia in my left eye (a state of constant double vision due to my eyes being knocked out of alignment, a surgical correction took place but I have been told this correction is only temporary).
  4. Loss of balance (I can’t stand on one leg).
  5. Short & long-term memory issues.
  6. Slower processing of information and responsiveness.
  7. Social conduct and propriety (in terms of not filtering what I say before it comes out of my mouth).
  8. Short temper.
  9. Issues regarding personal space and proximity to people.
  10. Mental health issues – now I am not sure whether this is down to the ABI entirely. However, I am placing it on this list, as it is definitely an issue that didn’t occur until after the injury happened. The problems I am having seem to be based (mostly) around issues in my life that have come up since the ABI or are directly related to the ABI.

These are just some of the issues I am dealing with in the here and now. Some of them are physical disabilities, others are issues regarding my cognitive abilities and some don’t fit into either category (see number eleven). I know that there are more issues that I have not mentioned; I just cannot remember them all (see number six).

When I look at the list I have made and I think about each disability alone, they do not seem to be that bad, especially when I look at them in a positive note by considering what could have been. There are plenty of people who have to live with far worse things than I do after a brain injury. However, I would also say that when you put all of these things, all these afflictions together, it makes for quite a difficult lot to manage day to day. I do believe though that very few of the disabilities listed above are things that cannot be compensated for, improved upon or worked around with the right attitude and work ethic.

Home Life

As a consequence of my brain injury I am currently living at home with my parents. Now, as a twenty-six year old man, this is not ideal. We only live in a small, rented house that is not really big enough for my parents and me. We’re currently living in a small village where there is little to do so my social life is non-existent and it becomes very difficult to meet people.

Having said all of this, I have to say that I will always be grateful to my parents for allowing me houseroom. After trying to live independently saw a rise in the number of epileptic seizures I was having, it was becoming clear that I needed support and that living alone was not a viable option for me at the present moment. To move back in with my parents was a difficult decision to make but I know it was the right one for me at the time. I now know that I have the support I need should a seizure occur but they are also kind enough to ensure that I have time to focus on my writing ambitions without dealing with all of the stresses, pressures and responsibilities of living independently.

Work Life

One downside though is that the epilepsy has continued since I moved in with my parents and has had a pretty big impact on lots of aspects of my life. One thing you should probably know is that I am currently unemployed. I suffered many seizures while working for one of my old employers. She was extremely understanding about the situation and was aware of what action to take should one take place. At my most recent job however, I was made redundant just two days after suffering a seizure at work (the first one that I had there incidentally). I couldn’t tell you whether that is coincidence or not but it seems pretty suspect to me.

Social Life

My social life is something that has suffered quite badly since I suffered my ABI. Prior to the injury I was somebody who enjoyed a good night out on the beer on Friday and Saturday night followed by a take-away, before arriving home late. This is certainly an aspect of my life that is no longer possible due to the affect alcohol has on the way and the speed my brain processes information the day after. The consumption of alcohol also makes it more likely for me to have a seizure during the following days.

I know this may sound strange (although perhaps to some people reading this it doesn’t because they know exactly where I am coming from) but I live in a town where there are very few opportunities, facilities and activities. This means that going to the pub in the evening is a big part of people’s social life. There is very little that can be done from a social perspective that does not revolve around pub life and the people in them. But what if this does not suit me? Or what if I do not want to do this or am unable to do this? What are my other choices? Go somewhere else, I suppose.

Saying that, I also happen to be a fair distance from any of the major cities, Bournemouth being the closest which is a thirty mile trip one way, so many of the social opportunities that I would like to get involved in, that suit my interests are not realistic for me to pursue or get involved in. I can not do them where I live now, I can not fund the travel to go to the venues where they take place and I am very much alone in terms of having people with similar interests.

Conclusion

The subjects I have covered this week are a basic breakdown of my current situation in practical terms: how my ABI affects me, how those effects make living an independent life almost impossible for me in conventional terms. Over the coming weeks I will be exploring where it is I want to be and, if I cannot get there by conventional means, what alternative routes are there available for me to take? Then I will be moving on to specific issues I have that can not necessarily be solved but be worked around and compensated for to give me, and hopefully you, a better chance at a successful recovery.