Post ABI – Embracing The Reality With A Positive Mindset

My name is Tom; I am 26 years old and the survivor of an acquired brain injury. I have covered much of the initial issues that came up in the immediate aftermath of me suffering my injury. This post will be focusing on how a positive mindset can make all the difference to you as you move forward in your recovery.

I believe that the key is to assess where the limitations that have been placed on you make a difference and where they don’t. In my opinion, it is about allowing the situation to dictate certain elements of the way you live day to day because it has to. While at the same time, not allowing the injury to define who you are and what you can achieve in the grand scheme of things. Alright, so you may not be able to have a drink anymore, or play a certain sport that you enjoyed previously like rugby for instance, but going back to work? Going to university? Those are all achievable things, things that you can do with the right mindset.

ABI – The Inescapable Reality

We all know that as survivors of something like an ABI, we are affected everyday by the consequences of our injuries. Of course, we feel resentment and frustration towards something that is inescapable and that makes us feel marginalized when we look at those around us. There will be successes and failures on the road of recovery as there is for anyone but sometimes it can feel as though there is only failure. This post is to say to you that success, lasting success, can be achievable. A lot of successes depend very much on the way that you regard your injury when you approach potential opportunities and problems. Whether that is using your brain injury to get the things that you need, to channeling your frustration and anger into a constructive, or will you allow the injury to beat you? Will it go on to define who you are and what you are able to do for the rest of your life?

Accepting The Situation

It is only after many long stays at both ends of the spectrum between success and failure that the gains from the successes started to outweigh the losses of the failures. When I look back at my own experiences, it was out of a desire to live a life unaffected by brain injury that most of these failures seem to have stemmed from. Thinking I could do the same things as everyone else without any help, when the truth is I can’t. Or I can, but only with lots of help from loved ones and in a very well organised set of circumstances. Now I have finally decided to embrace my situation, not to hide from it or evade it, the successes are becoming more plentiful.

More recently, I have started to think in a more logical way regarding my ABI. As I have stated before, the after effects make us victims feel frustrated, angry and marginalized. We find ourselves asking “why me?” I have started to think though, that if the effects of the injury are here to stay, if the consequences of the ABI are going to be an ever present, shouldn’t we all try to find a way to turn these problems to our advantage?

What Do You Want!

I firmly believe that the majority of opportunities in life that are available for (for lack of a better word) “regular” people are accessible to people who have suffered from brain injuries. One thing that must be acknowledged is the amount of hard work that will go into accessing those openings. There is a lot of paperwork and bureaucracy to go through as well as the most problematic thing to overcome, difficult people in office jobs and positions of “power”. Seriously though, look at yourself, look at your situation and ask where do I want to be? What do I want to do? Do I want to go back to work, do I want get back into education, is there a particular job I want and so forth.

The key is, to set yourself a goal that you can work towards. Focusing your energy and applying yourself towards attaining that goal is not only a positive in terms of it helps to exercise your brain and improve its function (or it certainly did for me), but also it doesn’t allow you to fester on the things you have lost as you are focusing on something else. You have the knowledge that if you work for it you can achieve the same things as everyone else, which is a huge positive and helps drive you on.

Also, it is worth bearing in mind that while we currently live in a time where austerity is the word of the day, there is help out there. The important thing is to find resources who can offer help in guiding you toward the right kind of help that you may need. In the next couple of posts I will put up a few links that can help you get the right support to help you.

An Example

Pre-ABI I was weeks away from starting on my chosen university course. Something I had been looking forward to, as any nineteen year old does, with huge anticipation. To find post-ABI that I would have to wait at least another year before I could go was a real kick in the teeth. My neurologist told me that we would monitor my situation over the coming year and decide then, when it was easier to see what the long-term consequences of the injury would be. The thing was, while it was so frustrating knowing I would have to wait a full year before going to uni, the fact that I could still go motivated me more than anything else has ever done. I worked and worked, my father worked with the disabled students centre at my chosen university to ensure I would have all the support I needed. When the time came to be assessed again, my neurologist supported the idea of me going to uni as he believed it would benefit me in the long run (that is a very brief overview of the process of access to education, merely to talk about mindset, there will be more detailed information on this in the next post and over the coming weeks). I got to that point mostly from a determination not to allow my ABI to define who I was going to become. It shouldn’t define us! We can be what we want to be and achieve what we want to achieve, same as anyone else!

You Can Do It To!

I will say to you again that most of the things that people without head injuries do in life are accessible and achievable for ABI victims. The importance of a positive mindset cannot be underestimated, especially when combined with determination and a strong work ethic. Next week I will be sharing my experiences of accessing education and sharing some of the ways that helped me to become more independent. I will also share some of the servicesI had access to, without which, I probably wouldn’t have completed my degree.

Thanks again for those that have read today. As always, I am open to contact and constructive criticism if you want. I am available on Twitter @ABIblogger or you can follow and comment on here. Thanks again and be well!

 

 

 

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Charities & Organisations (Part 2)

My name is Tom Massey; I am 26 years old and I am a survivor of an Acquired Brain Injury. Last time out, I focused on the charities and organisations that can help victims and their families in a search for information and knowledge that can help you take a more a proactive approach to ABI recovery. In the last post, I focused on the work of Headway UK (https://www.headway.org.uk/home.aspx) and the Child Brain Injury Trust (http://childbraininjurytrust.org.uk) and the services they can provide for families. This time round I will be looking at a couple of others that may be of help to you.

The UK Acquired Brain Injury Forum (UKABIF)

UKABIF is a charity that sees it as its prime duty to raise awareness about brain injury, ensure a continued healthy dialogue between different organisations involved with brain injuries, as well as ensuring that the families affected by ABI’s have easy access to available information and local services. This charity offer a fantastic range of services and different information on their website for ABI affected families as well as holding educational events, conferences and workshops available for all areas of Joe Public. Finally, UKABIF offer a lot of practical advice and information on follow up services that may not necessarily fall under the category of “medical” but are nonetheless, hugely important. In short they are a fantastic source of invaluable information.

What Can UKABIF Offer You?

As the title “Brain Injury Forum” suggests UKABIF is a fantastic resource for obtaining appropriate information post-ABI. As well as providing information, through various events organized by UKABIF, the charity also offers an opportunity to network with other people involved in the area of brain injury, either affected by them in every day life or directly involved with them in a professional capacity. These events can be found on the website on a simple and easy to understand annual calendar, giving the dates, times and types of events being held each month.

Online Resources

The UKABIF state that their primary goal is to ensure “That people with acquired brain injury have early access to good quality local, specialist rehabilitation and follow up services in the community if they are needed.” From my own experiences very soon after my ABI, the process of getting what you need, when you need, in a place you can get to can be like banging your head against a wall. It can be so difficult to get what you need for your loved ones (which goes back to that issue regarding loved ones and our instinctive desire to protect them and help them solve their problems). The UKABIF make this much, much easier. The problem that we found is that it is difficult to find the information, as it is never all in one place. There are different things offered by different services and it’s difficult to know where to begin. For example, where do you find a rehabilitation care provider? Or someone to help with long-term care? Well UKABIF make this process easier with their online directory of rehabilitation services, providing contact numbers, addresses, names and locations to make this process far more accessible to you.

Help In Other Areas

The directory also provides a list of regional groups that assist with rehabilitation and care in the area of brain injury as well as suitable and trustworthy law firms for any legal issues. Again providing all the required contact information, sorted by region, to make the process as easy and streamlined as possible.

It is not just those three areas that are covered by the UKABIF. The Head & Brain Injury Signpost is an online resource that can direct you to appropriate organisations that can help you with other key areas of managing life after brain injury such as education, advocacy, financial support and welfare to name just a few. Each category provides has useful downloadable documents and links to other sites that can be of use.

The wonderful thing about the UKABIF is that it is not a static source of information. As the charity continues to expand its network, the website will be updated making that information available to you so you can take that advice and run with it. Below is the link to their website (which is very easy and free to join for those with a head injury or for carers) and their registered charity number.

Link: http://ukabif.org.uk

Charity Number: 1128284

Epilepsy Action UK

This is a slightly shorter post, as I’m not sure it applies to everyone but I know for sure that it applies to a lot of people post-ABI. Epilepsy affects roughly 50,000,000 people worldwide and yet still seems to carry a huge stigma with it. Epilepsy is often an after effect of a severe brain injury and I thought that I should put the details on here (it is particularly relevant for me as a victim of tonic-clonic seizures since the age of about seven).

Epilepsy Action UK is the country’s leading Epilepsy awareness charity. They are a member led association, meaning that many of the people working there suffer from the condition themselves. They see it as their task to improve the societal association and stigma that surrounds it and raise awareness on epilepsy, also to improve the live of those suffering with the condition.

The website offers basic information on essential things such as first-aid, what to do when someone is having a seizure, different courses that you can take, education and employment, the law regarding epilepsy equality, as well as health and safety advice. Most importantly, it provides information and helplines as to how people, young and old alike, can learn to live with their condition and enjoy a life just like everyone else.

The Online Services

The website offers online learning experiences and courses to teach people about the fundamentals of epilepsy, issues such as seizure triggers, memory problems, as well as stress and epilepsy medications are addressed. There is also the fantastic new resource, an interactive learning experience for children to teach them all about epilepsy to help them gain a better understanding of it. Thus, ensuring that they do not grow up to develop that negative association that has come to be part and parcel of epilepsy. Epilepsy Action UK also offers a new resource to train teachers and school support staff on supporting children with epilepsy.

Epilepsy Action UK is a registered charity and the charity number and link to their homepage can be found below.

Link: https://www.epilepsy.org.uk

Charity No: 234343

What Do We Gain From These Charities?

In the last two posts I have been looking at charities that I believe will, most likely, benefit those with a brain injury the most. The wonderful work these organisations do help millions of people around the UK. What make them particularly amazing are not just the contributions of everyday people, whether they are on a paid basis or voluntary basis. Nor is it the progress they make in obtaining new information. Both of these things are fantastic but I believe that it is the constant way they are adapting to meet the needs of people like us, the service users who would be struggling without this kind of help. So to every charity out there, related to head injury or not, I commend you and I am so grateful that you are there for us.

Thanks very much for reading. I hope that this will be useful to you and that you can gain something from the charities I have mentioned and through the fantastic work they do. I am always open to feedback and comments. I would love for you to follow me on Twitter (@ABIblogger) or get in touch via WordPress. Thank you and be well.

Charities & Organisations (Part 1)

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. Last time out I spoke about the type of advice ABI patients receive throughout the recovery process and the reactive nature of that advice. While the ABI recovery is certainly a long-term thing and the advice of specialist doctors and consultants is not to be ignored, I am of the opinion that there is also a pro-active element to recovery that can be of benefit to patients. There are definitely positives to be taken from the pro-active approach, the problem is, it seems to me, people often find themselves asking when it comes to finding out about the pro-active approach and obtaining the right knowledge, where do I start?

Charities and Organisations

It is here where the incredible work of charities and organisations come into play. There are many of them around that can provide information and advice, for patient and carer alike, to improve quality of life, answer questions, and just as importantly, provide simple, understandable explanations for people Due to the over complicated (and sometimes insensitive) way brain injuries can be explained to families, charities play a crucial role in talking us through a terrible situation in a kind and gentle manner that is easy to understand. Below are just a few of the organisations that may be able to help you in your search for knowledge, information and advice, with a brief summary of the type of things they may be able to help you with.

Headway UK (The Brain Injury Association)

Headway UK, through a network of more than one hundred groups and branches, works to aid families, patients and carers in understanding and coming to terms with the long-term effects of a head injury and what those effects will mean for everyone concerned. The charity is split into different organisations around the country, with a Headway branch dedicated solely to that specific region and tailoring services to fit the needs of that region.

What Can Headway UK Do For You?

Recovery programs are tailored to meet the precise needs of individuals who have suffered brain injuries as well as helping those that support the patient. Headway provides help in implementing those tailored recovery programs in the home environment and enable the patient to take steps forward, towards recovery. They provide many of the typical services required to aid the recovery process but go far beyond the call of duty.

As well as helping patients with things such as mobility, food preparation, assistance with medication, and patients budgeting their money (in other words the things we all have to deal with in every day life), they offer services such as befriending schemes to include 1:1 support for a patient, assistance in accessing community and social activities that may be appropriate. Not only that but Headway can assist in back to work schemes and in patients returning to education. Finally, these last two, which are so important, they have the services available to provide live in twenty-four hour care for those in such a situation that need it, as well as providing respite services for live-in carers who may need a break. These last two are so important in providing care as it is important for those looking after the patient (whether a trained carer or a family member) to have time to look after themself and live a life of their own to prevent the relationship between patient and carer becoming strained.

These are just a few of the services provided by the Headway UK charity. To find out more about services offered in your region, visit their website, a link can be found below along with its registered charity number.

Headway UK is a registered charity: (no 1025852 / SC039992) follow the link below for more information on their services.  https://www.headway.org.uk/home.aspxn

The Child Brain Injury Trust (CBIT)

The Child Brain Injury Trust works specifically with (surprisingly enough) Brain Injuries suffered and acquired during childhood. It is aimed more specifically at parents and those caring for the patient as they try to deal with the difficulties an ABI presents at that stage in a child’s life. Another key part of the work they do is trying to help parents plan for what is an uncertain future post-ABI.

What Do Child Brain Injury Trust Offer?

Through the actions of a team of efficiently coordinated regional child and family support workers, CBIT can help you provide a tailored rehabilitation and support program to meet the needs of the affected child. Of course, childhood is a time of constant change and development. As your child grows up, dealing with the after effects of an ABI, CBIT affords the programs flexibility and changes them as the child progresses from being a toddler, to pre-teens, into adolescence and beyond, fitting them around the lives of the children in question. As well as this, CBIT can put you in touch with the appropriate consultants, educational specialists, teachers, social workers, and psychologists (to name just a few professions) to give your child the best start in life and returning the playing field to something of a level surface, after suffering a life-changing trauma like an acquired brain injury. CBIT also maintain a focus on ensuring social opportunities for the affected children to ensure that they can integrate and engage with other children their own age.

A Learning Environment

As well as services such as the above, CBIT also provide learning experiences for parents and carers. There is an annual conference held usually in March, attended by parents of affected children as well as childhood ABI experts. There is an abundance of online resources and Webinars (web seminars) about living and dealing with children who have suffered an ABI for both parents and working professionals. For a more in depth look at childhood ABI’s you can attend one of their master seminars looking at very specific areas of the subject. Finally, again I believe that this is one of the most important learning experiences offered, the “Don’t Judge A Book By It’s Cover” workshop. This is a no-nonsense, jargon free approach to childhood ABI’s. This covers topics for people with little to no understanding or experience of working and interacting with children suffering from a brain injury. This workshop covers topics such as ‘what is an Acquired Brain Injury?’ ‘Supporting a child with a brain injury’, ‘Learning strategies’ and plenty more besides.

To find out more about The Child Brain Injury Trust (CBIT) the follow this link http://childbraininjurytrust.org.uk and they are a registered charity: No. 1113326

On Thursday I will be continuing with a few more charities that can often be of benefit to ABI patients. I hope that has been useful for you and you will get at least some of the answers you’re looking for from the two charities I have mentioned above. As always I always welcome feedback and have shortened the posts in response to a few readers suggestions and I hope that this length has been more manageable. Follow me on Twitter @ABIblogger, as I say, I am always open to constructive criticism. Thanks and be well!

Brain Injuries & The Search For Information (Doctors)

My name is Tom Massey; I am 26 years old and a survivor of an Acquired Brain Injury. So far I have posted a lot on my own experiences of living with the after effects of an Acquired Brain Injury and what I have learnt about society and myself in general. This post will take a different turn. Over the next few posts I will be looking at how we can obtain information, the nature of the information we receive as standard and how that can help us deal with those after effects and hopefully enable us to take a pro-active approach towards our recovery. These posts will look at what we are told by doctors and how the nature of ABI’s can restrict and dictate the type of knowledge that is passed on to us.

Much of this information I will be passing on is knowledge that has taken me nearly six years to acquire. To start off, I believe that as human beings, there is something almost instinctive about the way we react when a loved one is in danger or is struggling. We want to help them. We want to obtain the appropriate knowledge to be able to make their life easier, to improve their situation. Such is the nature of people that we also want that information now, we want it instantly because we do not want to see that person go through any more hurt than they have to. We want to provide a solution that will save them from physical or emotional harm. In essence I believe that we are problem solvers.

The Information & Advice We Are Given

I have been visiting neurologists and consultants, at least once every year, since I suffered from my ABI. The first time we visited my neurologist I was in the worst condition you would think possible. I had lost a huge amount of weight, my cognitive abilities were at their slowest and my senses (sight, hearing, smell etc.) had been drastically affected by my injury. I do not remember much of what was discussed really at this meeting, all I can remember is my parents asking lots of questions; craving the information that could fix the problem, that could fix me. We were given the task of ensuring that I followed the instructions and exercises set by my occupational therapist, try and get some physical conditioning back and to gain some weight. We were then booked back in for an appointment in a year’s time, to check on my progress. “Let’s see where we are in a years time after we’ve reached these goals,” he said.

Pro-Active vs. Reactive

The conclusion of this meeting was fairly reasonable at that time given my condition. Six years later, I realise that the advice I am being given in my annual appointments is very similar to that first appointment: setting goals (admittedly the goals became more ambitious as years went by) and then seeing where we are in a years time: an approach of play it by ear. The advice tends to be reactive in nature (as in waiting for things to happen, see how they go and then reacting to it) and tends to produce results in the long term.

This can be very frustrating for patients when all we want are answers, something that will produce tangible results of improvement in a short space of time, tying in to what I said about the inherent human desire to solve problems. However, I am of the opinion that we can’t place the blame on doctors for approaching methods of recovery in a cautious way. Doctors dealing with brain injuries essentially have their hands tied by the nature of the injury they are dealing with; by the nature of the beast, if you will.

A DIFFERENT TYPE OF ANIMAL

Illness is a difficult thing to deal with. Regardless of the type of illness it is always a disruption to life. Whether it is merely a case of having the flu and having to take a few days off work, or whether it is something life threatening like cancer, an illness where you take months off work to receive treatment. Illnesses such as those range from being inconvenient and a pain, to devastating the lives of families. From a medical perspective, I believe that a brain injury is a different entity. Now I must clarify when I say “different” I DO NOT MEAN WORSE, just different. They are different in the way you approach them, they are different in the way you treat them and they are different in terms of the aftermath.

The reason I say this, is because illnesses such as those I have mentioned, ones such as Cancer, they have a set of symptoms, a time line, and a way to treat those symptoms. That type of illness has a cure, the illness can be explained in terms of what is happening within the patient’s body in a very specific way and a doctor can explain to them a strategy as to what they are going to do and how the cure they are providing is going to fight the illness, once again, in a very specific way.

The Nature Of The Beast

The nature of a brain injury is quite different. Brain injury doctors do not deal in specifics. I have an appointment with my neurologist once, maybe twice a year. In those appointments, we discuss potential targets for the forthcoming year and any issues concerning me. There is very little that neurologists and other specialists in that area can give you in the way of specifics and more importantly help in gaining solutions to the problems that you want to solve. The reason behind that is a simple one in my opinion, it is due to the incredibly complex nature of the brain itself.

The key factor though and, in my opinion, the most influential reason behind this reactive approach: all brain injuries are different. It is impossible for a neurologist or consultant to predict what a patient is going to be like post-ABI: what they will struggle with, what they will find manageable, how they will react in social situations, how they are with problem solving and so on. While the body heals itself in a fairly short space of time; take me for example, the skull fractures I suffered from have long healed, as have the effects of the operations I underwent, and much of my sensory function has returned after a period of years. The issue with a brain injury is the healing process taking place in the parts that aren’t visible: the reproduction of brain cells, creating new thought pathways, and the brain generally healing itself is a long-term process that is impossible to predict. So most of the advice you will receive will be tailored to that end, playing the long game as it were.

Are There Other Ways Of Doing It?

There are certainly other ways of approaching the recovery and reparation of the brain but I will say the following: DO NOT IGNORE WHAT YOUR NEUROLOGIST SAYS. He or she after all, is the one with doctorate and after all I have said about reactive advice and approaches, while they are a long-term approach, producing results in the long-term (which can be incredibly frustrating for us patients and those around us), they are effective. What I would say is do not be afraid to experiment with certain things, certain activities or exercises such as going out for lunch or a cup of tea in a local cafe where a patients brain is “forced” (for lack of a better word) to engage and to work. However, these activities should only be done after you have carefully assessed the situation: the wellbeing, mental state and both cognitive and physical abilities of a patient. Also any task undertaken should be small and manageable with a good chance of success (going back to what I have said previously about small targets and building confidence) to help boost confidence and improve self-esteem. While I urge you to follow your doctor’s orders, I definitely benefitted in my recovery from thinking outside the box on occasions (well it was my parents who handled the box thinking duties really, whether inside or outside).

Where Can I Get Other Information?

A lack of information that enables you to get involved, be pro-active and get your hands dirty can be incredibly frustrating. A key part of easing those frustrations is searching for other fountains of knowledge that can help you. My next post on Monday will be talking about some of the organisations and charities and the tremendous work they do in providing opportunities, information and advice to patients, carers and families that can perhaps help you in the recovery process.

I hope that this has been of use to you and along with the next post can help you through what is a very frustrating as well as traumatic experience of trying to get the right information to make your recovery as successful as possible. Please keep reading my experiences and I hope they can be of help to you. Follow me on Twitter, my handle is @ABIblogger to get news of updates and other ABI related bits and pieces I post on there. Thank you for reading and look after yourselves.

Socialisation & Engagement (Part 3) – Some Hard Truths

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. The key points that I wanted to illustrate in the last two posts have been to highlight the aspects of your life that are affected by an ABI: the physical and cognitive limitations as well as constantly having to be aware of your general health and well being (more so than most other people) means that in many ways you are limited in what you can do in terms of building a social life post ABI. I also hope that I made my opinions clear that much of these limitations can be really emphasised by a lack of understanding from the general populace regarding head injuries. A healthy social life is something that I found to be key to my recovery, but once again it is something that can be difficult to establish and it may require thinking outside the box in terms of what may be out there that is doable for an ABI patient.

A Limitation of Freedoms

You need to find a way to be able to enjoy yourself and some people can get this gratification from the aspects of health and well being such as exercise and diet and so forth. Many people also get a lot of fulfillment from their occupations, however there does come a point where you need to address the fact that because of some of the limitations the ABI has left you with, you may not be able to go back to work for a while or do the same kind of work that you did before. Finding and keeping work has been a big struggle for me which I have found incredibly frustrating as someone who was brought up in a family where having a job has been not just important it has been a necessity since I was sixteen. So I am going to talk about my experiences of how my life has changed in terms of some of the things I can no longer do have difficulty doing that I perhaps took for granted pre-ABI.

Struggles With Work

Let us start with a for instance. As I have said in past posts, a lot of socialization stems from people’s employment. People going for a drink after work; or there is a work 5 a-side football team, there are even romances that begin at work. Not to mention, depending on the type of work you do, socializing can be a large part of it. Take me for example – pre-ABI, I was a waiter. My entire job description revolved around socializing with people; making them feel welcome, engaging with them and making them feel comfortable. Pre-ABI, I had five years of experience in the service industry and I was good at my job. Having spoken to doctors, I have been told that the service industry is probably the worst industry I could work in, in terms of what my brain would be able to tolerate.

My neurologist said to me that the unpredictability, the chaos and the constantly having to be aware of my surroundings, that is required in the service industry would be too much for me. That the stressful nature of the industry did not work well with an injury like an ABI. To give an example of a similar problem, it would be similar to a man with a bad back getting a job as a removal man. However, post ABI, I was foolish enough to attempt to re-enter that industry.

My return to the service industry resulted in a spike in my epileptic seizures: seizures on the way to work, seizures while I was at work, and these are Tonic-Clonic seizures (the kind you see in movies where the character collapses without warning and starts frothing at the mouth) so a pretty frightening experience for people around me. Fortunately, my first boss was fairly understanding towards me and seemed to think I was a good employee and kept me on… until the café closed. So I relocated to another place, a bistro pub this time. After three months, I had a seizure while I was at work. A day later, I returned to tell them I would be in for my scheduled shift on the Monday. When I arrived I was informed that I no longer worked there.

Now, I cannot prove that the seizure was the reason for my termination but at the same time, I never really received what I consider to be a justifiable reason for that termination, and the timing seems a little coincidental. As I said, I cannot prove that this was my reason for termination, but I believe it was. In my opinion, it was down to some of the issues I still have as a result of my ABI . In particular, the effect the ABI has on my epilepsy and how retaining information as long term memory made it difficult for me to learn the way a new employer wants me to do things and the methods and routine they use. That’s the worrying thing. While we like to believe in equal opportunity, and that we, as victims of ABI, are no different from others, in the eyes of others, we are. That statement is particularly relevant when it comes to employers. If a large-scale company with a union employs you, you’re less likely to have those kinds of issues as there are procedures that need to be adhered to and processes that need to be gone through.

However, smaller businesses, which do not have those sorts of protection for their employees, are less likely to persist with you, attempt to understand your situation, and help you make the necessary adjustments any new job requires. The reason being, and I’m sorry if this sounds cold but I am merely talking from my own experiences, that for an employer, its an inconvenience knowing that an employee could collapse at any point and disrupt the working day, or having to persist with them regarding the “on the job” training. It is much easier to get somebody in who does not have a situation you need to accommodate for.

This has left me in a position where I now have no job, through no real fault of my own, all of my previous work experience in the service industry counts for nothing as I have no other industry experience on my CV (with the exception of a years labouring when I left school at sixteen). I have had to move back in with my mum and dad as an epileptic I cannot live alone due to the health risk but due to fatigue I still suffer from as result of an ABI I cannot work full time anyway. The point I am trying to get to is, that even with something as seemingly mundane as applying for a job, the consequences of my ABI (and the effect those consequences have on my epilepsy) play a huge part in what I can and can’t apply for. As such, any job I am lucky enough to get will then have a large effect on my work life and life at home; either in the way it adversely affects my epilepsy, or my ability to engage with people in the work environment.

A Social Life

When I look at this part of my life, it is only really over the last year that I have taken charge of my social life. The thing is, after my ABI, I was determined to desperately cling to the life I had prior to it. I don’t think that this is unusual but I have not met many other ABI patients my own age to talk about it with. As I have said before, upon my discharge from hospital, there was a general feeling amongst my family and friends that things would return to a state of normality in due time. However, it took me nearly four years to recognize that this was not the case. The ABI was going to be permanent.

As I say, I was twenty years old when I was released from hospital (my twentieth birthday happening in the rehabilitation wing of a Dorset hospital). This time is a crucial time for young people, a time where we do not want to be inhibited by the rules of parents and the thoughts of general society. It is a time where we want to be free. Those years in the early twenties, in my opinion, are the years where you find out who you are and what you really want to do. I believe they define your future.

For me, I was a step back. I had to rediscover who I was before I could truly discover and define who I wanted to be. One of the key things that defined me was a realization, a moment of clarity if you will. The key to moving forward for me was the phrase “Who cares what they think?” Because the truth of the matter is, when you go through difficult times you find out who your friends are, at least I certainly did. The people who you need to keep in your life rise to the occasion magnificently. These people make allowances for your difficulties, your problems, and accept the reason you can’t do certain things because they are sympathetic, sensible, beautiful people trying to empathize with your situation. The vast majority of them however, you will rarely see again because to them, you are nothing more than an inconvenience and trust me you are better off without them.

It took me until years after the ABI to realize that many of the “evening out” options with people seemed to revolve around alcohol, at that age they do anyway (I’m not sure if it’s purely an age thing or whether the place I was living and the drinking culture that was there also contributed).

Since the ABI, I have greatly reduced my alcohol intake, my desire to drink is lessened greatly due to the way it makes me feel for the next day or so (absolutely awful if you must know). Unfortunately, I am and most likely always will be, one of those people who wants all or nothing. I have an addictive personality. I have a fairly heavy smoking habit (as in daily, though this was the case pre-ABI). If I want a drink, I want a lot of drink, you know? Over the last year, I really started to realize what the consumption of alcohol did to me; it had a tendency to induce seizures a few days after a booze binge (I recently found out that the time alcohol is most likely to induce a seizure is when it is just leaving the body, approx. 48 hours after the binge has taken place), or even if I didn’t have a seizure, I would be fit for nothing for 48 hours anyway. Over the last year or so, I have (for the most part) given up alcohol entirely, but as a result of that, what was previously a full diary in terms of my social life, now has very few entries.

The key to a healthy social life, where you might want to join some friends for a drink at a pub, is to surround yourself with people that have tried to empathize and attempt to understand your situation for what it is and why you can’t do the things that everyone else can. Surrounding yourself with people who are aware of your situation and care for your well being (not just their night out). This will not only benefit you in terms of your health and well being but, while you may find yourself with fewer friends in terms of the number, they will be better friends who want what is best for you. The absence of that added peer pressure, which for young people especially, can heavily influence decision making most often for the worse (that is a particularly relevant point because post-ABI, our decision making ability is not good at the best of times).

Let me give you an example. After I was discharged I was told that I was not allowed to drink alcohol for an entire year. I live in a very quiet town with very little going on. Going out for (often, more than) a few pints in the evening was a large part of our social lives for my friends and me. Since the ABI, I made it something of a mission to greatly reduce/give up boozing. Having made that decision, I realised that I am still in regular contact with only one of those people on a regular basis. This is because the others have faded away as they realized I would no longer be the beer-swilling socialite who would go along with what the group wanted to do, that I was pre-ABI. They were unwilling to make the effort to understand and make allowances for my abstinence.

As I have tried to make clear, building a social life that is of benefit to you as a patient and finding appropriate activities and (as a long term goal) appropriate employment is both extremely important and extremely difficult. So, on the next few posts I am going to focus on dealing with doctors and trying to understand where they are coming from. Following on from that, finding charities and organisations that allow for and ensure a safe environment for people with ABI ‘s and Brain Injuries in general to be able to socialise and meet people with similar interests and ideas.

My blog is only early stages so I am still getting to grips with the medium. I think I am starting to get the hang of what people are after, so I hope you are all gaining something from it. I will try from now, not to merely repeat what I did in terms of a methodology, but try to address how those things make me feel, how/whether they affect me today and my subsequent conclusions (what I have tried to do over the last few posts). I hope you will follow me on Twitter, my handle is @ABIblogger, and that my posts are beneficial to you, whether patient or carer.

World Mental Health Day! (Only A Day?)

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

Mental Health In The Context Of The UK Population

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

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

What Is It Like To Suffer From Mental Health Problems?

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

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

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

Media Representation Of Mental Health Problems

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

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

Mental Health In Relation To ABI

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

Ways ABI Patients Can Regain Control

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

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

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

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

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

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

Socialisation & Engagement (Part 2)

The last post relating to Socialisation and Engagement was focusing upon the limitations, both cognitive and physical, that an Acquired Brain Injury places on us as patients. This post will focus on how maintaining a healthy lifestyle can be a positive thing in many ways but also being aware of some of the ways that, despite the fact that it is essential, the routine that is often required in maintaining that lifestyle, can hinder the activities a patient may want to do in terms of how they socialise with other people.

Maintaining A Healthy Lifestyle

One of the key parts of a recovery is to try and maintain a healthy lifestyle. When I say this, I am not suggesting a patient becomes a gym addict and starts eating only super foods (When I say maintain a healthy lifestyle, much of what I am talking about is, generally, basic common sense). In this section, I am going to cover the three most important aspects of maintaining a healthy lifestyle post-ABI: exercise, diet and sleep.

Exercise

Finding the right type of exercise to do post-ABI can be very tricky. It is something I still have problems with today. I have always had a passion for contact sport (football, rugby) and I have never really got on that well with the gym. I found that the people who attended gyms used to intimidate me ever so slightly. Their impressive fitness and muscular physiques certainly bring about insecurities when you start to compare your own (in my case) less than impressive physique. It can also be embarrassing as you try to learn to use the equipment. In the months after a brain injury, the memory is in a terrible state in terms of committing short-term memory into long-term memory (as I have mentioned in previous posts). It can be very embarrassing when you have to keep going back to the personal trainers and other people who work at the gym, to ask how to use the treadmill for what seems like the hundredth time.

Both of these obstacles may seem like problems you should just “get over” and that you should just get on with things. However, exercise in itself, needs to be something that you enjoy and something that is fun, otherwise how do you expect to motivate yourself to do it. The other aspect (feelings of inferiority or stupidity while in a fitness environment such as leisure centre or gym) can be common for people without ABI’s, but for people with brain injuries it is a very likely outcome. To overcome this, one way is to perhaps have someone who is more aware or familiar with your situation accompany you to the gym, to make sure you can manage until your confidence and memory is at a suitable level to be able to go on your own. In the last post, I mentioned the idea that most people arrange activities specifically for the fully abled, majority. Unfortunately, the same is true for venues as well. While most venues will have disabled access and some disabled facilities, places such as gyms are, again, meant for the fully abled majority. This again isn’t necessarily the fault of the venue; it is more the combination of the way society views head injuries (particularly the lack of education surrounding them) as well as the fact the majority of people are fully abled and can retain information effectively and are physically able to use the gym equipment.

However, a fun way (though I must admit living in the countryside and on the coast made this more enjoyable) to get the heart pumping was to go for a nice long walk. Not only does it get the heart rate going, and the oxygen moving round the body, but walking for longer than thirty minutes at a brisk pace starts to then consume fats that are stored around your body. So it may help you to drop a few pounds if you wanted to. As well as helping you shed any unwanted poundage, regular exercise will help with releasing endorphins, known for lifting the mood; making those erratic moods, bouts of depression or lethargy less frequent.

Rest & Sleep

Rest and sleep play a massive part towards how patients can manage our day-to-day lives. This section is relatively short compared to the other two, but Getting into a sleeping pattern of going to bed at similar times each evening, getting up at similar times each morning, sleeping right the way through with unbroken sleep, and even having a period set aside for napping during the day have been hugely beneficial.

For me, a lack of a regular sleep pattern can cause huge disruption in so many ways. I end up sleeping stupidly late (to the extent where I often end up missing lunch!). This then means that the times of my meals are thrown out of sync and that I end up eating at irregular times at the detriment to my health. I used to eat late at night, when you do this and then go to sleep after, it means that you do not work off the calories you have consumed and those calories end up getting stored as fat and you end up putting on weight (Not to mention, that disrupted sleep patterns often have a tendency to exacerbate my epilepsy and cause seizures).

After much messing around with my sleep pattern over a period of six years, I have only recently started to establish a sleeping pattern which allows me to get everything done that I want to in a day and does not seem like a chore.

Diet

Diet will be another important aspect of your daily life after being released from hospital after an ABI. When I came out of hospital, after my spell in the induced coma, I was 64 lb.’s lighter than when I went it. I’m sure many of you experienced similar things while in hospital. Losing that amount of weight in such a short period of time is not healthy, even in the slightest. When the human body is deprived of food for that long it goes in to starvation mode, meaning it lives off of the sugars and fats that are stored in our bodies for as long as possible while storing everything it possibly can from what it consumes (that includes, if the length of starvation exceeds a certain point, your body breaking down the protein in your own muscles to lives off).

It then takes a long time to come out of this process. Having lost much of our body sugars and fats, post ABI, when we are able to eat solid food again, I found that I was ravenous, nearly all the time. This is due to the fact that much of my excess fats that my body used to chew on when I got hungry weren’t there anymore. So after I came out of hospital, I over ate. Massively. I went from being approx. 11 stone when I left hospital to somewhere between 17/18 stone in the space of approximately six months.

The thing was, that the weight gain did not seem to be a gradual thing (as I remember it). I suddenly found myself in a position where I was hugely overweight. I hated the way I look and the way that it made me feel. If I could stress anything to anyone out there reading this, it would be; please monitor a patients diet and the amount they are eating as well as when they are eating. Sometimes it may not be that they are hungry, it could just be that they are lonely or bored. I know that was certainly the case for me at certain points: I ate because I couldn’t do anything else or I had nobody to do anything with. That weight gain had a devastating effect on my (here’s that word again) confidence. Due to how I looked and the negative thoughts this created, my self-esteem and confidence could not have been lower. Confidence and self-esteem have big parts to play in how we socialize, particularly on our desire to socialize and engage with people. This kind of thing can add to that depression I mentioned earlier. It is key to ensure that our loved ones not only reassure us but that we are assured of ourselves at the same time.

These things may seem relatively simple when you consider them in every day terms. However, what I will say is that trying to adhere to a routine for things that seem so mundane such as the time you go to bed or the time you eat your meals, because what would it matter if I were to do those things an hour later? The trouble is, and speaking from a young persons perspective here, we want to be able to do things without structure, without being told what to do, we want to break the rules. After all, isn’t that what being a young person is about? This is where the truth smacks us brain injury patients right between the eyes, we realize that we are not the same as other young people. Our lives won’t be the same ever again and maintaining these fundamental aspects to improve our health means that we will inevitably miss out on the social freedoms we feel we deserve, just as everyone else deserves those freedoms. I will clarify what I mean by social freedoms in the next post. Until then, follow me on Twitter for more news (@ABIblogger). Thanks and hope to hear from you soon.