Epilepsy – A Monster In The Shadows

Epilepsy – A Monster In The Shadows

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

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

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

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

How It’s Different

Difference

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

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

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

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

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

Epilepsy Society UK

A Special Case

First Aid

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

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

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

Epilepsy Society UK

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

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

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

Epilepsy Society

How De We Deal With This?

Ideas:Questions

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

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

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

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

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

 

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ABI: Mind, Body & Soul (Day 3)

ABI: Mind, Body & Soul (Day 3)

Hi and welcome to day 3 of ABI: Mind, Body & Soul. As today is Thursday, my usual day for uploading a post I have tried to keep the subject matter in keeping with the focus of my weekly post regarding Life after an Acquired Brain Injury. So this week focuses on how different methods of thinking, different activities and ways of keeping yourself healthy, can help to fight off depression, the current subject matter I am dealing with in my regular weekly posts. I hope you enjoy part 3.

Mind

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Positive Thinking & Self-Affirmation

The main issue I have raised in my blog over the last two Thursdays (Mental Health: What We’re Dealing With, Mental Health: What We’re Dealing With (Part 2)) has been on fighting depression, mental health issues and keeping out and fighting negative thought patterns. Last week I gave depression a more thorough examination, providing tips for carers and patients on how we can help ourselves fight depression in terms of both lifestyle and mindset. This week I am keeping in tone with my previous post, of things that help the mind, body and soul during ABI recovery. This week’s post will be focused around the technique of self-affirmation and positive thinking, how I approach it and how it can be used to make real improvements and progress in tackling depression in day-to-day life.

What is it?

Well, it is exactly what it says. It is taking a small amount of time a few times a day to move away from the hustle and bustle of the world to a quiet place and tell yourself positive things, think positive thoughts and master both yourself and your thoughts. You would be surprised as the calming, comforting effect that this process has.

How To Master The Process

This discipline is a fairly simple one to master. It is a case of remembering or writing down things that you perceive as victories or accomplishments and recalling those memories and thoughts to install confidence and a feeling of positivity and control. I personally found that it is much easier to master in a quiet place, away from people or stimulation (TV, Radio etc. although I have found that listening to Mindfulness music has had a very positive effect on me. I know that these can be purchased either on CD or on iTunes). I sit down in a quiet room or in my garden (if the weather is good) in the morning, with my Mindfulness music playing or with no noise at all (advisable when you are first starting to practice) and think thoughts that give me sense of calmness, comfort, happiness and positivity or a sense of control (all thoughts we often feel are lost after a traumatic experience like an ABI or TBI).

It is a process I go through once in the morning and once in the evening. If you can or feel the need to find time, maybe during a lunch break if you’re working or after lunch if you are at home, during the day then I encourage you to do it. Installing that positive mindset has helped me get through many difficult days and often helps me sleep at night and get started in the morning and last throughout the day.

Positive & Self-Affirming Thoughts For ABI/TBI Patients

It can be difficult to think of positive things in the early stages of recovery so here are a few examples of my own thought processes that help me to get by and install those positive and more optimistic thought processes.

  • (Being Thankful) Considering my situation, if I look at the world around me, I see people who are far worse off after an experience similar to mine. Instead of looking at what I don’t have any more, look at what I have retained.
  • (Sense of Control) That I control my situation as much as it is possible for me to do so. I control my actions, what I say and the manner in which I behave. Therefore, to a certain degree, if I do these things responsibly the repercussions are in my control. However, they are only in my control to a certain extent. I only control a certain amount. If someone misinterprets what I say and takes offence to that, it is not possible for me to control how he or she reacts. It is possible though for me to learn. I now know that certain similar acts, statements, questions and behaviors can be misinterpreted. However, there is nothing I can do about the ones that have already happened. I cannot control everything, so don’t try to.
  • (Well Being & Positivity) Everything I do each day is done to the best of my ability and with the best intentions. I know that and I can feel good about that.
  • (Giving Yourself Credit) Given everything I am dealing with, I am doing incredibly well. I do my best everyday to live with something I shouldn’t have to. Furthermore I am setting goals and achieving them. I accomplish things everyday and I am damned good!
  • (The Past & Regrets) The past is the past. It’s as simple as that. There is no point going over things I should or shouldn’t have done or said. Unless the consequences of the action/inaction or statement can be repaired or you made better, don’t dwell on it. There is nothing you can do.

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If we can move past the negative thoughts and be able to maintain this positive frame of mind then it is a useful technique to pick you up each day and keep you in that positive frame of mind. Being in this positive mindset should, as well as energise you, enable you to engage better with people, go into social situations in a more open and positive state of mind and see more of the positives that occur throughout the day for what they are; positives and successes.

Body

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Relax Tea

NB: To anyone new to loose leaf tea you do need a proper teapot and follow the instructions regarding serving methods to get the best results. Also I must advise you to check the ingredients on the packets for information regarding allergies or for ingredients that could aggravate or exacerbate a specific condition.  

Relax tea is the perfect tea blend to drink if you fancy a hot cup of something before bed. It does have fairly strong tastes and flavours in there. As a novice I am not sure if this is correct but perhaps this is due to it being an herbal blend of tea. When I first drank it, I did notice two of the stronger flavours of aniseed and liquorice root that are present in the mix, as well as a slightly citrus taste coming from the orange rind that is also in their. But there is a subtle sweetness and floral aftertaste that I particularly enjoyed while and after I was drinking it.

I really did like the fact that Relax tea did exactly as it promised. It provided me with a clear mind, I felt myself becoming more and more relaxed as I continued to drink the pot. I did also, after a long day at work, feel the weariness of both body and mind begin to catch up with me. It does say on the back of the container that it should help with restlessness and sleepless nights. Well it certainly did that for me.

Of the teas I have sampled so far I would have to say that this one has been my favourite to drink. As someone who knows the difficulties of sleeplessness, anxiety and the inability to relax, having a beverage at hand that helps me to do handle and manage those things as well as having a delicious taste has been something of a revelation to me. So thanks Chelsea, I will definitely be ordering more of the Relax tea blend.

If you are struggling with issues regarding restlessness at night or are having trouble sleeping, order some of the Relax tea blend here: www.drjackson.co.uk/tea_relax.html 

For more information regarding teas of varying flavors and different properties and ingredients head over to Chelsea’s blog http://www.tastethetea.co.uk.    

Foods & Diet

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Food and diet can become a big concern when battling with depression. Two of the big signs that someone is depressed in fact is that they are either significantly over-eating or under-eating. Comfort eating is something that I struggled with particularly during my days of severe depression. It made me feel better when I ate things I liked, it gave me something to do and it was something I had to do anyway so why not go for it? When looking at our diet and the impact it can have on our health, our appearance (whether under-eating or over-eating), and anlysing the reasons we make the food choices we make, it can play a big part in how we feel in terms of our state of mind due to the vitamins and nutrients that are (or aren’t in some cases) present in what we’re eating.

If we over-eat and gain weight our confidence goes down, if we don’t eat enough we lack energy and motivation, that lack of energy can even cause irritability and irrational behaviour if it is something like a lack of blood sugars. Low blood sugars and energy levels can also have an impact on the likelihood of seizures if you are a person like me that suffers from epilepsy.

Experts have concluded that diet DOES play a significant role in depression and how it affects us. However there are foods that are readily available in every supermarket that, due to the vitamins, nutrients, fats and sugars can help our bodies and our brains become better energized by better fuel sources. By small changes in our diets we can improve the way our mind feels and keep that depression monkey off our backs. Foods such as fish containing fatty acids (mackerel, tuna), wholegrain foods (wholegrain breads and cereals) and low fat dairy products as well as green teas can have a hugely beneficial impact on our state of mind. For more specific examples and explanations follow the links below (the first link is a simple version, the second a more thorough examination on the effects of diet on depression):

  1. http://www.everydayhealth.com/depression-pictures/8-foods-that-fight-depression.aspx#02
  2. http://www.webmd.boots.com/depression/guide/diet-depression

Soul

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Being Charitable

When fighting a condition like depression, a condition that can suck any good feeling to do with self worth, happiness with who you are, things you do and things you achieve. Depression is a horrible condition to suffer from and a terrifying state of mind to be in. It’s like there is a vacant void in your soul that you can’t seem to fill up no matter what you try to do. I tried lots of things that didn’t seem to make a difference. I tried keeping a journal, I tried creativity and I tried to get involved in social activities. None of those things seemed to work particularly well for me. It was only really when I started this blog that I started to really gain some enjoyment from life again and I believe that was down to the fact that I knew I was doing something for other people. That is what has helped to fill the void in me.

Knowing I am giving something back gives me huge satisfaction. I realize I am only small time in the grand scheme of the Internet and the blogs that help so many people but I feel if I can get through to or help just one person each time a post goes up, I am filled with a great sense of achievement. It gives me a sense of confidence and a belief in my own abilities again. The idea of using this life changing experience I have had to help people just seems to make sense to me and really helps me to get through the day because I know what I am doing is not just for me, it is (hopefully) helping other people to.

If the idea of writing and raising awareness in that way doesn’t seem like your type of thing (I fully acknowledge that for many it wont be), then there are countless charities you can contribute to in other ways. You could donate to a particular charity in terms of financial contributions, you could volunteer at a local charity shop, you could do something as simple as bring a bag of unwanted items to the shop for them to sell or you could take a box of any unwanted food items, the ones that have been in the cupboard since it was first filled, down to the various food banks in the UK.

These actions of good will can be extremely fulfilling and the knowledge that you have done something good, that you are doing your best to help people can be an extremely uplifting way of drawing back the curtains and letting the light back in to your heart, soul and mind, to cast light on happiness that has for so long been gathering dust.

 

 

Mental Health: What We’re Dealing With

Mental Health: What We’re Dealing With

Over the last four weeks, barring any reposts I simply saw as supplying useful information, my posts (Only lessons, Simplifying ABI Recovery, The Importance Of Family & A Cruel World In The UK) have intended to be a sort of guide to steering clear of and warning you of negative influences, environments and the potential negative outcomes of certain ways of thinking. The aim, trying to create something of a guide to controlling aspects of life after an ABI and if you are a patient protecting yourself or protecting the patient if you are a carer from the steep slope that is mental health problems that often manifest themselves during the recovery process.

Things like depression or anxiety, both of which are devastating mental health issues that are taken far too lightly in today’s society, can have catastrophic consequences for anyone let alone for patients post-ABI. In my previous posts I have talked about environment within the home and the exterior influences that can contribute to mental health issues. Over the next few weeks I will be talking about other contributory factors that can supply mental health issues with the fuel they need to really gain momentum. Today’s post will be giving focus to the way an ABI feels for a person who has just suffered one (or how I felt when I first came to and was discharged from hospital) and how that can feel.

This, for me was one of the biggest factors that contributed to issues with depression and anxiety, though it is more of a long term one. After a severe brain injury everything is different. I have tried hard the last few weeks to think of an appropriate metaphor or simile to communicate what living with an ABI is like for people who don’t have one and this is the best I could come up with, so please hear me out.

How Best To Describe Having An ABI To Those Who Don’t: “The House Simile”

Before the injury, your brain is like your house. You know where everything is, every room has its uses and within those rooms there are things that you use, let’s say the kitchen for example. Within the kitchen there is a fridge, a cooker, a sink and all the usual equipment needed for everyday use. But also, there are cupboards that have designated uses: cupboards containing food, drink, pots and pans. Then there are the draws that contain knives, forks, spoons, and chopping boards, also essential equipment but kept separate. Then there is a cupboard that contains things that we don’t use very often; the pasta maker your aunt brought back from Italy as a gift, the super shredder cheese grater bought on a whim and so on, rarely used but still kept in storage for if it is ever needed.

What I am saying is that that the brain is almost compartmentalized: each section (or room for the sake of my simplistic simile) has different places where different things are kept so we can find, retrieve and use them whenever we need to.

Now, imagine that you wake up one morning and enter your kitchen. You go to make yourself a cup of tea with the plan of watching some TV and having a sit down, relaxing for a while. You go to the cupboard to get a cup but upon opening that cupboard instead of cups, you find a pile of papers that are normally kept in the desk draw upstairs in your office. You look through the papers, rummaging until finally at the back of the top shelf you find a chipped, cracked old mug. Once you’ve found the mug, you open the box of tea bags to find it is empty so you struggle through different storage compartments of the kitchen until you find them. Then there is the process of boiling the water, the process seems to take longer than usual, frustratingly longer in fact but the kettle eventually whistles and you make your tea. You normally take sugar but you have abandoned that for now because of the way that your house, with its usual familiarity, set out in a way you know has been so unceremoniously changed and rearranged. You go to the lounge and the sofa has been removed, your bed has been left in its place…

You see what I mean? Imagine if that scenario occurred in real life, most of the rooms and their contents had been swapped around and rearranged. How long would it take you to return all the things to exactly the same place they were before? Not a close position, the EXACT position, it is an impossibility. Imagine in five years time, even when you had returned everything as close to it’s original place as you could, that you were still finding/not finding items that were/weren’t there yesterday, that you had used yesterday but now you cannot find again.

That is the best way I can describe having an ABI to anyone who doesn’t have one. I worked a long time on that simile and I hope that it has made things easier to understand and enabled those without an ABI to see it from a patient’s perspective. As the title suggests, that is what we live with everyday. A lack of familiarity with how our brain works since the injury. If we were to take an example from my own life, the place where I keep certain memories has been damaged. When someone asks me to recall a certain situation, I flick through the memory bank like it’s an old photo album, only to find that some of the pictures that captured precious memories have been removed. “No I don’t remember that occasion” is the response I give. I get a quizzical look from that person that clearly implies a response of stupidity or indifference on my part when really it is just a lack of information on the part of the person asking the question, if you see what I mean?

That Is What We Live With

Each day we, people with ABI’s/TBI’s of all sorts, try to get up and handle the manifestations of our injuries and we do the best we can. It is often forgotten, ignored or simply unknown by some people that these are the type of issues we are dealing with; trying to retrieve information that camouflages itself inside the different compartments of the brain or that has left it completely. During recovery, especially during the early stages of the process, the first day you go downstairs to find that everything has been changed, moved, replaced or removed, the anger, the frustration, the lack of understanding and confusion as to why your brain isn’t working properly is ferocious. I would say though that it takes a while before you’re even aware of the changes. In the first six month of my time at home it was like I was just floating through life in my own little bubble. Totally unaware of myself, the way I was talking, acting or moving. I was totally unaware of other people, their needs or any social codes or conventions. Eventually though, as I said, probably about six months after I arrived home I slowly started to become aware of myself and of the presence of others.

What Is My Point?

The purpose of this post is to help people to understand what it is that they are dealing with and the thought processes and the way the brain changes after something as traumatic as a brain injury. I wanted to try and tell you as accurately as I can what life is like dealing with an injury so that if you are a carer, you can get some kind of insight into how we are feeling and if you are a patient, maybe put how you feel into words a little more accurately than you could have done before. I hope I have managed to do that. As a final point, I would also add that this idea of unfamiliarity, this feeling of isolation,the frustration the anger, the confusion, all of it are the thing that contribute to mental health issues gaining momentum. I believe that if people understand something they are much better prepared to tackle the issue and hopefully find a solution. So I hope that my insights can provide you with some clarity, some idea of what living with a brain injury is like.

Thanks for reading and I hope you keep coming back. Please, join my mailing list here on WordPress and take a look at my Twitter page @ABIblogger for updates on my blogging/writing work and take a look at my Instagram page abi_wordpress_massey on ABI awareness. Thanks again for reading.

 

 

 

 

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.