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.

 

 

ABI: Mind, Body & Soul (Day 2)

ABI: Mind, Body & Soul (Day 2)

Welcome to day 2 of our mind, body and soul soul mini-series to help raise awareness for Action for BrainInjury Week. I hope today is helpful for you and will enable you to manage your days better post-ABI.

Mind

Since my brain injury, I have found that many issues I have that directly impact upon my mood or my state of mind on a particular day are issues regarding control, or more specifically, my lack of control. ABI’s & TBI’s are most often a result of a random occurrence, whether that is through a health issue such as a stroke or meningitis or an accident like a car crash or a trip or fall. The point is that the injury itself could be determined as random or arbitrary but we have to live with the consequences of the injury for the rest of our lives.

Control Issues: Where Do These Issues Come From?

The consequences of our injuries very often have a negative impact on the way that we live our lives and can prevent us or hamper us as we attempt to achieve certain goals. What I have found from my own experiences is that I would have a tendency to blame myself, become frustrated with my situation and become angry when things went wrong. This was a particularly common occurrence when I was in social situations or in the workplace. I would make a mistake while tackling a particular task, one that I had done many times before, or I would have an encounter with a customer who was perhaps displeased with the way I had engaged with them in my role as an employee. I also found that when incidents such as these happened my confidence would be dented and that would cause more mistakes, a sort of snowballing effect. By the end of the day I would be so frustrated, stressed and angry that it would often cause irrational behaviour while at home.

When I look back at that period it was because I wasn’t fully accepting the limitations my injury had put on me. By the end of each working day I was like a can of coke that had been shook up and nobody was there to pop the tab. I realized later than I should’ve done that much of the stress I was putting myself under was because of the way I was looking at things and the frame of mind in which I was approaching things.

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We Can Only Control So Much

What I realized was that that word “Control” was the big issue. I wanted everything to be back under my control, the way it was before I had my ABI (or at least as close as I could get to having everything under my control). What it took me a long time to realize is that as soon as something like an ABI or TBI happens many things are out of your control, things about yourself that you can’t completely control. Take me for example I’m epileptic. I can manage this condition with medications and lifestyle choices but I can’t control it one hundred per-cent of the time. Due to the way unexpected incidents affect me since my ABI, socializing is very difficult for me. I can offend someone without knowing it or be offended by something I have misinterpreted, or come across as aggressive or anti-social. When these types of incidents happen I can become very anxious and flustered, so much so that I don’t know whether I’m coming or going. When people who know me and are aware of my situation surround me they make allowances for my injury and its manifestations; the way I can sometimes act, react, perform or behave. So in places of familiarity, where the situation is predictable and I know what to expect, I am in a controlled environment and I expect those people to make those allowances for me. When they do not I can react badly, in an angry way or show that my feelings are hurt. This is not something we can expect in everyday life or the working world from people who don’t know us. Expanding on that point we cannot always be in a position of security and wrapped in a comfort blanket if we want to build a life for ourselves.

Coming To Terms With It

The point being I suppose is that since my ABI, I have learned that ninety-nine per-cent of people are unaware of the issues I’m dealing with. It is not deliberate; it’s not rudeness or malice, just a lack of knowledge or awareness. How did I expect a stranger to know my situation, to know about my injury and the way that the injury manifests itself? To even believe that was possible was incredibly naïve on my part. From their point of view, I am just a normal, fully-abled person doing their job (or not, for the sake of this example). Of course they were going to be upset if I got their order wrong or overcharged them or took a long time in doing whatever it was I was supposed to be doing.

I know that this seems an incredibly simple piece of advice but letting go of any resentment, anger, anxiety or panic towards the fact that we no-longer have that feeling of complete control has gone a long way to helping me become a more sociable person. It has helped me to react to social situations in a much better, well thought out way and understand that if I’m doing the best I can with the abilities I have, then I am happy with that. It’s important not to let anything you cannot control drag you down.

Body


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Moroccan Mint 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.  

I was sat out on my patio under the evening sun, when the temperature is perfect and the sun begins to set after a long hot day. I had worked extremely hard that day and I was really hoping that the Moroccan mint tea would be a relaxing remedy. It was certainly what I had hoped for. A clear taste of mint and menthol without it being at all overpowering, a tiny sprinkling of sugar made it the perfect blend for me. I was in a small bubble that was paradise; listening to mindfulness music at the end of a beautiful day and finding that what I was drinking was helping to de-stress and relax my tired mind after a long day of working.

After I had finished drinking I felt as though my mouth and my nasal passages were clear I could breath deeply, in through the nose out through the mouth (a good technique to oxygenate the blood and help with relaxation). With this rhythmic breathing came a sweet taste at the back of my tongue with each breath. I may have found my chosen relaxation brew! Order a pack of the same Moroccan Mint blend at the following link: http://www.thegildedteapot.com/shop-product/moroccan-mint/

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

Giving Up Stimulants & Addictions

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When our mind is clear and fresh it is going to work better. Let me add at this point when I say stimulants and addictions, I am talking the smaller stuff. I’m certainly not qualified to talk about any bigger addictions people have. I’m going to assume most people don’t have that kind of issue anyway. I’m focusing particularly on caffeine and nicotine. The peak and crash addictions as I like to call them.

When we become too reliant on certain substances such as caffeine or nicotine it has the potential to have a real effect on what we do day-to-day. The reason I referred to them as peak and crash addictions are because you need them in your body. You have to maintain their presence throughout the day or else you crash. You feed the addiction, you reach the peak, you start to descend and then you crash. The crash can result in increased fatigue, irritability/anger or irrational behavior so that you can get a fix (I know that last one too well, as an ex-smoker there are plenty of example I could give).

Consuming these chemicals post ABI/TBI is definitely not the brightest thing to do. The effects cigarettes can have we all know but here are some anyway; cancer, aging of the skin, thickening the walls of blood vessels, clots, tumors and so on. Caffeine can be dangerous post ABI/TBI especially for those with epilepsy. Too much caffeine can bring on seizures depending on your type of epilepsy. But also that kind of peak and crash lifestyle is no good for your body clock or sleep pattern, both essential to ABI/TBI patients.

Finally, if not to do it for your health, then do it for your pocket. I have an App for my phone that monitors progress of your health and finances while giving up smoking. In the five month and eight days I have given up, the amount of money I have saved that would have otherwise been spent on funding my habit (ten to fifteen cigarettes a day) and killing myself is currently at £774.20. That’s a lot of money to spend on killing yourself.

If you put that next to also buying one Flat White from Costa Coffee each day (so five or six days a week) day at a price of £2.50, you’re spending £17.50 a week. At one point I was having a coffee each day and buying four packs of twenty each week. With current cigarette prices, the minimum you pay is £6.00 for twenty cigarettes, combined with my coffee habit:

Coffee – 7 x £2.50 = £17.50,

Cigarettes – 4 x £6.00 = £24.00,

Overall – £17.50 + £24.00 = £41.50

That’s a lot of money to spend on things we know are not going to do us any good especially after a brain injury.

Soul

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Media & Technology Embargo

As we live day-to-day in the modern world, it seems as though we cannot evade technology, that it has an inescapable presence. We use our smart phones with the multitude of Apps; we play video game consoles (admittedly a hobby of mine), which appear on our high definition TV’s. We have our iPods and digital camera’s and so on and son. If you are not “with it” in terms of technology if you are a member of an older generation say or even if you are a younger person and not particularly tech savvy, it can sometimes seem as though the world outside is always trying to get in. Whether it is as simple as listening to the radio or engaging with social media, it is difficult to escape from and for those that use it a lot, even rely on it, it can feel as though it is taking over your life.

When we feel this way, I believe that it’s important to try and shut out the way technology continues to invade our lives. It’s always good to try and return to simpler things such as reading a book, not a Kindle, an actual paper book. Turn off your mobile phone and find some other way to stimulate and challenge your brain: crosswords, Su-Do-Ku or word searches. Better yet, leave the phone at home and go for a walk; oxygenate the blood, refresh and energize the brain to keep you going for the rest of the day.

The important thing to remember is that the brain is a muscle and if we don’t use them, they will go to waste. The difficulty is finding the right way of stimulating and energizing them without over doing it. Again, like a muscle if we, overuse it it can tiring and even cause an injury. So make sure you give yourself some time to enjoy simple and enjoyable stimulation.

ABI: Mind, Body & Soul

ABI: Mind, Body & Soul

Here is our first “ABI: Mind, Body & Soul” blog post. I hope you enjoy and can gain something from it. For the picture below describes how I felt for a long time after my ABI.

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Mind – Mindfulness

https://www.psychologytoday.com/blog/the-courage-be-present/201001/how-practice-mindfulness-meditation

Mindfulness meditation is a technique that when used in the right way can be extremely useful in gaining a sense of piece and control and eases the feeling of unpredictability that goes on in the mind of an ABI patient. If you’re an ABI patient you’ll know, issues regarding mood levels, state of mind, and positive vs. negative outlook are difficult to manage. Trying to find that sense of contentedness and stability in your mind and thought processes can seem like a never-ending struggle. Mastering certain aspects of Mindfulness can help you manage these issues. I will not lie to you; it is not an easy thing to master, the particular aspect that I am talking about especially. I would also add that you DEFINITELY CANNOT master it overnight. It can be a period of weeks and even months but please, don’t let that deter you because it has done wonders for me.

What Is It?

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It is a case of disciplining yourself, not allowing your brain to think the thoughts that lead down a road to depression, anger, and anxiety etc. all of the things that we struggle with as ABI patients, heading them off before they gain momentum and simply being yourself in the moment with no thoughts, anxieties or worries.

The first step of that is learning the thought patterns of your brain. Think of your thoughts almost as a road map, you have to learn that road map inside out.

For example, say you have one of those moments where you suddenly realise that you feel down and depressed, in and Mindfulness it is a case of analyzing the thoughts you were having previously: what was I thinking about? Was it a memory? Was it a hypothetical scenario? Was it an imagined situation? Was it an encounter with a particular person? Was it thinking about things outside my control? Ask yourself the question “how did I get here?”

How To Master The Process

For thoughts to get to a certain place there is a trail, a road to that negative destination. There is almost an element of detective work about the process: looking back through the thoughts you had previously that led you to the place you are now. Analyze those thoughts and see whether they cause a negative, positive or passive response. This can be difficult to do and requires a lot of hard work, discipline and practice. I realise that memory is a problem for people like us with an ABI so when trying to recall your thoughts and analyze them, maybe try jotting them down the subjects and responses in a notebook (this will also come in handy later on).

As time goes on and your unpredictable moods continue (unfortunately having to live with them is all part of the mastering the discipline) and you continue the analytical approach of examining your thoughts and how you respond and writing them down, you will gradually start to build up a list of subjects that you do not react well to (and perhaps another which is made up of things which have a positive effect). So you have the beginning of the trail that leads to the negative places we so desperately avoid.

What Is The Outcome?

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The final piece of this process is the most important one and probably the hardest. Once you are aware of your thoughts, where they lead and the emotional responses they cause, it becomes a case of training your mind to block off banish the negative thoughts if they occur in your mind. Actively say to yourself “No, I’m going to think about something else,” if that is necessary. Another option is to find a distraction, for example try learning a poem or the lyrics to a song that you like and repeating them to yourself or turn to one of the thoughts you noted that had a positive effect, a comedian you like. You will notice that these positive thought process can gain momentum as well. The most important thing is learning where your thoughts lead and being aware of the effect your own mind can have on you. Learning this technique can help you to use your mind to be positive, be happy and build confidence.

It also allows you to spend time, as I have said, just being. Being able to clear your head of negative thoughts and live in the moment, in the here and now is an amazingly freeing thing. I don’t know anyone who has truly mastered it, I think the only people to have done that might be monks living in Tibet but if you can get to grips with it and set aside some time in the day to practice and discipline yourself to be able to do it even to an average standard, then your day to day life and state of mind will be hugely improved.

Body – Sunrise Wellbeing Tea

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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 any specific conditions.  

Before this collaboration with my friend Chelsea from @TastetheTeaBlog (Twitter) I was very dubious and wary of green, herbal and fruit teas. My experiences had consisted of tea bag Company’s mass-producing them with very little care or expertise. However after ordering the loose leaf teas Chelsea advised me to try and properly brewing them I found that my opinion has been changed.

I chose to drink Sunrise Wellbeing tea (as the name suggested I should) in the morning. As someone used to builders tea in the morning it was a little different I have to say. However, once I got used to the idea and the taste of green tea leaves, I started to pick up a few other tastes in there as well. I found the subtle taste of ginger and lemon to be extremely pleasant, extremely refreshing and thirst quenching. I have to say that I felt in a better mood after drinking it. It was a more uplifting way to start the day.

Many green and herbal teas also offer less caffeine. They are a more natural way to start the day using the goodness of nature and the benefits it provides. Order some Sunrise Wellbeing tea for yourself from the following link and start brewing! http://www.birdhouseteacompany.com/shop/green-tea/sunrise-wellbeing-tea/

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

Body – Probiotics

We often see products being advertised these days using the word “Probiotic” as an influential factor. It sounds like a fancy word and it’s surely a positive thing to have in drinks and yoghurts, or else why would they be telling us about it? In advertising they only tell us what we want to hear and what is good. A good example is soft drinks companies. They tell us what is good about the product; tasty, refreshing, best served chilled with ice on a hot da. What they exclude is the bad; there is so much sugar in them that they are a big contributor to the increase in diabetes and obesity over the last five years in the UK (http://www.nhs.uk/news/2013/02February/Pages/Latest-obesity-stats-for-England-are-alarming-reading.aspx). The thing is though that many people do not know what this fancy word that is obviously supposed to be good actually means.

Well, probiotics are essentially good bacteria or as stated on http://www.medicinenet.com/probiotics/article.htm “live microorganisms that, when administered in adequate amounts, confer a health benefit on the host.” Most of these probiotics, good bacteria, are available in specialist dairy products. The main areas these products will produce results is in strengthening the immune system (Activia) and the digestive system (Yakult) renowned for aiding those who suffer from the many forms of irritable bowel syndrome, as well as being available in products such as Activia probiotic yoghurts. If we can keep the key systems that keep us going well maintained and provide them with things that will be beneficial to their functioning, then I believe we should do it. I can assure that when our bodies feel good inside the feeling spreads to the mind.

Soul – Talking to Positive People

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When we are feeling down engaging with the right kind of people can have a really positive impact on our frame of mind and our thought processes. We all have at least one person in our lives, whether a friend, family member or co-worker, who has that ability just to make you feel better. They encourage you, they make you laugh, and they stimulate your mind. Whether you go to see them in person or talk to them over the phone is up to you. I do believe being able to see and touch a person, read their body language and expressions are important but that’s just me.Whatever it is they are providing they have that ability to make us feel good and that’s important.

Having these people in your life is so valuable. Take my Granddad for instance, where my parents see it as their job to keep me grounded and to not get carried away he thoroughly encourages me to get carried away, to have dreams and ambitions that may be a little out of reach. If you have the foresight or ambition to dream about achieving certain goals and vitally, someone who can validate the dream and not treat it with scorn or ridicule but encourage you and believe in you, then you really have someone in your life worth holding on to. After all an ABI/TBI can take away so much from us, why can’t we dream a little? Aim for the stars, you might only reach the moon but its still a bleeding long way!

Taste The Tea & ABI blogger present – ABI: Mind, Body & Soul

Taste The Tea & ABI blogger present – ABI: Mind, Body & Soul

Today commences Action for Brain Injury Week. It is an important week where people such as me, the victims of ABI and TBI, get to raise as much awareness as possible about the subject. The subject of brain injury is often overlooked in many ways. The disabilities that come as a consequence are life changing and the effect it can have on your mind and mental health issues that can manifest themselves are just as potentially debilitating. Very it can feel as though we are on our own. Outpatient services are not in place to tackle brain injuries appropriately. It can feel as though the recovery methods we are told to try by doctors are ineffective or not suited to your personality. When we feel as though we are getting nowhere, however much support we receive at home (which is so important by the way), we can feel alone and that nobody understands or cares how much of an impact TBI’S and ABI’s make is and how life changing they are to patients.

Lifting Our Spirits

Having said that, situations and opportunities present themselves sometimes that help to lift our spirits. After an ABI or TBI there is a feeling of solitude and loneliness that can become overwhelming. So when someone reached out to me, a fellow writer who and recognizes the importance of highlighting the disability that changed my life forever, I couldn’t help feel uplifted and a little revitalized.

ABI: Mind, Body & Soul

Between us, Chelsea writer of @TastetheTeaBlog (http://www.tastethetea.co.uk) and I have produced a mini-series of blogs, both of us using our own particular skill sets and expertise, to think of alternative treatments that are more based around lifestyle and health choices than they are based around medicine.

There will be a new post posted each day on my WordPress blog https://lifeafterabraininjurydotorg.wordpress.com. Within each post will be advice, tips and general information about keeping yourself healthy in mind body and soul. I believe that there is a lot more to ABI recovery than just prescribed rehabilitation and recovery programs and methods.

Mind

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The mind section will be an important part of the series. Each new post will contain a new discipline; a new method of thinking that can benefit you when it comes to your state of mind. These disciplines can help with anxiety, depression and with the many other similar issues that often manifest themselves in the mind post-brain injury. My hope is that people reading the posts will be able to master the techniques and use them to good effect leading to better day-to-day experiences as we live our every daily lives.

Body

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This section will focus on the things we put into our body and what we do in terms of exercise can affect us, the way we feel physically, the way our mind feels and the fact that when your body feels good it goes a long way to making your mind feel good. Each day will provide some useful information and tips on health such as diet and exercise, as well as providing a different herbal tea (green and herbal teas provide anti-oxidants and other vitamins and nutrients which cleanse the body and help to protect it from cellular damage).

Soul

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The final component of what makes up these blog posts is an intangible one; fulfilling the soul. I know that for a long time after my brain injury I felt as though nothing would ever fill me up again. That nothing would give me that warm feeling in my heart and that feeling of contentedness. I have found that trying to help others is providing me with fulfillment. The final section of each blog is about trying to restore balance to that part of you, the part deep inside that no one can touch.

How Will It Go Down With You?

I hope that you will join me for this weeklong journey. I’m not sure how people who read my other posts will receive it but I think it will be a different type of blog with different content. We hope that it can help people think outside the box a little more and find alternative ways to find solutions to their problems

Post-ABI: Depression

Post-ABI: Depression

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

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

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

Mental Health Issues I Struggled With

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

Depression

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

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

Lifestyle Tips

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

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

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

Advice For Carers

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