I’ve now lived with a brain injury for over 14 years. In that time, what I once would have thought to be odd has become my normality; things like shutting one eye to read and having a bedtime in the middle of the day! After a brain injury, you will recover in a lot of ways, but some things will never recover, and a lot of brain injury ‘recovery’ is just learning to do things in a different way. For example, I have double vision so shut one eye to read and the fatigue that limits my daily energy means that I require a midday nap to remain alert until bedtime.
I haven’t been able to learn new things as well; new information just doesn’t stick to the pinboard that is my memory as well anymore, which has led me to make many mistakes over the years. Something I remember saying to myself though was that in years to come, I would write all these mistakes down for the benefit of someone like myself, so they didn’t have to go through all the mistakes that I made.
So, what have I learned in the last 14 years then? What advice would have I given to myself? One thing I have learned is that there is little point in me telling you what I have learned from my mistakes because you’re not going to take it onboard until they become your mistakes! However, these are 14 things I know to be true to make you aware, so you can then go and make these mistakes and then afterwards think, oh yeah, well I did read about that!
1.) Prepare everything
My brain works slow now, and I just can’t think on my feet anymore, meaning I really feel the effects of my brain injury. However, if I know what is coming then I can prepare and nobody knows any different. I’ve never been ashamed of what happened to me but neither has it been something I want to promote.
There are times my brain works well, almost feeling like I never had a brain injury. I wanted to know the conditions for this so I could recreate it whenever possible. I discovered that is when I am not in a rush, and well-rested, I am not stressed and am comfortable. These conditions can, but don’t always, happen by chance so to ensure you give yourself the biggest chance of it happening then it takes preparation.
On a night do your best to prepare for the next day; look at what you’re doing the next day and imagine what you will need. If there’s somewhere you need to go, then plan how you will get there, and always prepare the clothes that you will need for the next day. Anything you can do the night before saves on stress the following day!
An example of something I must make sure I’m always prepared for is the question I hate “what did you do at the weekend?” Even if I went swimming with a great white shark, it is likely that I’ll forget! One thing I’m good at is putting things in my calendar on my phone so a brief look at the previous week in a morning puts it fresh in my mind before going anywhere I may be asked this question, to avoid any embarrassment later.
2.) Don’t overwhelm yourself and do things in bite-sized chunks
Don’t plan to perform a task that will take 10 hours because it won’t happen, this goes for anything, e.g., don’t give yourself 5 hours to tidy your whole house because trust me, it isn’t going to happen! Instead, plan a smaller goal to tidy a room or even a drawer and then leave it for the day. Same with anything you do, your stamina will be reduced after a brain injury, so learn to drip-feed info into your brain. Don’t feel bad for failing a bigger task, instead feel good for completing something smaller; it’s important for our mental health to feel achievement no matter how small!
Too much stimulation will overwhelm your brain so do what you can to make things easier for yourself and limit the information you give it at any one time. Never aim to overwhelm your brain but stay within your limits, your brain will not perform well when overwhelmed/stressed, so aim to avoid such situations.
Social functions have always been a dilemma for me; it’s something I really wanted to do well but the noise and many people talking at once meant that I was really uncomfortable and left feeling disappointed. I learned to be strict with myself and only go for an hour, that way I could be a better version of myself for a shorter time rather than being there all night but exhausted and in survival mode, which is not someone that people want to talk to.
3.) Get some structure in your life!
After my brain injury, so much of my time was spent worried, stressed and confused which as you can imagine was chaotic, leading to me achieving very little and feeling little satisfaction as well as having a damaging effect on my mental health! It’s likely that you’re going to have more free time than before, not that it has ever felt like that for me as everything takes more effort than it did before, and I was constantly exhausted.
I was expending a lot of energy and getting very little in the way of accomplishment and preventing myself from getting into any form of routine; that’s when I discovered the need for structure! I’d always had it through school, uni, work. In fact, almost everything I did in life was structured to some extent. I took it for granted but it is the best and most productive way to use your time, I just never discovered the importance of it until it was taken away.
Establish routine and regularity in your life, get up at the same time and give yourself a bedtime, structure in rest times making sure you never do the same thing for too long between breaks; doing the same thing at the same time day after day will make your body adjust to it. Once you have been doing things in a structured way for a while, you will be able to predict what times of day you will be tired and you can start to move forward.
4.) Write things down and write yourself a list!
I’ve you’ve got a brain injury you almost definitely have a memory problem; if you don’t then you probably don’t have a brain injury! This means that your memory is not as reliable as it once was to recall important information when you want it, so use something that won’t forget like paper or your phone. These things save your brain the stress of trying to remember and if you feel embarrassed about having to use a memory aid remember this is an age where adults shamelessly take a photo of themselves, attach rabbit ears and nose and post it on the internet for the world to see, so you really shouldn’t!
As part of your night-time routine, write a diary noting down anything important that you did that day. Before you write in it, make it a habit to glance over the previous week to keep the last week's activities fresh in your mind. This will make sure that you are always prepared for that dreaded question mentioned in point one! I now use my phone for everything. You will get to a point where it just becomes second nature to store something in your calendar the moment you hear it.
On the subject of writing things down, write down lists! it could be using an app, the notes on your phone or old school pen and paper but write it somewhere and tackle that list one thing at a time. When you’ve done it then tick it off. There’s a certain satisfaction in ticking things off a list; if you don’t believe me, then try it! If you don’t then you will probably get distracted and either start a few things on the list or just forget about what you were doing altogether!
Start at number one and don’t start number two until you have finished and so on. I use this for packing a bag. I often go backwards and forward between Scarborough and Manchester, and I always used to get in such a stress doing this (frontal lobe injury, planning and organising) but I now just have a list and pack things one at a time in order until I reach the end. I now never forget anything.
5.) Don’t waste your time worrying about stuff and instead DO SOMETHING about it! (No matter how small it is)
I know, I know, this is much easier to say than to do but I’m only saying so because I have wasted so much time worrying about stuff, and I do regret it. Just like comparing yourself to something unattainable, there is absolutely no sense in worrying about something. You will never look back at a situation and think ‘I wish I had worried about it more!’ The situation will not get better on its own, you need to do something about it!
I’m horrible to myself and something I’m always saying to myself is that I ‘should’ be doing more. Putting your energy into this sort of thing is not doing anybody any favours.
Write it down and ask yourself if there’s anything you can do about it? If there is, then don’t aim to do it all, but instead, do a little bit. If you want to get fitter then don’t run a marathon, just run around the block. If your whole house is a mess, then tidy a room. Remember: if you do nothing about it then nothing about the situation changes. At the same time, look after your mental health, don’t take on something huge and fail, take on something manageable and succeed!
6.) Give yourself a boost
This is my own little invention and I swear by it! It involves getting ready to walk out of the door about 15 minutes before you need to and set a timer on your phone or other devices for 15 minutes. You then spend that time lying down with your eyes closed. It just allows me to refresh and reset before I need to go, just like a little boost!
If I have something I need to do in the morning (and only in the morning) I have a cup of coffee first. Caffeine takes 20 minutes to kick in, so if timed correctly then just as I finish my 15 minutes rest the caffeine is just starting to have an effect, boosting my boost if you like. My rule for caffeine is to have a maximum of 2 cups of coffee per day and no caffeine after midday. As someone that doesn’t sleep well anyway, I really hate not being able to sleep because I am too stimulated by caffeine, so if I stick to these rules, I remain unaffected by caffeine.
7.) Look after your body
My favourite! I had a particularly nasty accident and a big part of why I am so well today is that I was very fit at the time, so fitness, mainly running is something I’ve tried to keep up. Cardio fitness (running, biking, anything that makes the heartbeat faster) gives me more energy and mental clarity. Aerobic exercise makes you breathe more, therefore increasing the oxygen levels in your blood, which is pumped straight to your brain!
Making a start on exercise can be intimidating and something you put off, like so many things when trying to fit in in the world after a head injury you just have to be brave! Joining a club is a good way to get into anything you want to take up; just Google running clubs, cycling clubs, rowing clubs or whatever in your area, email the club and you will be surprised at their willingness to help. I have found running clubs to be very social and they often cater for those ranging from walkers to fast runners. You should look after your body not just your brain. Remember, your brain is part of your body, it supplies the brain with nutrients meaning you can’t have a healthy brain without a healthy body.
On nutrition, a good rule to stick to is ‘if it doesn’t occur in nature then don’t eat it’ and always choose white meat over red.
The reason doctors induce people into a coma after a serious injury is so that the body can concentrate 100% on healing the brain. In the same way, if you keep your body healthy then it can make your recovery more of a priority than if your immune system is having to combat the effect of high cholesterol, for example.
8.) Get a Headway Brain Injury Identity Card!
The ability of a brain injury survivor to explain their situation will be hindered, especially in stressful situations. They can be easily mistaken for being drunk and given less respect than they deserve and having their needs overlooked. The brain injury identity card identifies you as a brain injury survivor and clearly shows the challenges you face in a way that will save you stress and ensures you will receive an appropriate response and be signposted to the correct support.
I have one of these; I am yet to use it, but it’s so reassuring to have it in my wallet ready for when I get myself into a situation where it is needed. These are relatively new; I would have really valued this in the earlier years of me having a brain injury. It's free, so get one by following this link:
9.) People without a brain injury won’t understand unless they want to, so don’t waste your time and energy trying to convert them
Those without a brain injury have never lived with an injured brain and will try to give you ‘advice’ that will apply to anyone who has never had a brain injury. I’ve been told to “Get over it, the accident was (at the time) 4 years ago”, “You just need to forget about the fatigue”, “the fatigue is all in your mind!” among many, many, many others since 2007!
I have let such comments really really bother me in the past and lost sleep over them, trying to think up suitable answers, but for what? The important people in your life will make an effort to understand, unfortunately, a lot won’t and that’s just a fact.
10.) Comparison is the thief of joy and be kinder to yourself
Don’t compare yourself to anyone; the only thing this will ever do is make you feel worse so just don’t even start. When you think about it, actively putting your energy into something that will make you feel worse is stupid! What they are doing is none of your business and comparing will only make you miserable; what do you want to make yourself miserable for?
Something my neuropsychologist has been saying to me for ages is to stop being so hard on myself. I am pretty horrible to myself and always feel that I am seriously underachieving in life; I compare myself to my friend's none of whom have brain injuries. My argument has always been that I need to have an incentive to improve but what I actually do is put myself in a constant state of dissatisfaction and perpetual unhappiness. Instead, what you should concentrate on is trying to be a better person than you were yesterday.
11.) Never outstay your welcome
My brain injury happened when I was a student in Manchester; nightlife and socialising was my life so for a long time, so this was all I wanted to get back to. Any social function I went to was so uncomfortable; the noise, the lights, and the feeling of being overwhelmed used to leave me so exhausted that I couldn’t speak but I forced myself to stay just because that is what I wanted to do.
So, I wasn’t having a good time and I’m pretty sure whoever I was talking to wasn’t having the best time either meaning that nobody was getting anything from this experience! I then stopped doing this and if I was going somewhere that would be very fatiguing I would make arrangements to leave after an hour at most.
If I thought I was going to be there all night I was constantly anxious that I would burn myself out and not last. I was actually trying to conserve energy so I could last as long as possible, but I was putting minimal effort into any interactions I had which can’t have made me come across very well.
However, with the knowledge I was only there for an hour, I would make as much effort as I could to talk to as many people as I could; I’d be much friendlier, be better received and have a much better time. Although it didn’t last as long, it was just like old times (almost!). Think of it like a candle burning for a shorter time but burning much brighter! Be strict, don’t outstay your welcome and be better remembered for being the best version of yourself that you can be!
12.) My life has honestly improved since I started making an effort to be a positive person
This is not to in any way belittle depression, which is definitely not a situation you can’t simply snap out of by cheering up; depression is a seriously debilitating condition that should be carefully monitored by a professional. Please don’t think I don’t know because I have been there!
I’m talking about in general everyday life I have found great comfort in forcing a smile. There is scientific evidence smiling can lift your mood, lower stress and boost your immune system. You can Google it if you want to know the science, but honestly, it just makes you feel better, people receive you better; it's much nicer to deal with a smiling person than a frowning one.
Try it the next time you go into a shop, nothing scary simply go in with a big grin and be polite and wish them a nice day. I’ve worked in a shop before, it’s boring, and cheerful people used to cheer me right up!
Positive people lift you up, do what you can to be uplifting!
13.) Never give up
One of the early things that I read was that brain injury stops healing after 3 years. I remember hitting that 3-year mark and not being anywhere near healed, which made me want to give up; I felt more lethargic and so low on energy which confirmed my fears.
That was the time I started running again. I ran a 10k, then another, then another, before eventually running The Great North Run in 2012. This was the first big leap in my ‘recovery’ and that was 3 years post-injury. Another was moving to Manchester 6 years post-injury, getting my driving licence back 6 years and getting my job 12 years post-injury. I have continued to make progress ever since my injury in 2007. The only time that I have stopped or gone backwards is when I have given up trying. The lesson I learned from this is to never give up! Even if it’s not 100% appropriate, I really wanted to put a quote from Rocky Balboa in here:
“It's not about how hard you hit. It's about how hard you can get hit and keep moving forward. How much you can take and keep moving forward.”
Without a doubt you will look at your best and feel your most confidence when you are physically fit, you eat well, you slept well, your day is structured, you have a plan and you are smiling! So, I have had 14 years to perfect this, so you would think that I am always looking and feeling my best, so, am I? No, I am not and most likely neither will you! So why is that? Because nobody is perfect, life gets in the way, we are human, and we have a brain injury!
Don’t waste time worrying, regretting and comparing yourself to others. There is a sign in the Neuro Psychology Unit of Salford Royal Hospital that says, ‘Don’t look back you’re not going that way!’ which I think is perfect! You can’t change the past, but you can change the future! It’s never too late to start and just aim to be a better person tomorrow than you were yesterday!