After I was discharged from the hospital, I didn't think I was heading for another massive challenge; I expected an easy and relaxing life of recovery where I would rest whenever I was tired. I was always exhausted, though; I was resting whenever I felt I needed to at random times, never feeling refreshed. This left me not sufficiently tired to sleep at night, and so it continued into the next day. I felt as though the more I rested, the more tired I became, and the less I rested, the more tired I would become. It was a pretty stressful and confusing time where I seemed to be making no progress. I have since realised that what you need is structure to your days.
Adding structure to your day will help you make progress if you suffer from fatigue like I do. Instead of feeling like I was going around in circles, I felt as though I had started to make progress. Introducing regularity to your day will allow your body clock to adjust to those times.
I never really noticed but all my life up until now I had structure; from school, college, uni and work, my life was scheduled with regular places to be and times I had to be there for. I had breaks at specific times; I never, for example, started at 9 am and just kept going until I was exhausted. You start at 9 am and work until your morning break, then work until lunch, work until afternoon break, and then until you finish.
So, for uninjured people, breaks are important - an injured brain has much less stamina, making breaks essential. Without them, you will wake one day feeling quite good, and you won't want to rest at your planned time, and you'll just keep going as long as you feel able. Doing this meant I had a terrible day the next day, and it probably took the rest of the week to get back on track. You forget what made you tired in the first place.
Taking away my usual weekly routine left me with a lot of time to fill. I was in a state of recovery, and everyone I knew worked during the day, so I found myself too tired to socialise with them on an evening when they were free. I spent a lot of my time tired and uncertain about my future, which led very quickly to depressing thoughts. After a head injury, you are really at risk of depression, so you definitely don't want to invite depression into your life. It wasn't good to be left unoccupied without a plan. So now I make sure I'm occupied! I found that as long as I was busy, I didn't experience dark thoughts (probably because I didn't have time!). It's something I keep up to this day; I do my best to never have a day without some plan.
Where do you start? Firstly, you need a time to get up, a time to rest in the middle of the day, and a time to go to bed. This all can sound quite patronizing - the whole process of brain injury rehabilitation can be patronising. People have spoken to me like I am stupid. I have been so frustrated and wanted to prove them wrong. You may well experience something similar yourself. I spent many evenings thinking about ways I could respond next time and how I could prove them wrong. That helps nobody, and I should have just concentrated on making self-improvements.
It's so tempting to think that you are much more advanced than having to have a plan every day, but trust me, it works! Once you've mastered it, you can then take things away, but my advice is just stick with it until you gain confidence:
A morning Routine
First, give yourself a time to get up. It doesn't matter how you feel, but do not snooze the alarm! The idea is to establish regular habits in your life. Once an action becomes a habit, then you don't have to think about it anymore. Thinking is very energy-consuming for someone with a brain injury; the more energy that you can save on unnecessary thinking, the more energy you have for more important things. A well-run business will waste the least amount of money, and a well-run life post-brain injury wastes the least amount of energy.
Make yourself a morning routine by taking time to write down everything you do in the morning. Go into as much detail as you want at first, and then this will become shorter as time goes on. You can make a list for everything! I once wrote a list of everything I do in the shower and stuck it somewhere it stays dry. This made sure I showered properly, ensuring I was clean and didn't go out in public without rinsing the shower gel from my body! Ideally, you will learn everything on the list, and it will become a habit; if you don't, then just keep the list! This sounds really patronising, and you probably think it's beneath you, but believe me, it's worth doing because once you get the basics right, then you'll move forward faster. Look at it like learning to ride a bike with stabilisers - make sure you can do that first before riding on your own. Everybody is obviously different, but this is what I do.
When the alarm sounds, the first thing I do is drink a pint of water. I then go into the shower - I've been into cold showers all summer, and I have been confidently telling people how they should do the same. The benefits are so good. Feeling that I may be the new iceman, I positively told others how being cold was a state of mind you needed to overcome. Anyway, now it is colder this morning, all that went out of the window, and it was back to hot showers (it's good in the summer, though!)!
After I get out of the shower, I get dried and have my breakfast. I always eat breakfast - I have tried intermittent fasting in the past, but I just like food too much; plus, I find that if I'm hungry, then I'll just think about that! I then brush my teeth and put on my clothes, which I laid out the night before - no stress looking for things in the morning! I always eat breakfast and brush my teeth before putting on my clothes because I cannot trust myself not to leave the house covered in food and/or toothpaste, but that's just me; maybe you can trust yourself!
A nighttime routine
Then you need a nighttime routine, the point of which is to calm you down and get you ready to sleep. Before starting your routine, you need to lay out the clothes you are going to wear in the morning at the foot of your bed or other suitable place. My bedtime is 10-11 pm (usually nearer 11, but I'm working on that!), so ideally, my nighttime routine starts at 9 pm by stopping contact with screens. I have a shower, brush my teeth, and then a cup of chamomile tea before going to bed in a dark room. I often use earplugs and have even used a blindfold in the past. Don't beat yourself up about not getting everything right, and just do your best. I struggled with this massively at first, and even now, I don't get it right 100%, but it's really worth it when I do!
Once you've got the start and end of your day sorted, you need to fill in the middle. Don't attempt to do something for 12 hours because you won't be able to - been there, done that, and I have discovered that I work best in short time frames. Split your day up, doing something in the morning, something in the afternoon, and something in the evening. You are now like an early smartphone in that you need to keep recharging in order to last all day. I eat around 12, and I start by having an hour in bed from 1-2. I don't always sleep at that hour, but I really benefit from giving my brain a rest in a dark room with no stimulation for an hour. You may need more rest in the day - in the early days post-injury, I used to rest every couple of hours, but then I suffered badly from fatigue, so do whatever suits you. I have friends who rest from 3-4, that works great for them. I'd suggest keeping the midday rest, whether it is from 1-2 or 3-4, then adding maybe a midmorning and another midafternoon as you need them, but the important thing is to keep to regular times.
Next, you need to make yourself a timetable… stay tuned for part two!
Brooke Trotter
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