Ever since I have lived with a brain injury, I have found life in general difficult. The best thing I have found to help is to be organised and live a healthy life (as dull as that may sound, I’m afraid its true!). There are times when you feel terrible and that there really is something wrong with you but there are others when you feel fine. You’re at your best when you are well rested and at your worst when you feel fatigued and overwhelmed, so you want to minimise the fatigue and maximise the times you feel fresh (I assume!). I’m not suggesting that there is a way that you will never feel the terrible effects of fatigue again, but this is a tried and tested way to overwhelmingly reduce it! Interested?
Ok, so now you should have scheduled times to get up, to go to bed, go for a midday siesta and additional rest times if you need them. Adjusting to this will minimise the highs and lows in your energy levels. The aim is to keep your energy levels at an average throughout the day.
Your body can get used to this relatively easily as your next break will never be too far away. Getting used to a new routine may be hard at first but if you persevere then your body will adjust to it, enabling you to get through a day without any sort of a crash in your energy levels.
So, you have a time to get up in a morning, you just need a reason to get up so now is the time to fill in your week with tasks to give yourself purpose. This is an area where I have really suffered with my mental health by constantly comparing myself to friends and peers and having self-critical thoughts of what I ‘should’ be doing now. I would obsessively look on social media to see what others were doing in their lives. The important thing to remember is that these people with this ideal life don’t have a brain injury - you do, and you are now taking positive steps to improve your life. As the saying goes, ‘Comparison is the thief of joy!’, the only person you are allowed to compare yourself to is you yesterday. Take it from somebody who has given themselves hell for years that you are taking positive steps to improve your life and you can be proud of yourself for that! You are not there yet and if you are anything like me you will probably never get there.
Enough time wasting. So… how do you start? My Occupational Therapist, Julie, showed me to start with a weekly planner. The goal is to be able to look at your week as a whole and make sure that every hour in your week has a purpose. I’m not saying you won’t have any spare time, but I am saying that the spare time that you do have will be planned.
Start by looking at your blank week and add any permanent regular fixtures e.g. work/volunteering or are you a member of any clubs, have commitments or anything that you do regularly? Next, add any one off events or social commitments you may have arranged for that week. Once those permanent non changeable things are written down then you can plan the rest of your week
As a general rule, I try to do some sort of physical exercise and something cognitive every day but not twice in a day. I don’t mean a 5-mile run, if you can great, but I just mean a 20-minute walk as a minimum. Your brain will be fresher in the morning so try doing anything cognitive in a morning and anything physical in an afternoon, have the exercise and fresh air as a reward (fresh air IS a reward don’t be lazy!).
It is extremely likely that fatigue is now going to be a major part of everyday life, you can either let the fatigue overwhelm you or you can start to learn about fatigue management. The idea is to never let yourself get too exhausted. If I let the battery on my smartphone run all the way down to zero then I can’t just plug it in and switch it on again. That’s because it takes about ten minutes until it has a bit of charge until it will start up again. Fatigue for me (and most other people I have spoken to) is similar in that if I push myself too much in a day then it can actually take me a couple of days before I’m feeling kind of normal again. If I'm feeling really exhausted then the only thing that will bring me out of it is to rest in a quiet dark room, little tip: if you have an Alexa then say, “Alexa play white noise” - white noise makes it easier for me to relax, it quietens that chatter in my head.
When planning your week, colour coding is an excellent tool for fatigue management, the idea is to colour code your activities for how fatiguing they are - red for highly fatiguing and green for relaxing. Things like medical appointments, work commitments, etc. will be red - these are demanding on your brain and will use vast amounts of your energy, whereas a light walk will be green as that could actually give you back energy.
When looking at your week, colour coding makes it is easy to manage your fatigue because it’s obvious to see that if you have three red tasks in one day then you are going to be exhausted and this should be avoided at all costs! Sometimes life gets in the way and these things cannot be avoided, so you can expect to have a bad day, but the next day try and plan relaxing activities. If you’re anything like me though you will probably forget so whenever I have a really busy day, I have to set a reminder for the next morning to expect to be exhausted in my phone because I will forget. I will feel terrible and have a morning of depression. However, if I know to expect these feelings, then it is less likely to happen or at least I understand why I am feeling that way.
Above is an example of a typical week from my early recovery. Brain injury introduces you to new things such as neuro psychology appointments and speech therapy appointments. This is a bit of a balancing act because you need to look after your brain and your body, make sure both are stimulated without exhausting either. You don’t want to rest all the time because you lose your fitness and become lethargic, you don’t want to take on too much because you will become exhausted! It’s not exhaustion as you knew it before, you enter into a new realm of tiredness that should be avoided at all costs!
Feeling hungry? Next you need to add food to your planner…