How’s your sleep? If your answer is ‘terrible’, then I know what you mean! Ever since I’ve had a brain injury, I have never been able to sleep for as long or as well as I once did. I’m more tired than I ever was but I spend less time asleep than ever have before.
How your sleep is affected is one of those things that is dependent on the position and severity of your injury. It’s also one of those things I have found difficult to talk to anyone about. I never wanted sympathy just some answers as to why I felt the way I did, my life was suddenly a lot different and wanted some sort of explanation why. Everyone I started to ask seemed to reply with a tale about how bad their sleep was!
I would be offered explanations such as “well if you didn’t sleep during the day then you would be tired at night”. This rather obvious (and somewhat patronising) advice may well have applied to me pre-injury but I had changed now, my body wasn’t the same anymore I just couldn’t explain why. This excessive tiredness started when I was in hospital initially but as a hospitalised severe head injury patient getting in and out of bed all day hardly seemed abnormal. It didn’t go away though after I was discharged and went home. I could no longer go from morning until I went to bed at night; I would get back in bed several times during the daytime. Others would question this, and I didn’t really know why I seemed to be able to last a certain amount of time before I simply had to rest.
People (with absolutely no qualifications) would suggest it was psychological - with not understanding myself and having so little information I often wondered myself. It most definitely isn’t psychological though, as I have tried numerous times to ‘push through' and stay up all day but this always ends the same way - with me passing out for an hour at about 6 pm, denying me any chance of sleeping at night and messing up (at least) the next day.
I remember going through a phase of not being able to sleep at all and I remember going through a phase of being able to sleep for several hours but waking up and not feeling rested at all, no matter how many hours of sleep I got. I simply never felt refreshed at all. This was a problem for me for quite some time, I wanted to explain it but whenever I got the opportunity to speak to someone I felt put on the spot and never seemed to be able to communicate my point; I never seemed to get my point across and felt like I was just moaning and wasting time.
"Sit somewhere quiet with no distractions and write down all the points you would like to get across, write them out as simple clear bullet points on a piece of paper."
Something I do and a great tip I could give is any time you want to ask about something or put across an argument, sit somewhere quiet with no distractions and write down all the points you would like to get across, write them out as simple clear bullet points on a piece of paper. Have that piece of paper with you whenever you speak to someone or make a phone call - I find my brain works well when I am calm with no distractions but if you add any form of stress I panic and can’t think of anything to say or say the wrong thing. I can’t function properly in the heat of the moment, so I try to do any thinking I need to do in a comfortable environment and then transfer it to bullet points, so the thinking is done when I need it.
The groggy feeling I had constantly as a result of my sleep problems was eventually solved when I was referred to endocrinology (the study of hormones). It was explained to me that when we sleep we go through cycles of deep sleep and REM sleep. REM (Rapid Eye Movement - not the band!) is when the body is most active and the phase when we dream. Deep sleep is just like it sounds - when we are deep in sleep the muscles are totally relaxed. We go into REM sleep before we wake as the body prepares itself to wake up, however, I was waking from a deep sleep with no preparation which left me feeling terrible.
Unfortunately, that quick fix that we look for after a brain injury doesn’t exist whether it be believing charlatans out there wishing to take advantage of your situation or hoping to be prescribed a miracle drug. There was a drug I was trialled on whilst I was in a hospital called Modafinil. This was supposed to be a stimulant that I thought would solve things. I expected to get up and swallow a tablet which would boost me, this boost would enable me to bypass my daytime rests and wear off by the evening, allowing me to sleep at night, perfect! The big day arrived I woke up, took the pill all excited for my day of stimulation and I was asleep by 10 am and I remained there pretty much all day! I guess it doesn’t work for everyone, so never mind hey!
"A big help to me was a referral to the endocrinology department, it didn’t solve my sleep problems but has improved things a lot."
Of those that I know who have a neurological injury, most (me included) have all tried to look for a quick fix. All I can say is that you must trust medical professionals. Although they may not have a head injury, they have experienced many who have and you are new to this! I’ve had a TBI for 15 years and I’ve only recently accepted that this is not going to go away any time soon. However, just because you are not going to be ‘healed’ overnight there are things you can do to improve your sleep. A big help to me was a referral to the endocrinology department, it didn’t solve my sleep problems but has improved things a lot.
At first, I would start my day and just get in bed as and when I felt like it. This left me all over the place with my energy levels. A big part of coping with brain injury is getting yourself into new routines, this is where I learned to sleep hygienically. There is a practice called sleep hygiene which is nothing to do with changing your sheets (although you should still do that!); it’s more about establishing a regular sleep schedule.
I started to look at things logically and to look at my day and realised I used to rest at irregular times, simply when I needed to. This was one of the first times I started to see the need for structure and routine in my life. I find if I do things with regularity then my body clock would adjust. For example, get up at the same time each day and give yourself a bedtime at night. Do you have issues with fatigue like me? If so, give yourself a siesta time - I used to go for 45 minutes at about 12 noon and a further 15 minutes at about 5 pm. I have spoken to others who go for an hour at 3 pm - everyone gets into their own rhythm. The time spent resting is something that will change from person to person but make sure it is regular, start high with an hour and adjust from there for whatever you need. To give you some context, I am 15 years post-injury and fatigue is still an issue for me daily. On a day I am not looking at a computer or doing a lot of concentration then I can get away with a 20-minute rest in the middle of the day. If I’ve been at work, I’ll take an hour. Basically, you will get to know your own body and how much rest you require for what you’ve done.
Limit caffeine to two cups of coffee and make sure it is banned after 12 noon! I have lost count of the number of times I have been awake at 4 am and cursed myself for consuming something stimulating too late in the day, I have even fallen victim to stuff like Berocca and chocolate before! Drink nothing but water in the two hours before bedtime and even be very cautious around caffeine-free coffee/tea as it is never totally caffeine-free and has affected my sleep before. Come on, there are so many fruit teas and non-caffeinated drinks, just stay away from it and get into something else like Horlicks!
Make your bedroom as dark as possible, ban all screens! This means TV, phones and tablets as they are bright and stimulate the brain, making it harder to sleep. Charge your phone in another room if you can; phones are a nightmare for grabbing our attention!
Don’t do any exercise more exertive than a walk in the four hours before bed. This happened to me the other night when I tried to run in a faster group at my running club. I should have used a foam roller and done a lot of stretching before I went to bed, however, I didn’t and paid the price with two hours’ sleep.
To someone without a brain injury, these steps may seem excessive, and I have been ridiculed in the past but remember that you are not a person without a brain injury, sleep is very important to you. It is when we heal and it is vital that you do everything you can to get the most sleep you can. It is good to get somebody close to you on board with this, ideally, someone without a brain injury as it makes things easier by not having to explain things all the time.
Think of someone and get them on board! When you are not tired, write down some bullet points on a piece of paper for why sleep is important, and have it when you explain to somebody close to you just how important sleep is and what steps you need to take to maximise your chances of a good night’s rest.
These are tips that I have worked out through trial and a vast amount of error in the last 15 years. I really hope that they are of some help to you. I have never got back to the eight-hour nights of old, but I’m unfortunately also getting older (things don’t always brain injury-specific), which also has an effect, but these days a good night is about 6.5 hours! I’ve learned to be happy with that! Good luck!
How has your experience with sleep been? Share your stories and tips in the comments section below!