Ahhhh…. sleep.
It’s a beautiful thing, but too often elusive when you have a brain injury. It’s not surprising, since nearly 60% of us have long-term sleep problems.[1] Some people manage to be “up and about,” wishing they were in bed conked out – which they often do as soon as they can. And others just can’t stay awake long enough to even get out of bed.
Have you ever done a survey about your mood? There’s always a question about sleep or fatigue as both can be signs of anxiety or depression. On the other hand, lack of sleep can cause anxiety or depression. So which comes first, the chicken or the egg? With brain injury, you need a good diagnostician to figure it out.
So, what happens if you’re not sleeping with a brain injury?
If you don’t get enough sleep, the consequences creep into every nook and cranny of your life. You may react on a hair trigger, get overwhelmed, irritable, or deeply frustrated.
Exhaustion is debilitating, and exacerbates all of those things you already wish weren’t so difficult: concentration, organization, processing information, anxiety, memory, pain, balance, headaches, vision problems, and plenty more.
For instance, when I’m exhausted I can’t leave the house without my cane. Otherwise I’ll topple over at the first bump in the road.
I cry, weep when exhausted – in the shower, outside, after dinner, on the phone. Always.
I send emails well past my bedtime. If I read them the next day, I see the misspelled words and often-inappropriate tone. But they’re already in someone’s inbox, and it’s too late to take them back.
Despite sleeping with a brain injury for years, I don’t have insomnia; I sleep through the night, and get up each morning with an alarm. So I never thought I might have a sleep problem. But guess what? I do. I may get up when the alarm goes off, but I’m not ready to start the day. If I’m going out, I can’t decide what clothes to wear. I race through my routine and am almost late even before I’m even out the door. When at home I jump right into working (and don’t stop), talking (often to myself), or thinking too much too long (without a break). I’m not doing myself any favors. I can’t focus, words escape me, and my brain does too. So what’s the problem? I think I just don’t get enough sleep.
It’s stupid. I know why I don’t sleep enough, and how to fix it (it’s not that hard). But I just don’t. I guess it’s not “stupid,” it’s brain injury. But I still have to deal with it.
My doctor’s answer? “Sleep Hygiene”
(What’s up with that? Clean sheets? Purel? Brush your teeth before bed?). It’s a silly name for a serious process, basically a way to clean up your act and turn bedtime into sleep time.
My marching orders: I can’t do anything in the morning until my wake-up routine is done: #1: out of bed when the alarm rings; #2: morning ablutions (shower, teeth, etc.); #3: make bed, get dressed; #4: eat breakfast, take meds.
Once I figured it out I made a routine for nighttime using phone alerts. Smart idea, right? But guess what. Alert #1 goes off (make dinner), and what happens? I hit “snooze” a few times. When the alert starts making me crazy I hit “off” and forget about it. Then alert #2: call mom (same response); alert #3: take meds (ditto); and alert #4: go to bed (the same).
When I reach the point of no return, I turn the computer off and finally climb under the covers. But then I make one more mistake – a doozy. My phone is next to my bed. Now that is stupid. How can I resist a game? Or checking email, texts, Facebook, you name it. When the phone starts dropping out of my hand, I let it go and fall asleep. But the next morning my alarm rings and I start the day again. Exhausted.
But enough about me.
Sleep hygiene is pretty straightforward. You just need to make –and follow – rules for each morning noon and night. Come up with a schedule that works for you – one you can live with and will stick to.
Sleep Hygiene Basics: the morning
- Wake up and get out of bed at the same time every day
- Morning ablutions (bathroom, shower, teeth, hair, etc.)
- Eat breakfast, take meds if needed
- Review appointments – doctors, work, socializing, exercise, etc.
- Pace yourself; don’t skip meals, get fresh air, take breaks
- If you’re tired, take a short nap (15 or 20 minutes) – enough to power up, not lay awake at night.
Sleep Hygiene Basics: the evening
- Go to bed at the same time every night
- Closing time: three hours before bedtime: finish work, active exercise and avoid caffeine, alcohol, and heavy food
- Respect your inner clock: turn computer off and dim lights.
- Wind down – relaxing music, warm bath, meditation, herbal tea, etc.
- Cellphones? Out of sight, out of mind.
- If you can’t fall asleep or wake in the night, get out of bed, keep lights dim, and do anything relaxing – better yet boring – until you’re sleepy again.
Last but not least, beds are for sex or sleep only. That means no TV. None. At all.
With that, I can say “Goodnight, my friends.”
Sleeping with a brain injury? To learn more about the causes, effects, and how to help yourself, go to the Sleep & TBI Resources, or copy and paste tbitolife.wordpress.com/brain-injury-and-sleep into your browser bar. Resources include web sites, tip sheets, research, and other sleep-related information.
Disclaimer: This is not meant to replace advice from a medical professional. Talk to your health care provider if you have concerns, persistent sleep disturbances, or excessive fatigue.
[1] Sleep and Traumatic Brain Injury, 2010. Model Systems Knowledge Translation Center
Photo credit: 2016 (c) Laurie Rippon
A Brain Injury Life 
Oh so familiar. One factor that has minimized itself is the tension in my body which for a long time left me in a state of ‘flight or fight’ through the night. I’d wake up in the morning feeling like I had run a marathon. My brain coach explained that technically that is what my body was doing in the night. Reading about your experience is both helpful and reassuring.
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So interesting that you were aware of what your body/mind was doing while you slept. Did you find a way to minimize the tension, or did it just gradually resolve itself?
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It was my brain coach (Occupational Therapist) that explained it to me. I was recommended to go through a Progressive Muscle Relaxation exercise every evening before going to bed. Couldn’t notice a difference at the time. Needed to refine my PMR exercise. The tension in my body is slowly resolving itself.
The conundrum I was getting into was that the neural fatigue and sensory overload was causing the tension in my body and interfering with my sleep. While at the same time realizing that sleep was really the only effective way to reduce the sensory loading or the neural fatigue. Stumbled across the benefits of cycling to help reduced the neural fatigue because it’s repetitive and seems to reduce some of the tension as well.
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Sleep is something that TBI ers, particularly, need to prioritize. Everything is more challenging with a TBI and with poor sleep, that makes it 200% more difficult to function well!! Laurie, you express the importance of sleep hygiene very well. In fact, it’s almost 11PM now and I
am still telling myself ‘go to sleep, if you plan on going to Achilles tomorrow’. Whatever the case may be, I will go to sleep because I NEED to: I’m tired, plain and simple!!
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Silvina, you make me laugh! Yes, I’m going to Achilles tomorrow morning, but am still not in bed! I need to sleep NOW. I’m exhausted so I’ll get off the computer (really… I promise) and see you tomorrow! just hope I’m not late before I’m even out the door!
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I know that sleep hygiene is a key element of either managing or experiencing a level of healing. What complicates my ability to get to bed and ergo to sleep is that late evening is the time of the day that my TBI symptoms are at a minimum…. so why would I walk away from that. (headache at it’s lowest level, energy at it’s highest level, making it a time to enjoy reading and writing.)
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One of the problems we face is that we are “transitionally challenged.” Once we are involved in doing a task or leisure activity, it is difficult to change course and direct one’s attention to the next task/activity. I find that alarms help, but of course, they don’t work with a snooze feature.
Even if I do not “feel like” moving on when the alarm rings, I have found that if I just get up and take a break (take a short walk, go to the bathroom, and get a drink/snack) then my mind sort of “resets” and I can move on to the next task/activity.
This means building a buffer between tasks/activities in my schedule so that I don’t go directly from task to task but give my mind a chance to wind down and reset so that I can be mentally ready for the next task (like going to bed).
It’s much easier to learn to “obey” the alarm if its purpose is to take a break than to move directly to a new task/activity.
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Thanks for your insight, Maria. Your reasoning makes total sense. I do set alarms during the day to take breaks, with the same (counter-productive) response.
The alarms I mention in the blog “tell” me that I need to do something, but their purpose is really to get me to stop what I’m doing (usually at the computer), look at the clock, and step away. The “to do” commands are reminders of what’s next in my routine to prepare for sleep.
Many people I know are quite diligent, but it is a major stumbling block for me.
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I feel like I just read an article I wrote about myself. I don’t have a brain coach, I have a speech teach (Speech Language Pathology Therapist) for Cognitive Rehab and my own personal meet and greet with my new self. I find it fascinating that we (TBI’ers) know so much about ourselves and what trips us up yet in the moment our brains lie to us and we believe them. I’m sure not everyone falls into this collective “we” but I am finding that I can relate to so many people that are walking this TBI journey.
I can teach classes on what my vulnerability factors are and how they will play out if I don’t attend to them yet here I am writing a post after midnight knowing I needed to be in bed hours ago. In the morning I know I need to follow my agreed upon routine in order to make my first appointment on time. My prediction is I will wake around 6:00 as usual. Make my coffee and take my meds and not take my shower. I will silence the alarms reminding me I need to start getting ready because post TBI me takes an hour and a half to take a shower and get out of the door. My brain will tell me to ignore the alarms because I only need thirty minutes to shower and get in my truck to be on my way. My brain thinks it’s not injured. I don’t have the heart to tell it the bad news so I just go with what it tells me and I’m late everywhere I go.
The longer the cycle continues the more vulnerability factors I have and the worse my symptoms of cognitive fatigue, emotional disregulation, and executive function problems become.
It’s like I’m keeping a secret from myself on how to solve my problems. I have the solution but I am only aware of it when I’m not in the situation that I need it.
I truly appreciate your article and the opportunity to be reminded that we can all learn from each other even though we may not be walking in the another’s shoes we are on the same journey towards healing.
Peace,
Melissa
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Reading your comment, Melissa, I feel that in many ways we are indeed walking in each other’s shoes. Of course every brain injury is different, each of us has our own stumbling blocks and strengths, but we also have much in common. I believe in community – sharing what we’ve learned, our struggles, and our journey. Thank you for your contribution.
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Hi Laurie,
I’m afraid your doctors and coaches will not like me very much… But since I recognise your story, I decided to react which I don’t normally do. But it hurts to read that you get out of bed, knowing you’ll get a migraine…
I have a brain injury myself after having had surgery to remove a brain tumor that was pushing into the brain stem.
After reading your blog post, I’m grateful for my doctors.
I’ve tried these sleep hygiene rules. And I still use them, but… without a sleeping tablet these rules are hell to me. I really tried it. Several times. To the point where I was at the point of breaking. Several times too…
After seven years of this ‘journey’ one of my GP’s agreed with me that letting this sleephygiene theory rule my life wasn’t the best option. So we decided to change course. I now have a sleeping tablet. A mild one. With the limitation that I won’t get a second one. Ever. They thought it wasn’t gonna last working (that is what the theory says), but it does.
I do my best too. I really want this to work, so now I do follow the rule: you are in bed by 11 (after a ‘going to sleep routine’), BUT… I do not set an alarm to get out of bed. I get up when I feel I’m ready to. I find my best days are the days where I got 12 hours of sleep.
Mind you: I read your article last night, so I don’t always succeed… 😉
My professor gave me an advice I will never forget: try to find a balance between enough rest and challenges in small doses. It is very hard to figure out what that is. My brain needs a lot of sleep. I believe that sleep is one of the only things that might help my brain recover. And if it doesn’t get enough of it, I just don’t function AT ALL. The only thing I can do is crawl up in the couch crying… Those days are ‘hell’. So, I don’t do it anymore.
So, yes to the sleephygiene rules, but to the ‘deprivation’ part of it I now say ‘NO, thank you’. Would anyone else without a TBI get out of bed knowing there’s a migraine waiting around the corner? I seriously doubt it. Really.
Another fact tells that me that the more emotional my day is, the worse the night will be. So… since sleep deprivation makes me emotional, not able to see things clearly, I find setting an alarm to get up is just the right path to end up in one of those vicious circles I so desperately want to avoid.
I do believe sleep is the KEY to my brain’s recovery. And I need to get it whenever I can. But… yes, we do need to take care that we don’t end up with our nights switched to days and vice versa which is why I cooperate with my doctors too. I do stick to my bedtime routine. Under all circumstances.
Here is something else that makes me ‘doubt’ the theory for use on TBI-patients’ sleeping problem: When I can’t sleep even after all the efforts I made, I switch my computer back on, do a game of scrabble. The last three weeks I even do another 20 minutes of the language learning programme I’m trying to do and you know what? Against all the rules this works. After having done that, I do get that sleep… (allthough the theory says that is the worst thing you can do…)
My goal is to help to train my brain to get me to sleep and keep me asleep. I’m hoping the tablet and sticking to the routine might help doing that over time. And if not, then at least I got more quality in my life than before the tablet.
Good luck in finding out what works for you!
Dominique
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Thanks for responding. I’m caught between what I’ve learned and what I do. The blog is not just an outlet for my feelings. I want to reach a broad group of readers to address their concerns of and offer reassurance. I draw on my own experience an that of others: doctors, researchers, and the many people with brain injury I count as friends and peers. I don’t follow all the rules, but having a schedule helps me organize, prioritize, and improves my productivity. I take 15-20 min naps during the day – as needed + when I remember – they are incredibly restorative. Morning alarms are for days I have an appointment (most days of the week). Ideally, the alarms remind me to step away when I’m spinning off onto a tangent, get back on topic, take a break, eat a meal, etc. Otherwise I fall into a dark hole – getting more lost and out of touch. I know sleep hygiene is not the be-all and end-all, but don’t have the credentials to recommend a plan of action for others. (Hence, my resources page – reputable sources for medical and research information.)
I obviously need outside reminders until I can internalize it and just rely on myself. That’s a hard one.
I think we both are have similar goals – manage our sleep (self-modulation and effectiveness), use the strategies we need, etc. For me, sleep hygiene has been a useful tool for self-care (I still thinks it’s a weird name). But as they say… “if you’ve seen one brain injury, you’ve seen one brain injury.” Both different and in many ways the same.
Thanks for taking the time to reply
Laurie
ps: do you live in Belgium? I lived in Brussels nearly 50 years ago, and my son lives there now.
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Hello. Great to find your blog. I suffered a TBI in 2011. It was a traumatic time in my life. After lots of support I am getting back on track. I have recently started to create a support service to help others like you and I. Look forward to reading more blogs 🙂
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Thanks for your support. TBI is hard – uphill and down and back up again – each time stronger. For me, offering support is a great motivator, and I hope the blog is a support. Each piece takes a while to write, but there’s always another.
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