Statistically, the likelihood of me being up to ring in the New Year on January 1st is slim. I can count on one hand the amount of nights I’ve been awake at midnight this year. I’d say for 360 out of 365 days in 2018, I was in bed and asleep before 12 a.m. hit.
Fatigue from a brain injury and the medication that can go with it aren’t exactly what I’m used to mixing on December 31st, which is vanilla vodka and coca cola. Life changes, concussions happen and I’m no longer the life of the party that plays flip cup.
Last year, I spent my first New Year’s Eve at home and alone, a first for me. I’d always gone to parties, bars or a friend’s house to ring in the New Year – but last year was different – I’d had so many concussions with new symptoms that just the thought of staying up until midnight, let alone going out and being social, was exhausting. So I stayed home.
At first, I had a lot of negative thoughts towards myself. What 25-year-old stays home on New Years Eve? I logged onto Facebook and Instagram and saw everyone in their nice outfits at parties, and I felt jealous and embarrassed. Jealous, that I couldn’t participate in this holiday and embarrassed that I had no New Years Eve plans. I was prepared for a night of feeling down and mentally pictured answering the dreadful ‘What did you do for New Years?’ questions the next day, but that’s not what happened.
Instead of lining up at the LCBO and going through my closet to find an outfit, I started cleaning my apartment. I had gotten some home décor items for Christmas and wanted to set them up. After that, I ordered a pizza and watched a movie. Then, I lit some candles and put on my diffuser. By just being at home, I was able to think about 2017 and reflect on everything that had happened to me. I looked around at my freshly cleaned and decorated apartment and I felt content; I started to reflect on 2017 and all it had brought me and taken away as the result of concussions.
Around January 1st, the phrase ‘new year, new me’ is very popular. It was a new year but I was still going to be the same me, with the same mystery brain injury symptoms.
By reflecting on 2017, I was hopeful that 2018 would be different, I would find out what was happening to my body and return to my former life. It led me to write a post for The Mighty about the challenges I had experienced and despite such drastic changes, I still loved my brain. I compiled a list of all of the things I loved about my brain injury. This was a hopeful turn in what would have been a very dark night.
New Years is drawing close again and it’s amazing what has changed this year. My brain continues to heal and I began medication to control my new and unwelcome physical symptoms. I also shifted my perspective in how I see my brain injury, I never returned to my former life but created a new one that I find joy in. This allowed me to go to New York and Myrtle Beach by myself. I ziplined, rode a bike and held a conversation without my eyes glazing over and so many other things that 2017 couldn’t give me.
My life has changed a lot in the past year but one thing won’t. I’ll be spending New Year’s Eve at home and by myself, but this time I’m happy about it.
Alyson is 26-years-old and acquired her first brain injury ten years ago. She graduated from Ryerson University and is a youth worker at a homeless shelter. In her spare time, Alyson enjoys writing, rollerblading and reading. Follow her on Twitter @arnr33 or on The Mighty.
Studies have long shown that sleep deprivation, especially when chronic, can have detrimental effects to our health.
Just to name a few, poor sleep quality can impair brain activity, cognitive function, decision-making, concentration, learning, memory, balance, coordination, and emotional state. It also increases the chance of being involved in an accident.
All of these are common to the symptom profile of brain injury survivors. One of the most frustrating lingering effects from my concussion was disrupted sleep. At night, I had trouble falling asleep, staying asleep, and entering deep sleep. I either felt like I was half awake or I’d have terrible and vivid nightmares.
During the day, I was beyond tired and frequently took long, restless naps. I thought that I would never get better until a simple change to my sleep schedule triggered drastic improvements across all of my symptoms.
A neuropsychologist was the first to suggest that I focus my efforts solely on waking up at the same time each morning. Coupled with avoiding napping, this reset my circadian rhythm (i.e. internal clock) and improved the quality of my sleep. The medical director of the sleep laboratory that I visited also recommended this approach. After adhering to the new routine for just a few days, my headaches lessened in frequency and severity, the brain fog lifted, my mood stabilized, and I was able to tolerate more stimulation. Instead of relying on pharmaceuticals, I have adopted the following strategies for sleeping problems to my lifestyle.
Guidelines for Optimizing Sleep Health
Reset your Circadian Rhythm
Our bodies were meant to sleep after sun set and to wake with the sun rise. In fact, the highest quality of sleep that you can have is before midnight. However, bright lights in large cities, sedentary lifestyles, and modern technology has resulted in bad sleep habits that disrupt our internal biological clocks. Here are different ways that you can reset your circadian rhythm.
Go camping for one week
Studies have shown that camping for at least one week can reset adults’ internal clocks. This result was contributed to increased exposure to natural sunlight during the day and reduced exposure to artificial lights at night. That means that you don’t have to go camping to sync your body’s clock to nature’s light and dark cycle. See other strategies below.
Set your alarm and wake up at the same time, every single day
Setting a daily routine will help your body shift its circadian rhythm. It is difficult to control when you fall asleep at night, so focus more on when you wake up. Be sure to get out of bed as soon as the alarm goes off. If desired, set your wake up time half an hour earlier every three to four weeks, until you’ve reached the ideal time for your lifestyle. Eventually, your body will be conditioned to naturally wake up at the same time. The remaining tips will help you fall asleep faster and will make getting out of bed easier.
Get exposure to sunlight
Get at least half an hour of sunlight during the day. According to my sleep clinic, this is most effective if done within 30 minutes of waking up.
Don’t take naps!
If you must take a nap in the middle of the day, set an alarm and don’t nap for more than 20 minutes.
Avoid blue light before bedtime
Artificial lights and electronic devices emit blue wavelengths of light that suppress the secretion of melatonin, a hormone that regulates sleep.3 Using a TV, computer, phone, or tablet within 1 hour before bed will make your brain think that it’s still day time and disrupt your circadian rhythm.
An extreme method
I stayed awake for 36 hours straight so that I would be sleepy enough to fall asleep at an appropriate hour on the second night. I then applied all of the other healthier techniques moving forward. My neuropsychologist said that this extreme method is not appropriate for everyone, so consult your doctor first.
Adjust your diet
Avoid caffeine after 10 am
An even better idea would be to give up caffeine altogether for at least four weeks. Keep in mind that caffeine may be hidden in foods and beverages other than coffee and tea. This includes chocolate (i.e. cocoa), soft drinks, energy waters or drinks, coffee or chocolate flavoured ice cream, medications, etc.
Alcohol’s initial effects may make you feel sleepy, but it will actually wake you up in the middle of the night and/or decrease the quality of your sleep.
Don’t eat three hours before bedtime
You shouldn’t go to bed hungry either, so if you must eat before bed, choose healthy, light snacks and consume small portions.
Adjust your lifestyle
Regular physical activity, especially outdoors, will do wonders for your overall and sleep health. But if you exercise after 6 pm, it may end up stimulating instead of relaxing you.
Use your bed only for sleeping and sex
You don’t want to condition yourself to associate your bed with any activities other than sleeping. Also, if you’re unable to fall asleep or fall back asleep after 30 minutes, get out of bed and do something that is non-stimulating and does not involve electronic devices. When you feel sleepy, go back to bed and try again.
Don’t try too hard
When it’s time for bed, don’t try too hard to fall asleep. If you focus on the fact that you aren’t able to sleep, count the hours left in the night, or fixate on all of the things that you need to do the next day, stress and anxiety will prevent you from relaxing and will keep you awake even longer.
Inspect your bedroom
Ensure that your mattress has the right firmness for your comfort.
Ensure that your pillow supports your neck sufficiently.
Use blackout curtains in your bedroom.
Remove all artificial lights and electronic devices from your bedroom.
This will also prevent you from looking at the clock when you’re having trouble sleeping in the middle of the night. Checking the time when you can’t sleep can stress you out and keep you awake.
Create a bedtime routine and start getting ready 2 – 3 hours before bedtime
Take a hot bath or shower
Taking a nice hot bath or shower will relax you, but doing so within 2 hours prior to bedtime will keep you awake.
Write down your stressors and plans
As our bodies relax, our minds tend to wander and fixate on past mistakes, present stressors, and future plans. So 2 to 3 hours before bedtime, sit down with a pen and paper and write down your concerns, ideas, and to-do lists. Then set them aside so that you don’t have to worry about them until the next day.
Turn off lights and electronic devices before bedtime
At least 1 hour prior to bedtime, turn off all electronic devices. It is also preferable to turn off all of the lights. At the very least, dim the lights or use candlelight. Research also shows that wearing amber lenses in the evening can be effective at blocking blue light and improving sleep quality.5 Furthermore, keep all lights and devices turned off if you wake up in the middle of the night and are unable to fall back asleep. Just be very careful making your way to and using the bathroom in the dark.
Have a warm beverage
Drink a cup of warm milk before bed, because it contains tryptophan, an amino acid that promotes sleep. Alternatively, a naturopath recommended drinking a cup of herbal tea (e.g. chamomile flowers, lemon balm, or tulsi/holy basil) within 30 minutes to one hour before bed. If you are taking any medications, speak to your doctor and/or pharmacist to ensure that your herbal teas won’t interact with your drugs.
Take a magnesium supplement
Taking magnesium 30 minutes to one hour prior to bed may help with sleep disturbances. Consult your doctor and/or pharmacist to determine your proper dosage and to ensure that it won’t interact with any of your medications.
Wash your face and brush your teeth 1 hour prior to going to bed
Washing my face and brushing my teeth, especially when done with the lights on, tends to invigorate me, so I do these before I really start to wind down.
Engage in a relaxing activity
The goal of your night routine is to unwind your mind and relax your body before bedtime. Try a non-stimulating activity such as meditation, gentle yoga or stretching, colouring, or reading a boring book or magazine.
I still struggle with fatigue and sleep some days, but I’m confident that if I consistently practice these good habits, high quality sleep will soon come easily.
Alison suffered a concussion in 2013 that completely changed her lifestyle. She is finding her way back to her old self and still loves traveling, dogs, cooking, and helping others. She hopes to help other brain injury survivors and their caregivers by sharing her experience and by spreading awareness.
Holzman DC. What’s in a Color? The Unique Human Health Effects of Blue Light.Environmental Health Perspectives. 2010;118(1):A22-
Burkhart K and Phelps JR. Amber lenses to block blue light and improve sleep: a randomized trial. Chronobiology International. 2009;26(8);1602-1612.
One of the many things we lose during recovery from an ABI is structure in our day-to-day routines.
While rehab and specialist appointments may maintain a facsimile of structure to your day or week, what are you doing with the rest of your time? Have you fallen into a routine of sleeping the morning away, followed by an afternoon marathon of talk shows, soaps and game shows? Does your wardrobe consist of pajamas or sweat pants? By supper time do you start thinking about all the ‘things’ you should have done – only now you are beyond tired, and you remember you didn’t really eat anything (does a chocolate and left over pizza count?), and you’re now counting down the time until you move from your sofa to your bed – only to start the cycle again tomorrow? Unless of course there is a medical appointment you need to attend.
This type of day I call unplanned structure, in the early days of recovery you went from bed to medical/rehab appointments and back to bed, because that’s all your body and brain could handle. Over time, this became unplanned structure, as it was easier to do nothing than to think and make a decision about how you were going to carry out an activity, which may take more planning now than before you acquired a brain injury.
Know, I’m not judging. I‘ve lived this, but I’m here to let you in on a little secret – planned structure is key to getting back to adding more fun and enjoyment into your day.
For many people the word structure can conjure up visons of rigidity, being controlled, or being stuck in a boring routine. But structure can be a very powerful tool to help you get back to functioning on a regular basis and enjoying life. When you have structure in your life you know ‘what’s next’, which enables you to get on with your day. As ABI-survivors we can use up valuable energy trying to figure out what to do next. We might not do anything because we can’t decide or figure out what to do.
In the early years of recovery from ABI, I too was against structure, just ask my rehab girl Catherine. My reasoning was that I couldn’t predict what my energy level was going to be on any given day, so why plan anything? This left me doing nothing most of the time.
I also wanted to feel like I had control over my own day. Boy, was I wrong! When I finally gave planning structure a try – with the caveat that it was OK to re-schedule an activity if I didn’t have the energy for it (without guilt, or feeling like a failure) – it was such a liberating feeling!
Planned structure became my ticket to freedom, independence and a sense of accomplishment. Knowing what came next in my day helped reduce my daily struggle with anxiety and stress. I made sure there was always built in rest time between activities, and the more I repeated an activity on a regular basis the more it became a habit. My brain started to automatically know ‘what’s next’, and before I knew it I was doing my morning grooming without having to stop and think about it.
I’m not going to sugar coat it – it takes time, and some things will continue to need to be written down (that is a post for another day) but, know that each small step (no matter how trivial and small it may seem) will get you to where you want to be, living life to its fullest no matter what your new abilities may be.
When our food, exercise and sleep patterns are consistent our body and brain function better. This makes it possible to enjoy not only the tasks we need to do but to enjoy activities we like and try new activities too.
Benefits of structure
You know ‘what’s next’ and don’t waste energy thinking about what to do next
You habituate a new task or behavior
Automates activities in your day
You feel more in control being able to enjoy your day and your life
Eight tipsthat helped me add planned structure into my day that included activities to make my day and life more enjoyable:
A regular wake up time
Morning rituals to prepare for the day ahead (showering, dressing, breakfast etc.)
Evening rituals to prepare your mind and body for rest (unplug from computers, television 1-2 hours before your bedtime; read a book, have a bath, meditate/pray, etc.)
A regular bedtime
NOTE: there will be times where you will need to add your daily structured planned activities around your medical / rehab needs, and there will be times that you will be able to add your medical rehab appointments around the things you enjoy in life. With patience and time you will find balance between the two – this is when the magic of planned structure happens.
Allow for flexibility, especially on days you find your energy supply low
Its ok to add/remove activities as your likes change
Seek the help of a rehab team member, friend/family member, or psychologist in creating your daily structured plan if you are not sure how to get started.
Today, I have more enjoyment in my days and life in general because; I have created a daily structured plan that works for me. I encourage you to give adding structure to your day a chance. And let’s not tell Catherine that she was right about structure, that will be our little secret. ☺
Celia is an ABI survivor who is dedicated to helping others move forward in their journey and live the life they dream of. She is the founder of the internationally read blog High Heeled Life – inspiration for living a luxurious and balanced life; featured author in Soulful Relationships part of the best-selling series Adventures in Manifesting; a Peer Mentor with BIST; a regular speaker for Canadian Blood Services – Speakers Bureau; Self-care advocate; Lifestyle writer/blogger. In 2016 Celia launched the website Resilientista to inspire women to put themselves in their day, practice self-care on the daily and live their version of a High Heeled Life. Learn more about Celia and be inspired: visit http://www.HighHeeledLife.com or http://www.Resilientista.com
I recently went through a re-training session to once again become a mentor in BIST’s peer support program. It felt good, returning to a cause that is both helpful and important.
After a two-year stint as a peer mentor, I needed a break. Now, a year and a half later, I am stepping up to the plate again and returning to the program. It feels like the right thing to do, I have things to offer from my experiences both as a survivor, and as a caregiver of a brain injury survivor. The partners I was matched with in the past were pretty awesome and I think things worked out beautifully.
So why did I leave? Why turn away from something I enjoyed and I knew was making a difference? Because I needed to take action for myself.
We often think of ‘taking action‘ as doing something to benefit others or society as a whole. But I think we often forget to take care of our physical and mental health.
I know this is a difficult thing for me to do. As a survivor, the ABI I carry around like a shadow often makes me forget about self care. At the same time, I am fairly certain it is also my brain injury and experiences from it that have given me this type of feeling of social responsibility. This social responsibility is something I have heard other survivors experience as well. It is probably why most mentors are survivors.
Experience has taught me a lot, and I continue to grow and understand as I move forward. I cannot be afraid to take action and step back, especially when I am doing something such as mentoring, which affects others.
The BIST peer support program is a great thing to be involved in, but I think taking a leave (from anything really) can benefit ourselves and whatever it is we are doing. In this case, I think it can only make the program stronger in the long run if partnerships remain successful.
‘Taking action’, both inwardly and outwardly, is something that always needs to be considered. Because even if at first glance it may seem as though we’re moving backward, if we are really cognizant of what we are doing, we are always moving forward.
Do you feel like it’s the right time for YOU to become a peer mentor?
We have a training happening this spring – ABI survivors and family members welcome!
For more information, contact our programs and services coordinator, Kat Powell at: email@example.com or 647-990-1485.
Mark’s passion to lend a helping hand, offer advice and give back has developed into a moral and social responsibility with the goal of sharing, inspiring and growing – for others as well as himself. His experience as a survivor, caregiver, mentor and writer has led to his credibility as an ABI Advocate and author of his life’s story, Challenging Barriers & Walking the Path. Follow him on Twitter @Mark_Koning or go to www.markkoning.com