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.
Although I usually post recipes I thought June being Brain Injury Awareness Month, I would talk about how I got here.
Back in 1991, when I was just 40-years-old (yes, you can do the math), I suffered a massive brain aneurysm. I am now turning 67 and even now when I speak to stroke survivors, I still get emotional. I was a healthy ski instructor, never smoked, did not take birth control nor had high blood pressure. I was bodybuilding with heavy weights and teaching skiing at least twice a week. So the bonus was, I was in great shape.
What I did not realize was that my mother had the same type of stroke at 37-years-old. Being Irish, she kept talking about the time she had the ‘spell’. My sister also had a TIA, a mini stroke, at 42 so definitely we were predisposed. This is another contributory factor, the hereditary card.
For the two months prior to my stroke I worked in a new job that I was struggling with that included a lot of travelling, driving and working all kinds of hours. I was single and dating so probably exceeding the number of drinks I should be having. I had a constant migraine, which sometimes I would think that I was just tired and I would ‘catch up’ on the weekend. I never consulted with a physician and later on, when I returned to work, realized I was self medicating.
Easter weekend I was teaching skiing at Mont Tremblant and had a migraine so severe I was vomiting throughout the night. In the morning I felt so tired and still nauseous. I tell people later the sensation of trying to move and I felt like I was literally was underwater.
Everything was an effort and my limbs wouldn’t respond. I finally made it to the chairlift but when I sat back, my head felt like it exploded. Fortunately for me the staff there are trained EMS services so got me into an ambulance where I was rushed into Montreal Neurological Institute, a leading research facility where I was diagnosed with having a stroke and treated quickly. That is the only reason I survived.
In hindsight, all the signs were there but like most people, particularly women, I chose to ignore them.
I thought I was overtired, stressed from work and lack of sleep. Well of course I was. Not realizing that expression, stress kills, is actually true! What I did learn, the hard way, is to know your own body and be kind to yourself.
Be aware of the risk factors: oral contraceptives, smoking, obesity, high blood pressure, family history, high alcohol use and stress. Most women have very high expectations of ourselves and even though they are exhausted think that they will “catch up” on the weekend. Well you know the drill, you have to be the driver, the cook, the therapist, model wife, and housekeeper and lo and behold the weekend flew by and you are still tired!
Now women have more strokes than men and heart disease in general is hard to diagnose in women we have totally different systems than men. The prognosis is much better for recovery with new drugs available, more research and 10 centres for Stroke Prevention in Ontario.
After suffering a stroke at the age of 40, Janet left the corporate world to open a personal chef business, Satisfied Soul Inc. Now retired, she continues to enjoy her passions of cooking, creating and teaching people how to eat properly.
Toronto’s Recollectiv is not your typical musical troop.
It is a group where people living with conditions such as dementia, post-traumatic stress disorder (PTSD), acquired brain injury (ABI), Alzheimer’s or Parkinson’s disease can come together to create and experience music.
But it’s also about improving group members’ quality of life, what Recollectiv’s founder, Ilana Waldston, says is about, “Rediscovering joy by making music.”
Waldston’s mother lives with dementia – and like others living with chronic conditions – her mother spends a lot of her time with doctors, social workers, and other professionals.
“[My mother] was a very vibrant, active woman,” Waldston said. “As her disease progressed, she lost so many of the activities she loved … singing [is] one of the few things left we can share that makes us both happy.”
Waldston sees Recollectiv as a way for individuals to focus on what they can do, as opposed to what they have lost.
“The main takeaway of Recollectiv [is to] touch others’ lives through group music making, something so fundamental and universal that elevates everyone’s quality of life,” Waldston said.
Recollectiv is inspired by the California band The 5th Dementia, created by couple Carol and Irwin Rosenstein.
Irwin Rosenstein, who practised real estate law, lives with Parkinson’s and early dementia. After his diagnosis, the couple realized Irwin Rosenstein’s memory, energy, and well-being improved when he played and taught music to others. This is backed by research, music therapy alters the chemistry in the brain by stimulating the release of dopamine, which effectively increases energy and improves mood.
In addition to The 5th Dementia, the couple created the non-profit MusicMendsMinds (MMM) whose mission is to support the mind and spirit of those affected by neurological disease, cognitive decline, and PTSD through musical groups. There are currently nine MMM affiliated bands in the U.S., mostly based in California, with other bands forming in the Philippines, other U.S. states, and the organization has been a supportive partner with Recollectiv.
The organization has also inspired a documentary, to be released this summer:
Back in Toronto, Waldston says finding activities for her mother has been difficult.
A trip to the symphony, an outing both Waldston and her mom previously loved, became challenging when her mother began to sing or talk along with the music, something generally not appreciated by fellow audience members.
It’s that stigma and feeling of non-belonging surrounding neurodiversity that Recollectiv hopes to neutralize in the future.
“I want [the public] to realize that people with cognitive challenges are just like them; they deserve to feel good about themselves, have friends around them who care and, above all, have some fun,” Waldston said.
Waldston hopes Recollectiv, which is a project of Smile Theatre Company, can lead to the creation of new groups and communities where people can access support and share a joyous activity together.
“I have lived long enough to know that life is short and unpredictable,” Waldston said. “You can’t fix a lot of things that cause people pain but if you can bring happy moments back into their lives, that’s a huge achievement.”
Recollectiv will meet in Central Toronto on Saturday afternoons in an accessible and barrier-free location. There is no cost for participation, and anyone who wants to sing and or play an instrument, regardless of any physical or neurological diversity, are welcome to join.
Robin Ly is a Bachelor of Social Work student at Ryerson University graduating in spring 2018. She has been completing her fourth year placement with BIST and loves that she’s able to get back into writing to talk about advocacy, awareness, and transformative change.
There is a saying, ‘no two brain injuries are alike.’
This is true, every acquired brain injury is indeed different. But these horrid ABIs share some commonalities, and one in particular is fatigue.
Similar to brain injury, fatigue is invisible. I find it to be hiding in the corners of my brain, lurking in the shadows. It seems to be ready to jump into action at any given time of the day. A nap, or extra rest, does not cure it.
extreme drowsiness, typically resulting from mental or physical exertion or illness.
I’m not sure if people understand the effect fatigue has on someone living with a brain injury. I find it comes in waves and at various levels of low, mild and extreme.
It is a silent paralyzer, and never a pleasant experience. It is disorienting. One could almost wonder how much worse it possibly get?
Remember last summer? 2016 was the hottest year on record. This summer we have some relief, but the heat and humidity persist on most days, and they are a lethal instigator of fatigue.
While I’m not sure what is the best way to beat this devastating duo of fatigue and the heat wave, I know there must be a way to deal with it.
Perhaps it is inner strength, or knowing how to slow yourself down and breathe. Maybe the answer is to go for a nice cool swim or take a cold shower. Regardless of how staggering it can get, like with many things, I will get through it and survive.
I’m sure any of us who come up against these monsters can do the same. (And remember, fall is just around the corner.)
But sometimes I wonder, which is harder? Dealing with the fatigue or dealing with the fact that others don’t understand why I’m dealing with the fatigue. Maybe it is me not always telling people that I’m trying to deal with the fatigue.
Wow, that’s confusing, but that is also brain injury.
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