Patting blindly along the floor my hand finally found its way to the soft lump of the throw pillow I had tossed out of bed. Another futile attempt to find that illusive position which would magically allow me to drift peacefully off into dreamland. I was reconsidering - maybe hugging the pillow was more comfortable. Anything was worth a shot. I’d lie on my back, on my stomach, pulled the covers over my head, then kicked them off. I had curled up around a pillow on my right side, on my left side, with the sleep mask, without the sleep mask – no use. All this tossing and turning was practically getting a workout.
Drawing the pillow to me, I rolled into my standard position – curled up on my right side, facing the wall and tried to relax my mind. It felt weird, it was too hot – I didn’t want the thing near me! I threw the covers off, hurled the pillow away in disgust. Wracking my brain for ideas, I finally remembered my eye-pillow. I had gotten the small lavender-scented buckwheat pillow as a Christmas present years earlier. I didn’t use it terribly often, but its cool weight generally had a soporific effect and relaxed me into unconsciousness. Hopefully, I draped the eye-pillow across my face and waited … and waited … and waited … all to no avail. I couldn’t get comfortable – nothing helped.
It had been hours since I’d woken up. What time was it, anyway? 4:47, the telephone glowed. I’d gone to bed around 11, like normal, but somehow I kept waking up around 3. Third time this week. All this waking up in the middle of the night was killing me. I’d get seven or eight hours of alertness before exhaustion would hit again. It was like living sleep-paycheck to sleep-paycheck. What was the matter with me?
I blamed it on steam heat, stress, having too many things on my mind … and I truly believed it. If I were just relaxed things would be fine, I told myself; if my room weren’t a sauna I would sleep like a baby. Rationalization after rationalization for why I couldn’t sleep a whole night through….
A week or so later I was having coffee with B, a fellow TBI survivor. She told me that she participated in some studies Mount Sinai was doing on traumatic brain injury to make a little extra money. “I think they’re starting one on sleep disorders in TBI survivors next month. Do you have problems sleeping? I think they are looking for more survivors to participate.”
As so often happens, my mind erased the problems I’d been having, and I was quick to decline. “Thanks, but I usually sleep fine. I’ve been having some issues, but that’s just because of the steam heat. It isn’t brain injury-related.”
A few nights later, as I lay awake at some ungodly hour, it all came flooding back. There are close ties between brain injury and sleep disorders. Almost all survivors have problems sleeping. Disturbances in sleep is even one of the signs you have had a concussion! The fitful nights, the fatigued days, the irritability – it all fit – my problems sleeping were related to the brain injury. How could such an obvious connection have escaped me?
Easy – I wasn’t expecting it. I hadn’t had problems sleeping for years. So long, in fact, I had forgotten it was even a symptom of brain injury. I was used to looking out for certain problems – fatigue, spatial deficits, fine motor problems, and that sort of thing – and had all but forgotten about others. This kind of carelessness and inflexible thinking (refusing to consider brain injury even a possibility) is awful, because sleep disturbances can be one of the more dangerous problems facing survivors.
One would assume a group of people so prone to fatigue, would have no problems at all falling asleep. Sadly this is far from the case. When I am fatigued there is a window of time where I do fall asleep easily – I can sleep pretty much anywhere. However, if I push myself past this point, then I may lie awake bone-tired, but unable to fall asleep. Or more often, I will be able to go to sleep, but I will wake up a few hours later, my battery still low. This can turn into a vicious cycle, sleep disturbance leads to fatigue, which opens the door for all of the other deficits.
So how can one break out of this cycle? How can you avoid getting sucked into it?
To get out of the cycle, I find if I become trapped in this type of nightmare, the only way out is to “hit reset.” I take a relaxing weekend and allow myself to sleep in. If possible I highly recommend going to the country. Being around nature is extremely therapeutic and recharges my batteries. If you can, being around horses is wonderful as well.
It is important to remember is that sleep medications are not the answer. Though doctors will often misdiagnose survivors as suffering from insomnia and prescribe them, this will not help normalize sleep cycle patterns.
To avoid getting sucked in is easier than one might imagine. Some simple ways are:
- Keep a Regular Sleep Cycle
- Get into a Daily Exercise Routine (avoid working out at night)
- Eat a Balanced Diet
- Sleep in a Dark, Quiet Area
- Avoid Caffeine Around Bedtime
As far as suggestions for better sleep habits, there will be some you can follow, but others that are out of your hands. For instance, I live in New York, so blocking out the noise and light isn’t really an option. But you don’t need to live your life by a book – do what’s right for you! My best advice is to start slow. Work the easiest ones into your life first – stop drinking caffeine around bedtime, for instance. If that doesn’t help, add another one.
Sleep is the most important thing for brain injury survivors. A well-rested survivor can take on the world. We may need to be a little more careful, but it is definitely possible to get our sleep cycles back on track. Don’t let fatigue get the upper hand.
I would love to hear any ideas or suggestions for a better night’s sleep. Let’s all try and stay well rested so that we can be at our best…
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Patting blindly along the floor my hand finally found its way to the soft lump of the throw pillow I had tossed out of bed. Another futile attempt to find that illusive position which would magically allow me to drift peacefully off into dreamland. I was reconsidering - maybe hugging the pillow was more comfortable. Anything was worth a shot. I’d lie on my back, on my stomach, pulled the covers over my head, then kicked them off. I had curled up around a pillow on my right side, on my left side, with the sleep mask, without the sleep mask – no use. All this tossing and turning was practically getting a workout. 
