Sleep disturbances and brain injury go together like bread and butter. But I had sleep problems even before my injury. I’ve had four (five?) night-time sleep studies and one day-time one, the latter as part of the first night-time study. They’re, uh, fun. Think round things glued with concrete to your skull, straps round your face underneath your nose and jaw, more straps round your chest and abdomen, electrodes on your legs, probably ECG electrodes, and if you’re real lucky, like I was the first time, an O2 sat monitor clamped to your forefinger, one that goes off every single effing time your oxygen blood saturation dips. They mercifully removed it so I could, you know, sleep.
The last study was apparently in 2003. I say apparently because that is what the record says, but to me it feels like only five years ago. I’ll never forget though how devastated I was afterwards. “Nothing we can do.” When you’re desperate for sleep, those words followed by the usual sleep hygiene instructions and the doctor ushering you out the door are like a cleaver slicing down into your heart.
Recently, I got in to see a neuropsychiatrist at the Toronto Western Hospital, the place that treats brain injury and is the centre for things sleep related. I had my first sleep study there, about twenty years ago. They couldn’t do anything for me back then or in the 2000s. But my new brain injury doctor doesn’t think it’s acceptable to say can’t help and to send me on my way, leaving me to figure things out for myself, especially since I still struggle with sleep and fatigue. He referred me to a new sleep specialist. The new specialist’s assistant gave me an envelope, telling me to fill out the questions and bring them with me for my appointment. Tedious, I thought, but no big deal. Between the specialists I’ve seen and the umpteen insurance assessments, I’ve filled out soooo many forms, I can almost do them in my sleep. I figured it’d be the usual one or four pages.
It’s a booklet!
I should’ve started filling it in a month ago!
Oh well, nothing to do but shove all my other priorities off my schedule and start circling. I managed to get to page five when I shuddered to a stop. I tweeted, naturally.
When I returned to the sleep questionnaire the next day, I still couldn’t answer how non-restorative sleep impacts me separate from too little sleep and interrupted sleep. The complicating factor for me is that my brain injury has also affected every aspect they list. It’s like the chicken-egg question: What came first? Which is more important, brain injury or sleep, in affecting the listed aspects? Are they cumulative? Are they independent of each other or synergistic? And most of all, how the heck would I know if broken or short or non-restorative sleep affected x, y, or z?
Sleep is supposed to restore you, just like Borg alcoves regenerate Borgs. When sleep doesn’t restore, that means you don’t wake up feeling refreshed, restored, repaired. You wake up feeling like a Mack truck has had its way with you. I assume you can’t get restorative sleep if you don’t sleep continuously, if you don’t sleep an adequate number of hours, and/or can’t fall asleep within a reasonable period of time. The morning after I began filling in this questionnaire, I woke up feeling worse than when I had gone to sleep – talk about annoying — even though my perception was that I had slept about seven and a half hours, a pretty good stretch for me. But as I know from my previous sleep studies, I micro-wake up to sixty-five times in a night (fewer after my brain injury). I wake up and fall back asleep without even knowing it.
Anyway with the appointment nigh, I pushed myself to complete the thirty-page booklet of questions, even through the long list of different words for “tired.” Makes one realise the variety of ways one can be tired. I’m getting tired just writing “tired.”
It’s so true. Practically every medical form I’ve filled in has questions on sex. But usually the questions are few in number, and when I filled in the ones for IMEs (Independent Medical Examinations for insurance companies, so take the “independent” with a grain of salt), I usually skipped them. None of their prurient business. But I don’t recall ever seeing separate questions for males and females. That raised my eyebrows.
Good questions though to ask, if you really want to get to the bottom of the sleep problem. But that wasn’t the end of the booklet. This two-page section was — almost:
I like “last 19 questions” as though the final page after this section didn’t exist.
As if the sex questions didn’t clue me in, or the size of this booklet, the fact that they squeeze in many, many questions over two pages on this aspect of sleep-wake rhythm alone, tells me that this sleep clinic is good, that the sleep clinic at the Western has progressed a lot. Most doctors or therapists ask me if I’m an Owl or a Lark, as if I would necessarily know. For some healthy folk, it’s easy to tell, but if you have a brain injury and tremendous fatigue or fall asleep anytime, anywhere, how can you tell in the midst of all the breaks and pacing when your truly best time of the day is? I thought I could. But this past year, I’ve come to the conclusion I don’t have a clue. The nice thing about this two-page spread is that they’re determining what you are based on objective questions.
When I turned the page and finished, I was so relieved, I didn’t even care I shall have to wait to find out if I’m a Lark or an Owl. And so a word to the sleepy and tired and weary, if you’re referred to a good sleep clinic, when they hand you an envelope and tell you to fill in the questions and bring them back to the first appointment, start right away!