Last Updated on: 14th November 2022, 06:39 pm
guh. It’s almost the end of my vacation, and I feel like I’ve been run over by a truck. Did I do anything super duper exciting? Nope. But I did have to go for a sleep study. I still feel like I’m recovering.
“So what the heck is a sleep study?” I hear you ask. Well, some people have different troubles sleeping. Some people snore. Some people have sleep apnea, so they stop breathing in their sleep. Some people have involuntary leg twitches. Some people have insomnia. Some people have odd sleep behaviours. So, they get sent to a sleep lab to monitor their breathing, heart rate, brain wave activity, eye movement, leg movement, etc. and figure out what they might need in terms of devices or surgery or whatever to make their sleep do what it should. We know all about my frequent bouts of talking and doing things in my sleep, so that’s no surprise. But I also snore like mad. I think there’s a cast where Steve talks about the time I was snoring so loudly that he thought the freezer was broken. He has also increasingly talked about how it sounds like I stop breathing and he has to kind of nudge me to start breathing normally again. My blood pressure is stupid high and seemingly unstoppable, so the doctor sent me for a sleep lab to see if the problem starts when I’m sleeping and keeping everyone else awake with my thunderous snoring and wild outbursts. So I got my appointment. It was scheduled for this past Tuesday.
I went to the Paris branch of Accq Sleep Labs because my doctor thought I could get in there faster than the ones in Kitchener and Cambridge. It was going to be a bit of a pain getting there since obviously I don’t drive and although I could probably Uber to the sleep lab, I would have a hell of a time getting back because I’m not sure if Paris has Uber and if they do, how many drivers would be available super early in the morning when they coughed me out. Very luckily for me, Steve’s mom was nice enough to offer to drive me there and back. She got waaay more than she bargained for. Sorry, Steve’s mom. I thought I would describe the process, plus some blind-guy-specific oddities that I thought more people should know about. Hopefully we can work on fixing some of them. Probably not, but I can dream.
So, let’s start with the intake call, because that’s when the weirdness started. They called me up, and asked me the basic questions about why my doctor was referring me, what my sleep habits were like, bla bla bla. Everything was ticking along beautifully…until…they asked me if I would need to bring any mobility devices to the lab. I told them I had a white cane because I am blind, I decided to leave Tansy with Steve, and you could hear the record scratch noise for miles. All of a sudden, I was told that their policy was if I was blind, I had to bring someone with me and they had to stay the night. If I couldn’t get someone, I couldn’t have the study. I asked them why, and their only reason was “Well, the bathroom is far. What if you need something in the night? The technicians can’t help you.”
I was mad. I tried to fight it, saying just show me where the bathroom is a few times before you wire me up and I’ll probably be fine. And most nights I don’t have to get up and pee a bunch anyway, so most likely I’ll just be in my bed until you unhook me in the morning. But they were like dealing with a stone wall. So I asked Steve’s mom if she would mind also staying the stupid night with me to satisfy their policy. I was very lucky that she said yes.
Once I calmed down a little bit, I wondered if it was less about the bathroom and more about them worrying about some fire emergency happening and not being able to get me out. So I accepted it, even though it ticked me off. I was going to have to inconvenience someone else just because they had decided I was incapable of sleeping in a bed without supervision.
Then, I talked to a few other blind people who had gone for these sleep studies before, and they all said they had never required a night nanny to proceed. Now, I was starting to think it was less about safety concerns and more about fear. But I would reserve judgment until I had done the study.
So, the day came. I had to arrive at the lab ready for bed because they didn’t allow people to shower or brush their teeth there because of COVID. Totally understandable. They made sure that I knew my sleeping attire must include a top and a bottom. Wow! What sorts of folks show up there? They had told me that I would be leaving the next morning around 6 in the morning, but they never made clear if we were allowed to change out of our sleeping clothes or whether we had to leave in our jammies too. So, I assumed we were out of luck for changing, so didn’t bring an extra set of clothes.
As soon as we got there, I started to spot the problem. Upon arrival, they handed us a stack of forms. No. They handed them to Steve’s mom and said “Fill these out for her, please.” It was like I was cargo. They asked for my health card. When I pulled it out and held it out for them, I guess they wanted to just look at it, not take it from me. But instead of saying “Can you hold it by the sides so we can see the numbers?” They looked at Steve’s mom and said “Maybe it’s better if you hold it.” Grrrrrr! When they gave Steve’s mom a parking pass, they said “She can stay here, don’t worry.”
Although annoying, I can accept one occurrence, maybe two, of speaking to Steve’s mom about me. But once I have established that I am capable of hearing and understanding by responding to your questions, the talking to my obligatory support person STOPS! This was doubly annoying because during the intake process, they assumed that Steve’s mom lived with me, and even when I had to call her to check her availability, and call back, they were perplexed as to why I couldn’t just hand her the phone so they could get her info. Guys! I live independently!
But the addressing Steve’s mom instead of me didn’t stop. After Steve’s mom filled out all the forms, we headed up to the lab. They wanted a height and weight. As I tried to get on the scale, it was a narrow scale. Immediately, the technician said to Steve’s mom “Tell her to get herself more in the middle.” I was trying my level best to control my anger. I’m coming here to sleep, for the love of Pete. I don’t need to be all fired up. So I said nothing…even though I really wanted to look at her and tell her to stop speaking to Steve’s mom about me. But I didn’t. I bit my tongue.
They showed Steve’s mom where the washroom was. It was right next to my room. Not only that, but there were two bathrooms available on the floor. “But the bathroom is so far!” they said.
Then it was time to get wired up, and boy oh boy do they wire you up. The technician was really good at this part, answering my myriad questions, so she wasn’t all bad. She also got better at warning me where she was going after I startled when she just walked up behind me and started applying the goop to my legs.
Steve’s mom got a lovely picture of me all hooked up to all the leads and things.
Let me see if I can remember everywhere they were. I’ll probably make a mistake or two.
- The back of my head.
- The sides of my head.
- Behind my ears.
- The top of my head I think.
- My temples.
- Near my eyes.
- Along my Jaw.
- My chin.
- My chest.
- My legs.
- Bands around my chest and belly.
- Finally, a nasal cannula.
Oh yeah, and then there was the oxygen measuring thing on my finger. I’m not complaining, just holy wow! That’s a lot of wires, and they look really thin and fragile! It’s a good thing I took a friend’s advice and wore pajamas with a button-up top.
Then the technician told me all about the fact that there’s a camera in the room and a microphone too, and how after I am in bed, she will talk to me through the intercom and ask me to do a bunch of stuff to make sure all the leads are doing their jobs. She also told me how I was supposed to let her know if I need to go to the washroom because she would have to unhook me. *record scratch goes here.* So if anybody needed to go to the washroom, they would need the technician to unhook them, and hook them back up. So the technician would be helping anyone back and forth from the washroom.
In the morning, there was another form asking me how my sleep was, and how it compared with sleeps at home. I don’t think I slept very well, although they tell me they got enough data. I just could not go out deeply, and Steve’s mom said I didn’t snore. So I hope whatever data they got tells some kind of semi-accurate story. Now, I wait for the word. Once they unhooked all the leads and told us we could get dressed (we’re allowed to change clothes?), we left the place.
I am told that if they found a problem, I would probably need a follow-up study, which would mean summoning some kind of nanny again. The only thing I really needed help with, beyond the help everybody needs, was help with the forms, and with a little bit of planning, we could have found a solution. They could have given me the forms electronically, and even if they weren’t fillable, I could have written out the answers and emailed them somewhere and they could have put them on the forms. Everything could have been handled if they had just worked with me. And stop with the talking about me in third person. All that’s needed to fix that is a little bit of basic training for their staff.
I’m not completely unreasonable. I realize there are some disabilities that totally need some assistance. If someone showed up in a wheelchair and needed help transferring to the bed, they should probably bring someone who knows what they’re doing. If someone had dementia or an intellectual disability or other difficulties communicating or following instructions, they probably should have someone there. But I was none of those things. We could have worked together, and there was almost no reason why Steve’s mom had to spend a night there too. Of course, they should offer bringing someone for support as a choice, but in most cases it should be a choice, not a requirement.
I guess, if there was a fire, that could be a risk, but there are three patients per technician, and as long as I wasn’t tripping on the wires going down the stairs, we could have worked together, I’m sure. The thing is everywhere I go, there is a risk of a fire happening in the building. That doesn’t mean I have to bring a guide everywhere I go.
Ok…now that I have hissed and spat for a while, let’s talk about the actual sleep lab experience. I don’t know how people manage to sleep while hooked up to all that stuff. The technician said that some people actually sleep better at the sleep lab because they’re not sharing their bed with a snoring spouse or pets. Holy crap! That’s one loudly-snoring spouse or some restless pets! I was constantly afraid to move for fear of ripping loose some lead or other or breaking some wire. For a while, I was afraid to try and put my hand with the oxygen monitor thingamabob on it under the blankets, so was getting cold. Then, that nose cannula thing felt like it was constantly trying to pick my nose. Every time I would drift off, I felt like a metaphorical bungee cord would bring my consciousness back. I think I slept some, but it wasn’t good. Also, my fellow sleepers didn’t know how to shut a door quietly when they went to the bathroom, so every time someone left their room, slam! Slam! Slam!
And that goo they use to put the leads in is tricky stuff to get out. I shouldn’t complain. It’s way easier to remove than the stuff they used for EEG’s in days of old, but I have had a couple of showers, and I’m still finding pockets of the stuff in my hair. Arg! A friend said I should use dish soap to get it out. Maybe I should have. I don’t know. I guess, when you’re washing your hair, give yourself a really good scalp massage.
I came home Wednesday morning early, managed to stay awake until noon, and then conked out for about 3 hours. Then, I was passable for the rest of the day and then slept like a log. Thursday was a decent day, but then for some reason, I was up all night Thursday night…so yesterday was not too pretty. I have no idea if it was residuals from the lab, or just general stress, but Thursday night’s sleep was pretty awful. At least last night I had a good sleep for the most part. Let’s hope for today. Hopefully, if I have to go back, I can ask for more tips to make sure I get as good a sleep as possible.
And one more thing I wanted to mention about the piles of forms I filled out. Most of them were pretty normal stuff, although it’s really weird being asked if I have syphilis (yuck!) but they have some creative questions on the form where they ask you about your sleep issues and habits. I was especially amused by the questions where they ask you to rate your quality of alertness or something like that. They had everything from “highly alert and focused” to “wish to lie down” or “wish to return to bed”. I was also puzzling over the difference between “groggy, drowsy, let down” and “groggy, draggy, slow.” I eventually made a decision, but it really made me think about the minute differences in sleep quality, which is a good thing at a sleep lab I suppose.
So now, I wait. I was told that it will take some time, and the response time will depend on how bad my sleep issues were as compared to the other patients, so I have no idea how long the wait is. Hopefully I get some useful feedback on what’s going on, and hopefully I can have a good conversation about my concerns with someone.