It has been a long and busy couple of weeks around here! It was made all the more challenging because I stopped taking the stimulants last weekend in preparation for my sleep study and other testing. I know that the meds would not have stayed in my system for much longer than a few days but I wanted to be absolutely sure the tests would be altered or my symptoms influenced by the stimulants at all. It worked out fairly well as I was so tired I could barely function. I was passing out constantly; dancing on the edge of sleep at all times…I’m not really sure how I made it through work. I was usually okay until 9 or 10 in the morning but would then crash…hard. I’d be nodding off several times per minute no matter what I was doing and I was struggling to get so much done! I managed it though, somehow. I was very lucky and was able to call in some help for a few days….I’d never have managed it were that not an option. I spent the entire week coming in early and leaving late and I didn’t manage to eat dinner once last week as I was asleep the moment I got home until the moment my alarm went off for work the next morning. The weekend consisted of doing small tasks for as long as I could before I crashed again…the house didn’t get very clean but I did get the groceries done and that was more than enough for me.
The day of the sleep study was Monday and I did my best to stay awake as much as I could on Sunday; I wanted to be really tired, although I doubt I needed to try very hard, considering. I was nervous all day so that kept me sort of awake, plus, I had a ton of work to do so I did my best to focus through the double vision and drooping eyelids. I left on time and picked Colt up on my way home, then packed my bag and sat, jittery, on the couch until Dayne got home just in time for us to leave. They drove me to the hospital where I was being admitted and walked me all the way up to the lab, which was very sweet of them. They were so sad, saying goodnight to me, as if I was going to be gone for a month, not just an over-night. 🙂 It made me feel so loved.
When I arrived, I was screened for the flu and then ushered into a tiny waiting room that was stuffed full of people. It was really very small so the 14 or so of us barely fit….it was quite uncomfortable….reminded me of riding a standing-room-only subway at rush hour back home. We didn’t have to wait long before the techs came by and started sorting us out. I was very worried that I’d have to share a room with people; I do not like to sleep around anyone. Ever. I also have a fear reaction to the thought of anyone watching me sleep, which made the whole observed sleep study a bit more than daunting. I tend to be very tuned in at night….throw back from childhood, I’m sure, trying to keep myself safe while my father and his friends crept into my bedroom at night. I never sleep comfortably when I’m not in my own environment and even worse so when someone else is near me. Dayne and Colt I’m good with but sometimes I even need to sleep away from them in another room to actually get any rest. Anyway….the crowd was unsettling. I was the only female that among mostly overweight, middle aged and elderly men. Nearly everyone else was in for snoring and sleep apnea so I was quite on my own. Thankfully, the techs took us each to our own little room with a single bed, washroom and just enough room to turn around in; it was perfect. The cameras were obvious and the monitoring equipment a bit scary looking but it wasn’t as bad as I remember it all being when I was a little kid having the same study done. Everything seemed much less threatening this time. Go figure.
The tech came in after I was in my PJ’s and wired me up. They put electrodes on my calves, thighs, chest, arms, chin, forehead, cheeks and neck. Then she put 12 in my hair with that horrible sticky paste they use to keep things secure (and wow did it ever work. I have long, tangly hair and it was down all night, getting all twisted around the wires….not a single one budged the entire time!). Then I had two straps secured around my middle and chest to monitor lung expansion, an oxygen clip shoved up my nose and taped to my face, electrodes attached to my upper chest, and a heart monitor attached as well. She taped an o2 sensor clamp to my middle finger and then plugged me in….every electrode attached to a wire leading to a small panel that hung beside my bed. I lay down right away, declining the offer to let me read for a few minutes to unwind. I had no idea how I would sleep all wired up the way I was; reading was even more complicated so I just chose to sleep. I texted my boys goodnight and then powered my phone down, as instructed, as to not mess with the equipment’s signals.
For a while, I lay there and thought about how similar I probably felt to a patient in the ICU with wires and monitors all attached to them. It wasn’t uncomfortable, exactly, but it certainly wasn’t fun. I tried to get comfortable on the terribly uncomfortable bed with its terribly uncomfortable pillows but think I lay there for a good hour before I really went to sleep….so unusual for me, but understandable, considering the circumstances. I woke up many, many times through the night. Sometimes it was because the wires were tangled in my legs or my hair and sometimes I was in pain from the shitty bed and pillow. I woke with my hip screaming several times but was just happy not to have a headache…that would have been awful to experience in that situation. I couldn’t get up to go pee or get any meds and would have probably messed the results up anyway, so, I just woke and slept and woke and slept so many times I had no idea how long I had been there. The camera woke me when it moved too…such a creepy mechanical sound in the pitch black of the room. I was asleep when they came in at 6 the next morning to get me up and woke exhausted.
“How did you sleep?” the lovely tech asked me.
I blinked back at her with puffy eyes, tape covering a good portion of my face, wires freaking everywhere. “Uh…okay I think. Maybe. I don’t know. I’m really tired.” I eventually managed.
She took off the leg and arm wires, removed the thing shoved up my nose, pulled the tape from my cheeks and took the belts off from around my chest and middle. She pulled off the ones on my chin and forehead and rubbed the skin with alcohol (omfg that burned like you’d not believe!) and then reapplied those ones. I was reconnected to the little box but, rather than hang it beside my bed, she pulled out a strap and hung it around my neck so I was mobile.
The next day was a series of scheduled 20 minute naps in which I would be connected and monitored the same way I was overnight in the study. They explained that they would be watching to see how deeply asleep I would get in 20 minutes, plus watch my brain activity between times. I was let out of my room to wander the halls after they brought me breakfast but I felt a bit self-conscious, all wires and goop, hair like a nest on my head, so I mostly stayed in my room, reading and playing on my phone between scans.
The first nap time came up and I was asked to fill out a survey rating my levels of sleepiness and tiredness and rate my level of clarity and alertness. There was also a survey to fill out as soon as they woke me each time. I was not too sleepy at 830, although was feeling quite tired and pretty foggy from my restless night, so I welcomed the lie down in the dark. After testing all the connections again, I was left to rest and I fell asleep nearly immediately, even beginning to dream, before they came back and woke me. After that first nap I was absolutely wiped out! I woke up so tired I could barely sit up in bed, let alone read for the next two hours. They watched me carefully on the camera, telling me that if I fell asleep I would ruin the study and would have to come back to do it all again. I fought so hard to stay awake guys….I was standing up, at one point, allowing myself to fall over to snap back awake before I hit the ground. I tried to read but my vision was splitting to double and words began swimming over the pages. I stood up and looked out the window and slipped under, waking when my forehead electrode jabbed into my skull as I clunked my head off the glass as I fell asleep. I have NEVER been so tired in my life….and I’ve been so tired I can’t blink without almost losing consciousness. The techs finally came in to help me…one stayed with me until the next nap, making me talk…asking questions about Colt and work. Some of my words were so garbled even I didn’t understand them, but it worked. She helped me lie down when the time came after verbally giving me the survey and pulled the blankets up. I remember nothing else until she woke me 20 minutes later and pulled me to sitting in the bed.
“Oh my god I’m so tired.” I said, surprised to find myself crying.
She was so sweet to me….rubbed my back and told me she knew how hard it was, that she saw patients who felt this way every day and that I wasn’t alone. She helped me out of bed and took me for a walk down to a lovely little atrium and didn’t leave my side for the next hour. At that point I was feeling like I could keep myself awake so went back to my room for a while. They had one of the RN’s from the lab run up to get a blood panel on me so I didn’t have to go to her (how kind was that?) and then I had my next 20 minute nap. Each nap made me feel worse….weaker, more tired, more sleepy. The final break between naps they brought in an ECG and wired me up with new leads to check my heart function, which looked fine as far as I could tell. The last nap came, I dropped off to sleep and I dreamed of electricity flowing through my body, lightning cracking inside my skull. They woke me, de-wired me and discharged me home all within a ten minute time frame.
I did get to see the clinical fellow who had seen me in clinic and ordered the tests for me. He showed up around 6 am to get a look at my sleep results. I thought that was pretty cool, considering it was an outpatient diagnostic test…I wasn’t technically an inpatient so didn’t get put on the rounds schedule. I heard him chatting with my technician and then he left, returning a few minutes later with one of the residents on his service. He introduced me to her and was excited about some of the information they pulled from my hours of wired sleep. He told me that it looked as if we got some good info and that they would be able to answer some of my questions in the results. As they left I heard him chattering away about how I’d be perfect for their study and that he was glad he would get to follow my case along for a while, since I’d signed agreement to have my information used for teaching or research purposes, if it was interesting or helpful. I work for the same hospital organization and we’re a strong teaching centre…I’ve always had a soft spot for the students around here.
When I was done and changed back into my clothes, I clumped my hair up into a sticky, messy bun and headed out. I didn’t even get to the elevators before I ran into Dayne. He had the biggest smile on his face and he swooped me into his arms for a huge hug.
“I knew I was going to miss you Grainne but wow, I had no idea how much! That was the most depressing, lonely, empty night I’ve had in a long, long time. Colt and I barely slept. Even the cats were crying and wandering the house looking for you all night!”
Like I said, I never sleep away from home if I can help it. Dayne often goes for overnights for work but never me. I have only ever spent three nights away from Colt in his entire life and two of those were when he was just a little guy so he doesn’t remember. Dayne and I weren’t on close terms then so it wasn’t as impact as this time was for him, apparently.
We left to get Colt from the babysitter and he came sauntering out, all cool and collected until he looked into the passenger seat of the car and realized I was there.
“MOM!!!!!” he yelled, throwing his school bag to the ground and running for the car.
He jumped in and wedged himself between the front seats, throwing his arms around me.
“I MISSED YOU SO MUCH! Oh Mom! I’m so glad you’re back with us and we’re a complete family again!”
I was nearly in tears. lol….this kid just melts my heart. They both missed me…very much. Colt spent the evening popping in every half hour or so to give me a hug and to tell me how glad he was that we were all back together again. His happy voice chirped away in his room, singing songs and playing with his toys. Dayne said he’d not made a peep the night before when I was gone. One cat was pissed at me for not coming home so he abjectly sat with his back to me about a foot away, never quite letting me out of his sight. When I talked to him he’d give a big sigh and ignore me some more. The little one was beside herself, flipping circles on the floor at my feet, all four paws in the air, trilling away for tummy rubs. She was all over me until her love, Colt, came by and then I was instantly forgotten. 🙂 We all fell asleep early, content and happy again, after I had a nice hot shower and got all the goop out of my hair. I had seriously jacked up my neck and arm in that hospital bed so couldn’t really move my head or raise my arm above my head so Dayne, the love, stood outside the shower and massaged the shampoo through my hair for me.
I kinda feel like the luckiest woman alive right now. I’m tired, in pain, busy at work to the point of nearly bursting into tears, but I only have 18 minutes to go and then I can go home for the day. It’s like summer out there, weather wise, and I’m going to have a beer with Dayne on the deck when we get home. I can hardly wait.
Test results come back in 4-6 weeks. Stay tuned for the outcome. I’m actually hopeful for the first time in a long, long while that some answers might be forthcoming. 🙂