Regular blog readers have heard me whine before about my fatigue issues. It’s been a problem since college, and lately, it’s been a big problem. When you fall asleep standing up against a telephone pole at the bus stop and the bus has to honk at you to wake you up, or when you’re falling asleep at your computer at work, there’s a problem.
I’d complained to my docs at home every visit for the last year. We did a sleep study a little over a year ago, but how they got any usable data from it I have no idea. I don’t think I slept more than 30 minutes all night. The thing is I have my little night time routines. I’m a night owl by nature. But the sleep lab insisted I go to bed at 9:00 pm. I was wide awake, trying to sleep with all these wires hooked up to me etc. It just didn’t work. And when the nurse came in exasperated at 2:00 am announcing that “if you don’t hurry up and go to sleep they’re going to make you do this again…” well, that pretty much assured no sleeping would happen.
It just so happened that on this trip Dr. Markello and the lab have a new toy. Grin. They’ve often tried to get sleep studies for HPS patients, but the sleep lab is run by another institute, manned by apparently spotty nighttime contractors, and the sleep studies never seemed to work out. Then someone found out that some sleep study equipment was being sent out to pasture, and they snapped it up. Dr. Markello has been working on learning to use the equipment and hadn’t had a chance to try it out yet. So, we decided we’d try it.
It was quite the show. The first evening we spent hours hooking up all the little wires to my head. The first round was a flop. Apparently, there’s quite a technique to hooking up those wires. Dr. Markello turned the machine on and we pretty much didn’t get anything. Assuming that I actually do have a brain in there somewhere, we tried again, and this time made connection.
The computer monitoring my sleep was right next to my bed, and thus poor Dr. Markello spent the night camped out at my bedside. I honestly wasn’t sure if I could sleep with him there. It was hard enough in the sleep lab knowing that some camera was watching you. Would I be able to sleep with an actual person sitting there watching me? But as it turned out, it wasn’t that tough.
I’ve gotten to know Dr. Markello pretty well and I feel very comfortable with him. I trust him. Thus, when I woke up fighting the CPAP, or twisted up in the wires etc. it was somehow comforting to see someone you trusted help you get out of bed and then tuck you back in again (re-hooking up all the wires is what I mean by that.) When I did the sleep study at the hospital at home, it took forever to fall back asleep when I woke up. I kept thinking about that camera watching me. Perhaps because I was in familiar surroundings with familiar people, it wasn’t so hard.
The thing is it felt like I had to get up to pee every few hours. I don’t do that at home. But, since they measure the volume of your pee at NIH, and I always arrive dehydrated and dry as a bone, I’m always sucking down lots of water to turn in a good performance. Grin! It always catches up with me at night.
By the morning the data we’d collected was so/so. Not all the connections had survived the night. But, Dr. Markello, now determined to get this figured out and having seen me struggle with sleep for a night, decided we’d make another go of it. He somehow made connections with Jackie, a woman to whom we both now owe a big debt. She’s the head technician in the sleep lab, and she agreed to stay late to hook up the wires and perhaps show Dr. Markello a few of her tricks.
Dr. Markello was such a trooper. When the favors were called in to get me the MRI, it meant that we were risking missing Jackie. So, Dr. Markello came with me to the MRI so we could immediately go the sleep lab. It turns out the glue they use to attach the wires really isn’t so bad and comes out pretty easily.
The second night we got much better data – or so I hear.
Dr. Markello has this way of gently laying down the law and giving you a bit of a lecture that doesn’t seem so much like a finger wagging lecture.
I’d always assumed the CPAP was a total waste because I find the mask so annoying (and I’ve tried every type of mask out there. I have a mask collection to prove it.) Are you really getting any sleep if you wake up every hour? I felt like I was better off to not use it and at least get through the night. When the fatigue would get really bad, I’d give the CPAP another shot, and always got frustrated.
Dr. Markello assures me, however, that the sleep I get with the mask, no matter how fretful, is better than the sleep I’m evidently not getting without it.
So, appreciative of all the effort it took to uncover this information, and an image of Dr. Markello passed out at the computer, his head conked on the table in the middle of the night, I’m approaching the wretched CPAP machine with a new resolve to stick it out. I’m trying. I really am – not with much success so far admittedly, but I’m hanging in there.
Frankly, if I don’t kick this fatigue issue, so many of my other issues don’t have a chance. I can’t eat well, lose weight, lower my blood pressure, and keep gainful employment if I don’t stop falling asleep.
I’d complained to my docs at home every visit for the last year. We did a sleep study a little over a year ago, but how they got any usable data from it I have no idea. I don’t think I slept more than 30 minutes all night. The thing is I have my little night time routines. I’m a night owl by nature. But the sleep lab insisted I go to bed at 9:00 pm. I was wide awake, trying to sleep with all these wires hooked up to me etc. It just didn’t work. And when the nurse came in exasperated at 2:00 am announcing that “if you don’t hurry up and go to sleep they’re going to make you do this again…” well, that pretty much assured no sleeping would happen.
It just so happened that on this trip Dr. Markello and the lab have a new toy. Grin. They’ve often tried to get sleep studies for HPS patients, but the sleep lab is run by another institute, manned by apparently spotty nighttime contractors, and the sleep studies never seemed to work out. Then someone found out that some sleep study equipment was being sent out to pasture, and they snapped it up. Dr. Markello has been working on learning to use the equipment and hadn’t had a chance to try it out yet. So, we decided we’d try it.
It was quite the show. The first evening we spent hours hooking up all the little wires to my head. The first round was a flop. Apparently, there’s quite a technique to hooking up those wires. Dr. Markello turned the machine on and we pretty much didn’t get anything. Assuming that I actually do have a brain in there somewhere, we tried again, and this time made connection.
The computer monitoring my sleep was right next to my bed, and thus poor Dr. Markello spent the night camped out at my bedside. I honestly wasn’t sure if I could sleep with him there. It was hard enough in the sleep lab knowing that some camera was watching you. Would I be able to sleep with an actual person sitting there watching me? But as it turned out, it wasn’t that tough.
I’ve gotten to know Dr. Markello pretty well and I feel very comfortable with him. I trust him. Thus, when I woke up fighting the CPAP, or twisted up in the wires etc. it was somehow comforting to see someone you trusted help you get out of bed and then tuck you back in again (re-hooking up all the wires is what I mean by that.) When I did the sleep study at the hospital at home, it took forever to fall back asleep when I woke up. I kept thinking about that camera watching me. Perhaps because I was in familiar surroundings with familiar people, it wasn’t so hard.
The thing is it felt like I had to get up to pee every few hours. I don’t do that at home. But, since they measure the volume of your pee at NIH, and I always arrive dehydrated and dry as a bone, I’m always sucking down lots of water to turn in a good performance. Grin! It always catches up with me at night.
By the morning the data we’d collected was so/so. Not all the connections had survived the night. But, Dr. Markello, now determined to get this figured out and having seen me struggle with sleep for a night, decided we’d make another go of it. He somehow made connections with Jackie, a woman to whom we both now owe a big debt. She’s the head technician in the sleep lab, and she agreed to stay late to hook up the wires and perhaps show Dr. Markello a few of her tricks.
Dr. Markello was such a trooper. When the favors were called in to get me the MRI, it meant that we were risking missing Jackie. So, Dr. Markello came with me to the MRI so we could immediately go the sleep lab. It turns out the glue they use to attach the wires really isn’t so bad and comes out pretty easily.
The second night we got much better data – or so I hear.
Dr. Markello has this way of gently laying down the law and giving you a bit of a lecture that doesn’t seem so much like a finger wagging lecture.
I’d always assumed the CPAP was a total waste because I find the mask so annoying (and I’ve tried every type of mask out there. I have a mask collection to prove it.) Are you really getting any sleep if you wake up every hour? I felt like I was better off to not use it and at least get through the night. When the fatigue would get really bad, I’d give the CPAP another shot, and always got frustrated.
Dr. Markello assures me, however, that the sleep I get with the mask, no matter how fretful, is better than the sleep I’m evidently not getting without it.
So, appreciative of all the effort it took to uncover this information, and an image of Dr. Markello passed out at the computer, his head conked on the table in the middle of the night, I’m approaching the wretched CPAP machine with a new resolve to stick it out. I’m trying. I really am – not with much success so far admittedly, but I’m hanging in there.
Frankly, if I don’t kick this fatigue issue, so many of my other issues don’t have a chance. I can’t eat well, lose weight, lower my blood pressure, and keep gainful employment if I don’t stop falling asleep.
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