Mary
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My (identical) twin sons had arranged for me to come to Austin, Texas, where one lives with his wife, for a week spanning the 4th of July week-end. My other son lives in Memphis and he and his daughter were flying out. (My grandson in Memphis would be at a camp for a month where no electronics are allowed!) It was a belated birthday celebration, plus our first real get together since Covid. I was going to combine it with a visit to a sister who lives 2 hours from Austin in Pipe Creek, and another sister was flying out from California to meet me there. It took a lot of planning on my part to be gone for 8 days - 8 days of pills! Arggghhh! 
Which meant 8 large pill dispensers, making sure I had enough pills on hand, had to order a couple of dispensers. Packing clothes is the easy part. But my pills . . . day pills, night pills, middle of the night pills so I can sleep ....
But I got it all arranged. And going to the airport is a nightmare too - I live 2 hours from LAX (on a good traffic day). The airport shuttle had only recently started running and they weren’t even sure they’d be able to get me home on a return shuttle - not enough seats booked. Which left me with the prospect of driving to LAX at 4:00 a.m. to arrive by 6:30 a..m. for an 8:35 a.m. flight - almost as bad as the pills! But I was determined. Okay, got that all planned and sorted.
So I started sorting the pills a couple of days ahead of time, only a new wrinkle pops up - I stop sleeping. Out Of The Blue. Well, actually I sleep very lightly from 9:30 or so until 11:00 p.m. at which point I pop wide awake, and am wide awake the rest of the night until 5:00 a.m. This is insomnia on a scale I haven’t experienced before. I would say it was a nightmare but I didn’t sleep enough to have nightmares.
I wasn’t stressed, I’d really been looking forward to my trip. I began wracking my brain for anything new I might be doing or taking. All my usual stuff didn’t make a dent, including Unisom, my heavy hitter which almost always works when I’m desperate. That whole time is a blur now but it began to occur to me that I wouldn’t be able to go to Texas if I wasn’t sleeping. Then the night before - rather, the morning I’m supposed to get up at 3:00 a.m. so I can leave by 4:00 a.m. for LAX, I’m still wide awake at 2:00 a.m. and finally conceding defeat. I can’t drive to LAX on almost no sleep, and even if I could, I can’t go to Texas like this. I would be a spectral wraith haunting the halls, scaring everyone, blurry-eyed like something out of The Night of the Living Dead!
At 5:00 a.m. (Still wide awake!) I text my son what’s going on, that I’m not flying that day. But that it’s sudden onset, so I hope to resolve it quickly. He was very kind. They’re used to ME/CFS. I tell him I have a few ideas of what may be going on and he’s able to re-schedule my flight out for a few days later - okay, I’ll miss almost half a week, but will still be there for the week-end. Only that doesn’t happen either. The sleepless nightmare goes on.
At first I thought the problem was I’d run out of NAC (it was unavailable a few weeks ago) and I learned that cysteine is needed to make taurine, and I had learned several years ago in the middle of another sleepless nightmare involving MSG that taurine is needed to help with neuro-excitotoxicity (which did resolve my extreme MSG sensitivity). So confidently I ramp up my taurine, sure I’ve got it and - nothing. Just as bad as ever. Then I think it’s the B6 - in filling my dispensers I inadvertently doubled my B6 dose, and B6 can cause insomnia. I have to go through everything trying to pull out the B6 which looks just like my B1. But nope, that didn’t do it either.
Now my son’s talking about me coming out after the 4th, I’ll see him and my daughter-in-law for a few days, and then they’re going on a long-planned trip for a week, and I’ll pet sit their dog (they’ll get a dog walker in, they know I can’t walk it, but the dog needs company and they have a pool I can float in. It sounds nice.)
Meanwhile, my sister who was going to fly out from California and meet me in San Antonio to go see everyone, is having fun with my sister who lives in Pipe Creek (2 hours from Austin), and THEY got to go up to my son and daughter’-in-law’s and have a nice dinner and a lot of fun and spend the night, and I’m home trying desperately not to feel too sorry for myself.
And then I get a glimpse of hope - my bowels have been affected as well. And not in a usual way when something disagrees with me. I won’t go into the details but, well, somehow (I think this is how it happened, I can’t really remember) this led me to look into vitamin C and sleep. And bingo! Too much vitamin C can cause insomnia! I had made some liposomal vitamin C about 6 weeks earlier. I get sick every time I crash, which is at least once a week. My white cell count has been low for over 20 years, and doctors just shrug. Anyways, the homemade liposomal vitamin C was helping with this only apparently I had finally reached bowel tolerance, which I’ve never done before. And it caused Killer Insomnia. There’s not much info out there about this, but I managed to find some. Doing very rough calculations I figured I was getting roughly 500 mg liposomal vitamin C per tablespoon of the solution, and I was taking 2 tablespoons with each meal . . . (it just seemed like a good amount!) The good news is that apparently DIY liposomal vitamin C actually works!
Anyways, I stopped the vitamin C and that night, with the help of everything in my large arsenal, I was finally able to sleep. It was heaven. Only a new wrinkle in Austin - my son who had flown in from Memphis just found out he had Covid! Arggghhhh!!!!! He’s strong and healthy and was not severely ill, but he tested positive - he had quite mild symptoms. He had had the pfizer vaccine back in March (no, he wasn’t old enough to get it but was on a cancellation list)
So we made a mutual decision - I wouldn’t go at all. I didn’t want to test my immune system and they didn’t want me to do that either. No one else there got Covid. My trip officially over before it began. You could say looking on the bright side that the killer insomnia kept me from being exposed to COVID but that doesn’t make me feel any better. Both my sisters were exposed but they’re both fine. Everyone had been vaccinated, and we’re guessing this was most likely the Delta variant. So my son’s fine, just about recovered, and I talked to my sister this morning who flew in to Texas to meet me and she said she had a great time. And I told her I would invite her again the next time I got to “go on vacation”!
Arggghhhh!!!!
And I’m still sleeping.
P.S. I know many of you would kill to be well enough to even consider traveling - I know I’m extremely fortunate. Fwiw, my trip schedule had crash days built into it - e.g., the day after I flew I would be in bed, then up for a day and then down again, etc. So I was hoping to have 3 good days out of 8 . . .
* * * * * * * * * * * * * * * * * * * * * * * * * * * * *
Photos from my vacation! This is Emma and Iggy. I think you can tell who is who
Emma is a rescue and supposed to be the sweetest dog in the world, who I was going to be pet sitting. And extremely lifelike Iggy (who is not in fact alive) was a wedding gift for my son and his wife from my family -
I love the picture! Wish I was there!
Which meant 8 large pill dispensers, making sure I had enough pills on hand, had to order a couple of dispensers. Packing clothes is the easy part. But my pills . . . day pills, night pills, middle of the night pills so I can sleep ....But I got it all arranged. And going to the airport is a nightmare too - I live 2 hours from LAX (on a good traffic day). The airport shuttle had only recently started running and they weren’t even sure they’d be able to get me home on a return shuttle - not enough seats booked. Which left me with the prospect of driving to LAX at 4:00 a.m. to arrive by 6:30 a..m. for an 8:35 a.m. flight - almost as bad as the pills! But I was determined. Okay, got that all planned and sorted.
So I started sorting the pills a couple of days ahead of time, only a new wrinkle pops up - I stop sleeping. Out Of The Blue. Well, actually I sleep very lightly from 9:30 or so until 11:00 p.m. at which point I pop wide awake, and am wide awake the rest of the night until 5:00 a.m. This is insomnia on a scale I haven’t experienced before. I would say it was a nightmare but I didn’t sleep enough to have nightmares.
I wasn’t stressed, I’d really been looking forward to my trip. I began wracking my brain for anything new I might be doing or taking. All my usual stuff didn’t make a dent, including Unisom, my heavy hitter which almost always works when I’m desperate. That whole time is a blur now but it began to occur to me that I wouldn’t be able to go to Texas if I wasn’t sleeping. Then the night before - rather, the morning I’m supposed to get up at 3:00 a.m. so I can leave by 4:00 a.m. for LAX, I’m still wide awake at 2:00 a.m. and finally conceding defeat. I can’t drive to LAX on almost no sleep, and even if I could, I can’t go to Texas like this. I would be a spectral wraith haunting the halls, scaring everyone, blurry-eyed like something out of The Night of the Living Dead!
At 5:00 a.m. (Still wide awake!) I text my son what’s going on, that I’m not flying that day. But that it’s sudden onset, so I hope to resolve it quickly. He was very kind. They’re used to ME/CFS. I tell him I have a few ideas of what may be going on and he’s able to re-schedule my flight out for a few days later - okay, I’ll miss almost half a week, but will still be there for the week-end. Only that doesn’t happen either. The sleepless nightmare goes on.
At first I thought the problem was I’d run out of NAC (it was unavailable a few weeks ago) and I learned that cysteine is needed to make taurine, and I had learned several years ago in the middle of another sleepless nightmare involving MSG that taurine is needed to help with neuro-excitotoxicity (which did resolve my extreme MSG sensitivity). So confidently I ramp up my taurine, sure I’ve got it and - nothing. Just as bad as ever. Then I think it’s the B6 - in filling my dispensers I inadvertently doubled my B6 dose, and B6 can cause insomnia. I have to go through everything trying to pull out the B6 which looks just like my B1. But nope, that didn’t do it either.
Now my son’s talking about me coming out after the 4th, I’ll see him and my daughter-in-law for a few days, and then they’re going on a long-planned trip for a week, and I’ll pet sit their dog (they’ll get a dog walker in, they know I can’t walk it, but the dog needs company and they have a pool I can float in. It sounds nice.)
Meanwhile, my sister who was going to fly out from California and meet me in San Antonio to go see everyone, is having fun with my sister who lives in Pipe Creek (2 hours from Austin), and THEY got to go up to my son and daughter’-in-law’s and have a nice dinner and a lot of fun and spend the night, and I’m home trying desperately not to feel too sorry for myself.
And then I get a glimpse of hope - my bowels have been affected as well. And not in a usual way when something disagrees with me. I won’t go into the details but, well, somehow (I think this is how it happened, I can’t really remember) this led me to look into vitamin C and sleep. And bingo! Too much vitamin C can cause insomnia! I had made some liposomal vitamin C about 6 weeks earlier. I get sick every time I crash, which is at least once a week. My white cell count has been low for over 20 years, and doctors just shrug. Anyways, the homemade liposomal vitamin C was helping with this only apparently I had finally reached bowel tolerance, which I’ve never done before. And it caused Killer Insomnia. There’s not much info out there about this, but I managed to find some. Doing very rough calculations I figured I was getting roughly 500 mg liposomal vitamin C per tablespoon of the solution, and I was taking 2 tablespoons with each meal . . . (it just seemed like a good amount!
) The good news is that apparently DIY liposomal vitamin C actually works!Anyways, I stopped the vitamin C and that night, with the help of everything in my large arsenal, I was finally able to sleep. It was heaven. Only a new wrinkle in Austin - my son who had flown in from Memphis just found out he had Covid! Arggghhhh!!!!!
He’s strong and healthy and was not severely ill, but he tested positive - he had quite mild symptoms. He had had the pfizer vaccine back in March (no, he wasn’t old enough to get it but was on a cancellation list)So we made a mutual decision - I wouldn’t go at all. I didn’t want to test my immune system and they didn’t want me to do that either. No one else there got Covid. My trip officially over before it began. You could say looking on the bright side that the killer insomnia kept me from being exposed to COVID but that doesn’t make me feel any better. Both my sisters were exposed but they’re both fine. Everyone had been vaccinated, and we’re guessing this was most likely the Delta variant. So my son’s fine, just about recovered, and I talked to my sister this morning who flew in to Texas to meet me and she said she had a great time. And I told her I would invite her again the next time I got to “go on vacation”!
Arggghhhh!!!!
And I’m still sleeping.
P.S. I know many of you would kill to be well enough to even consider traveling - I know I’m extremely fortunate. Fwiw, my trip schedule had crash days built into it - e.g., the day after I flew I would be in bed, then up for a day and then down again, etc. So I was hoping to have 3 good days out of 8 . . .
* * * * * * * * * * * * * * * * * * * * * * * * * * * * *
Photos from my vacation! This is Emma and Iggy. I think you can tell who is who
Emma is a rescue and supposed to be the sweetest dog in the world, who I was going to be pet sitting. And extremely lifelike Iggy (who is not in fact alive) was a wedding gift for my son and his wife from my family -
I love the picture! Wish I was there!
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