Usually, Bonnie crashes at about 11 at night and won’t wake up short of being shaken awake until early morning. This has become normal, and for a few nights, I just didn’t bother to wake her for her late-night snack.
Last night, she woke up.
When late-night snack time came around, she was climbing up my leg to get to her snack. When she barked me awake at about four in the morning, I staggered up and gave her her snack. She was wide awake and downright perky. I wish I could say the same.
When she woke me again at about six by not merely barking at the bedroom door, but jumping up on it and trying to unhinge it, I staggered up — again — and passed along some very small goodies because they are getting a bit beefy again.
When at around seven, she apparently felt we’d had more than enough sleep, I poked Garry and said: “Do something. Otherwise, I may strangle Bonnie.”
He got up. I don’t know what he did, but she’s still wide awake and peppy. Well, not at the moment. It’s just after dinner which is crash time for all three of them. They have no interest in us until they think it might be snack-time again.
It’s really nice to know that all that sleep has really perked up little Bonnie. Garry and I are dragging around like unwashed bags of laundry and she is dashing around the house. Maybe I should get up every couple of hours, shake her awake and bark in her ear?
I really wanted to somehow fit this into one of the many prompts going around, but nothing fit. Sorry.
Twice during the past two weeks, medication on which I depend — and could afford — have been discontinued. The loss of Demerol wasn’t a big surprise. It’s an old medication and not many people use it anymore. It was one of the few opioid-type medications I could take. Anything based on morphine makes me sick. Some of them make me VERY sick and cause hallucinations. Once, Dilaudid stopped my breathing and they had to come in and get me breathing again.
But Demerol is not morphine-based, so I could use it.
It didn’t work terribly well. To be fair, it was weak compared to other opioid medications, but my body tolerated it and wasn’t addicted to it. It has been increasingly difficult to get for a while. There was only one company producing it and sometime over the past few months, they just stopped distributing it anywhere. No pharmacy has any. Not even the hospital.
Then, today, the pharmacy called to tell me that Adderall was no longer available, either. That surprised me. A lot of people depend on it for a bunch of different reasons. Children with ADD. Adults with narcolepsy or exhaustion due to constant time changes at work and those with uncontrollable apnea.
And people like me who can’t drive without medication because I suffer from intense road hypnosis. It’s uncontrollable. I can’t tell you how many times I’ve had to pull off the road and sleep only to be awakened by a policeman telling me to move on. Mind you, that’s what I’m legally required to do if I’m unable to drive. It says so in your “learning to drive” manual … but the police don’t seem to get it.
In any case, pulling off the road is not always a viable alternative. I’ve had at least one serious accident because I went unconscious at the wheel. Lucky me, I live here and there wasn’t any traffic so I’m alive to tell the tale. I don’t even know when I went unconscious. Apparently. the car continued to roll forward for some miles before I veered into a tree. Messed up the car. I was afraid to tell the cops what happened because they would have pulled my license on the spot. Narcoleptics — not surprisingly — are prohibited from driving. But I was still working at that point and if I couldn’t drive, I would be in big trouble.
That’s when my doctors started giving me “keep awake” medicine. First, it was something called Provigil, then Nuvigil. Both drove my blood pressure sky high and I’m not sure those two medications didn’t have something to do with my later problems with my heart. Without Adderall, which is relatively benign, those are the only two drugs left … and taking either one of them would kill me. Which means — I can’t drive. At all. While I don’t drive often, I like to know I can if I must. It’s not like I can grab a taxi. There are no taxis here. No buses. No trains. No nothing.
I spent the entire day trying to find some kind of herbal thing that would help. To some degree, Gingko Biloba and Ginseng can help a little, but they don’t help everyone and aren’t dependable. I ordered some Gingko and the theory that it can’t hurt and maybe it will help.
If you are an herbalist and have suggestions, please be in touch! I can use all the help I can get.
I think I’ve found a medication that deals with the pain. At least it did last night and it did it so well, I have to admit it is a major improvement over the Demerol I was taking.
Nothing is going to keep me awake. Once I start to go under, I can open the windows and have the snow and ice coming in. I can literally hit myself in the head repeatedly. It won’t help. I will still become unconscious very quickly. I’m also both a sleep talker and a sleepwalker. It’s all related.
I will also fall asleep multiple times during the day and not even know I’ve been asleep until I realize the show on TV is different. Or the people I was with have gone home. Once I collapsed and fell asleep on the stairs (Cataplexy). I just folded up and was gone.
Why are these medication disappearing?
Because they are cheap. The companies who make it aren’t making a big enough profit. I’m betting these medications will eventually show up again but with new names and a far higher price tag.
After Garry and I left our car with the valet at UMass Memorial, I looked at Garry and commented: “I should have just gone to an eye doctor.”
Considering all the testing and checkups, you’d think I’d have a diagnosis. Nope. I know just what I knew when this round of medical visits began. This was one of the times when two things happened at the same time. I wrongly assumed the two events were connected.
It’s a natural reaction. I had my little seizure, or what seemed like one and my vision went all funky at the same time. One plus one is expected to equal two, except when it remains one and one and they don’t add up.
Seizures? Not exactly.
I have narcolepsy. It’s one of the many reasons I don’t want to drive. One time, a few years ago I fell asleep while driving. The next thing I knew, I had an incident with a tree. I don’t know how far I drove (asleep) before I hit the oak. I also knocked off my rearview mirror somewhere en route to the big tree and no one ever found it.
It’s possible I drove for a mile or two (there was no traffic) before I drifted to the side of the road and conjoined with nature.
It turns out that narcolepsy can produce those weird sort of seizures I had and one of the ways you can tell it was not a real seizure is that it leaves nothing behind. You aren’t groggy or muddle-brained. It’s literally as if nothing happened. I remember once in the middle of a home barbecue, I collapsed in the hallway. On further checking, I had fallen asleep and just fell in a heap on the stairwell. Everyone thought it was funny. I didn’t think it was all that funny, but I didn’t know I had narcolepsy.
It can be a difficult problem to diagnose. My shrink finally nailed it.
Ever since I hit that tree, I’ve been wary of driving. It’s why I always have a stash of amphetamines with me. It’s no big deal if I fall asleep at home — as long as I don’t hit my head or face on something on my way down. Which I have also done. In that case, I was walking, said I felt funny, but apparently kept walking (but not awake) into a door frame. That time I also woke up screaming but with good reason. I split my face open. It required some interesting stitching of nose and lips … and a missed interview for a job I wanted.
I also was a serious sleepwalker for many years. I don’t think I still sleepwalk because it’s too hard to get out of bed … but when things go really missing and I eventually find them in some strange place, I suspect I did it while asleep. My granddaughter also sleepwalks. Is it genetic?
It never crossed my mind that all of these events were part of the things narcolepsy does, but that’s what they’re telling me.
The narcolepsy is not new. I have spent many hours sleeping in my car by the side of the road because I knew I was going under, only to be woken up by the cops telling me it’s illegal to sleep by the side of the road.
I would point out that this is exactly what they tell you to do if you feel you cannot continue to drive. It’s in all the books on safe driving. Nonetheless, they immediately tell me I have to move along. Have they missed the part where I say I was too tired to keep driving and had to stop or I was going to have an accident?
Stupid is as stupid does.
So that’s the story of the seizures. They aren’t seizures. They are my narcolepsy acting up, usually on a day when I not taken amphetamines. They don’t make the problem go away, but for at least four or five hours, they keep me reasonably alert.
Finally, the strangest part of narcolepsy is that you may have symptoms of its approach (intense sleepiness), or you may be hit by waves of dizziness. Or a sudden upset stomach. Or you are fine and fall over. Asleep.
It’s not a disease, though it is a condition and while the amphetamines help for short periods when I absolutely must be awake, it doesn’t cure anything.
Nothing cures it probably because they aren’t entirely sure what causes it. They have theories, most of which seem to involve sleep apnea except I don’t have sleep apnea. I do have exactly the right kind of insomnia, though. The kind where I fall asleep directly into a dream, then wake up every two hours until finally, a nightmare makes me decide sleeping isn’t a good idea and anyway, the dogs are barking.
What about my eyes?
It’s probably (drumroll) … cataracts. My right eye is relatively clear, but my left eye is cloudy.
I’m 72. Garry was treated for cataracts when he was barely 60 and my father had cataracts years before me. Actually, everyone gets cataracts sooner or later. Dogs, cats, and horses, too. I’m just a bit late, but by age 75, everyone either has cataracts or has had the surgery. It is THE most widely performed surgery in the world. They expect to perform around 30 million cataract surgeries next year. That’s a lot of surgeries.
You get old? You get cataracts. You can also get cataracts without getting old. Some babies are born with them.
There are no eyedrops of any other form of correction for cataracts other than surgery. You get them repaired or you don’t. If you don’t, eventually you can’t see.
So my next doctor is the ophthalmologist. It would appear that I may not need new glasses. I may need new eyes. Which sounds like a good idea. Garry and Tom both have had the surgery and they LOVE their new eyes. Finally — NO glasses.
Wrapping Up: Coincidence is not a sign from the Universe
Just because two things happen at the same time doesn’t mean they have anything to do with each other. We all read too many mystery novels where everything is a clue. This is particularly important when you are dealing with physical symptoms. Simultaneous doesn’t mean causative.
And this is also what’s wrong with having so many specialists who only look at your wrists or fingers or hips, but not your spine, brain, or eyes. I think most of us need someone who will look at all the stuff going on who can then tweeze the pieces apart and figure out what is really wrong.
You think you are safe. secure. In your warm an cozy bed for the night. When you left to go to bed, the dogs were snoring — a good sign. I slide quickly into sleep and don’t wake up until my shoulder falls out of the socket.
I go to the bathroom, find the lidocaine pain patches, remember (this time) to tie my hair back so I don’t glue my hair to my shoulder — which isn’t good for either my hair or my shoulder.
I brush my teeth on the theory that the brush is here, my teeth are here, so why not? I’m 9-months overdue for my six-month checkup, so brushing is a good idea any time of the day or night.
Back at the bed, I rearrange the pillows, raise the bed a bit up top, lower it on the bottom, realize I have to sleep on my back and crawl in so I have my right arm lying on the pillow. Some readjustments are required to get the angle right. I’m just hoping the lidocaine patch kicks in.
I drift off to sleep when suddenly … IT’S DUKE, BONNIE, AND GIBBS. They have pushed in the door All three of them have broken into the bedroom and Duke (the only one with long legs) has leapt onto the bed and is joyously bounding around, licking Garry’s face.
He’s so happy to see us. It’s a reunion! I mean, we’ve been gone for hours and light is peaking over the horizon.
“Get up, get up, the day has begun.” Translation: “BARK, BARK, BARK … BARK, BARK, BARK … ”
Don’t think Bonnie and Gibbs aren’t being helpful. They can’t jump on the bed, but they can bark and Bonnie enjoys barking. It’s her hobby. Her metier, so to speak.
Garry garbles “WHAT THE F##$!” which only gets the Duke even more excited.
“Well,” I comment, “This is a new one.” Until this moment, I was sure the doors would hold. Garry grumbles, using language that would make a sailor blush but which doesn’t bother the dogs at all. He shoos the dogs out of the bedroom and takes them to the kitchen where he does the thing that helps. He feeds them.
Diet? You’re kidding, right?
He stumbles back to bed just as I have finally found a position on the pillow that doesn’t hurt nearly as much and probably the lidocaine patch is beginning to do its job. Garry is instantly back in dreamland, his soft snoring witness to it. He can’t hear a thing because all his hearing machinery is stashed for the night.
I can hear. He has silence. I have barking dogs.
“Bark, bark, bark.” That’s Bonnie. I know who it is because they have different voices.
Bonnie has the deepest bark. She’s a solid bass. Small, with considerable power. Gibbs is more of a deep tenor or maybe a light baritone. But The Duke is a high soprano. When he barks, glasses break. Your brain begins a rhythmic vibrato inside your skull.
She stops barking. I listen for a while. When I don’t hear her, I figure (hope, really) that she has decided it’s nap time. I drift back to sleep.
“BARK, BARK, BARK.”
That’s got to be Gibbs. He isn’t the deepest barker, but he is definitely the loudest. He also has a little howl he adds at the end of his barking. It’s sort of his verbal signature.
The Duke, inspired by this, adds a few trilling barks of his own.
Then they are quiet. Again. I don’t trust them, but I am so tired. I fall asleep.
BARK BARK BARK BARK HOWL BARK BARK BARK and the sound of paws and the loud clicking of doggy toenails on the fake wood floor in the hall.
I wake. I listen. I wonder if there’s any point in taking something to help me sleep. Because even if I take something, I can still hear the dogs. I throw an evil glance at Garry who can’t hear anything. He is happy in his silent place.
Finally, I get up, give them another biscuit and explain, in my most dulcet tones, that if they begin to bark again, I will get up and kill them. They grin with joy and dance around me in a circle. Okay, one more treat.
They are so glad I’m up.
I wonder if there’s any point in trying to sleep. My back hurts. My arm is throbbing — and I’m exhausted. I used to be able to stay up late and sleep quickly, but I’m too old for long days with short nights.
I need to get a full night’s sleep.
I go back to bed and drift restlessly for some hours. Eventually, they recommence their barking. Now it’s full daylight. We are SUPPOSED TO BE AWAKE. It’s our job. I wake Garry because he doesn’t get to sleep in while I suffer.
We got up, this time for the day.
After they get their next treat (how many? I have lost count and they don’t count), they sigh with pleasure and go soundly to sleep on the sofa.
My son recently got a very cool new ‘toy’ for his house. A “Sleep Number Bed.”
He raved about it and had us test it when we went to visit. Tom was instantly smitten. And why not?
It has two separate remote controls for each of us AND it connects to the internet via an app on our cell phones! What more could a man want from his bed? Maybe a cup of coffee delivered the moment he opens his eyes. But that technology is a few years away!
This bed is super complex. There are all sorts of pipes and God knows what else under there. There is even a light that turns on automatically when you get out of bed so you can see your way back and forth from the bathroom.
The set up was amazing to watch. Layer after layer went onto the base, including he mattress itself and the elements that fill with air to give support under the mattress.
The best part of this bed for me are the two remote controls. One is just for temperature settings but the other is a computer for bed comfort. You can raise and lower the foot of the bed and each side of the head of the bed, separately. I can be down in sleep position while Tom is way up in reading position. Instead of straining your neck on multiple pillows to watch TV or read, you just raise your head.
There’s a setting for watching TV with both the foot end and the head up that is so comfortable!! You feel cradled by your bed.
You can also set the softness of the mattress and the level of ‘support’ you want. The air-filled compartments under the mattress give your back more or less support. So you have to find the best combination for you of mattress softness and air compartment support.
The remote and the phone App then chart your sleep and tell you how well you slept on those particular mattress settings. It charts periods of deep sleep, restless periods and the number of times you got up.
It also lets you know how effectively your body was supported and whether there were unwanted ‘pressure points’ on your body. The goal is to get rid of the pressure points and have your whole body maximally supported. When you first get the bed, you have to keep adjusting the mattress until you find your optimal settings for the best night’s sleep.
Another plus for this bed is that the mattress won’t begin to sag like our Temperpedic did. We loved our Temperpedic, but after a few years, Tom’s hips were in a ditch! With the new bed, you can control the air in the unit so you never lose your level of back support. The bed comes with a twenty-year warranty versus a five-year warranty for our last bed.
There’s an optional feature that you can buy that controls the temperature of your side of the mattress. You can either cool or heat your side of the bed, which is great because Tom is always hot and I’m always cold.
Tom says he had never stayed comfortable all night before he could cool his side of the bed. He used to wake up several times a night overheating. Now he only wakes up several times a night to pee – something this bed does not have a setting to control!
At first, the dogs seemed confused when the bed started moving and making noise. They would raise their heads and look quizzical. They didn’t jump off and run away. They just realized that something weird was going on. After a few days, they got the hang of it. Now they don’t move a muscle even when their butt is raised up above their head or half of their body is up and the other half down.
Dogs adjusting to the new bed
Dogs getting comfortable
So this new bed is going to be a fun toy for a while until it becomes routine and we don’t have to make adjustments every day. In the meantime, we eagerly await our morning sleep scores for the previous night so we can adjust our settings for the next night. We may never get tired of raising and lowering ourselves by remote control.
I certainly hope that we will actually sleep better. I keep forgetting that the bed is not meant to be entertainment, but a sleep enhancer. But for now, it’s a bit of both.
I think I got maybe two hours of sleep last night. I have a few annoying ailments and three dogs who usually bark only at delivery people, my son, and any other dog.
Our neighbors have a couple of big dogs. In the past, they had a matched pair of mastiffs, but time marched on. Now they have a couple of boxers.
When The Duke barks an alarm like that in the middle of the night, I have to get up and see what — if anything — is happening. I’m pretty sure the neighbors aren’t walking their dogs. I doubt anyone is delivering. Not even Amazon.
I get up, limp to the living room. It turns out, they want a cookie. And some play time. They get the cookie, but I’m not feeling playful. I just want some sleep. Having been awakened, usually after just falling asleep, I go to the bathroom, brush my teeth again, and climb into my cozy bed.
That’s when I notice I itch. My undiagnosed eczema — or is it dermatitis? No one knows. It’s a wildly itchy rash with no known cause and I’ve been getting it off and on since I was in my twenties. You’d think, after 50 years of itching, I’d have a handle on it.
I don’t. I can deal with pain better than itching. I have chemical goop, over the counter chemical goop, natural goop, aloe growing in its own pot. Powder with something anti-itch in it. Everything works sometimes, nothing works all the time. During the day, I get involved in other things and it doesn’t bother me as much, but at night? Trying to snooze into dreamland? Hah.
And then there’s my back which only lets me sleep on it. I am, by nature, a right-side sleeper, but I can’t sleep on my side anymore. When I get a rotating combination of pain and itching … and the dogs bark too? A whole night passes and the big snooze eludes me.
I think I get most of my sleep during the day when I’m trying to clear out my email. Yesterday, I got almost 300 emails. One hundred and twenty-seven of them showed up in a batch and the rest kept dribbling in until finally, I deleted anything that wasn’t marked “payment due” and was more than 24 hours old.
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