The Power of Persistence

I haven’t posted here for a while because of my struggle witih all of the problems caused by my Delayed Sleep Phase Disorder — including not being able to find any Sleep Clinics in my area that know how to deal with this problem.

Finally, I did a search for someone, anywhere, who is an expert in cicrcadian rhtythm disorders.  I found one a Harvard and emailed him.  Not only did he respond quickly, but he immediately referred me to his colleague at the Sleep Clinic at Beth Israel Deaconess Hospital in Boston, and also gave me some advice about when I should be taking my medications — which depends on my specific circadian rhythm.

A telehealth visit with the Clinic was quicky scheduled, and, during that appointment, I found out that there are saliva tests I can take that provide data about my specific circadian rhythm.  I was also told to get a test for my iron level, because I might need to go and get an iron infusion. I never knew that iron levels can affect sleep.

I received the test kit in the mail the other day.  The process of gathering up the saliva is complex, and the results need to be immediately frozen and shipped out with an ice pack.  The cost could be as much as $350 because Medicare does not like to cover it, but if I can fix this debilitating disorder it will be worth it.

I might have to go to the Boston hospital at some point, but my daughter said she will drive me.

Meanwhile, I went to my Primary Care to get my blood pressure checked, because the wrist blood pressure machine that I have was giving very high readings.  At one point, the machine told me that my blood pressure was too high to even register.  When the nurse took my blood pressure, it was higher than it should be, but he suggested that I try a few things before I am presdribed any meds.  I admitted that salt is a big thing with me, and I had been binging on bags of Cheetos, which are even saltier that potato chips.  So I am investigating other ways to flavor food, and I have severely curtailed my use of salt.  But the readings I am getting on my home machine are still high. Blood pressure affects sleep, so I have to take this seriously.

I am still tired all of the time, despite sometimes sleeping for 10 hours. I am not a happy camper, but I will follow through with the Clinic’s suggestions and see where I wind up.

Because my daughter is strugglng with A-Fib and asthma, I limit my excursions out into the pandemicked world to avoid bringing anything home. When I do go out, masked and careful, it’s to run errands, and I come home exhaused.  Mental?  Physical?  All of the above.

“to sleep, perchance to dream”

Yes, that’s from Shakespeare.

Boy, am I doing a lot of sleeping and dreaming. As a matter of fact, my dreams are a hell of a lot more engaging than my life these days. It gets so I don’t want to get out of bed, because if I stay there and fall back to sleep, I will have more adventurous dreams that are more interesting than any of my daily doings.

My dream world has very specific landscapes that include a section that is some odd representation of the campus where I went to college; a distorted version of the part of the city where I worked for 20 years; a kind of Catskill Mountain vacation hotel where I once attended ballroom dance weekends; and a weird version of an apartment complex where I used to live. I am always trying to get somewhere among those places, but it’s usually a matter of “you can’t there from here”. On those excursions, however, I might meet up with friends, go dancing, play with cats, and come up with a good first line for a poem. But then I wake up, and it’s all gone where dreams go.

No matter how hard I try I can’t reclaim a normal sleep schedule. I often don’t fall asleep until early morning hours, and then I sleep until afternoon. My sleep got messed up more than a decade ago when I was taking care of my demented mother. A search of this blog for “caregiving” or “dementia” will unearth full details.

I have tried to get control of my insomnia (search “insomnia” if you are curious). Medical Marijuana worksto get me to fall asleep, but it is awfully expensive because it takes a double dose to have any effect on me.

There actually have been more than a couple of times when I didn’t get out of bed for more than 24 hours. To be honest, I there are times that I would just as soon not wake up. I kind of identify with a 1999 episode of Ally McBeal, in which “Ally’s favorite teacher from high school is dying, but she has a wonderful dream life which she would like to remain in. Ally decides to get a court order to force the hospital to put her into a coma.”

In my dreams, I have relationships, friends, hugs, interactions, adventures — kind of the opposite of life with Covid-19. (I do live with family, but that’s not the same as hanging out with peers.)

On the Late Show last night, Bill Gates suggested that it might be close to a couple of years before we can settle into some kind of normalcy. How are we all going to keep from going off the deep end before then? Will I even live long enough to see a “new normal.”

In the meanwhile, lacking motivation, energy, and inspiration, I continue to avoid my pile of half-done creative projects that are wasting away in the corner where I piled them months ago. And, also in the meanwhile, I have tracked down a former therapist and have started, again, trying to find my muse, looking for some fuse that will propel me out of this mindless funk.

Shifting Blog Gears

This box marks the end and the beginning. What follows below this post is who I was. What precedes it is who I am and will be. With the Covid-19 Pandemic, with my achieving octoganarianism, came a sea-change, and this blog will reflect my life yet to be lived, as I persist.

09/18/2020, 7:45 PM

I never worried about getting old. I figured that I would deal with it when it happened. Well, it happened, and I’m not dealing with it very well these days. Objects seem to fly out of my grasp. I’m constantly misplacing things. If I get down, I can’t get up without help. I trip when there’s nothing there to trip on. The technology that I used to use without a second thought now requires too much figuring out. It doesn’t help that, back in March, I accidentally sent my removable partial denture down the garbage disposal, making it unusable, and it’s taking forever to get a new one. I lose track of my finances and find myself owing more than I thought. My crazy sleep pattern doesn’t help, of course.

It wouldn’t have helped if I had worried about getting old before it happened. There’s no way to have known what it was going to mean for me. Everyone is different. My mother lived until she was 94, but her last 10 years were lost in dementia.

I wonder who those old people are who go out dancing, marathon running, paddling canoes. Of course, I’m assuming the Pandemic has put the kibosh on all of that now — unless they are the deniers. Good luck to them, I say.

I finally let my hair go gray more than a decade ago, and I was very happy with it. Only now, my hair is thinning. Not so happy, now.

The other day I took a magnifying mirror outside so I could see my eyebrows, which are also thinning – except for the long wiry white ones, which I plucked out. I suppose I could get one of those eyebrow stencils, that so many of the folks on tv seems to be using, but I think they look horrible. Not many choices here for me.

Over on Ronni Bennett’s blog, she has been chronicling what it’s like to get older. Exactly my age, she is now chronicling how she is dealing with the pancreatic cancer that is literally killing her. She is heroic in dealing with her situation. I wonder how I would handle it.

Don’t get me wrong. I am grateful that I can still drive, blog, see the tv, chat on the phone with the one close friend I’ve been able to make in the ten years since I’ve moved here (more on that another time). Grateful for the support of my family, especially during this time of quarantine.

The one thing I certainly never expected to happen when I got old is the Great Orange Turd, who has made all of our lives a nightmare. And I just heard that Ruth Bader Ginsberg has died. Fuck it all.

Dear Diary: I’m Adrift in Chaos

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All around me. All around my insides as well as my outsides.

I am used to being able to have some control over my life of 80 yeas. I get it that Covid 19 is in the driver’s seat right now. One of my “talents” has always been that I am able to find some pieces of myself to hang onto even in the midst of various forms of chaos; but I can’t seem to find any of those pieces.

As grateful as I am for the support and protection of my family, that all comes at a cost. And the cost is my sense of self at a time when very little is making sense at all. My reality has succumbed to the total chaos that rages all around me.

I am bummed that I don’t seem to be able to handle any of it. Mindfulness? Meditation? Forget it. Chaos rules my mind. I just want to sleep until I can wake to a better reality. And so I sleep. A lot.

I used to be able to gird my loins and launch myself into some creative craft project that would, at least, surround me with a brain buffer. I used to be able to take that chaos and re-purpose it into pretty decent poetry.

Is it so terribly hard now because I am old? Because I have used up my finite resources? I feel totally depleted. I don’t know who I am or why I am.

My late-diagnosed adult autistic son writes about trying to understand who he is in the context of his undiagnosed, fragmented journey.

My late once-husband, who tended to be single-minded, once told me that he wonders what is at my “core”; he saw me like an onion. The layers get pealed back and there’s nothing at the core. And this is how I saw him.

.House cactus.
You stand firm and fundamental
in your solitary nesting place
apart from your leafing, budding sill-mates.
You remind me of someone I know

So, I am an onion. Each layer is a period of my life that I created and lived and survived. My layers are what I am. Does that mean I have nothing at the core? Nothing solid, impermeable? Does it matter?

Maybe it does, if I find myself adrift in a chaos that is being absorbed by whatever is left of who I am. Do I even have another layer in me, or is that all there is?

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