Thoughts from my journal...

Sunday 2/01/2026 = 4

It snowed. Probably 6" - 7." 

I would like to go out in it.

But the experience is not worth the price. 

So, I remember...

Sledding and snow skiing. Snow forts, snowmen. Snowballs, that I would sometimes freeze in the refrigerator freezer. Collecting freshly falling snow to make snow cream. Lying down and making snow angels.

I long for days of clarity. 

From my observation, the state of my fatigue determines the state of my clarity.

What determines the state of my fatigue?

Many factors, I think...

• Sleep quality
• Pain level
• Lacking purpose beyond selfcare
• Feeling anxiety, uncertainty, unprepared

Will I ever feel or be prepared?

Yet am not I preparing by writing out these thoughts?

This is my journal. 

I am free here.

~*~

Monday 2/02/2026 = 14 = 5

I long to be pain free. 

There are times I don't feel pain...

    Well, actually the only times I don't feel pain is when I sleep.

    And that is an improvement. I seldom feel and get woken up by my pain. *knockonwood to the good 

    fairies*

Are fairies real?

How about the Velveteen Rabbit? 

It became real.

Settle Carol.

Others seldom think of you. And when and if they do, you don't know what they are thinking. You can speculate and make educated guesses.

But why? Why put my energy into that?

I don't want to put my energy there. 

But too often, that is what creeps in and sometimes screams...

And I don't hear praise and goodness.

Instead, I hear criticism, harsh judgment, false accusations, and the derogatory labels that go with them.

Other have lived that too and in far, far worse, worse situations.

I still have my family, a few good friends, a few good acquaintances, and my ever-faithful love -- Nature.

I hope to again be able to commune with Her on Her turf. 

Love strokes...

Bedtime: Monday, 1/12/2026 = 5

How do you feel, my love?

Disturbed, by what is happening in the country, in the world. 

Authoritarianism -- "We're always right (and righteous); and if you disagree with us, you are a traitor." "Our motives are good; yours are evil." "We have the truth; you are brainwashed." 

Thing is, if someone accused me of such, I would probably cower. 

But I wouldn't have to. 

Nor would I have to attack.

I can take the statements apart with neutrality...

Thus began my journaling with ink and paper last night. Strokes across lined pages -- shorthand, cursive, italic. Black ink on white paper. 

The cardboard cover is black, dappled with white spots, and bound with a black-tape binding. "Composition Book" is printed on the front cover. Printed on the inside of the front cardboard cover is a nine-lined, Monday-through-Friday grid. The title printed above the grid states, "CLASS SCHEDULE" 

Printed across each 9.75x7.6-inch page are 25 horizontal blue lines on which to write and a vertical red line down the left side of each page delineating a margin. There are 100 sheets of paper in the journal, totaling 200 pages. I number each page. Next page up? Number 100, a century of days. Haha. I began this particular journal on 10/27/25. 

Printed on the back inside cardboard cover are a variety of small grids that contain a variety of conversion tables. And a multiplication table; I hadn't seen one of those in a while. Printed at the top, "USEFUL INFORMATION." 

On Christmas Day, 2025, my nineteen-month-old granddaughter came knocking on my closed bedroom door calling, "Meemaw. Meemaw." Hubby, who was with Granddaughter on her side of the door, opened the door to let her in with him following. He plopped her up on the king-size mattress and spotted her as she roamed around like a little lion cub, curious and delighted. I set aside my cushioned lap-desk and pen and journal. We then played kisses and peek-a-boo, and we giggled. 

She picks up my ballpoint pen.

I instruct her, "That is Meemaw's pen. It is a tool; it's not a toy." 

She looks at me like she is saying, "Okay. I know what a tool is." 

Son has been remodeling their home for sixish months and is still in process. Granddaughter has heard him say "tool" often, explaining that they aren't play toys. 

But it has a button! How exciting!! She pushes it and the ballpoint comes out. I say, "On." Another push and the ballpoint retreats. I say, "Off." We play this a dozen times as she watches the pen pop out and pop in. 

I show Granddaughter my journal, "This is Meemaw's journal where I write my thoughts." 

She seems curious. I show her how I use the pen to draw and write. I draw a picture of her and print her name under the picture. Then I hand her the journal.

With focus, she turns the pages. Pausing, perusing, like she is studying them. Using the pen, she draws scribblies across some of the pages over my writing. I am fine with that, actually happy. We have journaled together.

Art...

From little hands...

Love strokes...

Everydayness...

I have shared a plethora of blog posts about the evolving/devolving navigation of life with polyradiculitis...

But even in that plethora, there is much that is not shared...

I have shared few posts about the insomnia...

However, I wrote a series on my poetry blog during the time of the chronic insomnia...

An insomnia which led to sleep deprivation...

And now it is time for the following to come forward...

I no longer want to hide...

So, I am putting this out into the field...

I am thankful for my husband and children and granddaughter, my few close friends, my trusted medical and wellness team, and Earth's wildlife and non-human creatures who have continually come to my aide through the decades...

~*~

12/08/2025

Yesterday I asked myself, "Carol, what are your triggers?"

And I answered, "What do you mean 'triggers?' "

"Circumstances, internal and/or external, which prompt a response of vigilance, on-guardness, protectionism, avoidance, self-judgement, and fill-in-the blank."

If left unchecked, these can then manifest in biological symptoms such as pain, depression, anxiety, suicidal ideation, and blank-in-the-feel.

Then an insightful answer appeared.

"Each day as I open my eyes to greet the day, I am triggered. Wow..."

Why?

Because I don't know from day-to-day where I will land on the symptom-severity scale. 

And the factor that I navigate mostly alone can multiply the feelings of aloneness. I am physically alone most of the time as I daily navigate (on a continuum) fatigue, brain-stupor, physical weakness and pain and more, and the mundane tasks of being my own caregiver.

Waking up for the day triggers me.

Who will I be today? 

What will I have to navigate?  

This is hard to admit, but it's true. 

But again, "Why does greeting each day trigger me?"

It's the unknown factor, the uncertainty, of whether or not and how much I can trust my own body and brain to function on any given day...

And you know what?

Every human lives in the unknown.

None of us know what will meet us on any given day.

Yes, we have expectations and routines and goals and tasks.

But still, the next 24 hours is unknown.

The next second is unknown, at least while living here in this earthly plane. 

Dad didn't wake up one morning and have the goal of becoming a quadriplegic that afternoon.

I didn't wake up over 14 years ago with the goal of losing normal function in all my limbs and extremities.

I didn't go backpacking in my beloved Roan Mountains 15+ years ago with the goal of my ex-mental health therapist trying to assassinate my character with outright lies in at least a dozen public articles/posts.

And the list goes on...

For each of us...

But Carol, you don't have a job or work outside your self-care. 

This too is true and has been hard to accept and embrace.

And yet I know I'm not alone in navigating (have I used that word enough?) this kind of life.

I have found comfort in others' stories who live with disability and are so very limited to partake in the physical tasks of living.

Such as cooking, cleaning, errand-running, yard work, decorating one's home during the holidays, shopping, walking the dog, helping others with physical and other needs, sending cards, and so forth.

But I do have routines in my self-care, and I do have purpose as long as I can continue to accept and embrace that this is my job. 

And it is a hard job.

It's not one I would have chosen, but it is the one that has fallen to me.

So, in that sense, I'm just like able-bodied folks that have jobs or work of serving others.

I continually tell my self that my self-care is serving others...

And this too, is true...

~*~

Three days later, on 12/11/2025... 

I turn the knob of the tub faucet so water flows...

Water is a big part of the couple exit-life plans I've come up with...

Water will finish the deed so that no breath is left...

I turn the knob with feelings of utter worthlessness, shame, no value...

Of no light at the end of this dark, endless tunnel...

Feeling so alone and that I am only a burden to my family and beyond...

The pills, over 40 per day...

Just one unrelenting circumstance that I navigate...

But it won't take 40 for this deed...

I turn the knob of the tub faucet so water flows...

And a thought clearly emerges...

If Hawk is here, I'll not do it...

I turn off the knob and the flow ceases...

I walk to the bathroom window...

I peer into our big backyard...

There, regal and faithful...

Hawk, my companion...

I call Hubby...

~*~

12/16/25: Over 40 pills a day... 

I post this with some hesitancy...

But I'm so tired of hiding...

Perhaps by releasing this, I will receive something of substance...

Perhaps any passersby who suffer similar will feel seen, less alone...

I list the targeted reason for the supplements, but they also provide other systemic benefits.

I have to take multiples of many of the same pill; for example, I take 4 Omega-3s a day. 

Thus, the following listed pills add up to over 40....

It starts when I arise from bed. I swallow Bromelain, an enzyme which must be taken on an empty stomach for its anti-inflammatory effects.

An hour-or-so later after I invert on my inversion table, I swallow an Iron caplet which must be taken away from other mineral supplements. I combine it with Vitamin C with Quercetin to aid the Iron absorption and for inflammation. I swallow SAM-e for pain and depression. 

Then I exercise. 

Thirtyish  minutes later: Digestive enzyme; two Charlottes Web CBD gummies and sublingual liquid extract for inflammation and recovery and nerve health; and Sublingual B-12 for nerve health.

I eat a little, breaking my fast of 16 to 17 hours, and then swallow the first round of mixed pills. 

5 milligrams of Prednisone which I've been on since July 2011 but is reduced from the 1000s of milligrams of injectable steroids that I received throughout each year from 2014 into mid-2022. Omega-3 for inflammation and for my heart to help counter a steroid side-effect. Neuromagnesium for my brain. Methylfolate for my MTHFR gene-mutation. Calcium-magnesium to help counter the steroid side effect of bone loss. Monolaurin to help counter Epstein-Barr. Garlic to help counter the candida side effect of steroids. Vitamin C for inflammation and immunity. 

Part of my breakfast consists of powdered food supplements stirred into Coconut Water with added Tart Cherry juice concentrate. Coconut Water provides potassium to help with my leg cramps; Tart Cherry juice addresses inflammation. I stir into it 6 different powders: one targets osteoarthritis; one provides a Multivitamin, but I drink a kid's version with lower B-6 levels because my body doesn't metabolize B-6 properly; an Electrolyte to help with proper absorption; Curcumin/Turmeric for inflammation; Lion's Mane for nerve health; and Fiber which helps with cholesterol. I add another powder to my morning cereal; it targets blood sugar levels to help counter the diabetes side-effect of steroids. I also swallow MCT oil for brain and inflammation; and liquid CoQ10 for heart, brain, and fatigue.

Mid-afternoon, I swallow NAC and the mineral supplement of Strontium. Strontium needs to be taken away from other minerals; it helps counter the steroid side-effect of bone loss. NAC helps the body and the liver with detox; I used to take it at bedtime until after the chronic insomnia onset in April 2022.

Before my evening meal, I swallow another digestive enzyme. After eating I swallow the next round of mixed pills. 

Omega-3 for inflammation and for my heart to help counter the steroid side-effects. Neuromagnesium for my brain. Methylfolate for my MTHFR gene-mutation. Calcium-magnesium to help counter the steroid side-effect of bone loss. Vitamin D3 for my bones. Garlic with Curcumin to help counter the candida side-effect of steroids and to address inflammation. Vitamin C for inflammation and immunity. A Mushroom mix for immunity. Lysine to help counter shingles and herpes simplex virus. Probiotics to help counter the candida side-effect of steroids. 

I can hear the critics now...

And to them I say, "Come live with polyradiculitis and all its repercussions, not to mention the other traumas I've survived. Then your criticism or critique might hold some weight.  I don't like taking all this. But I humbly state that it has paid off in that I am not in a nursing home; my bone density is holding steady; my blood pressure and heart specs are in normal ranges; I don't have diabetes; I seldom get 'sick;' and fill-in-the-blank. Does that mean I will never develop any of those abnormalities? No. But I will do what I am able to help mitigate them, if I can."

Then there is bedtime. 

I begin this routine 1-1/2 hours before I lie down for the night. Two Charlotte's Web gummies and sublingual extract for inflammation; then I laser my brain for sleep. 

Then, I swallow a teaspoon of coconut oil and swallow magnesium supplements for sleep, and I take two THC gummies for sleep; then I again laser my brain for sleep. 

Next, I drink powdered herbs in water -- herbs combined specifically for me by my herbalist -- for inflammation and sleep.  

Then I carry my little, drawstring cloth bag (that my daughter sewed for some project when she was young) upstairs which contains my 2nd-shift sleep herbs, 2nd-shift THC gummy, and two Charlotte's Web Stay Asleep gummies. I arrange the containers on my dresser with a coffee cup half-filled with water and a glass of water each on its own hand-embroidered coaster from a village in China, a gift from a friend who lived in the village for a number of years.

Then I load my dry, no-oil, vape device with cannabis and carry it and my sleep-pharmaceuticals (of which 2 have to be cut in half which I prepare in the morning) downstairs to the living room. 

While I vape, I play Sudoku; fill in my columned chart for the day; maybe draw or color or journal or read; heat some rice socks which I use on my hands and legs and back; and then lie on the couch while using a foam roller on my left thigh. Depending on how and what I feel I might channel surf on the TV landing on a comedy or a show of interest. I also lie in silence as I allow my thoughts to free float. 

During the last 45-to-60 minutes of the 1-1/2-hour routine, I take three different pharmaceuticals, spacing between each one. 50 milligrams of Seroquel, down from the 300 milligrams which began in August 2023. Then, after 15 or so minutes, I swallow .25 milligram of Xanax which I began around July 2023. Then after another 15ish minutes, 5 milligrams of Dayvigo, down from 10 milligrams which I began in July 2023. 

When it's time, I carefully make my way up the 7-step wooden staircase, climb into the king-size bed where hubby is already sleeping, adjust my various kinds of pillows, arrange my body under my multiple blankets, and finally fall asleep to arise sometime later in the dark hours when I drink my 2nd-shift combined-for-me herbs and chew my three 2nd-shift gummies. Usually I can fall back under, but sometimes not. 

Again, I can hear the critics, and I respond...

"We tried probably all the natural means for me to be able to fall under. We tried supplements, homeopathy, various herb combinations, acupuncture, photobiomodulation, unplugging electronics in the bedroom, weighted blanket and then other blankets, turning the air down to 68 degrees F, prayer, affirmations, meditations (which actually saved me through the 14 months of chronic insomnia that ended up in a really bad case of sleep deprivation), mental health counseling, counsel from a sleep neurologist, exercise, and more. And we tried other pharmaceuticals. We finally landed on the combination above. And I do sleep now, but there are side effects to all these drugs. However, the benefits of being able to sleep currently outweigh the risks of the side effects."

And to any critics and judgers I ask, "Have you ever lived with sleep deprivation; and I mean real sleep deprivation? The paranoia, suicidal kind? Of all the traumas I've experienced in my life, sleep deprivation has been the most terrifying."

I state that even compared to the 4-day nightmare with datura stramonium at age 15, except I didn't hallucinate during the 2023 sleep deprivation.

I state that even compared to the chronic and relentless, suffocating-like-one-is-drowning-in-their-own-fluid, asthma attacks that erupted almost every day/night for over 15 years.

Effects of a hallucinogen wear off...

My asthma attacks would typically subside  after two to three hours, giving me a break until the next one growled and pounced...

But wondering if you'll ever be able to again fall under into sleep? 

A different kind of torture...

~*~

So, there you have it... 

A snippet of my daily, self-care, maintenance regimen... 

And that is just my daily pharmaceuticals and herbs and supplements, and part of my sleep routine... 

~*~