A QUINTESSENTIAL NIGHT – Marilyn Armstrong

A quintessential night and I’m too tired to hold my eyes open.

The quintessential night. My back hurt when I got into bed. I hurt slightly less when I turned on my left side but a few hours later the dull, throbbing ache had moved from quintessential to OWWWWW.

Photo: Garry Armstrong

Only one thing helps and that’s moving the bed into an almost sitting position, taking much more aspirin than I should, a couple of tranquilizers (to get the muscles to calm down) and passing out for a couple of hours. I was really counting on NO phone calls and NO visitors. Lucky me. None showed up and Garry, one of the rare moments in our lives, got up before me.

Parked cars

By the time I got up, other than being zonked from an OD of over-the-counter medications, I was not screaming in pain. I wonder how much longer I can go like this?

Quick trip to the grocery. Frozen pizza for dinner. I was in no mood for cooking.

And it’s probably time for a new mattress. It has been 15 years and even a latex foam mattress grows weary.

The problem is, I’m weary. Trying to avoid getting whiny about it, as a life, this sort of sucks. Between the fibromyalgia, arthritis, heart, and a general sense of decrepitude, this is the quintessential stage when all the things that are wrong with me gang up and say “GOTCHA!”

I’m sure by this afternoon, I’ll be in a better place. Or maybe tomorrow. But right now, on a day that is the first cool and comfortable one in weeks, I HURT.

Just saying. And I really need to spend an hour in the grocery store, too. That will probably help. I may not want to do it, but going out and doing something helps. I hate the process, but the results are usually (overall) pretty good.

THE SIMPLICITY OF SLEEP AND WAKEFULNESS

COME SLEEP, O SLEEP …

Come, Sleep! O Sleep, the certain knot of peace,
The baiting-place of wit, the balm of woe,
The poor man’s wealth, the prisoner’s release,
Th’ indifferent judge between the high and low;
With shield of proof shield me from out the press
Of those fierce darts Despair at me doth throw!
O make in me those civil wars to cease!—
I will good tribute pay if thou do so.
Take thou of me smooth pillows, sweetest bed,
A chamber deaf of noise and blind of light,
A rosy garland, and a weary head;
And if these things, as being thine in right,
Move not thy heavy grace, thou shalt in me,
Livelier than elsewhere, Stella’s image see.

Sir Philip Sidney


I remember when going to sleep was simple. I changed into a nightgown or pajamas. I took off my jewelry. Brushed my hair. Brushed my teeth. Washed face and hands.  Plumped up the pillow, pulled up the covers — and went to sleep. Sometimes, I read for a while … and then fell asleep.

Last night, I went to bed. I did the whole nightgown, hair, wash, brush thing. Of course. Then I adjusted our electric bed trying to find the angle which would give me the least amount of pain in my back while keeping me sufficiently upright to continue to breathe.

I then took the various medications I take before bed — some for blood pressure, others for pain, and one for actual sleep. That was when I realized my rash was acting up. Damn. I put some cortisone cream on it, but that didn’t do it. So I went into the bathroom and used the other, stronger gunk. I stood there for a few minutes waiting for the gunk to dry, then went back to bed.

I realized I couldn’t breathe. I used the daily inhaler. Still couldn’t breath. Used the emergency inhaler — twice. Breathing restored, I realized my eyes were dry enough to feel like I had gravel in them. I found the eye-drops.

“Ouch, ouch, ouch, ouch,” I said as the liquid hit the gravel. Garry couldn’t hear me. He had the headphones on and was deep in a western.

I tried another round of eye-drops. “OW!” I yelped. Two rounds of eye-drops later, the gravel had diminished. I realized I needed to do something about my incredibly dry lips. One round of chap-stick. Another round of chap-stick. One more round of chap-stick and by now, I’m wide awake. And my back was killing me.

I found the lidocaine cream. Applied it to my right hip. My left hip. Up and down the spine. Then — again — I waited for the most recent gunk to dry.

By now, a full hour had passed since I put on my nightgown and brushed my teeth. I had been sleepy, but by now, I wasn’t sleepy. Not a bit. I thought wistfully of those long ago days when going to bed was just … going to bed.

Worse, I still had to look forward to the thrill of getting out of bed. Convincing my legs and arms to wake up. Making sure my spine was going to let me stand  up and hopefully, walk.

Eyes – very dry!

The getting up ritual is a whole other thing, starting with around four in the morning when I start readjusting the bed. Because during the night, my spine will congeal into a solid lump of misery. I have to decide what — if any — medication will help. I have to be careful because I can only take a specified amount. If I take meds at four in the morning, I can’t take them later.

You get the idea.

Sometimes, the complexity of going to bed then getting up — first for medication and going back to bed. Next, rearranging the electric bed, trying to go back to sleep, hearing The Duke hit the door, knowing if I don’t get up and give everyone a biscuit he’s going to keep hitting the door until the door breaks or I get up and do the “Good Morning, beloved Dogs” thing.

Nothing is simple. Especially not simplest things.

COZY MORNING

Garry was up early because he has a medical thing today. He wanted the extra time to have coffee, for showering and all that morning stuff. I lolled in bed for an extra hour, mostly because that’s how long it takes me to get my back functioning.

I’ve gotten pretty good at untangling myself. It’s all about positioning, taking the pill I sometimes don’t want to take, but if I take it, the day goes a lot better than if I don’t … and slowly stretching until things are more or less mobile. My back has been in poor shape since I was a teenager. I had my big surgery on it when I was just 19 and time hasn’t been kind to the bones.

Time generally isn’t kind to bones. Arthritis seems to be universal for damaged joints, whether broken by accident or surgically renovated … and often, just “because.”

Mine are a mess both because of surgery — and “just because.” Arthritis is not a special issue at our age. It’s not a matter of “if,” but more like “how bad” and “how much does it affect you.” It wasn’t too bad this morning. I slept on my back and generally, if I make myself sleep on my back, I wake up more mobile than sleeping on my side, which I find a lot more natural. My back doesn’t agree. There’s not much point in arguing with my spine. It always wins.

So we are off. Garry is getting a CATscan of his head to make sure he has all the requisite pieces for a cochlear implant. Then, in another few weeks, the first doctor’s appointment with the cochlear audiologist, then after that, the surgeons. This stuff takes a lot more time than people think it will.

When you have an emergency, everything happens in a hurry, but when you have choices to make, it takes time. And of course, it’s winter, so everything takes more time. Christmas vacations chop December into pieces and the hangovers from New Year’s take care of early January.

I remember waiting for my heart surgery. First, they hustled me along. Urgent, urgent, urgent … but they delayed it three-times. I had to delay it once because I had pneumonia. Heavy coughing doesn’t go well with heart surgery. It took — in total — more than three months between determining I needed the surgery and actually having the surgeon and me both available at the same time. Emergencies came up and for a heart surgeon, they are always first. Heart surgeons live on emergency schedules. By the time I actually got into the hospital, I was an emergency. You can’t always tell from testing alone — and that’s something everyone needs to remember.

This surgery for Garry isn’t an emergency, but it is not optional, either. It needs to be done. Hearing aids won’t work for him anymore, so it is this or a gradual  and close to total loss of hearing for him. He needs his hearing back. I need it back, too, though I wonder what it will be like knowing he really can hear me. I won’t be able to mutter under my breath all the time!

Our granddaughter sent me a note last night suggesting  we should have Garry run for president … because we know Garry could fix everything. I’m pretty sure Garry doesn’t think he could fix everything, but sometimes, I wonder. He’s been a pretty good fixer over the years — and even when he can’t fix stuff, he’s very good at getting everyone to CALM DOWN. In the process, he may be leaning towards madness, but you’d never know it to look at him.

A man with a poker face like that should have played poker. What a waste!

I’ll be back later, but not with more news. They never tell you anything at radiology. You have to wait for the doctor to officially tell you. Eventually, news will follow but do not hold your breath!

IF YOU CAN’T FIX IT, COMFY FURNITURE HELPS

Ouch! That really hurts! My back’s been a mess since I was a kid. Fell off one horse too many. Rebuilt in 1967 — fusion and laminectomy using saws, drills and chisels — long before micro surgery and instrumentation. I’m not special because I deal with pain. I’ve got plenty of company. Sometimes, too much company. We’re all squished together in an over-crowded lifeboat.

96-Me-Young-HPCR-1
Me at 20, a year post spinal fusion.

I’ve had a lot of problems with my back over the years. The fusion, made from bone paste taken from my hip, began to disintegrate about 25 years ago. Nature kindly replaced it with a sheathing of arthritic calcification. That’s not such a bad thing because without the arthritis, I’d (literally) fall apart.

Looking at pictures of me in years gone by, I got to wondering how life landed me here. How did the bright-eyed woman become this creaking achy old thing fighting to keep moving under her own power?

Who is this person?

She doesn’t look or act like me. I can vouch for this because I used to be her, but now I am not at all sure who I am or whose body this is. Maybe while I slept, someone gave me an impostor body. I would jump right on the impostor theory except being me is not something a sane person would want. If I had a say in the matter, I would be healthier, wealthier and younger. Some other body, but I’d keep the brain. I like that part of me.

Life changes, sometimes in a split second.

Remember Christopher Reeve? One minute, he was a big, handsome, strapping movie star. A dreadful split second later, he was someone else.

My down hill slide occurred at the pace at which bones and joints calcify. I broke my back when I was a kid. I was reconstructed when I was 19. For the next 35 years, I refused to pay any attention to my spine. I was not going to be disabled. Not me. It was mind over matter and I am strong.

Turns out, mind over matter only takes you so far. Seven years ago, I began to have trouble walking. My balance became erratic. I lost sensation in my feet and miscellaneous reflexes disappeared. (I didn’t yet know about the heart problems which no doubt contributed.)

I went to doctors, orthopedic hot shots. All of them said I need a new spinal fusion, the old one having fallen apart over the long years. Diagnosis: Horrible spine. Solution: New fusion in which I get screwed together using metal rods. After surgery, I would be in even more pain than now, but my spine would be stable. Say what? This surgery would be the 21st century version of the surgery I had in 1967.

I said Hell no and took my case to the top spine guy in Boston, the Supreme Court of spinal diagnosis. He said I don’t need surgery. More to the point, he said the surgery wouldn’t solve my problems.

This time I heard: “Your back has got you through this far, it’ll take you the rest of the way. Pain control, gentle exercise, and recognize your limits. Don’t do anything stupid.” Like fall off a horse? Lift heavy packages?

selfie 23

There are a lot of members of the back pain club. After you join the club, you usually get a lifetime membership. I finally discovered I have a problem I can’t fix. No amount of persistence, research, medical attention or cleverness is going to make it go away. So I’ve designed the world to make my back happy. We have a back-friendly home. From our adjustable bed, to the reclining sofa, our place is kind to spines.

There’s no moral to this story. It’s just life. If you don’t die young, odds are you hurt. The years roll on, pain gets worse.

I’ve had to accept reality but I don’t have to like it. Sooner or later we all face an intractable problem. Or several. It’s a nasty shock, especially if you’ve always believed you are unstoppable. When you hit that wall, I recommend buying very comfortable furniture.

AN OVER-CROWDED LIFEBOAT

Ouch! That really hurts! My back’s been a mess since I was a kid. Fell off one horse too many. Rebuilt in 1967 — fusion and laminectomy using saws and chisels — long before micro surgery and instrumentation. I’m not special because I deal with pain. I’ve got plenty of company. It’s just sometimes, I feel like I’ve got too much company. We’re all squished together in an over-crowded lifeboat. Sinking. Together.

96-Me-Young-HPCR-1
Me at 20, a year post spinal fusion.

I’ve had a lot of problems with my back over the years. The fusion, which was bone paste made from a piece of my hip, began to disintegrate about 25 years ago, to be replaced by a sheathing of arthritic calcification. That’s not such a bad thing because without the arthritis, I’d (literally) fall apart.

Looking at pictures of me in years gone by, I got to wondering how the long winding road of life landed me here. How did the bright-eyed woman become this creaking achy old thing fighting to keep moving under her own power?

Who is this person?

She doesn’t look or act like me. I can vouch for this because I used to be her, but now I am not at all sure who I am or whose body this is. While I slept, someone slipped in an imposter body. I would jump right on the imposter theory except being me is not something any sane person would want. If I had a say in the matter, I would be healthier, wealthier and younger. Some other body, but I’d keep the brain. I like that piece of me.

Life changes, sometimes in a split seconds.

stages of spondylolythesis
I’m grade 4, considered a miracle I can walk. It’s only part of the problem. That’s the way it usually works. You don’t have a single problem, you have a basket of related problems.

Remember Christopher Reeve? One minute, he was a big, handsome, strapping movie star. A dreadful split second later, he was someone else.

My down hill slide occurred at the pace at which bones and joints calcify. I broke my back when I was a kid. I was reconstructed when I was 19. For the next 35 years, I refused to pay any attention to my spine. I was not going to be disabled. Not me. It was mind over matter and I am strong.

Turns out, mind over matter only takes you so far. Seven years ago, I began to have trouble walking. My balance became erratic. I lost sensation in my feet and miscellaneous reflexes disappeared. I went to doctors, orthopedic hot shots. All of them said I need a new spinal fusion, the old one having fallen apart over the long years. Diagnosis: Horrible spine. Solution: New fusion in which I get screwed together using metal rods. After surgery, I would be in even more pain than now, but my spine would be stable. Say what? This surgery would be the 21st century version of the surgery I had in 1967.

I said Hell no and took my case to the top spine guy in Boston, the Supreme Court of spinal diagnosis.

He said I don’t need surgery. More to the point, he said the surgery wouldn’t solve my problems. Now I heard: “Your back has got you through this far, it’ll take you the rest of the way. Pain control, gentle exercise, and recognize your limits. Don’t do anything stupid.” Like fall off a horse? Lift heavy packages?

There are a lot of members of the back pain club. After you join the club, you usually get a lifetime membership. I finally discovered I have a problem I can’t fix. No amount of persistence, research, medical attention or cleverness is going to make it go away. So I’ve designed the world to make my back happy. We have a back-friendly home. From our adjustable bed, to the reclining sofa, our place is kind to spines.

75-GoodNight-CR-66

There’s no moral to this story. It’s just life. If you don’t die young, odds are you hurt. The years roll on, pain gets worse.

I’ve had to accept reality but I don’t have to like it. Sooner or later we all face an intractable problem. Or several. It’s a nasty shock, especially if you’ve always believed you are unstoppable.

When you hit that wall, I recommend very comfortable furniture.

Daily Prompt: Is there life after blogs?

Last week I went to the hand doctor. Modern medicine has divided the human body so each little piece is assigned to a different specialist. The back bone is not connected to the hip bone. The hand bone is not connected to the shoulder bone. This disconnection is tricky when the problem in the hip bone is caused by a problem in the backbone, but no doctor will look at both. Having already seen my hip bone, back bone, foot bone, and neck bone doctors, none of whom would look at my wrist bone or hand bones I needed yet another doctor. Hence the visit to the hand doctor who fortunately also looks at wrists (phew).

She said: “You’ve got some serious arthritis in your hands. It’s what’s causing the cyst on your wrist, too.”

Not carpal tunnel which is easy to fix and heals quickly. Arthritis. Damn.

I’ve been pounding on pianos, typewriters (see Note) and/or computers since the age of 4 when it was discovered I could pick out melodies on the piano. Sixty-two years later, my wrists and hands have taken more than their fair share of abuse. They’ve held up pretty well. They’ve gone the distance and are ready for retirement.

typewriter with glass sides -2
My first typewriter. Glass sides. Cool, huh?

The rest of me is unimaginably far from ready.

I can’t walk much and can barely make it up the stairs to my house. I can’t bend. Can’t lift. Have trouble driving. As my world has shrunk, the computer has taken its place. It’s my last gateway to participating in the Outside World. My feet can’t take me there, but my fingers can travel a keyboard.

Now, the doctor is explaining, arthritis (unlike carpal tunnel) is not a simple fix. Actually, there’s no fix. When the pain gets unbearable, she can do some surgery. Remove a few pieces of bone from my hands.

I didn’t think I had any disposable body parts left, but apparently I do. Who needs those silly little hand bones anyhow? I’ve got plenty of others.

My first keyboard, my beloved piano.
My first keyboard, my beloved piano.

The recovery period required following this not-so-simple-surgery — during which my hands will be immobilized — is half a year. Or more. After that? Could I use the computer again? Maybe. A little. But my blogging days — my writing days — will be over. This is my last stop on the “I can do it” railroad, so I don’t know where to go from here. I’m pretty sure I don’t have another self-reinvention in me.

So this is not a theoretical question for me. It’s very now.

What would I do without a computer? Without being able to write or process photos?

Read and watch television. Talk to my remaining friends on the phone. Live like shut-ins did before computers. My last window closes.

75-MarilynAtHome-NK-02

This is not a subject I can discuss light-hearted and tongue-in-cheek. What would I do with my life when there’s nothing left I can do which I enjoy? I guess I’d do nothing much. Because when you run out of choices, nothing is pretty much what’s left.

Note: Typewriters look like computer keyboards, but sometimes can work without electricity. No monitor. However a typewriter doubles as a printer. Merely insert paper, type and printed sheets emerge … even without electricity! How clever our ancestors were!

Out of action

Usually, I’m aiming for a catchy title, but I have to tell you this is not a catchy title. I really am out of action.

I have a bad back. It’s been a mess since I was a kid falling off one horse too many. It was rebuilt in 1967 — a fusion and laminectomy using saws and chisels — because  that was long before micro surgical techniques.

I'm a four and a half. Apparently that means I'm disable. I sure feel disabled right now.
I’m a four and a half. Apparently that means I’m disabled. I sure feel disabled right now.

I’ve had a lot of problems with my back over the years and the fusion, which was bone paste made from a piece of my hip, began to disintegrate about 25 years ago, to be replaced by a massive invasion and a virtual sheathing of arthritic calcification. That’s not altogether bad. Without the arthritis, I’d literally fall apart.

A couple of weeks ago, after months of bursitis in my hips making it more and more painful and difficult for me to do much of anything, I went to the neurologist in Boston. I had a couple of cortisone shots in my hips that overnight made my it possible for me to walk again. I was thrilled.

A few days later, what had been a nagging pain in my back morphed from something I could ignore, to something that demanded I deal with it. Immediately. For the last couple of days, I’ve spent all my time trying to find anything that would make it stop hurting.

Today, I gave up, took the heating pad and my agonized spine and went to bed where I’ve been all day and will probably return in an hour or two. The way it’s feeling right now, I might be back in bed sooner than that.

I’m quite literally out of action. In the 45 years since my spinal surgery, with all the problems I’ve had, I’ve never been laid out like this. I’ve been in a lot of pain, yes, but somehow, I’ve managed to gut it out. This time, I just can’t. If you don’t hear from me, that’s why.

I know I am far from the only one with back problems, but somehow I thought what with all the rest stuff I’ve gone through, all the medical crises, the uncountable numbers of surgeries, that somehow I was going to manage to miss this particular one. Apparently not. Please accept my apologies. I’ll write when I can sit up long enough without screaming in pain and I mean that literally.

Assuming doctors are back from vacation after New Year‘s, I will seek medical assistance. I’m assured that cortisone in my spine might actually help. I’m pretty desperate and right now, a needle or two in my spine sounds like a great idea.