I MIGHT LIKE LIVING IN A BUBBLE – Marilyn Armstrong

LIVING IN A TRAVELING BUBBLE

I don’t like to talk about pain. So many people are in pain and many are worse off than me. My problem is mine is constant and can’t be fixed. The repairs they did back in 1967 crumbled decades ago. No one is willing to go back in there. It’s messy.

It hurts, but so would a surgical replacement. Take your pick. Naturally growing pain or surgical pain. I think I’ll go with natural. Because the cut to my septum (to repair my heart) never healed (that would be the cartilage that didn’t glue itself together  — the bones are fine) hurts when I breathe, when I lift, and sometimes, it just hurts.

It’s movable. Sometimes I can press here and there and make it settle down for an hour or two. Again, nothing they can do for it except open me up, cut it loose and wire it tighter. Somehow, I don’t think that is going to make me feel better. I’m a bit resistant to more surgery. I can’t imagine why.

An awful lot of people tell me it’s all a lack of exercise. The exercise I get is cleaning. The house. Washing the floor. Vacuuming. Changing the covers on the sofas. Hefting my  10-pound PC 100 times a day from my lap to the side table. I have strong upper arms, but my wrists are fading.

Constant pain is tiring. I walk. I could get a wheel chair but there’s no ramp from up here to down where it would need it. The chairs are not good on grass and other “rough” surfaces, so it wouldn’t take me where I want to go.

As long as I have legs that get me moving, I’ll will have to use them.

Some stuff doesn’t improve, especially at this late stage, but if I’m lucky, it might not get worse.

Medication helps, but there’s only so much I can take. Prednisone helps a lot, but it’s dangerous. It lowers ones ability to heal from injury, even very minor injury. I have problems with that anyway because of the heart surgery. Prednisone would make me feel better temporarily, but it wouldn’t cure anything. Though I think I deserve a two-week Prednisone break at least annually. Like a vacation, you know?

There was a time when a shot in both hips and my spine would give me weeks — sometimes a month or two — of living normally. It was heavenly. The more often one gets the shots, the shorter the relief from them. Despite rumors, they wear off. Unless you are dealing with a temporary injury or irritation, one day, the pain is back.

I hate the disappointment of the shots wearing off. I feel like Charlie in “Flowers for Algernon.”

I could also take pain medications earlier in the day, but they make me drowsy — which I don’t like — and they also wear off. Addiction is not on my agenda this year.

Some problems don’t go away. I get tired of people telling me it’s all “mind over matter.” These days, it’s too much matter and not nearly enough mind.

About that bubble. If I could get a bubble to carry me around, wouldn’t that be cool? A traveling bubble. A trans-continental bubble. An up and down the stairs bubble.

We aren’t going to be Mr. and Mrs. Popularity like this, I’m afraid.

And here the final irony: the thing that hurts most is just standing around. Not working, digging, lifting or walking. Standing in one place, waiting. If I am moving, even slowly, I can make my body do it. But standing still and waiting is a killer.

That and miniature golf.

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.

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.