Pain Journal - aka Living with Demons
BY
Danie Palm - South Africa

This is a journal of events in what is a typical bad day for me. There are not-so-bad days as well, relatively speaking. You will find it hard to believe what you read here and I can't blame you for that. Even the few persons who really know me well took a long time to understand. After all, pain is invisible. And with neurological pain there isn't even a mark or a wound or a broken bone to show as evidence. Such is life.

03h07:
My right hand's throbbing away again so I get out of bed, softly not to wake up the missus. She's quite a complainer this time of the morning. The paralysed right arm dangles uselessly as I get into my wheelchair. Feeling for it (the arm, not the wheelchair) in the dark with my other arm I put it in it's usual position, more or less awkwardly over the armrest.

In the lounge I switch on the TV and watch CNN. All the time my right hand feels as if there's some crazed creature twisting and turning around inside the arteries, ripping them apart in its effort to get out. Sometimes the hand is hot, sometimes it's cold. Whatever it's temperature, that "thing" inside is forever trying to get out. It is this sensation that I refer to as the "normal" throbbing and burning pain further on.

Normal? Ha! Ha!

Just for fun those stabbing shocks start running down from the elbow into the hand as well. The pain is intense, doubling me up as the spasms hit and refuse to let go. It feels like a combination of electrical shock, cramp and being cut with a knife. I swear at the pain, at myself, at a lot of things. Doesn't help but what the heck.

These "stabbing shocks" start up any time, any place, without warning or logical reason. They'll last for two or three days, then disappear for a few days. The merciful days without the stabbing shocks are the "not-so-bad" days I referred to earlier. But even then the "normal" throbbing and burning pain in the hand is still there, it's always there.

04h51:
Fed-up with the nonsense on TV I'm off to my PC. Check for email, delete all the spam and write replies to those left. Takes a long time, every time a shock hits I curl up and wait for it to pass. Currently they're about 2 to 3 minutes apart, lasting about 20 to 30 seconds before I can breathe again. Not too bad yet but I know from experience it gets worse. Of course the "normal" throbbing and burning pain in the hand is still there, it's always there.

05h26:
I hear the alarm going off in the bedroom. The missus wakes up the kids then shuffles towards me. "Why aren't you in bed?" she grumbles. After six years of attempting to explain why I can't sleep at night I don't even reply. At least I'll be getting some coffee soon. Can't go make my own as I can't get to everything in the kitchen.

06h32:
Back at the TV. Infomercials! Does anybody ever watch them? I transfer to the couch to lie on my left side as those nuts and bolts in my right hip are joining the pain orgy. The shockwaves in my arm are still stabbing away and the "normal" throbbing and burning pain in the hand is still there, it's always there.

What's that? Damn, a ghost pain as well! My right leg is amputated but the big toe on my right foot still zaps me. Then yet another shockwave stabs down my arm. My right hand throbs and burns. My right hip aches.

Zap in the foot, stab down the arm, throb and burn in the hand, aching pain in the hip. Zap, stab, throb and burn, ache. Maybe there's a poem or a hit song in there somewhere.

Somtimes all at once, sometimes blessedly far apart and not always in that order, but then there must be some variety in life.

06h43:
The kids come to say 'bye, they're off to school. I hardly have the strength to grunt goodbye. I notice it's light outside and realise another day, for ordinary folks at least, has started. But then I'm no "ordinary" folk, no sir I'm not. My days start much earlier, my nights end much later.

07h51:
Now they're doing aerobics on TV. I hate that kind of program, had to watch it every morning for more than six months in hospital.

08h42:
I sit up. The arm stabs are gone! And my hip, having had a rest, also feels better. Not OK but better. The "normal" throbbing and burning pain in the hand is still there, it's always there.

I wobble upright on my leg. As I shakily reach for my wheelchair the stab in the arm returns. Bzzzzzzzt and I fall down. No wobbling on one's only leg while you're getting zapped. But not to worry, I've had years of practise and as planned I end up in a heap on the couch.

Eventually I'm in my chair again. Back to the bedroom. I doze off but then I get another Bzzzzzt. The "normal" throbbing and burning pain in the hand is still there, it's always there. As a result I lie awake, rolling around as ever.

09h45:
I'm back in the lounge with the TV blaring away. Even infomercials are better than nothing. The shocks in the arm are mercifully gone and I'm actually almost glad that only the throbbing, burning pain remains. Oh yeah, the "normal" throbbing and burning pain in the hand is still there, it's always there.

10h15:
Shower time. I get dressed, the wife helps me so it goes faster. We're going into town and there's no time to waste. I'm in a hurry, the sooner we go the sooner we get back the sooner I can get back to my bed.

11h00:
I start the car, hoping that the stabs in the arm will stay away. The "normal" throbbing and burning pain in the hand is still there, it's always there. An hour later and we're in town. I wait in the car as the world around here ain't too accessible for guys like me. Guys in wheelchairs I mean. And nobody gives a damn about guys in permanent pain any way. Out of sight out of mind.

Then, suddenly, there's a Bzzzzzzzt down my arm again and I writhe in agony. A passer-by looks at me as if I'm demented, little knowing that I am indeed beset by demons. One in my hand, another in my arm, yet another in my hip and an occasional visiting demon in my missing right foot.

In spite of the Bzzzzzzzt's having returned I'm actually grateful for the fact that they're usually not around when I'm driving. Seems by keeping physically busy I manage to ward off the arm demon. And driving a car with only one leg and only one useful arm keeps me very busy. I have my hands (pardon the pun) full when driving.

"Eureka!" I shout, having found the cure for the arm demon's Bzzzzzt attacks. Totally forgetting that anybody, even super-human me, has to sit still sometimes, has to lie down sometimes, has to sleep (or try to at least) sometimes.

The "normal" throbbing and burning pain in the hand is still there, it's always there as the hand demon twists and writhes in it's never-ending effort to escape. I wish it would get tired sometimes and take a rest, I wish I could help it escape, I wish I win the lottery, sometimes I REALLY wish I never had an accident ...

15h27:
Back home and I gratefully collapse on my bed. The hip demon's gone, the foot demon's away on leave and the arm demon's given up. Till next time. The "normal" throbbing and burning pain in the hand is still there, it's always there.

I fitfully doze away. At last.

15h41:
Bzzzzzzzt ... "Thought you got rid of me?"
  Bzzzzzzzt ... "Thought you could lie down?"
    Bzzzzzzt ... "Thought you could sleep?"

The arm demon torments me, taunts me, tortures me as I jerk from the shocks in my arm. Then he decides to take a break, for a while at least. The "normal" throbbing and burning pain in the hand is still there, it's always there.

16h07:
"That's nice," I hear someone's voice. The sarcasm is plain to hear, after all what's a grown-up man like me doing in bed this time of day? It's one of my so-called friends. I don't even bother to tell what its like, it will take too long and they never listen in any case.

I struggle to wipe the permanent pain-induced frown from my face. Some people think (and tell the world) that I'm a bad-tempered and ill-mannered old man. But I don't bother to explain, it will take too long and they never listen in any case.

As far as I can tell he doesn't notice how I pull my face and twist around with every Bzzzzzzt. Perhaps he does notice. Maybe that's how the urband legend of my bad temper and ill manners got started.

I'm not angry with him for disturbing my afternoon siesta. After all he doesn't know because I've never bothered to explain. When he leaves I finally manage to drift in and out of sleep. Not much but at least my protesting body and burning eyes get some urgently-required rest.

18h03:
TV time, maybe a sitcom will cheer me up a bit. Fat chance of that. The "normal" throbbing and burning pain in the hand is still there, it's always there. But I don't complain, no not me. The stabbing pains in the arm are gone. Momentarily at least. Maybe the arm demon's having lunch or something.

18h48:
Time to chow. I know I eat too much, I know I'm fat. So what. A doctor once told me I must lose weight. Fortunately he has a sense of humour. He laughed when I told him I lost enough weight for a lifetime when the leg was amputated.

Between all those demons there's little time for pleasure left in life. Take note, not little pleasure left, but little TIME for pleasure left. Big difference as all those who call me "negative" should realise. So I'll eat. At least I won't die of starvation. Maybe from a heart attack but definitely not from starvation.

Neither will the demons kill me. Not directly at least. Maybe the despair will drive me to yet another overdose (only two so far) one day, but they don't kill directly. Pity. If I could be sure they'll definitely kill me some day they might be worthwhile enduring.

19h07:
I start up the PC again, open my email client and click on "Send and Receive All" while I hold my breath, waiting for the arm demon to return. Only the "normal" throbbing and burning pain in the hand is there at the moment, it's always there.

19h28:
Back in the lounge. The whole family is there watching whatever it is that families watch on TV. I'm so dog-tired that I fall asleep on the couch despite the noise. Every now and then I wake up when a door slams, somebody laughs too loud or switches TV channels, the doorbell rings, whatever.

23h34:
I collapse on my bed. Still I can't sleep. I toss and turn, constantly roll around. Why? The "normal" throbbing and burning pain in the hand is still there, it's always there. But I'm grateful for that as my hip and my arm seem to be under control for the time being. Be thankful for small mercies.

Being a professional broker (permanently broke and out of money) my sleeping pills are finished so I'll have to hope and pray I'll fall asleep. Sometimes it works, sometimes it doesn't. I wonder what the date is, how long till the next payday so I can get some sleeping pills again. Not that they are infallible, the arm demon has a way of getting around them.

00h36:
I think I dozed away! Yippee! Had some sleep! Not bad at all! But why am I awake? Oh yeah, it's the arm demon again. Stabbing away, having a great time.

Bzzzzzzt ... "Think you can sleep? Well I got news for you!"

And so on. Ad infinitum. Ad nauseam.

I toss and turn and roll around. The stabbing pains go away after a while but the "normal" throbbing and burning pain in the hand is still there, it's always there and as always it takes a long time to fall asleep.

BTW:
Are you becoming fed-up with me constantly repeating that bit about the "normal" throbbing and burning pain being there all the time? Good for you! Imagine how fed-up I am with the blasted pain.

02h04:
I get out of bed, softly not to wake up the missus. She's quite a complainer this time of the morning. Off to the lounge again. My day is starting a bit earlier than usual, it's just after 2am and usually I only do lounge patrol at about 3am.

As I hang around in the lounge I have a conversation with the devil.

"Bring it on you bastard," I tell him. "There's nothing you can do that I haven't been through already."

He's impressed, offers me a job. Stoking fires or something ridiculous like that. Way below my qualifications.

"To hell with you. With my background and experience you'll have to make me vice-president of Torture and Torment," I reply indignantly.

"Done," he replies with a grin. Seems he can do with some help. Must be hell (pardon the pun) torturing all those lost souls on his own.

I enquire about medical benefits. The "normal" throbbing and burning pain in the hand is always there, it will be there the day I take up my new position. Sort of like taking my own punishment along.

As he explains I reconsider taking the job. Why? Hell Inc. doesn't have chronical medical benefits for pain caused by damage to the nervous system. Sounds familiar.

Not that it matters. Whether it's hell down there or hell up here, the "normal" throbbing and burning pain in the hand is always there.