Conversations with Pain

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If you get a bit triggered by descriptions of pain, don’t read this. Skip on to something nicer, like recipes or a juicy novel.

Just like you, I am a bit of a connoisseur of pain.

I’ve certainly experienced a bit of it. And you have as well. We all have because we are human. I’m not particularly special in this respect, and my pain experiences are not the most remarkable or – luckily for me – the most severe.

There is no such thing as the Pain Olympics, but if there was, I wouldn’t make regional finals.

Nevertheless, mostly pain is subjective and in my short * life, I have certainly had enough different flavours of pain in my personal buffet that I think I have developed a reasonable palate. Different illnesses; various broken bones, sprains, tears, wounds, bruises and burns; surgeries; migraines, endometriosis, arthritis, nerve pain and high-level chronic pain, and all the rest.

I probably seem pretty obsessed with pain at the moment and indeed that is the case, just because I am going through the process of learning new approaches to managing pain so it is on my mind for much of the day. The process has brought to mind my own personal history of pain.

Pain talks, and sometimes it loves to reminisce.

‘They’ say that you can’t really remember pain. I disagree with that. Personally. I think you can recall past pain in the same way that you can recall flavours, and in a similar way: linked with other sense memories and images. I have a pretty good taste memory. I can clearly recall the flavours of the meal that I ate the night the Captain proposed, over two decades ago, mixed in with other memories: the dress I was wearing, the weather at the time, the candle on the table, the drive home. I can also remember a lot of past pains.

The first significant pain I recall was post-surgical pain (scratchy, sharp) after having my adenoids and tonsils removed as a child. You’d think it would be a nasty memory but mostly I recall the sense of being looked after lovingly by my family.

I recall before the surgery, Dad talking me through the mechanics of a hospital visit so I knew what to expect. The hospital (the old Canberra Hospital) provided a little booklet to help parents prepare their children for a hospital visit. It featured line drawings of a child going through the experience step by step. Dad had carefully drawn a mop of black hair and a little dress onto the child to resemble me.

I remember afterwards: the sore throat and my mother tenderly feeding me icecream to relieve the pain of swallowing. Even now when I get a bad sore throat I remember the taste of the icecream, and the cute little booklet featuring a cartoon Blossom.

The worst pain I recall was a few years ago, after an unexpected laparotomy (pounding, omniprescent, life-draining). The pain in my lower abdomen was astonishing. If the painkillers were actually working, I don’t want to know what they were blocking, although I suspect they were wearing off hours before the next dose.

I hate typing this, but I remember lying in my hospital bed longing to die **. It is very good that the pain was so life-sapping that I had no energy to do anything about it. I was vaguely aware of the Captain somewhere in the vicinity, but apart from him there was only pain, which was so gigantic that it overwhelmed the world. The only relief came the few times when a nurse seemed to realize what was going on and gave me a pethidine shot in the bum. I hate pethidine. I hate the nausea and the way everything happens in slow motion and I hate the sense of being utterly divorced from my own body, but I was so grateful for the relief from some of that ridiculous pain that it was pretty much the best thing that had ever happened to me.

The most terrifying pain I remember was the original accident that set off my back pain (zinging, electrical, breathless). The pain itself was bad but it is dwarfed by my memory of the fear and confusion. When it first happened, I couldn’t breathe for a short time, and I was briefly paralysed. Looking back as an adult, I guess I was shocked and my little central nervous system was overwhelmed.

The strongest memory I have from that incident is several adults gathered around me, yelling and demanding answers: Are you all right? Where is the pain? Tell me! And I couldn’t answer, nor could I let them know that I couldn’t catch my breath. What really lingers in my memory is the combined fear of suffocating and getting in trouble for not answering my teacher. Yes, yes, I know: one of these things is not like the other. But children – and memories – are funny things.

That was really, really frightening but it was an accident, and there is a pretty good chance (touch wood) that it won’t ever happen to me again.

The pain I fear the most is arthritis pain (sharp, throbbing). When it first appeared, like most autoimmune things, it started with an acute flare.

For the first few weeks the arthritis seemed to affect all of my joints, usually several at once, and it also travelled randomly around my body so that I never knew which bits would be affected next. Every morning was an adventure in ‘which joints now?’

I didn’t have real language to describe the pain to anybody at that stage, but a few years ago I broke my ankle and while I was lying on the couch waiting for the ambos something clicked: oh yes, this is familiar. So I can tell you now that the initial onset of my arthritis was like having multiple broken limbs that travelled around my body.

When I had the pain incidences I described above, the first three were acute and had obvious causes: some part of my body was damaged. Therefore I could go to hospital or home to bed and wait for them to heal.

The difference with the arthritis was that there was no real damage ***, and retiring to my sickbed was going to make no difference at all. I pretty much had to keep going, as best I could. It took a while until my blood tests revealed anything useful to allow for long-term treatment, so in the meantime there was nothing to do but live my life with these pains that were relentless.

Injury pain resides in a particular place and you know exactly where to lay the blame. It’s not personal, it’s a wound or break or whatever and you can lie down, let everyday life take a hiatus, and try to temporarily disassociate yourself from it. The arthritis was shifty, hard to pin down and intensely personal. It was pain that hovered right in my face, jabbing at me with pointy, red hot appendages while I tried (unsuccessfully) to cut up my food or sit on a chair or put on a seat belt. It was pain that actively fought me as I tried to function in everyday life.

Nowadays it is very well-controlled and only shows up from time to time. It is a shadow of its former self, but the merest hint of that shadow brings back all those scary, frustrating memories.

All of these pains were acute, even the arthritis. They were a sign of something that was going wrong in my body. However I have learned that doesn’t always have to be the case, with pain.

Pain talks, and what it was saying was ‘OMG SOMETHING IS WRONG. ABORT MISSION. ABORT MISSION.’ The brain has numerous areas that work together to supply and process pain. The ‘Pain Brain’.

The Pain Brain wants your body to shut down normal operations and heal itself. In order to heal, bodies need rest. Most of the time, resting will actually help quite a lot. So, mostly, I suppose my Pain Brain is my friend.

But if she’s my friend, she’s a well-meaning but dopey friend who is really good at innocently getting into all sorts of trouble. If my Pain Brain was a human friend, she would be the sort who offers to open the champagne at a party, shakes up the bottle, then points the cork at the host’s treasured vintage china and pulls hard. She would walk into an expensive designer wedding dress shop holding a large cup of beetroot juice, then if somebody asked her the time, she’d agreeably look at her watch and tip the juice all over the most expensive dress in the shop.

She’s always trying to be helpful and it frequently backfires. I mean, you’d love her, but she’d be hopeless. You’d spend as much time trying to get her out of scrapes as you did actually having a nice time with her.

Pain Brain is great at acute stuff, but she’s crap with chronic conditions and frankly, she’s not too good at the emotional stuff, either.

Chronic pain is different from acute pain but Pain Brain can’t tell the difference. Resting did not help that arthritis, but you couldn’t tell that to the Pain Brain. And she can’t discern emotional pain from physical pain either. She does her best, bless her, but she’s just not really that good at some things and these are really not her strong points.

My chronic back pain is not coming from any new injuries, in fact technically there’s nothing really wrong with the area. But somewhere back in the day, Pain Brain conceived of the idea that my back was a problem spot.

She’s part of me, remember. She’s been with me all of my life. She was there when that accident happened, and she remembers what I remember about it. So if I start to feel a bit overwhelmed and helpless, like I did that day, she responds helpfully by repeating her actions from the accident itself. BACK PAIN BACK PAIN BACK PAIN OMG.

I mean, that’s helpful, right? All she wants is for me to stop doing anything and rest up so it will get better, even if it won’t.

And when I stay in one position for a long time, as I was told to do when I was recovering from the injury ****, Pain Brain suddenly accesses that memory and springs into action. BACK PAIN BACK PAIN BACK PAIN OMG.

And when I feel a bit tired. PAIN PAIN PAIN. And when I get too hot. PAIN PAIN PAIN. And when I type sitting down. PAIN PAIN PAIN. And when it rains. PAIN PAIN PAIN. And when I go to the cinema. PAIN PAIN PAIN. And when I move my head two centimeters to the left instead of to the right, like she wanted. PAIN PAIN PAIN. And when I think of a pink elephant. PAIN PAIN PAIN.

For the longest time, I really believed I was at the mercy of Pain Brain and her whims.

The pattern went like this.

1. Something happens, or doesn’t happen.
2. Pain Brain starts up her chant.
3. I think: oh, here it comes.
4. And it comes.
5. It gets worse, and worse, and worse, until it Painstorms.
6. I conk out.
7. Pain Brain has won! Hurrah!

And my capacity to function is severely impaired. Because conking out is the worst thing you can do for chronic pain. Pain Brain has won, and wants to win again, and therefore she is on a hair-trigger, eagerly awaiting her opportunity to win the next round.

How can a person escape this endless cycle?

That’s something I am working on right now. I did a ‘Mindfulness’ course recently. It was part of the JUMP course I did a while ago: this was one of the electives that you can sign up to do later. It was only a short course but I learned more and I liked what I learned.

They shared a number of practical techniques including changing our internal language about pain, learning how to stop catastrophizing, and mini-meditations and body scanning exercises. All of these could be adapted for managing our own particular variants of Pain Brain. That’s not what they called it, by the way. They put it differently, but part of the course was encouraging us to visualize our own pain and how to deal with it. Then practice it. Every day.

Pain Brain, my scatty ever-present friend, is my own personal pain visualization. And this is my personal take on the technique:

Pain talks. So start talking back.

image

 

Me and Pain Brain: let’s talk.

 

Last night I had the opportunity to put a few techniques into practice. It was a challenging night.

Poor Darling Dog featured. Firstly, on her evening walk she ate something … unspeakable. The poor Captain had to wrestle most of it from her with his bare hands and brought it in for my identification (yes, yes, revolting but important).

For a while we were on tenterhooks in case it set off a case of poisoning or something equally horrible. Fortunately, Darling Dog’s glass stomach came to her rescue and she barfed it (and everything else she’d eaten that night) up onto the hall floor.

I am a terrible sympathetic vomiter so the poor Captain had to clean it up while I crouched in the next room, sipping hot water (it is quite soothing) and trying not to retch.

So none of us were in a good state when we went to bed, and then it started to storm. Darling Dog, of course, is in mortal fear of storms. We spent the next few hours trying to soothe a terrified, shivering, restless hound while attempting to make it look as though she had nothing to actually be scared of *****.

I am not my best during storms either, they tend to make stuff flare up. When the thunder eventually stopped and the dog calmed down, I tried to go back to sleep but something was preventing it. It was like a little red flashing signal in the corner of the darkened control room of my mind.

Here follows: last night’s Conversation With Pain.

Blossom: Hmmm. Why am I not getting back to sleep? … Uh oh. It couldn’t be … it’s not … is it? …

Pain Brain: OMG PAIN PAIN PAIN ALERT! ALERT! PAIN PAIN PAIN PAIN PAIN!

B: Help! I can’t sleep because of pain! And now I will be tired tomorrow and that will bring more pain! And I won’t be able to get anything done. I’m doomed! Doomed! DOOM … No. Wait. I know how to handle this. Mindfulness.

PB: THERE IS NO MINDFULNESS ONLY PAIN.

B: Yes, Mindfulness!

PB: T H E R E I S N O M I N D F U L N E S S O N L Y P A I N.

B: Ahahahaha. Nice one. Now, what techniques did I learn? Body scan. Start with a body scan. Start with my toes.

PB: YES YES YOUR TOES HURT.

B: My toes hurt. Why?

PB: ARTHRITIS! ARTHRITIS IS SCARY. YOU WILL BE IN GIGANTIC PAIN FOREVER.

B: Arthritis is scary! Eek! No. No. It’s okay. How bad is it?

PB: IT’S REALLY … IT’S ABOUT FIVE OUT OF TEN.

B: Five out of ten?

PB: YES.

B: That’s not so bad is it?

PB: YE … er, no.

B: Okay. Arthritis in my feet, not too bad. Moving on. Legs: fine. Hips: a bit sore …

PB: YES YES A BIT SORE.

B: … Which is fine. Still scanning. Lower back: a bit sore.

PB: A BIT (ahem) yes a bit sore.

B: Middle back.

PB: MORE SORE. QUITE SORE.

B: Manageable?

PB: (sulkily) I guess.

B: Okay. Upper back: fine. Shoulders: fine. Arms: fine. Fingers?

PB: ARTHRITIS!

B: Severity?

PB: FIVE.

B: Okay. Neck: fine. Head: fine. Anything else?

PB: *zing! jab!* NERVE PAIN.

B: Right. So what have we got? Level five arthritis in hands and toes. Back quite sore. Some (*zing!*) nerve pain. Cause?

PB: … There’s a storm?

B: A storm, yes.

PB: AND YOU’RE TIRED.

B: Yes, tired. So what can I do about it? Can I fix the weather?

PB: NO!

B: Okay. Let’s leave that then. Can I fix the tiredness?

PB: (hopefully) Yes? By resting?

B: (sternly) Yes by resting but not too much.

PB: AWWWW.

B: Not too much. Do I have much on tomorrow?

PB: Not really? Yoga.

B: Worst case scenario: can I miss the yoga?

PB: (Now trying to be helpful again) YES!

B: Right: so let’s summarise. I have some pain which is not unbearable. I am tired but I can live with that. Nothing bad is actually going to come of this. And is there anything else I can do to alleviate this situation?

PB: Hmmm, take some anti-inflammatories for the arthritis tomorrow?

B: Yes. And?

PB: Ummm, and if you miss yoga, you can still take the dog for a walk … ooh! And do some yoga at home with a DVD!

B: Anything else?

PB. Um, um, yes! You can meditate for a while! That often helps with the pain.

B: Right.

PB: And do some gardening.

B: Right.

PB: And cook something nice.

B: Right.

PB: And read some recipes.

B: Right.

PB: And chat with Darla.

B: Right.

PB: And

B: That’s probably enough.

PB: Okay.

B: So are we okay now?

PB: Yes.

B: Can we go back to sleep?

PB: Yes.

B: Good night then. See you in the morning.

PB: Nighty-night.

So I turned over (carefully, minding the sore bits) and went back to sleep.

Sure enough, I woke up too late to make it to yoga, and my hands and feet were swollen and sore. My back ached and I was tired. But none of it mattered too much. I already had plans for how to spend the day and at time of writing this (because it has taken me some time to finish this blog post), I can tell you that I did a few of the things on my list and they helped. Overall, it was fine. Not great, but fine.

A while ago, this whole situation might have led to a nasty flare-up of pain, accompanied by a lot of the bad memories that come alongside things like pain and fatigue. Left unchecked Pain Brain would have gotten her way and won: a Painstorm followed by week or more of my life spent in pain instead of on the things I value much more. The Captain, friends and family, the Darling Pets, my job, my garden, my kitchen.

Pain isn’t always sensible, and it can’t always be avoided. But it turns out that it can be reasoned with. Not forced into submission, but put gently into its place.

And I am, possibly, starting to make some peace with it. It’s not nice to know it will be with me every day, but it is nice to know that in the general scheme of things, that mostly doesn’t actually matter. As long as it keeps doing that most important job of letting me know when something is genuinely wrong, I guess I can tolerate it just hanging around in the background occasionally making off-colour comments and poking me in the back, the way it has learned to do.

One last observation for this post.

We don’t talk that much about the pain we go through in life, especially when we allow it to affect our everyday life. I think we have taught ourselves that we have to be brave, and that it is admirable to ‘push through’ pain to get things done. And sometimes, I can see that is very much the case.

But it isn’t always the case. I’m here to tell you, ‘pushing through’ can be exactly the wrong thing to do. It leads to chronic and disabling problems (er, like mine), and also teaches us how to disguise and compartmentalize everyday pain, which in turn makes it very, very difficult when the time comes to ask for and get the help we need.

So can Auntie Blossom offer her advice? Please don’t get in the habit of hiding your pain too much. Pain is not moral weakness. It is not a sign of failure. It is, in fact, a clear sign that your body and brain are working together, even if they aren’t always working in your favour.

Talk openly about your pain now, and get into that conversation with Pain Brain early and often. In fact, talk to me. I want to know. Tell me your pain stories. I know there is no such thing as the Pain Olympics, but I promise to be suitably impressed. Sharing is caring. Over to you.

 

* A joke! I jest!

** I know. Dramatic much? Fire the scriptwriter!

*** Apart from swollen, spongey hot joints.

**** Really, really bad idea but that was in the Olden Days and it’s how we used to do it back then.

***** A delicate task best not undertaken between 1 and 4 am.

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