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August 20, 2022

Mandy Nolan’s Soapbox: Feel the Pain

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There are so many inspirational quotes about pain. If you know someone in pain, don’t make it worse with a cliché.

Around 20 per cent of Australians live with chronic pain. It’s consistent with worldwide stats that indicate one in five people suffer from chronic pain (CP) with prevalence increasing with age. I woke at 1am and started thinking about this. And then I woke again at 1.30am and 2am and then I lay there until after 3am. I might have drifted but woke at about 4.30am to roll over. I am in pain. Excruciating, constant and unrelenting pain. Pain that I’ve had now for a few months. Pain that lives in my body like a toothache. A silent electric throb in one side of my body. 

And yes, it’s age related. It’s bursitis and a frozen shoulder, and I’m getting treatment.

Fortunately my condition isn’t lifelong, it should resolve itself in 18 months.

That’s what the radiographer told me after an ultrasound. I was like, ‘Wow, 18 months! How do people live like this?’.

It hurts to sleep. There is no comfortable position. I toss all night looking for some way of holding my body so that I can’t feel the ache. The longer I lay in bed the more painful it gets. My friends say ‘You need to rest’, but rest hurts the most. I no longer need an alarm to wake. I’ve been awake all night.

It hurts to wash my hair. It hurts to dry my hair. It hurts to get dressed. I struggle to pull up my jeans; I can’t get my coat off without assistance. It’s humiliating to be in public and have to ask strangers to help me. I am not used to being in pain and being limited by what I can do. It still catches me by surprise. 

When I was in Sydney recently for work I realised the only dress I had packed had a zip up the back, which I could normally manage. I had to ask the poor young man at reception to do me up. He awkwardly obliged. I’m like, fuck, is this what it feels like to be old? Wandering the streets with your clothes unzipped? Hoping for the kindness of strangers?

And I am lucky. My condition will eventually pass. But it’s depressing. I feel myself slipping into a sad space. Apart from what my physio gives me I can’t exercise, I can’t play tennis, I can’t do yoga, I can’t ride a horse, I can’t abseil, I can’t swing on the trapeze. Of course most of those things I never did anyway, but the pain makes me sulk about my loss. Pain doesn’t bring out the best me. My pain scale hovers between a two and a six. Right now it’s about two. When I finally got out of bed it had been at six since midnight. 

I don’t take painkillers. Opiates stop working after six weeks, then you have to up the dose. It can end up making pain worse. My husband told me this because coincidentally he’s writing a Masters on CP. It’s a shame, because I was quite looking forward to 18 months on opiates, but what’s the point? I couldn’t be bothered. I’d rather suffer. After all, I have some Denco rub and a hot water bottle. Heat; the quiet salvation of the aged. People in chronic pain are easy to identify – they smell like menthol and rubber.

I have tried medicinal cannabis. It does help quite a lot, but I don’t want to lose my license. The drug-driving laws mean the only useful pain relief for me can’t be used without a huge risk. Ironically if I was using opiates I’d be fine, but if I’d taken medicinal cannabis it’s detectable for up to 10 days – so if got swabbed I could lose my license. That’s a whole other sort of pain.

But as someone who has never been in constant pain like this before I suddenly realised how 20 per cent of the population feels all the time. I realise that pain is boring. That it isolates people. It kills joy. And that people in pain very often stop saying ‘I am in pain’ because, in the end, no one takes any notice. You sound like a whinger. Well, I’m having ‘lived experience’ right now, and to that one-in- five out there who suffer in silence, I have to say – how do you do this? You really are amazing; because it’s hard and it’s relentless. 

Pain is subjective and invisible. Other people can’t see it. They dismiss the experience of people with CP. I realise I certainly did. I’m sorry I never really considered what your life was like. 

There are so many inspirational quotes about pain. If you know someone in pain, don’t make it worse with a cliché.

There is a quote that says ‘Sometimes you must hurt in order to know, fall in order to grow and lose in order to gain, because life’s great lessons are learned through pain.’

What a load of horseshit. That’s what privileged people tell the suffering so they can go back to being privileged while the rest of us are busy in our silent agony becoming better people.

Fuck that. Just change the law.

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  1. Ha, not much comes out of Mandy’s pen that I agree with, but I do agree with this. Change the cannabis laws, not just for pain sufferers, for all sorts of legitimate reasons.

  2. Shoulders are bad I’m up to 21 months with the same, I can definitely do more now but still have trouble with anything behind the back or above the head. Can touch my nose now though and get dressed- winning.
    I hear acupuncture can help.

  3. Sorry to hear about your crook shoulder Mandy. Good on you for describing the pain and all the limitations it brings – people ought to know about these things. I’m not suggesting remedies, no doubt others are doing that, but I’ve been through the bloody awfulness of chronic pain so commiserate. When I was a teenager with period pain my mother gave me gin and nutmeg in warm water – it tasted horrid but numbed the pain!

  4. Yep: Bloody bursitis! Despite 2 lots of treatment not much progress. Not an aid for sleep and stops me doing the bike riding and canoeing I used to keep fit and makes it hard to get the sleep I need to keep healthy. Reminded me of articles I have seen on the problems of pain management. Heat helps a bit and I also find very limited stretching helps.

  5. So sorry to hear you’re in such pain Mandy, and the lack of sleep doesn’t help.
    Pain and chronic illness is such a devastating factor in so many people’s lives. The bursitis was agony, but ultrasound guided injection did help so much, later augmented by the extremely high doses of corticosteroids, and anti-inflammatory immune suppressants for what is now a critical chronic obstructive immune disease.
    Thanks to Scummy’s cuts to health, diagnosis was delayed for a year so the treatments are awful. It’s buggered up the ‘pump’, so even the good oil isn’t an option.. but bring on exemption for those who can!

  6. Quite a lot of Mandy’s pen I side with & support. I’ve had
    both shoulders doing the waltz of pain. It aint a game.

  7. Hi Mandy – frozen shoulder is the most awful pain I’ve ever had. It will get better over time (18 months was about the time for me), the first cycle of “freezing” is the worst, once it reaches “frozen” and then “thawing” the pain is nowhere near the same. It’s important to be kind to yourself and do whatever you need to get enough sleep each night. Modify your clothes to avoid antagonising your shoulder – cut off bra straps or go without, only wear button up the front shirts etc, put your arm in a supportive sling sometimes too. Heat packs and help in the kitchen and with housework are good too. After a few years you may find your shoulder is almost as good as new again, and like you say, with a much better appreciation of what living with chronic pain is like, which for some people never ends. We should all advocate for better pain management, in whatever form it takes.

  8. Hi Mandy. Having had a couple of frozen shoulders and bursitis I can empathise with you.
    Can I suggest organising a cortisone injection under ultrasound at North Coast Radiology via your doctor.
    Works for me.
    And then you need one of those massage machines on the bits of your shoulder that hurt because they are in spasm from the bursitis two or three times a day until it comes good.
    I go to Amanda Bryce in Alstonville. She’s great.
    Good luck with it.

  9. This speaks to me so much. I also have chronic shoulder pain and it hurts to sleep. Like seriously, sleep is agonising. I too wake at 1 then 2 then 3. By 4 the shoulder pain is excruciating. I take some more paracetamol and occasionally get the bliss of an hour’s sleep.
    I’ve got a great t-balm. And it’s legal. It helps but I can’t rub it in because.. well my shoulder hurts too much to get there.
    I also have some ptsd. That’s not fun either. So it’s a battlefield every damned night between the pain, the ptsd and the long term insomnia that both have set deep in my system.
    Sleep and deep rest is what I need most yet my body abhors it, actually forbids it.
    I did get a hard ball from my acupuncturist to self massage the damned shoulder. That helps a bit. But not enough.
    What really helps is a pain free night thanks to the goodness of our green earth but I also need my license.
    Hell yes legalise medicinal cannabis.


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