Tag: Living with chronic pain

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Sticks and Stones – Lets Do Things Differently

We have no doubt you have heard the children’s rhyme, Sticks and stones may break my bones, but words will never hurt me.

“Sticks and Stones” is an English-language children’s rhyme. The rhyme is used as a defense against name-calling and verbal bullying, intended to increase resiliency, avoid physical retaliation, and/or to remain calm and indifferent.

That may well be the thinking for creating resilience in children, but that notion can still be carried into adult life, with devastating effects on people living with invisible chronic pain.  Casual words in conversation without any idea of what someone is having to deal with can be very hurtful, create huge upset and trauma.  Living with trigeminal neuralgia is a massive life changing challenge, but apart from the clenching of the face and a pause in conversation or a slowness in eating, the onlooker may never be aware of the huge pain level endured by those living with it.

Our society has not been well served with the politicisation of those that may need government support or can’t conform to what is expected.  Our education system often plays lip service to inclusivity without really understanding what is actually needed by people living with chronic illness.

Conversations are now more open on individual sexuality and mental health but we still have a long way to go to stop stigmatising living with chronic pain.

Nobody would choose the path of living with chronic pain, losing dignity, losing independence both personally and financially, feeling isolated anxious and hopeless.

We aim to steer conversations in a more positive direction by providing alternative narratives, education, support and advocacy.  The following article may help you frame your next conversation with someone living with chronic pain in an inclusive and supporting way

Katie Brebner Griffin is a Melbourne-based social policy research analyst, and a lived experience advocate who appeared on ABC’s You Can’t Ask That S3E1. She also works as an illustrator under the name @ohkdarling.

Things not to say to a person living with chronic pain

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National Chronic Pain Awareness Week 24-30 July

Every year Carer Australia support National Chronic Pain Awareness Week 24-30 July to raise the profile for all Australians caring for family member, partner or friend who lives with chronic pain.  This organisation is run by volunteers.

We work to improve the health, wellbeing, resilience and financial security of carers and to ensure that caring is a shared responsibility of family, community and government.

We know how important it is to shine a spotlight on the issues that carers have to deal with every day.  People living with trigeminal neuralgia have to cope with chronic pain and having support from a carer is imperative.

We are publishing resources that can be found on Carers Australia web site which we feel will benefit our community.

Factsheet 5: How can I help someone living with pain?

These 6 sessions (plus 2 bonus practices) have been put together by the director of  Simply Mindful – Canberra Mindfulness Center, Megan Layton. They were funded under the program Caring Through Covid by the Department of Health.

Mindfulness on Demand

Our association has its own awareness day on International Trigeminal Neuralgia Awareness Day on October 7th Light Up In Teal.

We recognise that donations are hard to achieve especially with current cost of living pressures.  However we pride ourselves in ensuring our community has easy access to resources which may help them cope with day to day living challenges.

If you would like to recognise National Pain Week amongst your friends and community head to Chronic Pain Australia which published the below article.

WHAT IS NATIONAL PAIN WEEK?

National Pain Week 2023 is Australia’s annual awareness event for chronic pain.

Chronic Pain Australia wants to draw attention to the experience of people living with chronic pain and, by doing so, reduce the social and other barriers related to living and managing chronic pain.This year’s theme ‘Let them know how strong you are’ and ‘painchanger’ aims to break down the stigma of talking about and seeking care for people experiencing chronic pain. Many are taught to hide their pain for fear of appearing weak.

The “she’ll be right” attitude is often adopted when addressing individuals chronic pain, leading to worsened, long-term impacts for both themselves, their family, friends, and colleagues.

This National Pain Week, we are encouraging a national conversation around people who live with chronic pain. By creating national conversations, we spread useful resources and tools for those living with chronic pain. We often hear people describe trying a new pain management tool as a ‘gamechanger’, so we have created the theme ‘painchanger’ as a play on words for this year’s theme

 

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Chronic Pain – No Longer Normal

Any one living with chronic pain tries to live a normal life.   That idea is really quite absurd because when you are living a life evaluating what you can or can’t do every moment of the day…..clearly you you are not going to fit in the “normal” box

This article was written by By Carol Levy, (PNN Columnist) and I think she describes the challenges really well

A Pained Life: The Blame Game

Do you ever second guess yourself or play the blame game?  I did it again when I found myself doing too much.

While reading, my eye pain from trigeminal neuralgia started to grow and I thought, “Oh heck, I can do one more page.” And with each additional page, I repeated what has become a mantra: “It’s okay. I can do it.”

But of course, I can’t. Not without paying a price.

I finished most of what I wanted to do, my eye pain constantly telling and then yelling at me, “Stop already!”

By the time I gave in and stopped, the level of pain was exquisite. I had no choice but to go to straight to bed, and try not to move my eyes for 15 minutes, if I was lucky, or an hour or more if I was not

I do the same when going outside. I know a breeze, or even worse the wind, will again trigger the pain from trigeminal neuralgia. Any touch to the affected side of my face does. But I so much want to go outside.

“Oh, the wind doesn’t look that bad,” I’ll say to myself as I watch the tree in my backyard swaying from the strength of the wind against it. I go outside, the pain is triggered and I scurry back inside as fast as I can, then wait the 15 minutes to an hour before the pain calms down.

The whole time I lie there and self-flagellate: “I knew to stop, but heaven forbid I should do what I know is right. I knew better. It serves me right.” And so on.

Most people do this kind of thing. “I knew I shouldn’t have eaten that last slice of cake, this stomach ache serves me right.” or “I knew I shouldn’t have made that right turn back there and now I’m lost.”

It’s normal, for everyone but us. Because our lives stopped being “normal” the moment the pain took over. For me, “normal” meant reading for as long as I wanted, even for hours at a time; watching a movie and enjoying the brightness and movements on the screen; walking outside even when the wind is strong; or enjoying the feel of snowflakes falling on my face.

My “normal” for the last few decades has been the exact opposite.

We can’t blame ourselves when normal doesn’t work for us anymore. Our “new normal” is stopping before the pain gets too bad, being honest and saying, “I’m sorry. I can’t do that activity or go with you today.”

To me, my new normal is an awful thing, but the longer I try to deny it, to hold on to my old normal, the harder it is to accept. And it seems there is no time limit for how long you can hold onto the false hope that the old normal will return.

The irony is that the word normal means “standard,” yet everyone’s normal is defined by their own peculiar standards and needs. So, at the end of the day, there is no true normal for anyone but the one measured by their own internal yardstick.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.