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Self Management: Acceptance, Commitment & Sacrifice

Author:
Elizabeth Banfield_written within
(Image: Written Within* by Elizabeth Banfield hand burnished linocut, kozo tissue, thread ©2017)

My sacral stim and I have known each other for a full 17 months now, so I felt it was the right time to make some comments and reflect, again, on this self management business.

Yes, the sacral stim is making a huge difference.

Now remember – I’m talking about my pelvis, my pain experience, my brain, my nervous system and my genes

Three (of my never-ending) realisations for living with chronic pain are that I have to:

  • accept that my life and I have changed – forever
  • commit to a new way of living, and
  • make the sacrifices that it takes to self manage

Chronic pain really blurs life so it takes time to realise the impact (positive or negative) of any treatment or change of activity.

Time seems shorter for me. When I compare myself with full capacity humans, I feel I achieve less and the physical cost is greater.

Not the best value! But it’s what I can get.

The Sacral Stim

The good news is: Continue Reading

Can virtual reality really soothe pain?

Author:

How VR could break America’s opioid addiction

Can virtual reality really soothe pain? Jo Marchant meets the doctors who say yes, and who hope this is a solution for the country consuming 80 per cent of the world’s opioid supply: the United States of America.

“It’s like a crawly feeling inside,” says Judy*. “You get hot, then chilled, and you feel like you want to run away.” The 57-year-old has short dark-grey hair and a haunted expression. She’s breathless and sits with her right leg balanced up on her walking stick, rocking it back and forth as she speaks.

Judy explains that she suffers from constant, debilitating pain: arthritis, back problems, fibromyalgia and daily migraines. She was a manager at a major electronics company until 2008, but can no longer work. She often hurts too much even to make it out of bed. Continue Reading

Who am I going to be – Soula ‘a’, ‘b’ or ‘c’?

Author:
_Sacral_stim

My new stim’s changed everything.

I’m grateful. Can you imagine if the whole process (from trial to permanent implant) hadn’t change anything?

In addition to the stim changing everything, I’m living a whole new life that Theo and I attempted to plan in great detail.

We’re trying to make me the best I can be so we can be… someway, somehow.

Life is unrecognisable and the path ahead is totally unfamiliar. To top that off, I need to figure out exactly how I can best be. I have choices.

Post op

After living with my sacral stim for six months, I can confirm the following: Continue Reading

‘Ouch’ just doesn’t cut it!

Author:

I-feel-so-frustratedAnd neither does repeating, ‘it burns’, ‘it itches’, ‘it’s like fire’, ‘I get spasms’, or the various other words people in pain have to repeat for each consult in the effort to be understood.

Pain Train’s whole purpose is to help patients and their pain management teams communicate beyond these basic words. Pain Train saves the patient the additional pain of having to repeat their history and other related details at each appointment.

Pain Train offers patients a way to also show their friends and family their profiles in the hope they can also better understand their loved one’s experience. Continue Reading

SBS Insight: Ouch!

Author:

Last night SBS’s Insight program aired Ouch! How much pain can you handle? 

I thought the program was great and provided a great broad definition about pain’s many forms and the varying ways it impacts people’s lives.

As usual, I was waiting for a lead. Waiting to hear that someone with chronic pain had found a way out of it and was cured. Mrs Gleeson, I could have bet you were going to say you were fine, after all, you looked it! And so did Lesley Brydon, Pain Australia‘s CEO… how could she be in any pain?

Tonight was the night I was going to hear about my cure.

It didn’t happen.

That made me want to write this post… I want to write to those that felt the slump and weight of the thought that remained with them at the end of the program that went something like this: I’m never going to get better.

It made me want to write, don’t believe it!

Well I don’t believe it, I don’t accept that my body will remain in this rut as long as I live and I believe this because I can see I’m getting better sloooooooowly. Answering the following questions allow me to come to that conclusion:

  • How am I compared to a year ago?
  • How is my activity compared to a year ago?
  • How does my treatment compare to a year ago?
  • How are my pain levels compared to a year ago?
  • What is my creativity like compared to a year ago?
  • What is my work ability like compared to a year ago?
  • How much help do I need compared to a year ago?

My answers;  I am better, more active, having much less treatment, my pain levels are lower, I am more creative, I have sustained my work ability and I need a little less help. There!

It’s not the best answer, a year is a long time but I believe the thinking ‘It is what it is‘ as stated by Mrs Gleeson, almost allows an acceptance, a kind of peace with pain. I experienced that and from there I personally used that calm to pace me back to life.

It’s working.

I believe in brain plasticity, I believe in healing, and I am very well aware our brains are uniquely wired. I’ve always thought, the harder the task, the more committment, sacrifice and discipline required, and chronic pain is definitely the greatest task of my life. I don’t feel there’s another choice for me but to listen to my self, pave my own unique pain management, take in information from programs such as these and their brilliant guest professionals, and just do my best.

I believe I can make my own conclusion to ‘Ouch’… Chronic pain will not be with me forever.

Permission granted and now it’s back to reality!

Author:
Boxing Day Self Portrait For Theo

Or is it possible I never really left my reality? As if anyone can leave chronic pain behind and really have time off!

Sensing the cynical? I best write this post two ways. Technically, the permission ends on Thursday night when we head back to Melbourne so I’m going to post my brain’s two conflicting versions:

1. Crap thinking out-of-the-way first version

Pulling yourself out of life isn’t easy and especially if you’re forced to do it. I was forced and that force keeps on damn well forcing. It brought Theo and I to Tasmania for a four-month ‘sabbatical’ with the topic of research being chronic pain and how to live with it. Truth is, the topic has more likely been what the hell do we do now? It was also meant to somehow help me rid some more pain and pace up my driving, exercise and some daily chores. I was unsuccessful. Continue Reading

Pain Train – Patient health profiling

Author:

About Pain Train — where it came from and why it works

Download this information in pdf format

Our mission

Pain Train’s mission is to enable patients with chronic pain to record and store all relevant information about their pain, and to easily share that information with medical practitioners and others they choose to share it with.

Vision

Pain Train’s vision is to empower health practitioners and their patients, to improve the chronic pain journey.

What you can do on pain-train.com.au

Continue Reading

Melbourne Leader story, Soula bares soul over pain

Author:

The following story was published in support of the current National campaign: Nerve Pain is Different. Please help us raise awareness for those with debilitating invisible pain.

If you think you have nerve pain, talk to your doctor and visit www.nervepain.com.au. Complete the online questionnaire intended to help you explain your pain and take a printout to discuss with your doctor.

Melbourne Leader Mon 1 Dec

Resident shares story of coping with daily agony following fit ball accident

By Nic Price for the Melbourne Leader

SOULA Mantalvanos’ life was up-ended in 2007 when a fit ball she was sitting on burst and she dropped to the concrete floor.

She didn’t think much of it at the time and tried to continue her routine of yoga four times a week and regular walks, but that soon became impossible.

Dealing with chronic pain that made her feel like her “finger was stuck in a power point”, the Collingwood resident was not diagnosed until four-and-a-half years later with severe pudendal neuralgia nerve pain.

As she embarked on a journey of living with pain, Ms Mantalvanos and her husband turned their lives upside down in an attempt to find a better quality of life.

They closed their graphic design studio down (Ms Mantalvanos now works part- time) and even removed doors in their house so she wouldn’t have to open and close them.

“I’ve learned not to lift more than a few kilos, to sit a lot, get in the car a lot,” Ms Mantalvanos said. Continue Reading

Committment, sacrifice and granting myself the right permissions

Author:

Soula In TassieLast week, I attended my last acupuncture appointment and for the first time in over seven years, am therapist free. Hang on, I have to just repeat that:

I am therapist free

Did I ever think this day would come? Of course I did and I believe that’s why I am here.

I have had my moments, but what I didn’t realise through all that heat and whilst pacing like a snail, was that each flare up and pain episode was actually not an indication that pain was here to stay, but rather that it was actually beginning to leave. Although just a difference of minutes initially, eventually I felt the flare ups spreading further apart. And with recognising that change and NOT increasing my capacity past a snail’s shell weight, I began to make progress. Continue Reading

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Definitions of pain

What is Pudendal Neuralgia (PN)?
Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggravated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

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