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ADF campaign: Losing Yourself in Pain Medication

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The Alcohol & Drug Foundation (ADF) has been working to enhance awareness about the way Australians consume pain killers.

My understanding of the campaign is that the ADF in no way suggests pain killers are not necessary – many Australians require their medication to manage their health issues – but patients should investigate other options and be informed about the effects of taking these medications long-term. They should not be recommended as a first resort.

Within a few months of taking chronic pain medications, I realised it was not a long term plan for me and was thank full to be able to find other forms of treatment that could help me survive chronic pain day-to-day.

Mamamia: My experience with medication

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Mamamia_0794

It’s time we talk about the addiction killing more Australians than heroin and ice combined.

(Excerpt from mamamia.com.au. Story by Caitlin Bishop)

Soula Mantalvanos was 37 when she was sitting on a fit ball and it burst. She landed on concrete, hard.

“It was a split second. It was bone to concrete and it felt that way. I was in shock and then thought ‘I can’t move, I can’t move’. Slowly, I turned over and crawled to the carpet,” Soula told Mamamia. 

Before then, Soula walked everywhere. She lived with her partner in the heart of Collingwood, Melbourne. They would walk to see friends, walk to dinner. Soula did yoga four times a week. She could hold a shoulder stand for eight minutes.

Soula Mantalvanos. Image supplied.

“I had a full life, creating art, working as a graphic designer, travelling overseas once a year. I had no limits. Now, my life is 30 per cent of that,” she said. It’s been 10 years since the fit ball burst.

Soula went to the doctor, was given pain medication and told to come back in eight weeks if the pain wasn’t reduced. Yet it worsened.

“Nerve pain, of course, doesn’t show on X-Rays,” she said. “It took me four and a half years to receive an accurate diagnosis. The pain would come and go with no routine. I would be fantastic one minute; the next I was spasming, burning, couldn’t function.”

Soula damaged the way her pudendal nerve, which stems from the sacrum and is responsible for motor supply to the pelvic muscles, signals the brain. When she sits, drives, lifts something, or moves suddenly, the nerve creates pain signals for no reason.

“I tried Lyrica (anti-siezure medication), nerve inhibitors, Tramadol (an opioid),” Soula said. She couldn’t work. She tried lying on her stomach on the studio floor, unable complete more than 15 minutes of work at one time.

“I took anti-depressants but these lowered my mood overall. My pain levels shifted constantly, and my GP told me to increase the dose of pain medication until it felt better.”

Soula became dependent. “I shrunk as a person. The medication fogged my mind. I couldn’t cross the road. I had to activate spell check on my phone. I didn’t have the ability to think properly any more,” she said.

“The most horrific part of this was the breathing. I would wake up in the middle of the night and realise I hadn’t taken a breath in ages. I would take a huge breath and start to panic.”

Read the full story…

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Suck it up and smile – it’s holiday time!

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Yippee!! Not! It’s too hard.

I was dreading Christmas – like I usually do. And I’m dreading New Year’s eve and day – as I usually do. And even though I would regard myself as ‘experienced’ and loaded with the best treatment possible, there seems to be no way of avoiding pain during holiday time.

Suck it up!? Um…,

No!

And that word my dear readers, is how I manage this holiday time.

I’ve learned it so well now it just rrrrrrrolls off my tongue and I loooove it because it’s always there for me and it keeps me HAAAAAPPY.

Here it is again:

Noooooooo

And with that comes,

I’m sorry, I can’t do ‘that’

With the truth being, I definitely can do ‘that’ but I have chosen (well sort of voluntarily obviously as I didn’t plan this bizarre accident) not to, because I don’t want the pain levels during – and after – I do the ‘that’.

There.

But of course it isn’t so easy. There are a few sad bits that come with ‘no’. Continue Reading

Adventures of a stim controller

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Ever wondered what a stim’s controller’s day looks like?

Firstly, let me clarify that I’m talking about my Boston Scientific Sacral Stimulation Implant controller (BSSSIC), not my St. Jude’s Peripheral Stimulation Implant controller (SJPSIC otherwise known as, the one that saved my life).

I’m experimenting at this 7 month post implant stage in order to figure out whether I need the SJPSIC by not using it at all. Two devices in one backside cheek is quite tricky at times. Someone without a chronic health issue would probably complain endlessly as this situation does have a few uncomfortable limitations. For someone with a chronic health issue though, that side of things, is a piece of cake in comparison – almost welcoming when you think of the benefits that come with it.

And one more thing, before I go on – no! I won’t turn both on for your entertainment purposes.

A controller has a fair job to do – it’s committed 24/7. Continue Reading

Time to exercise – but how?

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It took six full months for me to feel I was ready to have my follow up appointment with Dr Nick Christelis after my Sacral Stimulation Implant.

I got a few ticks at the appointment:

  • Device incision healed
  • Leads incision healed
  • Both areas feeling cushy and a bit more robust
  • Honeymoon period helped with setting up the new life
  • I’ve learned a few of my new limits

I also got a few concerned looks expressing the following:

  • I’m more fatigued
  • I’m sad
  • I’m feeling like I can’t get up in the morning
  • My mood is really low
  • I feel I’m slipping
  • Sleep is a bit more disrupted than usual
  • I’m waking up anxious, breathless

We had a good chat. We agreed alot – especially about the need to find a way for me to exercise. I’m resting less now – no longer napping in the afternoon (a great thing!), so that means I’m moving more. But my heart rate isn’t really going up. It needs to.

In the nine years of chronic pain, I’ve tried a squillion routines and tricks in the attempt of finding some way of exercising without painful consequences.

Anything I attempt seems to translate as ‘too much pressure’ on my pelvis.

To understand what I mean, just imagine the feeling in your muscles after you’ve worked out at the gym. The muscles scream the day after (for various reasons). And the day after that – even more so.

But in that normal circumstance, the pain goes. With chronic pain it doesn’t go, in fact it manifests.

With PN there’s a further impact – signals and functions are affected and I get pretty uncomfortable. One thing leads to another and if I don’t listen to the signals, before I know it, I’m in a fire ball.

I’ve learned to listen (had a few nerve blocks, sat in loads of cold running water) and thankfully the fire balls don’t happen anymore. But other uncomfortable things still do happen – I just have to find another way.

This is what I’ve tried:

  • Walking in various amounts, strides, shoes, places, times and tracks
  • Yoga (which I sometimes practice but can’t sustain regularly)
  • Stretching (forget that!)
  • Various slow/resistance movements
  • Hydro therapy
  • Clinical Pilates
  • Meditation (not exactly heart rate lifting)
  • Dancing

Not only is none of the above possible but even if I could partake in any of the above (in my butterfly way), I’m hardly going to get my heart rate up enough. 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

Mark of hope?

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_ Mark of hope_Soula Mantalvanos QGW Lettered print exchangeQueenscliff Gallery & Workshop (QG&W) organised the Lettered print exchange.

A Print Exchange is when artists submit works to a set theme and they exchange each other’s work, each artist keeping a complete portfolio.

An exhibition is held and only a few of the editions are for sale.
Continue Reading

It’s your patient duty

Author:

I’m guessing this isn’t going to be my most popular post.

I know it won’t be because I view my website and the social media stats and both indicate whenever I blog a ‘to do’ or a ‘too hard’ kind of blog you all seem to drop off.

I completely understand. Continue Reading

I made a gallery

Author:

True! Theo and I made a huge life move as many of you have read.

Our transition began over a year ago when we escaped to Tasmania to figure out how to manage life with chronic pain.

It was the best thing we did even though terrifying at the time.

In just over a year, we have spent four months in Tasmania, returned to our dear Collingwood, sold our warehouse sanctuary, removed ourselves from our main business (as it was impossible for me to do the previous design work), planned a new lifestyle, and began a new venture with the utmost faith and backing of some very dear arty friends and some special few design clients.

Again, terrifying. Continue Reading

My pain management is turning into a thesis!

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It’s taken almost 9 years but I’ve realised that chronic pain requires alot of study – dare I say never-ending study? I believe my research for pain relief for chronic pain may be paving the way for a thesis!

I’ve had a good chat and stare with myself in the mirror, allowed the gut feeling to sink (for just a few seconds), called on gratitude, and here I present to you (with a backside that will soon be comparable in value to Jlo’s) another section of Soula’s Pain Management thesis.

Let’s call it Chapter 4 (approx.)

Patient: Soula (me) Age: 46 (& a few days) Chronic pain since: Mar/07 Injury: Drop to concrete floor from exploding fitball Continue Reading

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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 aggrevated 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.

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