Looking for Something?
Browsing Category

My treatment

Depressed? You have to be, you just have to!

Author:

Oh most definitely, you have to be, no doubt that’s what the medical template says so that’s how it is! OOOOh my goodness and you nap, you sleep every day? Well there you have it. You’re depressed!

. (full stop)

Actually, no, not everyone who deals with chronic pain has depression and I know that because I don’t have depression. Well that’s what I think and believe me, I’ve been checked out thoroughly!! But I understand how people who are unlikely to get depressed, get depressed with a chronic illness (and I believe the chances are even higher if you have a WorkCover claim).  After hearing the insistence from almost every practitioner, reading that it is partner to chronic illness over an over, having pounding pain, being unable to do much at all, having endless frustration from limiting WorkCover system, and financial stress, added to all the offers of pain relief (mostly in the form of antidepressants), of course the pile adds up to depression.

But…

In my experience, the term ‘depression’ is used waaay too loosely these days and the medication for it is given/taken too hastily. I realised I had a long-term issue but believed I wasn’t depressed so I needed to find the source of my problem and stop hoping, by taking the antidepressants/nerve inhibitors prescribed to me, that the issue was going to clear itself up which is what Western medicine seems to pride itself on (take a few of these, she’ll be right mate!).

Why can’t I be ‘upset’ or ‘tired’ or ‘fatigued’ or ‘dealing with something’? I felt depression was too extreme for me? I didn’t like it, I believe in thinking positively (and could see I had the ability to still do that through all the frustration), so I accepted that some days were going to be more difficult, I’d feel down, fatigued, tired… medication wasn’t the option on those days for me, I thought I’d just end up in a bigger mess.

I took antidepressants/nerve inhibitors (yes together!!) for about 9 months to try to sort my issue out and at least ease my pain (yes, Western medicine style), but I could have been on them for the rest of my life if I hadn’t realised (with the 1% brain capacity I had left) that there were other things to try. And again, I refer to my help and great support, my husband, who is just as focused on my issue as I am, so I was able to try other options, use the time on the meds to dull the pain and learn what not to do to keep pain levels low, and then… get the hell off them!

I remember friends, family, practitioners asking me how I was… how am I?, I didn’t know who I was let alone how I was!!!!!!!! I couldn’t cross the street, had to turn spell check on my computer, couldn’t speak from the piercing ringing and sound of my own voice bouncing in my own ears, couldn’t go out, couldn’t coordinate myself, I thought everyone who drove was going to kill themselves I was so disoriented, and I couldn’t choose between three apples if you asked me to! If you told me I was cured or that my husband died I would have reacted the same way, I slept like a dead person, had no energy, I took a huge dive into the deepest of caves.  Actually to sum it up folks, I was depressed… yes, on the antidepressant. That was enough for me to see I didn’t need that sort of medication. There had to be another way.

I know, what I’m about to say will seem like clutching at straws, but bundled together Soula’s top tips were my great preventative against taking those ‘depressing’ antidepressants. I have to point out, this is what works for me, it’s not a recommendation.

The basic rule is eliminating the pain as much as possible so the flare ups, fatigue and tiredness eases. I also see it as ‘beggars can’t be choosers’, and I’m a beggar for non zombie relief! I took the tougher road now for longer term benefits. I say NO to antidepressants for pain relief and am my more non depressed Soula self.

Art and distraction

Author:

My creativity has been one of my main coping mechanisms through my chronic pain life. It’s the place I go to feel free, release the steam, express my pain, and to get distracted to the point of pain! But it’s worth it every time. There isn’t a lot I can achieve with my capacity so one drawing, one painting over months, one post on my blog… anything, it’s all worth it.

Art helps with many health issues, even if you can’t participate, finding a piece that connects with you can also be helpful. And it’s something you can do from your own comfy seat (if you have one, I’m yet to find one!!).

Here are a few art sites that you can either contribute to or simply subscribe to for regular, beautifully distracting, updates. They are not all related to pain, I, for example try and avoid talking or expressing pain and rather choose to paint my happiness, it just feels like I don’t get away from the issue otherwise. I also prefer to seem like the old me, it’s my target. I like saying the words ‘I painted, I did, I am going to’ without having to add the ‘it took/will take me ages’.

Soula (my art)

I’ll start with my website: soula.com.au and my blog: soula.com.au/blog

redbubble.com

Gallery of Pain. The Art of Releasing Emotional or Physical pain..Ambience of Pain.

PAIN Exhibit website

Thank you for visiting the online version of the PAIN Exhibit, which showcases approximately 100 pieces of art from people with chronic pain from across the globe.

Artwhatson

artwhatson.com.au is a meeting place for art lovers, artists and galleries. Our e-news delivers a weekly snapshot of what’s happening in Australian art.

jennierosenbaum.com
facebook.com/contemporaryfigurativeart

Jennie works to maintain the image of the nude in art and writes a blog about censorship in art. She also leads a group for artists with disabilities.

Life Beyond Pain

Personal stories of struggle, strength, and success expressed through art.
Living Beyond Pain showcases the challenges of, and responses to, chronic pain in daily life. It contains artistic expressions of success—real stories of coping, managing, and moving beyond pain.

Kurt Wörsdörfer (Headcrime)

To the German artist, known in art circles as “Headcrime”, music provides instant visual associations. Literature, history, art, archeology and, unfortunately, life experience with chronic pain, influence his work.

dotsandyarn.wordpress.com

Music, Opera, Knitting, Food – the essentials as far as we are concerned.

smlacyart.com

Art opens up something inside of you that sometimes you forget is even there. Art transforms. It brings hope, peace and possibility. It brings life.

Arts Project Australia

Diagnosis: Physiotherapy at the Women’s

Author:

It felt like a miracle and took all of about 15 minutes for the physiotherapist (at the chronic pelvic pain clinic at the Women’s here in Melbourne Australia) to give me her French infused explanation that my pain was most probably coming from my Pudendal Nerve (yes, a name, I had a name!). It took another 15mins for her to put me in on my back (I never lay on my back as it was too painful) and apply a pressure/postural technique that switched my pain off! (Yes, OFF… calm, silence, stillness, roar gone, no spasm, quiet, peace)… unbelievable but this is true.

I won’t go into much detail about how I felt, there really isn’t any way of explaining the relief of having a roaring pain that’s been halting your soul for 4.5 years, identified, clarified, acknowledged, manipulated with a single finger’s pressure point. I can’t explain how it felt to finally know (not hope or dream) that I will eventually become the best I can and that I finally found a practitioner and therapy that was going to help me. I could almost see my issue in the palm of my hand (before I was in limbo and had to come up with my own names, I won’t write them here!!).

What I will describe though, is the language, empathy, understanding and thorough explanations that I have had during my appointments so that anyone else in the same situation will know exactly where they need to go (Actually I’d be surprised if you were still reading! Taxi!! Physiotherapy Department, 1st floor Grattan Street & Flemington Road Parkville VIC).

My conversations have gone something like this:
Me: I haven’t told anyone this but there’s this short denim skirt I have and whenever I wear it I have a less painful day…
Physiotherapist leaves and comes back with a pregnancy/baby pressure belt that is adjustable either side. Et voila, a support for the pelvis adjustable to my requirements which was not so tight over my implant and uninjured side.

Me: In winter, I’m sure it hurts more to walk because my boots are heavier than shoes and I’m wearing a heavy coat.
Physiotherapist: Yes, weight is pressure for the nerve.

Me: I’m on fire today, I have all this burning, like fireworks going on.
Physiotherapist: lies me prone, applies pressure to a pressure point, fire put out instantly. This is a flare up.

Me: I feel like I have my finger stuck in a power point, I have a surge up my spine, the rattle of a tram or car drives me crazy, and don’t scare me or I’ll drop, my legs get weak and I can’t move….
Physiotherapist: Sensory pain.

Physiotherapist: How is your pain now?
Me: My pain is good now.
Physiotherapist: Laughs… but doesn’t really find this funny. Pain is never good.

So now when I have a physiotherapy appointment, instead of blank stares when I attempt to describe the fine details of my pain and activities I get clear descriptions for every point I make, in fact I even get a diagram and descriptive explanation, drawings referencing my insides, url links, and best of all, solutions in the form of techniques to release my pain, positions to release my entrapped nerve, even my husband gets attention, empathy for the difficulty he endures, he is shown the pressure points and techniques so he can help as accurately as possible (therefore finally finding peace for himself!!). I even had an explanation about my extracted ligament and septum, she’d seen it happen with trauma (pregnancy or birth) to the hips.

Finding this wonderful therapist leaves me in a very positive position too. I never had options before, I was told: go home and make yourself comfortable, but now I can calm my pain and I still have further treatments to explore depending on how I progress and this is thanks to the few specialists that have insisted on researching and learning about peripheral neuralgia and not ignored it leaving it a psychological condition or the more general we don’t know with back pain.

Read more about The Women‘s Physiotherapy Department.

Related Posts
My pre pain life…
My family, Theo, Origin of Image & Zephyr…
The big bang injury…
The way relief started…
The way relief continued…
Building Blocks…
Next stop: Traditional Chinese Medicine…
Soula’s PN Weather Update…
My practitioners

My list of practitioners

Author:

The most supported I’ve felt is when I’ve come across a practitioner who listens and wants to work with me specifically. I mean really take note of what’s going on and want to learn themselves too. Chronic pain is still so difficult to understand, and of course I can’t recommend or even suggest that my experience might be a solution for someone else but I can provide the contact details for ‘team Soula’.

Stage 1: The Search
Dr Harry Crock, retired
Mr Roy Carey, East Melbourne
Professor Michael Quinn The Women’s, The Royal Women’s Hosptial, Parkville
Pond Massage Water Wellness P/L, Collingwood
Pam Frost, Massage therapist, Inspiral Bodywork, Fitzroy

Stage 2: Implant
Dr Kathy Yu, Melbourne Sports Medicine Centre, Melbourne
Pam Frost, Massage therapist, Yoga Healing Centre, Fitzroy
Professor Teddy, Neurosurgeon, Precision Neurosurgery, Melbourne
Marilyn Lock, Knowbody Studios (Holistic physiotherapy), East Melbourne
Pam Frost, Massage therapist, Inspiral Bodywork, Fitzroy

Stage 3: Diagnosis
(All stage 2 practitioners)
Robert Postlethwaite, Psychiatrist, Freemasons Medical Centre, East Melbourne
The Women’s – Anne Florence Plante, Physiotherapist, RWH Physiotherapy department, chronic pelvic pain clinic
Dr Peter Courtney, Melbourne Pain Group, Glen Waverley
Pam Frost, Massage therapist, Inspiral Bodywork, Fitzroy

Stage 4: Treatment
Dr Peter Courtney, Melbourne Pain Group, Glen Waverley
The Women’s – Anne Florence Plante, Physiotherapist, RWH Physiotherapy department, chronic pelvic pain clinic
Raffaele Vavala, Traditional Chinese Medicine, 4a Mitchell Street Northcote
Pam Frost, Massage therapist, Inspiral Bodywork, Fitzroy

Related Posts
My pre pain life…
My family, Theo, Origin of Image & Zephyr…
The big bang injury…
The way relief started…
The way relief continued…
Diagnosis: Physiotherapy at The Women’s…
Building Blocks…
Next stop: Traditional Chinese Medicine…
Soula’s PN Weather Update…
My practitioners

The way relief continued…

Author:

A few months into my implant and I felt like I was human again… my senses were back and it was incredible!! That thick pain fog was lifted and I could taste, smell, see, concentrate, focus, remember, listen, think, plan, dream, enjoy, laugh, read, oh what bliss!!!! And I also realised that the anaesthetic gives great long-lasting relief to my nervous system.

So, clearly it was time for research. Here I was for almost four years thinking my issue must have been motor/mechanical but still considering Regional Pain Syndrome, Pain loops etc along the way. I picked up a book my massage therapist, Pam Frost recommended: Norman Doidge, MD | The Brain That Changes Itself. The book referenced Dr Lorimer Moseley and mentioned something along the lines of him extending the ‘mirror box’ experiment and stated he was Australian!

So I googled… I found an ABC interview with Margaret Throsby that I had actually heard before but not remembered, and many many email addresses for a point of contact. So I wrote… I thought either I can help myself, I can help Lorimer (yes, we’re on first name basis now!) or both! Lorimer’s reply was simple: ‘…tell me roughly where you are and i can link you up with someone good’. And boy did he!!

Continue Reading: Read what happened next…

Related Posts
My pre pain life…
My family, Theo, Origin of Image & Zephyr…
The big bang injury…
The way relief started…
Diagnosis: Physiotherapy at The Women’s…
Building Blocks…
Next stop: Traditional Chinese Medicine…
Soula’s PN Weather Update…
My practitioners

The way relief started

Author:

During 2010 I visited a pain specialist who was treating me with acupuncture and this specialist suggested I have an epidural injection in my lower spine to see if I might have pain relief and if so continue with one or two more consecutively.

I went to visit my Orthopedic Surgeon, Mr Roy Carey for an update (and dreamt he was going to say, ‘we found the cure for chronic back pain’ which he didn’t of course), but also to discuss the injection idea and he recommended to aim the injection more specifically into the coccyx.

I had that done and my pain relief was only from day two to about day four. But this was enough for Mr Carey to understand my pain issue was not mechanical but rather neuropathic. He referred me to Professor Peter Teddy (professorial fellow in Neurosurgery in the Department of Surgery at Melbourne University) at Precision Neurosurgery.

Prof Teddy listened (and heard!), asked for one more scan, then took my scans, and presented my case to an international conference of surgeons, and also back home to the Department of Surgery at Melbourne University. The suggestion was, rather than take drastic action (which I was willing to take at that point I was so desperate) and remove my coccyx, that we first try a Peripheral Nerve Stimulation device?

In my case, the procedure was much less complicated as I didn’t need the leads to go through the spinal canal but rather along the right side of my sacrum and coccyx. There is a trial period in which the unit sits outside and is ‘plugged in’ via the leads that, yes, are sticking half out/half in your body. Look I know that might sound gruesome to some but please… we’re talking about chronic pain here… it was nothing. A cinch… it worked, it’s in now and giving me great pain relief.

But that’s my experience. This is an operation, infections are a serious consideration here (so is the anesthetic effect, weeeeee!).

This x-ray is me now!!

Continue Reading: The way Relief continued…

Related Posts
My pre pain life…
My family, Theo, Origin of Image & Zephyr…
The big bang injury…
Diagnosis: Physiotherapy at The Women’s…
Building Blocks…
Next stop: Traditional Chinese Medicine…
Soula’s PN Weather Update…
My practitioners

The big bang injury

Author:

It wasn’t enough that I kept active by walking the dog every morning, practicing yoga 4 x 45 mins a week, occasionally running the dog a little at the park in the afternoon to break up the day, walking to Fitzroy, Richmond, the City, Carlton, local cafes, dinners, outings, long drives and worked by day and was in the studio by night (whenever we weren’t socialising), I thought I sat too long… so I bought a fitball to make sure my chore stability was being cared for while I was sitting. Hmmm. All was going well until my (antiburst) fitball burst! I fell to concrete flooring in a split second (or as my husband, Theo says, I seemed to hover for a split second before going down).

This was the ‘major’ event that changed my life and 5 years later led me to putting this site together. Still to this day, I can’t believe that ‘bang’ was severe enough to have actually stopped me. I seemed to think I was a little invincible, well I never had any issues before, not one sick day, I was convinced I’d be fine in 8 weeks after having an x-ray that even though looked awfully cloudy to me, came back with fractureless results. But that’s all that was checked. No MRI, no pelvic scan, no SI Joints… after all, it didn’t seem like such a bad accident.

I went back to my Doctor when the 8 weeks were up still complaining of pain and that I could feel something about 2 inches behind me into the right buttock, as if someone had put a thick needle in there and my doctor thought I should be checked out by a rectal surgeon. All clear again, nothing wrong with the coccyx but mind you, hellish pain when I got home and for the next 24 hours. The examination sent me into, what I recognise now, is a flare up. I was confused… how can ‘nothing’ be causing so much pain.

I continued trying to work, deteriorating while my pain increased and with my aids building up around me. I stood on towels to minimise the sensitivity that was getting worse every month, I lay down more, The flare ups were increasing, I tried Massage, Acupuncture, Feldenkrais, Hydrotherapy, a Chiropractor, Pain Management Centres, Psychology, I found an Orthopaedic Surgeon who did extensive x-rays finally and they came back pretty perfect (minor disc bulge)… I was at my witts end. All I was stuck with was a tremendously impressive medical CV!!!

I reached the point where I could no longer stand bare foot, could not lay on my back, had to sleep every day for 1-3 hours to calm the nervous system which was the only way to lower the pain, everything hurt. I stopped working..

In May 2009 I had a follow-up MRI that showed I had a retroverted uterus. This doesn’t mean much more than I have a retroverted uterus, apparently women have either retro or antiverted and actually both as it should move with our motion, but I remembered that I had an antiverted uterus and thought to check it out. My brilliant gynecologist, Professor Michael Quinn (Lifesaver: Ovarian Cancer Testing) who felt things were just a little too tender, whipped me in for a laparoscopy the following Monday.

Of course I thought I was going to be cured. Had to be something simple…

Findings: A very thickened rectovaginal septum and a thickened left uterosacral ligament also. The septum was resected.

I woke up on my back. And strangely extremely relieved to hear that there was something wrong and it was dealt with. The laparoscopic procedure had me in recovery mode for about 5 weeks but I lost the feeling that a 2 inch needle was inside me, I was sitting, I had very little pain, still tender when I sat, but my heel sensitivity was gone and by 7 weeks I could shake myself and it felt wonderful. I went back to Professor Michael Quinn, I told him he cured me to which he obviously replied, I couldn’t have cured your back pain.

I had 3 blissful months before some serious pain began again. Seemed as I increased my capacity another onion layer surfaced. By January 2011 I didn’t know what to do with myself again.

Continue reading: The way relief started…
Download the full story: My story of my struggle with Pelvic Chronic Pain (since March 2007)

Related Posts
My pre pain life…
My family, Theo, Origin of Image & Zephyr…
The way relief started…
The way relief continued…
Diagnosis: Physiotherapy at The Women’s…
Building Blocks…
Next stop: Traditional Chinese Medicine…
Soula’s PN Weather Update…
My practitioners

Subscribe to my newsletter

Subscribe to my blog posts

Enter your email address to subscribe to new posts by email.

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…

Pain Train my online health record. New SPECIAL price $14.95 per year

Save

Save

Save

Save

Save

Order my book $31 (inc. postage)

Archives