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How do I do it?

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Absolutely nothing great about having to live by these rules but it certainly saves me alot of extra pain, I have more up time and, above all, I decided this is just temporary. I’ll do what it takes to get by most comfortably (if I can dare to use such a word for a chronic pain site!):

  • Write in my journal, release frustration there
  • I found relaxation techniques (from foot rubs to breathing, showers, smelling flowers, etc)
  • I learned and practice Alexander technique
  • I have regular massages with the same practitioner (cupping included)
  • I accept help
  • I lean/rest everywhere, even on traffic lights, I use my elbows on the table (who says its rude?)
  • I have a walking stick for a more difficult outing (like travel or gallery visits)
  • I sleep in, rest, nap or all at different intervals throughout the day
  • I have insoles gallore! I insert a heel gel under my shoe’s sole and then insert a full length Crock sole ontop of my shoe’s sole
  • Limit transportation as much as possible
  • I’ve made home super comfy and as happy as possible, things within easy reach and as light weight as possible (plastic fantastic!)
  • I’m totally setup on the internet so I can communicate to all my friends and family and stay in the loop with my great loves, design and art
  • I accepted more help
  • I shop online
  • I bought a smart phone (allows me to travel much lighter, play mind strengthening games, use resourceful apps, stay creative with photography, social networking, keeps you in touch with the world etc etc),
  • Sadly, packed away the g-strings for now and replaced them with nice full and firm underwear. Nothing synthetic or too tight
  • Keep the ice pack and heat pack handy at all times
  • I’m strictly keeping my weight down (the cruelest of all, as if being in pain isn’t bad enough I have to diet!!!!!!!!!!!!!!!)
  • Do my own research at all times, keep up with my condition’s progress
  • Listen to my body
  • I write, read, draw, learn, whatever, I find some short, light, flexible duties
  • I take part in my community as much as I can (gallery openings, have a coffee with a friend, simply bump into neighbours while walking, post a letter, even though it hurts I still go out for dinner, a drink, anything I can manage)
  • I accept even more help
  • When I feel like I can handle the pain, I move, do a little dance, whatever I just do it!
  • I understand that everything I do counts, even a sneeze (ok they count alot!) so I make sure I pick and choose what I do
  • I learned and practice the word pace
  • I’m more selfish
  • I say “I can’t” and recently I’ve even stopped apologising because “I can’t”!
  • I let go of obligation (actually I need to work on that one)
  • Keep any visit short, close, soft (not too many parties unless you can walk away)
  • I email my WorkSafe case manager to eliminate hearing all unnecessary hogwash
  • I have a daybed and made a ‘dayspace’ no where near a television or my bedroom
  • I have a dog, he’s one of my biggest aids

My family, Theo, Origin of Image and Zephyr

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How do you cope, how do you keep the smile on your face, you don’t look like you’re in pain, you’re so strong, but you don’t look like you’re in pain, how did you manage to do that? etc etc.

These are some of the questions and comments I hear all the time. There isn’t one single reason I can give for ‘coping’, I think a few things play a role (and my personal list of rules). The biggest of all, I believe is my own brain’s chemistry and built in ability, something I don’t believe I have control over and was born with (and how greatful I am for this ultimate survival gift!), but coming in second, or even on par, is my husbandly support, Theo. I don’t know what I would have done if Theo hadn’t understood my pain and my eratic injury and hadn’t supported me 200%. Seriously there were days I thought I was crazy, I kept asking myself was there an underlying reason to cause all this, I couldn’t work myself out – why the pain came, went, intensified, flared up, basically took control over me with various activities. It’s hard to explain, it’s hard to live with and I think its very hard when you have to stand by and when you can’t help change it, help stop the pain, just watch (and that’s the short of it!).

And there was Zephyr too, our Jack Russell, who was walked and exercised daily (sometimes twice a day) who suddenly couldn’t go anywhere. I hear alot how, family of course, but also pets can go out in sympathy for their loved ones, and I’m not saying this is our case, but Zephyr did acquire lower back arthritis which was very unusual for his 4 years of age just months after my accident. Also, strangely, when I was diagnosed end of last year, he showed signs of recovery and didn’t need his monthly shots (he’s still on half a cortisone tablet every second day though).

Origin of Image (OoI) continued after my fall, as I did, assuming my injury wasn’t anything serious and I’d recover in weeks. I moved my computer to a higher bench and worked alternating between sitting and standing, eventually on towels (now I know it was to soften the pressure on my heels) and I would lie down when the pain worsened… then get up again. As far as I knew I had no fracture so as long as I could tolerate the pain I kept going.

In under a year’s time I wasn’t coping and we hired a graphic designer. We hoped I’d recover in the meantime and I’d return to an upgraded 3 person studio but I didn’t and we had to make the decision not to renew our employee’s contract and instead attempt, what resulted in, an unssuccessful merger. This wasn’t a surprise, Theo and I were the only formula for OoI… we decided to put the company to sleep and not risk letting any of our loyal clients down. After having lived, worked and played from one location for 8 years Theo had to find employment, and I was home (with Zephyr), a huge lifestyle change we simply had to adjust too. I didn’t, instead I found I actually needed daily help and my pain levels were rising and capacity and hopes fading.

Theo was employed for just over a year when my peripheral stimulation device was implanted. This was my reviver and I saw a great change in my pain levels and because of this, of course I could think, I had my senses back and a bit more capacity. We realised the implant was a great opportunity for progress so we decided to pull out all stops and head to the country for a year to concentrate on my rehab. Theo was going to be around to help, I was going to focus on pacing up my activities totally, no social responsibilities, just focus… and Theo could possibly service a few clients, again hoping we were going to make some progress and come back to our darling OoI.

We came so close, we were looking for property in the healing lands of Hepburn Springs when I read The Brain That Changes Itself. Amazing having pain relief and being able to read a book, and focus, and remember, and think, it can bring incredible relief, (not to mention prevent another major upheavel) and most importantly set you back on the road towards the brilliant life you had.

Download the full story: My story of my struggle with Pelvic Chronic Pain (since March 2007)
Related Posts
My pre pain life…
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

My pre pain life…

Author:

…was bliss…. filled with endless activity and huge lists of ideas and tasks that were always completed. Who had time for a book or television (actually I still don’t make time for television)? I was active, I had capacity, boundless energy to execute my creative thoughts (and meet the expectations of a full social calendar!). I worked veeeeery long and wonderful days, I walked everywhere, lunching, dining, starting every day at a local cafe, picking up art materials, walking the dog, running the dog, to Carlton, the city, Fitzroy, I skipped through the streets of the great arrondissements of Paris when on annual holidays, and swore by my four day a week yoga routine that unravelled my body and had me feeling like Gumby warm to the ends of my extremities… There was no ‘tired’, ‘sore’, ‘fatigued’, ‘have to rest’, there was no ‘pain’. Like I said, life was bliss.

Our (husband Theo’s and my) small graphic design company, Orign of Image was in its 8th year and running beautifully, I had already had two solo exhibitions and completed most of the works for two more shows, I worked hard and we entertained a great social life (not to mention a very pricey art hobby). In fact, my beautiful printing press was delivered the day of my accident. I’ve been drooling over it ever since, only having snippets of capacity to ‘play’… (but Theo’s had great fun with it and kept my prints and art going).

These are examples of my art work. See more on my websites soula.com.au and soula.com.au/blog.

Related Posts
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

Who says I can’t travel?

Author:

I know I might be clutching at straws again but at the very least 360 cities is some great distraction and very light in capacity cost. And it’s great planning for next time I have some serious pain relief (like a nerve block). I’ll be off like a rocket! Ok, maybe not a rocket but compared to the usual pace it’ll feel like it.

First stop: Paris!

Why a flower?

Author:

Chronic pain is a waste of life’s precious time, its a huge hold up. But if you have to deal with it then you have to find a way to cope through the awful journey and survive it.  Before my precious implant (Professor Teddy I love you!!), I couldn’t move much without pain, everything hurt and it hurt all the time. And yet, my gorgeous friends and family kept telling me ‘but you look so good for someone who’s in pain all day!’ (Uum… thanks??). The flower really expresses it perfectly for me.  I have limited use of my hands because I can’t rattle myself or lift more than a kilo (on a good day!), sitting is most difficult and my legs can’t do alot as they seem to bug the issue, so here I am, planted in this life to just sway…

And please, don’t for a moment think that I don’t think of those who are more severely impaired or perhaps don’t have the support they need. To be honest, its this thought that motivated me to put this site together. I have a lot of help from my husband who is currently trying to re-setup our business from home and not only to help me, but to give me that bit of capacity for some essential Occupational Therapy (yes, to draw flowers!).

Sometimes it just helps to hear or read that someone understands you or that someone is feeling ‘like a flower’. And they can be a stranger… or even a website!

Read more…

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

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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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