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Encouraging Self Management

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(Written by me, the founder of {Pain}Train)

That’s easier said than done.

When I first had my accident in 2007 and literally landed in chronic pain, the last thing I expected to hear at any appointment was that I had to manage and coordinate my own treatment.

It was confusing when I was asked what treatment I thought would be best for me to try next – wasn’t the professional meant to guide me?

But a decade later I now finally realise that I was driving my pain management and it was in fact my direction and feedback – from my unique pain experience that was making the difference.

Without the patient reporting their exact experience – which we now know is unique – there’s no way to plan or move forward.

I can’t imagine the complexity a professional faces when trying to help a patient who is unable to articulate their pain experience. But I know this is the general scenario and I know this because I experienced the difficulty of remembering, talking, thinking, documenting, reporting and navigating each minute while living with chronic pain. Continue Reading

Resources for Treating Chronic Pain by the Victoria Pain Specialists (Vicpain) …MY pain team!

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Forgive my bossiness but this post comes from a desperate experience that I lived for 4.5 years. That’s a long time for someone with increasing chronic pain levels and not much hope. I felt isolated and alone in a very foreign world without appropriate treatment, compassion and understanding.

Nine years later, I’m hopeful a situation like mine can be prevented with the knowledge provided in the following resources. Vicpain are leaders in pain treatment and management, I can certainly vouch for that!

Please read the resources, learn them, share them… and if you require information on chronic pain, follow Vicpain. Continue Reading

‘Ouch’ just doesn’t cut it!

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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

Take a seat… if you can!

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Soula's Seat Pile

With Pudendal Neuralgia, or any other pelvic chronic pain issue, it can be impossible to sit pain free (let alone get away without a flare up).

Of course, I’m no pro when it comes to seating, but I’ve learned a lot from my own experience and from listening to the ‘ouch’ in my pelvis. The seating I needed, was most often hand-made! (Have a look at the one my gorgeous father in law made, it’s the stool with adjustable foot rest!)

Although I’ve worn out, thrown out, tried and tested so many more seating aids, I’m showing the ones that have lasted or worked for a while. These are the ones I often resort to when things are getting heated again. Continue Reading

Italian lifestyle, perfecto for Pudendal Neuralgia

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Roman style Anti burst fitball (Image: Now this is what I would call an anti-burst fitball!)

I’ve just come back from Italy. I lived a dream, that’s exactly how it felt. I lived it with my husband Theo. Without him, clearly I would not have been going much further than the Italian restaurant up the road, but aside from the obvious, seems like Italy was a great destination choice.

Obviously there had to be some turning point in my Pudendal Neuralgia (PN) life if I was ever able to think about travelling again and the turning point for me was my stimulation implant.

Just as my senses returned, my dreams did too and my dreams always include travel. That’s what we did every year before my accident, it was part of our normal and fortunate life.

So with my returned senses came dreams, with senses and dreams came diagnosis, with diagnosis came, finally, appropriate treatment, and with the right treatment came great pain relief and some much deserved and needed increased capacity. I feel I’ve arrived on a very high mountain but had to crawl all the way up over 5 1/2 years.

So, here we are on the mountain, I mean, in Italy, and boy did we pick the right place! Not only did we have a divine holiday but we stumbled on what feels like a miracle treatment for my form of PN and that was part of the Italian lifestyle: bidets and siestas.

I set off very prepared having had nerve blocks and begun Endep before I left Melbourne. I was taking a quarter of a 10mg tablet every second day and increased the dose gradually to 3/4 per day by the end of our five-week trip (and by then I was well and truly quite happy to sleep all day even though it was Italy outside. I had to knock 1/4 off my dose).

Five weeks, yes five weeks, with PN I don’t go anywhere, do or see anything quickly. If I’m making comparisons with the old Soula, I need much more time as each 24hr day now is equivalent to 1/3… if I’m lucky! I also have my human walking stick, Theo, and another light, adjustable and foldable one. I had a few hundred gels and insoles with me and left any kind of shoe with a heel on it at home (along with any handbags which I ditched a while back anyway). I also took my ice pack and made sure I didn’t need to carry anything. Yes, you guessed it Theo carried everything, he resembles a mother with a baby bag! Our destination and time of travel choice, Italy in spring, was based on being able to wear light clothes (winter garments add weight which means pain) and accommodation was booked in city centres to avoid any daily commuting. Continue Reading

Dragon Dictate

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How great is this?

Dragon Dictate

Talk to your phone and your computer responds with commands (comma), better still, it types for you (exclamation mark exclamation mark)!! That’s right, I’m lying down now and speaking to my phone and I can see my cursor moving and my words appearing (full stop). Very happy (comma), thank you Dragon Dictate (full stop).

(Category colon Learn Professional Resources Publish)

How do I do it?

Author:

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

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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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