Am I excited today! As I progress this path of pain, I retain my non-negotiable pointers – one of which is my need for my custom made seating aid. I would love to ditch this damn thing from under my backside and from my clutch every time I go out for a seated event, but it's just too valuable for my capacity. Figuring out the big 'dangers in me' (remember we talked about DIMS and SIMS ?) has been key to my pacing forward. Regardless of scientific facts, magic, religion, brain chemistry, astrology, whatever you believe causes pain, what I know is that when I place my backside on a hard surface it hurts a great deal. Hurts a great deal more afterwards too. And it becomes an even bigger deal if I persist. In actual fact, it's the impact of my tail bone touching the seat that causes the pain. Whatever. Let's move on... Foam has been hard to find... until now! Hello Foam Sales Foam + Polystyrene Solutions in Western Australia!! And I had to share this glorious resource because anyone, anywhere can order this stuff in any sheet size, customise shapes (I nearly sent a pattern of my backside in... perhaps I will!) various thicknesses, softness, hardness, you can get your name printed in it... and it's all available to order online (Soula gets to enjoy the benefits of avoiding another DIM – commuting)! I'll write home when I get the EPE and the EVA orders and give them a good test run (I've had a lot of foam deflate over my 12 years!). But please remember, what works for my toosh may not work for yours! Until then, hit the button* and start your own investigation! [fusion_button link="https://www.foamsales.com.au/" text_transform="" title="" target="_blank" link_attributes="" alignment="" modal="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" class="" id="" color="default" button_gradient_top_color="" button_gradient_bottom_color="" button_gradient_top_color_hover="" button_gradient_bottom_color_hover="" accent_color="" accent_hover_color="" type="" bevel_color="" border_width="" size="" stretch="default" shape="" icon="" icon_position="left" icon_divider="no" animation_type="" animation_direction="left" animation_speed="0.3" animation_offset=""]Foam[/fusion_button] *No vested interested in recommending this product/company

Traveling isn't an easy task, even for those with full capacity and no health issues. So when 'Liz' contacted me for tips, I thought I could reply here so that you all get to read them. Remember, these are MY tips for MY chronic pain experience. Yours (and Liz's) will be different. Dear Liz, I've done various things while traveling as I was in very different stages each trip. But let's focus on Italy as that was my last trip and I knew so much more about PN. I'm hoping you have a good pain team that can help you plan your trip. Is there someone helping with your pain management? They could recommend nerve blocks among other pain relief options but also you could explore aids to help you maximise your capacity. Eg I had a walking stick in Italy for the walled cities with those steep hills! I did have a nerve block just before I got on the plane and I also planned to take teeny, teeny doses of a pain med. I still use the seat I made years ago . I also plan my sitting very carefully. My day went like this in Italy: Up in the morning, walk to breakfast, sit down to eat breakfast, up to walk towards a lunch destination, sit and have a glass of wine during lunch, walk back to accommodation and have a siesta (easy to do in Italy!) and then up for a walk and dinner. I can usually get through a long dinner session as I have a few glasses of wine. Naps are immense relief for me. I also don't over do it when my body isn't screaming with pain. That's where PN can be tricky - I find my brain can get distracted when it meets a new routine (travel is an incredible distraction!) and before I know it, I've gone too far. Plan the day in different directions so you get to see more of the place. If you want to move through Italy, take the fast train (it doesn't vibrate so much) and or stop over for a night in the towns (sleep is restorative for all of us I'd say). If you're travelling by car, make sure you have a good pillow or something that can be a barrier between your backside and the seat. Not endorsing wine but it really works for me and while I'm traveling I don't place limits on myself. I will never over drink and am always happy to leave wine in the glass. Coffee also works for me. Essentially I'm finding something that takes the edge off the brain and creates that 'aaargh' moment. There's alot more to managing travel, as is managing all our days. It's all the other things you do and don't that will help you get through. Try not to encourage the biggest triggers and try and engage the huge benefits whilst obviously finding the balance so you can enjoy your trip. For me this meant avoiding in excess of 3kg – I don't hold a hand bag. Even if you think a hand bag is light, over the course of an hour, it's a huge pressure let alone a whole day. So for luggage, go the rolley bags! A not so glamorous but super important factor, the toilet routine! It has to be 100% functioning as this is one of the largest pressures on the pudendal nerve - you cannot have a full bowel or bladder. In Italy, they usually have bidets in all the bathrooms. I discovered how effective a cooling wash was in Italy. My mother swore by the bidet and I never understood what she meant until I sat on the bidet during a flare and realised it was subsiding the flare (I came home and installed one!). Cold water is much more effective as water penetrates through layers of skin unlike ice which just numbs the top surface. But you may need heat... as I said, we're all different. Heat sends me in a flare. Bon voyage It takes alot of planning to travel, and given that our experiences with pain are unique, the way to enjoy a trip will vary for each of us. And of course, there will be pain but focus on the fact you are out and you can enjoy and take in the huge blessing that is travel. Lap up the blissful food, blissful views and all the wondrous moments and bring them back in your heart to help you put PN in its place! Best wishes and safe and happy travels! xx

tips | pudendalnerve.com.au

FeetUp (Then Take a Seat)
FeetUp (Then Take a Seat)

Help, Professional, Tips

FeetUp (Then Take a Seat)

By Soula Mantalvanos|2019-12-12T21:04:45+11:00December 12th, 2019|Help, Professional, Tips|

My endless efforts to find a way to get back into regular yoga practice keep falling on their head. Pardon my pun... but I am hopeful FeetUp may help with that problem. Prior to living in the land of pelvic pain, I lived in the land of bliss practising yoga regularly – four times per week! For 45 minutes I was part dog, part warrior, a cat, a cow, even a pelican at times. I became a tree, saluted the sun and enjoyed many various poses. To end my routine, I'd slide up into shoulder stand (8 minutes), then send my toes passed my head in plough pose (for another 8 minutes) before unravelling to a corpse in Savasana pose. That was before I went for a walk!

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Foam! I Found Foam!
Foam! I Found Foam!

Learn, Personal resources, Tips

Foam! I Found Foam!

By Soula Mantalvanos|2019-11-09T21:09:56+11:00November 9th, 2019|Learn, Personal resources, Tips|

Foam! I Found Foam! Am I excited today! As I progress this path of pain, I retain my non-negotiable pointers – one of which is my need for my custom made seating aid. I would love to ditch this damn thing from under my backside and from my clutch every time I go out for a seated event, but it's just too valuable for my capacity. Figuring out the big 'dangers in me' (remember we talked about DIMS and SIMS?) has been key to my pacing forward.

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My New Friend, Freddie
My New Friend, Freddie

Help, Personal

My New Friend, Freddie

By Soula Mantalvanos|2018-10-13T12:16:24+11:00October 13th, 2018|Help, Personal|

I’ve never had much success with inflatables. However, Freddie is a little different – he’s got structure and he’s not so wobbly. If you’ve sat on one of those donut blow ups, you would have noticed [...]

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Travel tips for Liz
Travel tips for Liz

Blog, Manage, Tips

Travel tips for Liz

By Soula Mantalvanos|2018-05-02T15:35:14+10:00May 2nd, 2018|Blog, Manage, Tips|

Traveling isn’t an easy task, even for those with full capacity and no health issues. So when ‘Liz’ contacted me for tips, I thought I could reply here so that you all get to read them. Remember, these are MY [...]

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Chugging Around the Globe
Chugging Around the Globe

Learn, Pain Train, Professional Resources

Chugging Around the Globe

By Soula Mantalvanos|2017-12-17T12:37:26+11:00December 1st, 2017|Learn, Pain Train, Professional Resources|

I’ve met some exceptional people online who have helped educate me about chronic pain and helped with my pain management. I don’t hesitate to write and connect with people but only if I have a question that I haven’t been [...]

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Resources for Treating Chronic Pain by the Pain Specialists Australia (PSA) …MY pain team!
Resources for Treating Chronic Pain by the Pain Specialists Australia (PSA) …MY pain team!

Learn, Professional Resources, Read, Tips

Resources for Treating Chronic Pain by the Pain Specialists Australia (PSA) …MY pain team!

By Soula Mantalvanos|2019-08-26T17:53:09+10:00July 11th, 2016|Learn, Professional Resources, Read, Tips|

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 [...]

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A new DVD resource, Healing the Pain ‘Down There’: A Guide for Females with Persistent Genital and Sexual Pain
A new DVD resource, Healing the Pain ‘Down There’: A Guide for Females with Persistent Genital and Sexual Pain

Learn, Professional Resources

A new DVD resource, Healing the Pain ‘Down There’: A Guide for Females with Persistent Genital and Sexual Pain

By Soula Mantalvanos|2017-12-11T16:28:35+11:00September 8th, 2015|Learn, Professional Resources|

There have been many times during my years of chronic pain where I wondered, ‘Why didn’t I know that?’. Usually, the information is quite basic and I feel as though I’ve been deprived by never knowing something so crucial and [...]

1

Committment, sacrifice and granting myself the right permissions
Committment, sacrifice and granting myself the right permissions

About, Blog, Living, My treatment

Committment, sacrifice and granting myself the right permissions

By Soula Mantalvanos|2017-12-11T15:29:09+11:00September 21st, 2014|About, Blog, Living, My treatment|

Last 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.

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My ‘Fatty’ tail aint fat afterall!
My ‘Fatty’ tail aint fat afterall!

About, Blog, My treatment

My ‘Fatty’ tail aint fat afterall!

By Soula Mantalvanos|2017-12-11T16:48:22+11:00April 23rd, 2013|About, Blog, My treatment|

Closure really is something. Feeling like a niggling concern is finally put to rest can be so satisfying, it brings me such calm. Slowly, my pelvic chronic pain niggles are finding their place and providing me with the peace my body and mind needs so I can let go, move on and most of all feel my injury is clearly understood. I had another session with the wonderful Raffaele who continues to treat me fortnightly. I was ready to call the next nerve block last week but after yesterday I'm hopeful again and thinking I was in some kind of a flare. I can't expect (but I will!) that with my effective management flare ups will cease to happen. As I test my capacity and lift my full litres of milk occasionally, walk the dog and go out more often, I've got to expect at some point the body is going to say, 'hang on love, you're lifting too much milk!'

4

Take a seat… if you can!
Take a seat… if you can!

About, Blog, Learn, Living, Personal resources, The pain, Tips

Take a seat… if you can!

By Soula Mantalvanos|2017-12-15T15:54:24+11:00November 28th, 2012|About, Blog, Learn, Living, Personal resources, The pain, Tips|

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.

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