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

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

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!

0

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.

1

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 [...]

0

Encouraging Self Management
Encouraging Self Management

Blog, Help, Manage, Pain Train, Professional, Tips

Encouraging Self Management

By Soula Mantalvanos|2018-05-17T17:19:32+10:00April 1st, 2017|Blog, Help, Manage, Pain Train, Professional, Tips|

(Written by me, the founder of PainTrain) 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 [...]

0

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 [...]

7

‘Ouch’ just doesn’t cut it!

By Soula Mantalvanos|2017-12-11T09:42:16+11:00July 20th, 2015|Blog, Help, Manage, Professional, Tips|

And 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 [...]

0

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.

20

How do I do it?

By Soula Mantalvanos|2017-12-12T15:12:29+11:00January 24th, 2012|About, Learn, Living, Personal resources, Tips|

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!): •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

3