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

Manage | pudendalnerve.com.au

Printmaking packs for pain management
Printmaking packs for pain management

About, Creativity, Help, Manage, Personal

Printmaking packs for pain management

By Soula Mantalvanos|2018-07-29T16:12:31+10:00July 29th, 2018|About, Creativity, Help, Manage, Personal|

Art is not only distracting but I believe the benefit is in the expression, making something, getting frustration out of the body. Everything you need to make a linocut is in these $99 packs. I've not included paper as that part is a very personal preference. You can choose textures, colours, mix up paper to make a patch work, make cards, print on fabric, etc. The purpose of these packs is not so much about the patterns but rather about the process of carving. It's also to provide all the materials if you've never done printmaking before. Once you have these basic materials (carving tools, barren and roller), you only need to source lino and ink which you can find at most art shops!

0

Pain Revolution Names PainTrain a ‘Best Resource’
Pain Revolution Names PainTrain a ‘Best Resource’

Blog, Help, Manage, Pain Train

Pain Revolution Names PainTrain a ‘Best Resource’

By Soula Mantalvanos|2018-07-22T14:33:23+10:00July 22nd, 2018|Blog, Help, Manage, Pain Train|

PainTrain has followed Pain Revolution very closely over the years and its this research with Soula's experience that has driven the PainTrain concept. We love having your support all the way Soula! Your voice is so needed and loved, and your [...]

0

My Health Record vs PainTrain My Health Summary
My Health Record vs PainTrain My Health Summary

Help, Manage, Pain Train

My Health Record vs PainTrain My Health Summary

By Soula Mantalvanos|2018-07-22T14:06:28+10:00July 22nd, 2018|Help, Manage, Pain Train|

Um, actually, they aren't in competition. They are two very different online resources. There's no turning a blind eye or choosing to stay away from this technology change as it is affecting you right now and there is a decision you need to make within three months about your autogenerated account on My Health Record. Are you staying in or opting out? I opted out. And not because I think My Health Record is a poor concept – it's a great idea! Remember I've made a type of online health summarising resource myself because I realise how important it is to organise your health information and communicate more efficiently with your health team/s.

5

GPs Are Your Patient G.P.S
GPs Are Your Patient G.P.S

Learn, Manage, Personal resources

GPs Are Your Patient G.P.S

By Soula Mantalvanos|2018-07-12T11:39:43+10:00July 12th, 2018|Learn, Manage, Personal resources|

(Image from my book, Art & Chronic Pain – A Self Portrait) Navigating the horrific pain journey is complex enough. Patients need GPs who steer them to appropriate treaters via the shortest route – our GPs are our GPS! Do [...]

2

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

Upcoming Appointment with my Pain Specialist
Upcoming Appointment with my Pain Specialist

Blog, Help, Manage, My treatment, Pain Train, Professional

Upcoming Appointment with my Pain Specialist

By Soula Mantalvanos|2017-12-17T12:37:25+11:00October 5th, 2017|Blog, Help, Manage, My treatment, Pain Train, Professional|

In just a few days I will be seeing Dr Christelis. I’ve had one follow up appointment since my sacral stim implant. It’s not that the stim has miraculously sorted my chronic pain issue, and not that I haven’t had [...]

2

Self Management: Acceptance, Commitment & Sacrifice
Self Management: Acceptance, Commitment & Sacrifice

Blog, Living, Manage, My treatment

Self Management: Acceptance, Commitment & Sacrifice

By Soula Mantalvanos|2017-12-11T11:16:26+11:00July 22nd, 2017|Blog, Living, Manage, My treatment|

(Image: Written Within* by Elizabeth Banfield hand burnished linocut, kozo tissue, thread ©2017) My sacral stim and I have known each other for a full 17 months now, so I felt it was the right time to make some comments and reflect, [...]

2

Pain God, I’ve founded a better way to do things
Pain God, I’ve founded a better way to do things

Blog, Manage, Pain Train, Professional

Pain God, I’ve founded a better way to do things

By Soula Mantalvanos|2017-12-17T12:37:26+11:00July 12th, 2017|Blog, Manage, Pain Train, Professional|

Embracing the health care system's push for self managed care I find it difficult to sit still (pun intended), when I can see a way to make a change for the better and to help others. In the case of Pain Train, it was actually creating something that didn't even exist in the chronic pain world. The Gods we look upto had nothing to offer in this area - it didn't exist. So I repeated my story, as you did/do a few million times during the few million appointments. Exhausting! Not to mention impossible. How are patients and their teams meant to manage (you know the thought, surely God doesn't expect me to repeat myself, again!)? Yes, the Gods do expect you to repeat yourself. How else can they help you? Well, there's an easier way for both of you/us!

0

Pain Down There online resource
Pain Down There online resource

Learn, Manage, News, Professional Resources

Pain Down There online resource

By Soula Mantalvanos|2017-12-11T10:04:24+11:00May 6th, 2017|Learn, Manage, News, Professional Resources|

You might recall me plugging the Pain Down There DVD – an extensive resource for women created by Robert Echenberg, Karen Liberi, Alexandra Milspaw, and Stephanie Yeager. Now the team have taken this a step further, turning the DVD into [...]

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