/, Blog, Living/Venezia!

Venezia!

I managed to have such a brilliant time. We both did!

Theo and I planned our trip so thoroughly and we nailed it! We’ve learned alot about management in the 11+ years of living with a chronic illness.

I’m grateful to the push that my sacral stim gave us to take a European holiday. Pending treatment is a great reason to go travelling!

It’d been six years since the last trip and three years since Theo had a break from work (well, me too – I work!) What I mean is that we hadn’t taken a break since we began our new life.

I’m not saying the days were painless but I believe they were the best they could possibly have been.

We planned to stay in Venice after having visited six years ago for a few days and realising how manageable and enjoyable it was. Venice is small and flat (aside from the bridges) so for someone creative who needs to go slow and light, allocating two weeks was a great amount of time to enjoy the culture.

It’s basically about not over extending yourself. As much as I hate it, both Theo and I have to work within my limits.

There was no rushing to catch transport! And the sounds of Venice are soothing and happy. In the morning we woke to the sounds of the local’s footsteps and the sounds of them working along the canal. Local chatter in the street, dogs barking and of course, the church bells.

Sounds impact a person with a chronic illness. My mind was at peace, it felt rested, all was calming and gentle.

I believe also, both Theo and I felt we could finally leave a huge complex part of our life behind. We had found a way to work, finally! QG&W is established and we are beginning to move forward. It was victorious and a reward to be in Venice.

Day to day

I was on foot (or boat) and embraced the Italian tradition of daily siesta and use of the bidet. Cold running water over my privates and also running over my feet just calmed my nervous system. The cold water just shocks that brain!

The food is extraordinarily nourishing (I’m very careful about what I eat) and the warmth was much welcomed to the bod. I had to avoid the heat so I made the hottest time of the day siesta time. Perfect!

Because Venice is so small, it was unlikely I’d be stuck in an uncomfortable situation. I was never far away so if I needed to sit down, lean somewhere, start moving or even get back to our hotel, it wouldn’t be torturous to get there, perhaps just a little difficult at the most.

In the video below, I fulfilled a little dream. I wanted to face the fear of being left in an unfamiliar public place with a chronic illness. I never feel independent at home because I’m in a teeny country town’s safe environment and I can’t just jump in the car and drive off on my own anymore.

The dream was to stand somewhere and paint plein air but to be BY MYSELF. I had to be alone with the chronic illness and without it being the focus, without it defeating my life. I had to be creating, beating the beast!

We cheated a little, Theo carried all my things to the spot just steps from our hotel. The restaurant had all their tables and chairs packed up and I knew they didn’t open til lunch so I used the stack of tables to lean on. Theo walked away and left me in the unfamiliar territory.

It was great because I was feeling good! When pain rises, it kills confidence, the fear sets in. But at that time, I felt a surge of empowerment… such freedom. And although I’m 11 years older now, I recognised that gutsy independent person I used to be. I checked in with her, she was still there, so all was great!

We didn’t venture out of Venice, even though it was tempting. Just a short train ride away was Verona and Florence and a short direct flight away was Greece and Theo’s dad’s village, Kefalonia. A teeny bit more and we could have flown to Cyprus!

But two weeks doesn’t allow someone with a chronic pain issue to ‘catch the train (or the plane), then the taxi, then walk around in the heat, then get back via taxi and train’. We ditched the ideas. And flying to either Greece or Cyprus, forget it, even harder! It was also scorching hot in those places.

I didn’t have days to allocate to recovery and to be honest, the reason I’m managing life better is because I don’t put myself in those complex, pain instigating, brain bashing situations anymore. I say ‘no’. If I am going to push my limits, it really has to be worth it now!

So my pain levels are very low the majority of the time. And my aim is to keep them that way.

What did I do to manage:

  • Used my seating aid
  • Wore my best shoes with insoles for walking
  • Didn’t carry anything unless I absolutely had to
  • Had a glass of wine at lunch and dinner
  • Paced myself, planning the up time and down time
  • Stayed out of full sun
  • Used the bidet
  • Had a long nap every day mid afternoon
  • Used my peripheral stim and myCompounding cream as required
  • Consumed my herbs and PEA,
  • Panamax (as required)
  • Took Theo’s arm when I needed it to get over bridges
  • I made some creative activity happen daily

Lucky in love

Are we ever!

You don’t have to look very hard to see there’s alot of grief and sadness for a couple living with a chronic illness. I don’t harp on about that side of things on my website but I will stop to acknowledge it here today.

To put it bluntly, Theo and I work our buts off to make our life the best we can.

We’re united in that mission and ultimately we are fortunate that we both feel we would rather be together than not.

Now having returned home, we feel happy and so content. I have the added feeling of having conquered – I managed!!

I made a little art work, and got loads of inspiration to fuel me in the coming months (if not year!). If I need any surgery now, I’m so ready!

And the implant

I switched it off and stuck to my peripheral stim which worked well for me.

My brain appears to have captured all that the sacral stim has achieved.

I’ll keep you all in the loop after my follow up appointment. I’m hoping the reports will provide some insight as to what is going on with my sacral stim and why it’s playing up.

Will it all be a huge blessing in disguise?

I’m ever hopeful!

Us in Venice

Venice getting impairment savvy

By |2018-09-09T15:53:21+10:00September 9th, 2018|About, Blog, Living|6 Comments

6 Comments

  1. Rob Tomlinson April 5, 2019 at 10:30 am - Reply

    Dear Soula

    I have just started with Ralph Mobbs in Sydney a Peripheral Nerve Surgeon he has a internet address.

    https://www.neurospineclinic.com.au/

    With me and watching you for years I have 14 years Chronic Pain and no change, same drugs, this seems my last hope in Australia.

    I have spoken with Tim Tollestrup USA and he said I need the piriformis muscle removed, simple operation and 98% fix within a week, done and dusted.

    https://www.reviewjournal.com/life/health/peripheral-nerve-surgery-offers-relief-from-chronic-pain/ /

    Have a browse around his page, talk to him – bit to far for my dollars and age at 82 next Wednesday.

    LOL – watching you
    Rob Tomlinson

    PS. Gave my big Phy ball to George my dog, he fixed it – it’s flat. rt…

  2. Lisa Hoare October 5, 2018 at 12:09 pm - Reply

    I meant no offence! I was genuinely asking how it was possible for you to travel with Pudental nerve pain in such a long flight? I thought you were posting to help others share in your experience and how you were able to do it. Sincerely Lisa

    • Soula Mantalvanos October 5, 2018 at 12:15 pm - Reply

      No offence taken lovely!! I took my compounding creams with me, I had the peripheral stim and fortunately seats were available next to us so I could sleep forward (I can’t lie back). I do get up alot though and definitely have a wine or two to help me sleep. If you are unable to be in the car for 15mins and need a wheelchair, that really makes travel difficult. The distances in the airport are huge – getting there, getting back. Theo was my luggage manager – travel manager!! But yes, I managed and got to have the holiday. I’m fortunate to now be able to manage albeit the medium pain levels during flight. I recover eventually and it’s the stimulation implants that have helped with that predominately I believe.

  3. Lisa October 4, 2018 at 1:55 pm - Reply

    Please advise if you travelled flat bed Business Class as I can’t sit in a car for 15 mins? I find this trip to be beyond for most with server Intractable Chronic Pain. The post needs to allow all aspects of transportation, I also need wheelchair as i can’t walk far as legs go to led from pain… I’m pleased your pain has improved to the point you can now live!

    • Soula Mantalvanos October 4, 2018 at 3:18 pm - Reply

      I’m sorry, I’m not sure what you mean by the ‘post needs to allow all aspects of transportation’? I can only report from my own experience, I cannot give travel advice – I wish I could! I’m sorry to hear about your situation and that I can’t suggest a way for you to manage the travel. I would not recommend Venice.

  4. Rosemary McKenzie-Ferguson September 9, 2018 at 3:59 pm - Reply

    I am so glad that after such a long time that Venice was able to wait for the both of you, I am also heartened to know that the trip was everything that both of you needed. 💛💛💛

Leave A Comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.