20120805 Festival of Hope day

Caf Goes To Sydney

Dear Audy,

I did it! I survived my trip to Sydney. It’s taken a week for me to get to the point of sitting down at a keyboard again…but I did it.

Flying did not lead to a nervous system disaster at all. I really wasn’t sure how my body would react to the altitude and vibration and general assault of stimuli that is traveling by plane. I reacted fine! Other than increases in pain during take off and landing, the actual flying part was less painful than a car ride.

I was greeted in Sydney by fellow Chronic Pain Australia board members, Margaret and Peter. It was wonderful to begin putting faces to names. We went straight from the airport to dinner, a situation that I had been a little nervous about. Mostly because that level of activity is more than I can usually do in one go without drastic consequences. It was all fine, however, I was able to put some more faces to names, learn some new names and enjoy getting to know this group that I had previously only known through digital means.

Getting to the hotel that evening felt like I’d conquered the first peak on the mountain that was my great, big, Sydney trip. A plane ride! Dinner in a noisy restaurant! Coming home to not my home! Those were big things for me. Which is probably why I looked like this:



I wasn’t done yet, not in that photo. I’d made the journey, but I needed to manage the physical fallout before the fallout managed me. I had one of the hottest showers known to man and then stretched out my tired muscles. Next, I lay down on the floor, turned on some of my go-to Feldenkrais tracks and zoned out to the slow, familiar movements and calming voice of my teacher.

It was late by the time I lay down to sleep, but thanks to all of the relaxation I’d engaged in I was able to drift off easily. When I woke up the following morning, I was just happy that I was waking up – that meant I’d slept! Second peak! Sleeping in not my bed! I’ve been known to be terrible at that in the past and had spent weeks before the trip convincing my mind that I’d be fine and sleep fine this time. It worked a charm.

I woke up with my usual soreness. There was no time to mess around and I got straight into stretching, hot showering and preparing my body for a big day.



The Festival of Hope was fabulous! The turn out was great and there were many intelligent speakers discussing chronic pain in a current and positive manner. Presenters from different specialities such as acupuncture, Feldenkrais and Scenar introduced options for pain management that (unfortunately) aren’t yet offered by many mainstream doctors.

It was wonderful to be in a place with so many people that understood what life was like with chronic pain. I didn’t feel at all strange or inconvenient when I had to go and lay down with my hands in the air at different times throughout the day. My hands, in particular, were flaring up and down in a rapid manner (by their standards) all weekend. I did what I could and took breaks when I needed to, that’s really all I can ever do.

It was also wonderful to have the chance to catch up with an old friend, who lives in Sydney and made a huge effort to come down on the day. She has been battling chronic pain in recent years. Chatting to somebody whom I knew before pain and who also understands my current challenges is an absolute privilege. We are both young women, trying to navigate a world of doctors and loss, trials and despair, challenges and tinyhuge victories. We get it.

Chronic pain isn’t something that just effects elderly people, or people who are dying, or people who have had horrific accidents – although it does do all of those things. It can effect anybody in a huge combinations of ways. It can strike healthy, young people. It can strike people that you love. It can strike when you least expect it.

It can be the hardest to explain when others least expect it.

I’ve made a lot of friends along this journey and blogging has allowed me to share stories with people who understand chronic pain. I chatted to a number of people at the Festival of Hope who had never before met somebody living with their same condition, or even just a different version of chronic pain. I felt so lucky to be the sort of person that I am, the sort that writes and shares. It has allowed me to spend most of my time with CRPS not feeling like the only person in the world who is going through this pain.

Loneliness is a horrible thing. For many attendees, the Festival of Hope helped to ease this loneliness and provide options such as the Chronic Pain Australia Forum and Facebook Page, where they can look for future peer support.

Along with the treatment options and pain education, a sense of community was one of the strongest feelings of hope that I felt on the day. We’re in this together, each of us with chronic pain and we can grow this community so that isolation of patients becomes a smaller issue.

Sunday was the day for Chronic Pain Australia’s strategic planning meeting. It was my first! My flaring was more intense than the day before and I need to go and lay down quite a bit, however it was wonderful to attend and I am inspired about things to come in the future.



With a few hours to spare on Sunday evening, I decided to go and see a movie. Ted was brilliant. I laughed out loud a ridiculous amount for somebody sitting by themselves in a cinema.

Following the film, I had a little independent adventure. I had to get myself from the cinema and back to the hotel, on foot. It wasn’t very far, maybe a kilometre, but through unknown streets at night…that’s an adventure for me! I utilised Google Maps and the compass app that I’d never understood the point of before. I knew that I’d pay for the walk with pain in the legs, however, such pain is often delayed and I was flying home the next morning.

It was a gamble that I was happy to gamble and that played out in my favour. This is the first time I have ever thanked the disorientating pain delay.

Monday morning was an early one. Peter and I caught the train to the airport because Sydney, your roads are borked. But your trains go to the airport, so you’re still winning transportation. Melbourne, build a freaking train track to the airport what is wrong with you?!

I learnt that old trains carry much more vibration than new trains, which translates as pain for me. Note to self: trains aren’t all scary, get on newer ones where possible.

I arrived home again in one piece, one very tired, very overdone piece. The body crash was expected, prompt and well earned.


A week later, I’m still amazed that the trip happened and that it went well. A weekend trip interstate is absolutely nothing to some frequent travellers, however, it’s a pretty big deal to somebody who has often been too sore to even leave the couch over the past six years.

It was a very big deal indeed.

Love & Adventure,
Caf

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  • 6 thoughts on “Caf Goes To Sydney

    1. Tammy Darling

      Just want to tell you how PROUD I am of you Hayley! You ROCK girl! So proud of your journey, you are such an inspiration to so many people, especially me hun! You have just given me the incentive to hop on a plane at some point to go visit some other RSD’ers. I, like you, have that concern on flying and trains, but maybe I will give it a go-ahead. I have moved to another city yesterday, and there are trains here to travel on, unlike where i used to live. so might even do that for an adventure, haven’t been on a train in years (maybe 23 yrs?), but it would be a nice adventure.
      So glad you were able to go meet people from Chronic Pain Australia! A big ‘THANK-YOU” to them for treating you well and helping you get around to places! Think of you all the time hun, will drop you a line sometime soon. I am so proud of all you have accomplished and how you have grown in the past years. Much love always to my friend who i was gonna build a bridge to go see. lol. <3<3 ~gentle hugs & love~
      Tammy

      1. Hayley Cafarella Post author

        So lovely to hear from you, Tammy, thank you! Sounds like you have been on a pretty big adventure yourself, moving to a new city is huge! I hope that you are recovering ok? Getting through this challenge has meant I am less scared of travel now, which has exciting possibilities. I wish you the best of luck if you decide to take the train adventure -be sure to allow plenty of time for recovery afterward 😉 xoxo

    2. Lisa Tait

      Hayley! I’m so proud of you and thrilled for you, too!
      I related SO much to your travel tale. Although I didn’t fly, I took a trip via car at the beginning of June and in many ways the amount of stress and toll it takes on the body is similar to what you wrote.
      Well done with managing things! I get that bizarre delay reaction, too, often and since it’s not always the same, I find it hard to know what to expect!
      I’m thrilled you were able to attend the pain conference, but most of all, that you were able to plan and enjoy a wonderful trip despite CRPS! Huzzah!
      BTW, my trip was to see my son, who’s moved out of town to live and attend school (soon, he hopes). What a powerful motivator: mama needed to see her baby! Nothing was going to stop me, certainly not CRPS… even if I wound up in hospital on my return, I was GOING. It took me twice as long to get there (resting and what have you) as it does for the average traveller, but boy, howdy, I GOT THERE! OK… it was getting back that was the killer. WORTH EVERY MOMENT to see my boy! :)
      And I guess that’s my point here; if there’s something we very much want to do, something we’d surely do prior to CRPS, then we should definitely work toward making that happen and not allow CRPS or whatever to end those dreams and goals.
      I not only had the immeasurable pleasure of seeing my baby, but also felt a sense of pride for planning so carefully and DOING IT. It didn’t all go smoothly, but thinking back, all that comes to mind is the great parts! :)

      So, I hope you feel pleased and proud and, now that the flare is calming, you’re feeling that it was indeed worth every bit of crash. Congrats!

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