Wednesday, 6 June 2012

Day 1 - The Next Adventure Begins!

I woke up the morning after I finished Life's a Beach Walk and thought to myself, "Now what?"

In all honesty I felt like going for a walk. I wouldn't mind keeping on heading south except for the cold or I could turn around and go back to Byron where I started, revisiting the places I enjoyed the most on the trip. The journeys we take in life often have a circular motion, ending Life's a Beach Walk where my journey with ME/CFS began was more significant than I realised when I planned it that way. And now, day one of my next journey begins here, where my beach walk has ended.

I've been asked where was my favourite place on the trip but narrowing it down is difficult, I have a lot of "favourite" spots! The easiest way to sum up my favourites is to repeat the titles of five National Parks which have become for me evocative words;

Yuraygir, Hat Head, Crowdy Bay, Booti Booti, Myall Lakes.

Correspondingly, the days I walked in these places are my highlights of the trip because of the scenic beauty and isolation.

Day 16 - Brooms Head to Illaroo Camp Ground

Day 18 - Wooli to Freshwater Beach

Day 41 - Trial Bay to South Smoky Beach

Day 53 - Diamond Head to Crowdy Head

Day 59 - Cape Hawke to Elizabeth Beach m=1

Day 64 & 65 - Yagon to Hawkes Nest

I've also been asked a few times to pick what was my "favourite" beach. This is so difficult! I have quickly added up how many beaches I walked on which is actually tricky. Sometimes the coast is an almost continuous stretch of sand with some rocks every now and then, is that counted as one beach or ten beaches? I've counted it as one. Also, there are pebbly nooks and sandy crannies, do I count them? I counted the ones I remember. So the approximate number I came up with is 199 beaches. But, I'm going to walk around to Shelly Beach today from Manly which I missed yesterday so let's call it 200! I've narrowed the short list of my "favourite" beach down from 200 to 27 beaches. I'll keep working on it......

My plan for the next few months is to write a longer account of Life's a Beach Walk and maybe turn it into a book to continue my small contribution to raising awareness of ME/CFS. There is a lot of work which still needs to be done. Something I learnt over the course of this trip is that the empathy and understanding of ME/CFS in the general public has increased over the years since I was sick but that the funds which governments put into research and support of the ill with ME/CFS is insufficient. I've also learnt that there are many wonderful people working for better understanding of the disease, many of them sick themselves, and that the network of ME/CFS advocacy is strong. Some of them have helped me along the way and I am grateful for their guidance and support over the last three months.
One of the most moving and meaningful things that has happened over the course of Life's a Beach Walk is reconnecting with and meeting new people who currently suffer from ME/CFS. Hearing their stories full of frustration, courage and persistence helped me to remember what life with a severe chronic illness was like. Ultimately doing this walk for ME/CFS awareness helped me to be more aware of my own experience and of the issues which persist for people living with the disease.

ME/CFS Australia's website is a marvellous resource.

Most significant for me was having access to the accepted diagnostic criteria for ME/CFS. Reading this document was like seeing my own experience described in detail. The diagnostic criteria not only helps people with the disease understand their own experience but importantly gives continuity in medical circles and in ME/CFS research. ME/CFS Australia and the state societies are working to educate GP's of the diagnostic criteria to improve the experience of people newly ill with the disease.

The issue of defining severity within the diagnosis of ME/CFS was raised by media coverage I received over the course of this walk. It is little understood in the general public that ME/CFS varies from moderate symptoms through severe illness to critical disease which is life threatening. A percentage of people with ME/CFS suffer from life threatening symptoms. My illness was incorrectly described as life threatening but I was not at any stage critically ill. I did have severe symptoms and was bed bound for five years but my recovery should be seen in the true context of my experience. I have written my story "ME/CFS and me" which can be accessed on the tab above.

The Alison Hunter Memorial Fund addresses the issue of severity and works to increase the understanding of the disease across the full spectrum of the illness. The website is a good reference for understanding critical ME/CFS including multiple links to stories of critically ill people.

Another issue raised by my experience with media on this walk is one many people with ME/CFS have had to deal with, the invisibility of the illness from the outside and peoples judgement of them because of this. Providing photographic "evidence" of my illness for reprint was nigh impossible and dealing with the old judgements was almost as disturbing now as it was back then. The refrain 'You don't look very sick' repeated by misinformed people can be crushing to people suffering illness and increases their isolation. This issue is not specific to ME/CFS but happens to many people with chronic illness.

The online resource of Christine Miserandino is a good place to have a laugh and gain support.

I attempted to encourage the media I interacted with to represent ME/CFS accurately in all of its complexity, with moderate success. Hopefully coverage of a good news story on ME/CFS in a variety of mainstream media has helped people to link to ME/CFS Australia and find support. And hopefully my story has given people with ME/CFS some hope. Ultimately I believe the more that ME/CFS is talked about the better the outcomes for people will be.

Lastly, if in some strange way having someone do what they love by going for a long walk on the beach helps increase understanding of ME/CFS then I'll put my hand up to do it again!

My life is a beach, I like it that way.

Rachel Klyve, June 2012.

Monday, 4 June 2012

Day 92 - Collaroy to Manly

Life's a Beach Walk finished in the rain on Manly Beach today with a marvellous group of friends, family and ME/CFS sufferers and advocates.

Huge big thanks to everyone that braved the weather to join me and make today so memorable. And thanks to everyone else who has helped and supported me along the way.

The total distance covered in the last three months is 786 kilometers. A good long walk!

I'm short on words tonight after what has been a marvellous and eventful day, the photos tell the story well. It's time now for rest and to dry out my pruney feet!  

The End, for now........

Collaroy to Manly - 10 kilometers

Life's a Beach Walk Grand Total - 786 kilometers

Sunday, 3 June 2012

Day 91 - Avalon to Collaroy

The penultimate days walk!

Lorraine, and Steve joined me today for what was a delightful walk from Avalon to Collaroy. We travelled approximately 12 kilometers through what is a highly populated area but we spent only 600 meters of the entire distance on a main road and less than a quarter of the distance on quiet back streets. Most of the day we walked along either headland paths, rock shelf or the beaches, eight of them in total including Narrabeen Beach which is about 5 kilometres long, not bad for so close to the biggest city in Australia!

We dodged the rain with a well timed cafe lunch as the skies opened up briefly and arrived in Collaroy in the afternoon glow, ready for tomorrow's final stretch into's a good thing rain is forecast tomorrow too, it will disguise the odd tear I may well shed. I hope everyone brings a good raincoat for the walk!

Avalon to Collaroy - 12 km

Life's a Beach Walk Total - 776 km

Friday, 1 June 2012

Day 89 & 90 - Wagstaff to Palm Beach to Avalon

We saw an Albatross as we crossed Broken Bay! It was a juvenile Black-browed Albatross sitting on the rolling waters of the bay as Mikey, Bee and I sailed from Wagstaff into Pittwater. It took flight as we neared and circled the boat once then headed out to sea. It was the first Albatross I've seen on the trip and possibly the last.

It was wonderful to arrive into Sydney in style, under sail. Although, instead of making a landing straight away at Palm Beach, the northern most part of Sydney, I decided to include one more National Park in the trip and spent a day and night on the boat in The Basin in Ku-ring-gai National Park with Mikey and Bee. These two gifted, unique, generous and quirky souls have been my biggest support over this three months of walking and I'm grateful for their never failing enthusiasm, engagement and encouragement.

Then finally this morning, with all postponements ceased, Mikey rowed me ashore to the Pittwater side of Palm Beach. Sydney, officially!

I went up to Barrenjoey Lighthouse to mark the occasion. Looking north I could see the headlands of Bouddi National Park and the Central Coast. I imagined seeing all the way north along my path of the last three months to the lighthouse on Cape Byron, approximately 750 kilometers away. It felt pretty darn great!

I was joined then by Neil, a friend of mine and husband of my dear friend Lisa, who is too unwell to walk. Neil and I made our way through Palm Beach and Whale Beach trying to find short cuts along the rocks and through the suburbs. We took the path through the bush on Bangally Headland which brought us past my old high school, where I caught Glandular Fever which developed into ME/CFS. From here we walled Avalon Beach where Neil caught the bus home and I continued on to Clareville, where my mum lives.

It was here in this bed room, where I am writing tonight, that I spent so many years sick with ME/CFS. Being here now is powerful having actively remembered so much of my illness over the last three months. The memory of the struggle I had year after year to get through each day is palpable on these four walls, like old peeling paint on a prison cell. The dreams I had while I lay sick in this bed, of health and freedom, also hang in the air. A yearning like the persistent vibration of a flat note in a minor key. Echoes of the persistent efforts I made and the efforts of my family to make life as rich as possible remain too. This sadness isn't erased by my successful return but my ability to look at the years of illness with deep compassion and acceptance has increased. The extent to which I feel joyous now on achieving this goal is an exact measure of the pain and desperation I felt over so many years. It makes me think of all the people out there now, still ill with ME/CFS, with similar dreams of health imprinted on the walls of their rooms. People striving to live well with diminished resources, living lives which are rich and frustrating at the same time. I sincerely hope that each of you finds meaning and peace in your current circumstances and also find the key that opens the possibility for increased health again in your life. All strength to all of you.

Palm Beach to Clareville - 8 km

Life's a Beach Walk total - 764 km

Thursday, 31 May 2012

Day 88 - Little Beach to Wagstaff

It rained all night at Little Beach and the condensation inside my tent was so dense that with each wind gust the tent skin flapped and it rained down on me. It made me a bit soggy but I didn't care, I was snug as a bug in the super warm sleeping bag my mum lent me for the last week of the walk. It's heavy at 1.5kg but worth every gram. Weenieism has been abandoned for warmth.

I woke to a weak sun with barely any heat in it. I reluctantly left my sleeping bag and pulled on my walking shorts, looking hopefully at the sun. Today's walk would see me reach the end of the central coast and be in full view of Barrenjoey Headland and the Northern Beaches of Sydney. The beginning of the last stage of the trip. I grew up in the Northern Beaches and it was here that I was sick for so many years, I still think of it as "home".

The central coast is separated from Sydney by the largest obstacle on my whole walk, Broken Bay. Broken Bay includes the end of Pittwater and the mouth of the Hawkesbury River with Lion Island in the middle of it all. I could see the lighthouse on Barrenjoey Headland getting closer and closer with each bay I walked.

The Bouddi Coastal Walk hugs the coast and passes through some exquisite bush and beaches. Coming from a spot in the bush just off the path I could hear a chours of birds, Currawongs, Whipbirds, Whistlers, Shrike-thrush, and Kookaburras, all whispered and repeated over and over, it had to be a Lyrebird practicing his performance. I paused at Maitland Bay for lunch and soaked in the colours. I've never noticed before but the colours themselves here are unique and feel like "home". Orange and white sandstone, olive and blue grey bush, bottle green shallows and indigo depths. At Putty Beach there were fifty or more Port Jackson Shark egg cases still soft and pliable. All empty of baby sharks though, I checked.

At the Cafe at the southern end of Putty Beach I met Helena. She made a generous donation to ME/CFS Australia and told me all about a local guy, Andrew Cadigan, who is just weeks away from finishing a walking circumnavigation of Australia in memory of a friend who died of Leukemia. I bow down to him, he has done 14 000 or so kilometers in 521 days. Not on the beach but on the roads pushing a pram with all his gear. It makes me feel lazy! There are crazy people everywhere doing awesome things for charity. When I tell people what I'm doing with Life's a Beach Walk, a common response is, "Oh yeah, well, I know a guy who......" My favourite is the 90 year old man rollerskating to Canberra from Sydney while pushing a kid in a wheelchair to raise awareness of people with disabilities. Brilliant!  

From Putty Beach I walked up along the Bouddi Ridge and out to Box Head. All along the ridge grow Angophora trees. The angophora grow in intimate relationship with the sandstone, often with their roots in a small crack or a simple divet in the rock. The trees are reluctant to give way to the stone and frequently rest against or embrace the rock and alter their growing form to accommodate their solid partner. This closeness produces strange swellings and odd angles.

Just before I reached the end of Box Head there is a sign which reads, "Danger Cliff Edge", it isn't an exaggeration. There is nothing between the path and the sheer sixty meter drop to the ocean, dramatic! From the very end it feels a bit like the end of the world and for me it felt like the end of the walk. Once I get across Broken Bay I'll be in Sydney and home. Even though I have another thirty kilometers to go to get to Manly the challenge feels achieved.

I quietly whispered to myself "I did it!"

Far down below I could see a magical little gaff-rigged ship sailing across Broken Bay. It was my brother Mikey and best friend Bee coming to take me across to the other side. We arranged to meet at Wagstaff and sail to Pittwater when the conditions were good. I sent them a text message saying "look up" and stood as high as I could on a rocky outcrop above the water waving madly. They saw me too! 

I met up with Mikey and Bee down at Wagstaff just as the sun was setting. We moored up for the night in the still bay. My tent had a night off as I crawled into the "sister annex", a small sea berth Mikey made especially for the occasion. As I got into bed I could hear the creatures of the grass bed making strange nocturnal noises amplified through the wooden hull. Eventually I was lulled to sleep by the gentle movement of the ship in the water and dreamt of sailing.

Little Beach to Wagstaff - 15 km

Life's a Beach Walk total - 750 km

Day 86 & 87 - Little Beach

On with the show again, my little "holiday" over I'm back to Life's a Beach Walk.

I walked the gap between Copacabana and Little Beach which is the beginning of Bouddi National Park, the last National Park before Sydney. Not actually far in distance but a world away in atmosphere. Little Beach is a walk in camp ground so only the intrepid get to see this lovely place. It is well named and may indeed be the littlest beach I've walked on over this trip.

I camped here for two days and two nights and watched the light and tide and rain and sand and colours change with the hours. I stood on the same rock for each of these photos in sun shine and rain, in rising dawn and darkening sky. In solitude.

Life's a Beach Walk Finish - Sunday the 3rd of June

Three more sleeps until the final day of Life's a Beach Walk!

The preparations are coming together and thank you all for asking for more details, and making plans to come along. It's very exciting!

The day will start, for those of you up for a walk, at Long Reef. Meet me at 10am at the beach end of Anzac Parade.

The red pin on the first shot above marks the spot. You get here by following Pittwater Road from either the north or the south then turn to the ocean at Anzac Parade. There is parking in the back streets to the north with the golf course on the south.

From here we'll walk south along the beaches and headlands to Manly Beach which is about 10 kilometers. We are hoping to arrive at the southern end of Manly Beach at 2pm, just in front of Manly Surf Club, the second photo above. South Steyne Road runs within 40 meters of this part of the beach and here would be a good drop off point for anyone who can't walk far on the day.

We'll have a big line in the sand on the beach for us all to cross together!

Afterwards, to feed the hungry walkers, we'll have a meal at a fabulous restaurant in Manly (yet to be decided).

The Manly Food and Wine Festival is on this weekend so there will be plenty of people there to celebrate with us but they might hog the carparking spaces. Apparently East Hill in Manly will be closed off so parking might be easier to the north, good luck. There's always the ferry too if you come from the city.

There will be plenty of busses to get back to any cars left at Long Reef.

I'm so excited about being joined not just by friends and family but also by anyone that has enjoyed the blog and has an interest in ME/CFS. I'm looking forward to meeting you. See you all on Sunday!

PS. If you need more details email and if you need help finding us on Sunday ring the Life's a Beach Walk sand line on 0458479826.

Wednesday, 30 May 2012

Day 82 - 85 - Terrigal

I've been staying in Terrigal for a few days, the weather was predicted to turn wild and cold and I was ahead of where I need to be to arrive in Sydney in time for Sunday the 3rd of June. So, I've been having a little "holiday"!

Leeanna, Suzie and I had breakfast at the Haven Beach Cafe with views over the bay and bunny rugs to ward off the cold. Leeanna invited me to stay another night and I was very tempted by the good company but I knew if I did I wouldn't get many blog posts written and I am behind by a week. The YHA had a bed again so I decided to doss down there for a couple of nights. I plugged my phone in and put my head down to write. The following day was almost a complete replica of the day before, plus extra rain, which made me extra glad for a roof. The orange sand beaches here are part of the Sydney sandstone basin and remind me that I'm nearly "home". I wasn't planning on staying in Terrigal at all on this trip, but because of the convenience and fabulous people I happily got stuck here.

My holiday got even better these next two days because my mum, Lorraine, joined me. Lorraine has been hoping to walk with me for at least one stretch before I get to Sydney. Since I'm in a holding pattern and running out of central coast beaches the timing for mum to join me here was perfect. We did some short walks around the area and added southerly kilometers to my trip walking through to Avoca, Winney Bay and Copacabana Beach. From Captain Cook Lighthouse we had fantastic views of two Humpbacks whales heading north close to the coast. There was a guy up there who offered us to use his binoculars and we could see the whale's pectoral fins through the water glowing white.

I've mentioned many people on this blog who have been significant in my life but the one person who has had the biggest impact is the one who it is hardest to find the words to describe, my mum. Lorraine was my primary carer for the period of time I was sickest with ME/CFS and remained closely involved in assisting my healing the entire time I was sick. She was my arms and legs and eyes and brain and heart when mine all failed me. Also, she managed to care for me and simultaneously help me maintain my autonomy as best as possible.

When I thank her now for her care she says 'I just did what any mother would do'. This may or may not be true but the important thing for me is that Lorraine is my mum and she did everything she could to help me live and heal. I got lucky. Lorraine also developed ME/CFS as I was starting to get better and was very ill for several years. We cared for one another.

The joy that a simple holiday together holds for Lorraine and I, like this two days in Terrigal, is amplified by the life experience we have shared. Every step we take, every meal we eat, every laugh we share is a celebration of overcoming the struggles we had, together. Mum has been following my walk these past two and a half months, with excitement and a bit of trepidation as you can imagine! I'm delighted that I got to share a piece of it with my mum to add to our growing list of "good times".