Goal kicking 4 years on!

Photo by Farid Askerov on Unsplash

It occurred to me that I’ve just hit my ME/CFS anniversary and I think it’s safe to say that I’ve kicked it to the curb! This past year has been filled with a bit of goal kicking and it’s not stopping anytime soon! Yeooow!!!

Four years ago, I can still vividly remember how my health went downhill fast.  The first year was the hardest, I barely had wins and as much as I tried to keep positive it was hard.  I held onto goals and put up pictures of things that symbolised my goals. I convinced myself that I would achieve these goals one day…….even though at the time, it seemed hard to believe. I held onto the idea and kept it for when I needed it the most.

Finally, I have achieved a number of these goals. I am extremely proud, to say four years on I am celebrating and smashing my goals! The hard work has paid off and most of all, the illness is no longer ruling my world.

A huge victory is that I am heading to South America in a few days, yep you heard right!!! It’s literally days away. South America became a long-term goal of mine when I become unwell. Most of my close family and friends know this and probably got sick of me saying one day I’m going to go when I get better! Haha well that day has finally arrived and I am pinching myself! I really can’t believe it has arrived.

It is very random how it all came about, it happened to be in my very early days of my illness. At the time, the doctors still didn’t know what was wrong with me.  I was trying to keep positive throughout the whole ordeal and I decided to make an inspiration board of what I was going to do or work towards when I got well enough. The picture of Machu Picchu came to me, I had no desire to visit it before. But that image of Machu Picchu stuck with me and I thought to myself ” I’m going, when I’m well enough.”

And it’s been with me ever since.

City2surf is another big thing that I have been working towards, which I’m excitedly fit enough for. City2surf is happening in August which I am excited to be competing in the event and I have also been fundraising for it. The charity I have chosen to fundraise for is emerge, they are an Australian based charity that dedicates themselves to raising awareness and funds to research for ME/CFS.

Returning to work and working like a normal person would, was another big goal. DONE! This also includes other living “like a normal person” life goals again. DONE!

My next ass kicking goal will be a tough one and means heading back to school! Bring it on!

It’s not until you lose something, that really puts things and life into prospective for you.

Any way my friends it’s time for me to love and leave you, I need to go pack!

Can’t wait to tell you all about my South American adventure.

Much love

Lennae xxx

Photo by Abraham Osorio on Unsplash


ME Awareness 2017

Imagine one day you wake up and you can barely move from your bed. You try to lift your head but it feels too heavy, almost like you are trying to lift up a heavy rock.

Your cat is lying beside you and senses you are waking, he walks up along your body. Ow! You didn’t realise he was that heavy. His tiny paws digging into your body are so painful. As you try to pull yourself out of bed, you feel stiff, heavy and achy and your joints are sore. Your body feels like it has aged decades to your eighty’s.

As you rise you feel your head spin and your body struggle to hold its self-upright. A million thoughts start to overwhelm your head and you start to wonder why am I feeling so awful? You barely make it from the bedroom to the lounge. Your body feels like it has just run a marathon.

Maybe you’re coming down with something, like the actual flu….. Or maybe today is just an off day. But then the next day feels much the same, days then turn into weeks, then months then years.

Just like that you have gone from be a young, fit, healthy and capable human being into a weak, venerable, confused and incapable human being. You can barely leave the house, let alone look after yourself and your loved one has turned into your carer.

Your doctor and other doctors can’t explain it, won’t acknowledge it, or know about it but can’t help. Leaving you at a loss as to where and how it all went so wrong……

Wow that sounds horrible and depressing! That my friends is a small taste of what life with ME/CFS aka Myalgic Encephalomyelitis /Chronic Fatigue Syndrome is like.

Today is ME/CFS awareness day! As a yearly ritual I like to get on board and help promote awareness on our intentional day of May 12th (read previous posts for 2014, 2015 , 2016 here).

Sadly there are millions of people world wide that are currently suffering with this illness. Many sufferers are left house bound, some are even bed bound. The recovery with this illness can take years, even decades. Unfortunately there is still a lot to be learned and research to be done about ME/CFS. Some health professionals still believe it is all in the sufferers mind, as there is still a lot unknown about the illness. Crazy right!?

I suffered with this illness back in 2013 and become completely bed/house bound for years. It was a very isolating and debilitating experience to go through. Thankfully my health is in a much better place now.

For more information about ME/CFS or to find out how you can help check out the Australia ME/CFS website emerge.org.au.

I am extremely excited to be completing in City2surf this year and fundraising for ME/CFS. Funds donated are going to emerge, they are a wonderful advocate for ME/CFS sufferers. If you want to get behind me or share some love and support click here for my everyday hero page.

Thanks for reading, I hope you have a wonderful day!

Much Love,
Lennae xxx

 

 

Photo credit: a.m_banks- Instagram

 


Wrapping up 2016 and Bringing on 2017!

Photo credit @a.m_banks- Instagram

Photo credit @a.m_banks- Instagram

Welcome to 2017….. Where on earth did 2016 go!!!

I know I’m a little late to the party, but I can’t help myself I love wrapping up a year that’s passed and looking forward to the beginnings of a year ahead! I don’t know about you guys, but a new year just brings a whole lot of exciting and endless possibilities!!!

Although I can’t say I have completely recovered from ME/CFS (Myalgic encephalomyelitis/ chronic fatigue syndrome) I am more functional and active than what I have been in a long time. 2016 was a good year for me, my health turned it up a notch and showed me that my days with ME/CFS are becoming more like it was all just a bad dream.

Throughout 2016 I did have a few issues with my health, but they ended up not being ME/CFS related. How good is that!
2016 showed me a normal and active life, that I am more than welcoming back. I was able to work my way up to working 15 hours a week and maintain that. I will increase the hours more at some stage, but right now I am happily enjoying this work life balance. I also enjoyed a bit of travelling, going interstate, as well as heading over to Singapore off on a cruise. I remember feeling on the cruise like I wasn’t a sick person (how amazing is that). I was also studying some of last year, however I did have to place my studies on hold. I hope to continue them at some stage, possibly in a years time. Putting my studies on hold allowed me time to complete my main goal of returning to work and also allowed me to focus more on my fitness. Which Snowy and I have been loving!

Anyway enough about 2016, we are now in 2017!!!

Whoohoo, bring it on!!!

This year one of my main goals that I will achieve, is dedicated to when I first became unwell. When I first became unwell in 2013, I could barely move. At the time all I could do was lay in bed or on the couch. I did a lot of soul searching and googling online about ME/CFS and came across mostly negative stories. This did not help my frame of mind, I needed something positive. I had no idea when I would get better or how long it would take. However I needed something to look forward to. I decided to make a vision board, it was something I hung on my wall, where I looked every day and helped when I wasn’t feeling the best (which at that stage was everyday). My vision board consisted of destinations that I wanted to visit and stuff that I wanted to be doing once I finally started to get better. The one thing that stuck out to me however was Machu Picchu. I have no idea why, it just did. I decided when I was finally well enough and able too I would go there someday. Thankfully my beautiful friends I am well enough to get my butt over to that amazing place and show ME/CFS who the boss is now!!!

To some it may not seem like a big deal, but to someone that has been suffering with a chronic illness it means having your life back. Suffering from a chronic illness is hard work, but recovering from one is even harder. Achieving your goals is rewarding, here’s to a year full of achieving your goals and setting new ones.

Have a happy 2017 my friends! I hope you all have a fantastic year ahead, sending lots of love, hugs, spoons and positive vibes your way.

Lennae xxx

Photo credit @a.m_banks- instagram

Photo credit @a.m_banks- instagram

Photo credit @a.m_banks- instagram

Photo credit @a.m_banks- instagram


Mr Spoons Adventures

Mr Spoon at Flagstaff hill park, Wollongong.

Mr Spoon at Flagstaff hill park, Wollongong (Photo credit: Instgram @a.m_banks).

Last month I was fortunate enough to be visited by the famous travelling Mr Spoon. He travelled all the way from Germany taking a couple of detours around Australia, before turning up on my door step.

You’re probably wondering who is Mr Spoon and what’s his story?  Well let me tell you!!!

Mr Spoon was created by the wonderful Theresa Laura at spoonsforhappniess.com.  She created him for the Spoonie community. His job is to help each person that receives him feel less alone while dealing with their illness and help them feel connected to a wonderful worldwide community.

Now you’re probably wondering what is a Spoonie?

A Spoonie is someone that suffers with a chronic illness, for more details read Christine Miserandino’s Spoon Theory.  Mr Spoon is helping raise awareness worldwide for people that suffer with a chronic illness. As you may know I have suffered with ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) for over 3 years. My health is a lot better, however I was bed ridden at one point. For some spoonies they can be house bound or even bed bound. This means basic activities can be almost impossible for some.  Knowing that Mr Spoon was travelling around to help with raising awareness, I was more than happy to help and support Mr Spoon on his travels. Anything that helps to raise awareness for any type of chronic illness is always welcomed.

Now that we have covered the important facts I would love to share my adventures with Mr Spoon with you all! Mr Spoon ended up staying with me for over a month.  Our first adventure was our road trip down the coast to Melbourne. Mr Spoon decided to hide in the back seat on the first day, but we managed to get a lot of sightseeing pictures the following day. We looked for whales in Eden, NSW, crossed over the border to Victoria, and headed for Melbourne while hugging the coast as much as possible (for more details about our road trip click here).

After our big road trip Mr Spoon and I were happy to chill out during the rest of our time together.  Before I was due to forward him on, I decided to set him up with a bit of a photo shoot. Mr Spoon loved every moment of it, he is a bit of a model and I’m pretty sure he would win Australia’s next top model if he wanted to hang around and apply.

After a lot of beach therapy and way too many photos, Mr Spoon headed off via Australia post to see the next wonderful Spoonie.

If you would like to have Mr Spoon come visit you, feel free to contact Theresa Laura at spoonsforhappniess.com.

Thank you for visiting Mr Spoon and keep doing what you doing!

 

Lennae xxx

 

Hanging on tight to Buddha.

Hanging on tight to Buddha (Photo credit: Instgram @a.m_banks).

Looking over City Beach, Wollongong

Looking over City Beach, Wollongong (Photo credit: Instgram @a.m_banks).

Wollongong Harbour

Wollongong Harbour (Photo credit: Instgram @a.m_banks).

 

Whale watching in Eden, NSW.

Whale watching in Eden, NSW.

Mr Spoon takes on Melbourne!

Mr Spoon takes on Melbourne!


Walking with ME

Walking with a view, Woonona beach, NSW.

Walking with a view, Woonona beach, NSW.

During the early days of my illness with ME/CFS (Myalgic encephalomyelitis/ Chronic fatigue syndrome) moving proved to be very difficult, my body was weak and heavy. I’m in my third year of recovering with ME/CFS and here is how I have managed to get moving again. Please note that although I have found this to help me, it may not be ideal for you. Everyone is different and this illness affects everyone differently.

When my doctor referred me to an exercise physiologist to help with my recovery, I was confused and didn’t understand why… “how could I exercise if I could barely hold myself up?”  This being my only option from my doctor, I went and gave it a go.

At the exercise physiologist I was given a couple of exercises and was told to start walking, this sounded like pure torture. I did want to get better, which meant I was willing to give anything a go.

The exercises I did off and on, but the walking I have kept and maintained since day one.  I started off with a walk down my driveway; to the mailbox and up and down 2 small flights of stairs. That was me done! I struggled up the stairs, while breathing heavily. Gradually I started shuffling a 5 minute walk to the beach. It was literally two blocks away and took me 10 minutes to get there. I started this walk with someone each time,  I was too scared to go by myself  and scared that I would fall over and be too weak to pick myself up if I ever needed to. I would stop when I got to the beach and get a chai latte. Usually I would need to rest for around half an hour before  heading back again. When I got confident I started do this walk on my own, I remember the first time I was out on my own and I was shuffling along and an elderly man passed me, I was so disheartened. The old me would have lapped that elderly man, twice!

I started to walk around 2 – 4 times a week, this become the highlight of my day and even week.  I would look forward to it, it became good for my physical health and mental health. If I could manage a small walk on my struggle day’s, then that was something and something is better than nothing. There were days where I didn’t want to do it though deep down I knew that if I got out into the fresh air I would feel better for it and I always did.

I remember one occasion I was having a bad day, I was feeling down and had no motivation to face my walk. I was mentally struggling and it was late in the afternoon. I thought to myself I need to do this walk today, I got myself together and slowly made my way down to the beach. When I finally got there, I ordered my chai latte, sat down and looked out over the ocean. I was rewarded with the beautiful sight of whales splashing around in the distance. I was so happy and proud that I had made it down, it was such an amazing reward.

After almost a year of this, things got easier and we moved into a different area.  We lived close to some shops that were under a 5 minute walk. I would walk up there, run an errand or two, have a chai latte and sit down then walk back when I was ready. Gradually I didn’t need to sit down and rest, I would find that I would be walking around for 20 – 30 minutes easily.

That’s when I took on a new challenge of walking Snow. We only had her for a few months, after a bit of walking practice around the backyard.  I started to feel comfortable walking her. We started our walks and got into a habit of walking 2 – 3 times a week, walking around a few streets in the area that would take me around 20 – 30 minutes depending on how I was.

When I returned back to work I had to make sure not to push things. Usually when I went for a walk it would be on my days off and the walk would range from 20 – 30 minutes. I took her on longer walks when we would go to the beach, they were always at a strolling pace. Beach walks were good to add in as the terrain is a bit harder to walk on. This helped build strength, we would bring Snow along to the beach and I started off by walking a quarter of the way and then back. Every-time I would go, I would assess how I felt and then turn around and walk back. Eventually after doing this for just over 24 months I made it to the end and back comfortably.

I have managed to build up a solid pace from the shuffle that I use to do back in my earlier days.  I now can complete regular walks weekly ranging from 2 – 5 times a week. I always assess how I am each day and during the week, if it feels like too much then that’s ok, I limit what I do.

I recently completed my first walking event since illness, it was 6 km’s and I completed it in 54 minutes (click here for details). My goal is to complete CITY2SURF I did it back in 2012 and loved it, due to illness I haven’t been able to do it since. It’s 14 km’s, fingers crossed next year is my year for it!!!

I believe walking can help on so many levels, do you enjoy walking or find helpful at all? Have you noticed any progress over time with your walking? I would love to hear all about it!

Lennae xxx

Walking and resting,

Walking and resting.

Snowy and I at the 3k Million Paws walk 2015.

Snow and I at the 3k Million Paws walk 2015.

We love walks when this is the view, East Corrimal, NSW.

We love walks when this is the view, East Corrimal, NSW.

Snowy in her element.

Snow in her element.

Walk selfies at the park.

Walk selfies at the park.


Road Trippin

 

 

Eden Wharf, NSW.

Eden Wharf, NSW.

 

Over the  long weekend, the Mr and I decided to road trip down to Melbourne.  I was pretty excited about the roadie, though after a full on week I was also a little concerned as to how I would pull up. I wasn’t planning to take time off for the trip but long journeys can tend to wipe me out. After a good night’s sleep I still felt a bit exhausted, mentally and psychically. However after a little pep talk and the realisation that it would probably still be good for me to get away, I got myself sorted and we were good to go. We also had Mr spoon joining us (for more about Mr Spoon click here), he had arrived into my possession only a couple of days earlier from his previous road trip (he gets around).

Our journey went via the scenic route, cruising down the coast of NSW stopping in Eden for the first night (the bottom of NSW). Keeping an eye out at Eden for whales while enjoying the gorgeous views. What I love about Australia is that there are so many beautiful coastal towns, each one just as gorgeous as the next.

We then headed down to Victoria hugging the coast as much as possible enjoying the beautiful national parks along the way, I love a good national park. We stopped off at a couple of spots along the way and enjoyed a nice walk and then ended the day in Yanakie, which borders Wilson’s Promontory National Park. The next day involved exploring Wilson’s Promontory National Park and enjoying another lovely walk. We also got to drive on the most southern road on mainland Australia. After a bit of National park exploring, we headed to Melbourne, cruising through rural Victoria and ending my part of the trip in Melbourne. Rural Victoria, the Gippsland region reminded me a lot like where i’m from in New Zealand, loads of sheep, cows, farmland and  lush green grass.  All up a total distance of driving  was just over 1100 km (not by me of course)!

Some delicious food was eaten and I think those country Victorians definitely give Melbournians a good run for their money when it comes to good food. I sensed there was a bit of competition in that area.

After spending a lovely night in Melbourne and conquering the square glass floor up the Eurka tower (it’s one way to test my fear of heights), I flew home the next day and managed everything just fine. It’s moment’s like this, that remind me that only not too long ago I wouldn’t have been able manage any of this, mentally, emotionally or physically!

Wowee it feels good to be living life and enjoying the simple things! Bring on life!

Sending lots of love and positive vibes to you all, do you have a road trip planned anytime soon? I’d love to hear about it!

Much love,

 

 

Lennae xxx

Mr Spoon whale watching in Eden.

Mr Spoon whale watching in Eden.

Rotary look out, Eden.

Rotary look out, Eden.

Cape Conran, Victoria.

Cape Conran, Victoria.

Cape Conran, Victoria.

Cape Conran, Victoria.

Birdies at Tidal River, Wilson's Promontory National Park.

Birdies at Tidal River, Wilson’s Promontory National Park, Victoria.

Over looking Bass Strait, Wilsons Promontory National Park, Victoria

Over looking Bass Strait, Wilson’s Promontory National Park, Victoria.

South bank, Melbourne.

South bank, Melbourne.

 


Singapore Cruising Adventure

Sunset on the Malacca Sea.

Sunset on the Malacca Strait.

Hello beautiful souls, long time no hear!

Apologies for the lack of posts, I’ve been off and on with the online world over the past few months. All has been going well, I actually returned from my cruising holiday over a month ago (I know, so slack that I haven’t posted about this already).

I really want to share this experience with you all. This was a huge milestone for me, filled with a lot of surprises and happy memories to go with it. It’s amazing how well you can cope when you are out of your daily routine and comfort zone. Don’t get me wrong there were a few curves balls, but its part of the experience and how you deal with it at the time. You can either fight it or roll with it.

A good friend of mine turned 30 this year and it was decided that we would along with another friend, do a 7 day cruise from Singapore. Our cruise set sail through the Malacca Strait up into the Andnaman Sea, stopping off in Langkawi (Malaysia) Phuket, Krabi (Thailand) and Sabang (Indonesia). With also spending a bit of time in Singapore, either side of the cruise. All up I would be away for a whole 14 days and I would also be flying to Singapore and back. That’s an 8 hour flight one way!
I must confess, this trip sounded scary to me, but deep within I knew it was achievable for me. I had a bit of anxiety about this trip in the beginning, as my health had been playing up when I made the booking. But I was committed to seeing this through, especially for myself. Thankfully the health issues I was experiencing were not ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) related and towards the time of the cruise, I was ready and embracing this trip with open arms.

I won’t bore you with all the details…… but here’s a little summary of how I got on. I’ll leave the rest up to the holiday snaps, they speak for themselves!

The first few days were spent enjoying & exploring Singapore. Naturally I wasn’t able to see everything, but you never can see it all in just a couple of days. After spending a lot of our days walking around shopping, eating and exploring my legs were about to fall off. I had pushed things to the limit and if all the payback I was getting was from my legs, I’ll take it! Gardens by the bay are a must, we visited them at night, but I would definitely go back to see them during the day.

Next was time to board the cruise, by then I was needing a good rest. It’s hard work being a tourist! Thankfully the first day on the cruise was just a sailing at sea day. I was able to bounce back well.  I enjoyed the luxuries on the boat and had everything right at my fingertips. A few party nights here and there with a sneaky drink or two in between. Dancing the night away like I was a care free 18 year old again, that’s what it’s all about. Yep the old body pulled up well.
Day trips weren’t too hard, I opted for the easy options and that seemed to work out well. I was extremely surprised with how well I managed it all. I guess when you’re on holiday, you don’t have to worry about day to day things or anything else for that matter. The biggest worry is what to eat, there was so much food to choose from!

The last few nights of our trip were spent winding down in Bugis, Singapore. Enjoying the local sights and exploring the area, including visiting the Meomi cat cafe. Conveniently located across from our hotel.

This nears the end of my Singapore cruise adventure, I had a wonderful time and have proved to myself that my ME/CFS days are now more like a distant memory. Bring on the next adventure, I hear South America calling!!!

I’ll love and leave you with a few of my holiday snaps, enjoy!
Do you have any holidays planned? I would love to hear about them!!!

Much love

Lennae xxx

Sunrise view from our apartment in Singapore.

Sunrise view from our apartment in Singapore.

Playing tourist, heading down to gardens by the bay.

Playing tourist, heading down to gardens by the bay, Singapore.

Gardens by bay, Singapore.

Gardens by bay, Singapore.

Breakfast at the Meomi cat cafe, Singapore.

Breakfast at the Meomi cat cafe, Singapore.

Pacific Eden, in Sabang, Indonesia.

Pacific Eden, in Sabang, Indonesia.

Langkawi, Malaysia.

Langkawi, Malaysia.

Krabi, Thailand

Krabi, Thailand

Enjoying the beautiful sunset.

Enjoying the beautiful sunset.

Walking the plank.

Walking the plank.