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

 

Walk for ME!

Taking in the view.

 

Hello beautiful readers, I hope you’re all well!

Can you believe it’s May already? Where has the year gone?!

As some of you might be aware for a few years now I have been suffering with ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome). My health is a lot better now and my days with ME/CFS feel like more of a distant memory, however May 12th is International awareness day. As we are approaching awareness day pretty quickly, I want to put it out there that I will be dedicating a huge goal of mine to raising awareness and fundraising for ME/CFS.

Back in 2012 I participated in City2Surf for the first time ever, l had a fantastic time and was eager to participate in the following years event. Unfortunately that year I became unwell with ME/CFS and haven’t been able to enter since.

Well friends, I’m extremely excited to announce that this year is the year, that I will be taking on this goal!  Exciting isn’t it! It’s been worth the wait! I have always vowed to myself that, when the day arrived I would dedicate/ fundraise my race to the Emerge charity to help fundraise for ME/CFS.

If you’re not familiar with City2Surf, let me tell you a little about it. It is a 14 km race from the Sydney CBD out to the famous Bondi beach. The event is held in August and usually attracts more than around 80,000 people, making it one the largest runs of its kind in the world. It is a fun but challenging event that is suitable for most people with a bit of a fitness level, whether you are entering for the competitive race or just for fun, dressing up is always optional. You can find all types of entertainment along the race, it truly is a fun morning out.

I am super thrilled to be entering this year, this has been something I have had my heart set on doing for a few years now. I have built up my strength day by day from being bed ridden to where I am today.

I have meet many wonderful people online, world wide who suffer with this illness. They have all helped make what was a very difficult journey a much happier and brighter one. This one’s for you team!!!

I have started an everyday hero page through the City2Surf website, this page is where you can join me on my journey. You can view my training that I will load up a couple of times a week, with my number one trainer Snowy.  I will also keep you posted on my Instagram, but for my everyday hero page click here. I would love for you all to pop over to my page, share it, donate or just say hi, Snowy and I would love the encouragement!

 

Much love

Lennae xxx

 

City2Surf 2012.

 

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.

Just a Casual 6 KM Walk at RUN WOLLONGONG!

Walking with a view.

Walking with a view, City beach, Wollongong.

For a long time now I have been patiently waiting for my body to cooperate and say “yep I’m ready to move it and be active again!”

I have maintained regular walking throughout my illness with ME/CFS (Myalgic encephalomyelitis/ Chronic fatigue syndrome). In the beginning it started off with only walking to the mail box, because at the time, that was all I could manage. Over time I have increased accordingly to what I could manage, slowly but surely I have made progress with this.

This brings me to where I am today….. Today I entered into the Run Wollongong running event and registered myself into the 6 km walk. Yep it was a little scary to think that I was taking on normal active life again, but also amazingly brilliant that I was at this point where it was an option and I didn’t have to worry about my illness or symptoms of getting in the way of it all.

Cameron and my Dad joined me, Cameron entered himself to run the 12 km race and Dad walked the 6 km race with me. It was a beautiful morning, the sun was out, blue skies where upon us and the temperature was warm. A lovely light breeze swept through towards the end of the race, which helped with keeping cool.

Proudly I can say that I kept a fast pace up throughout the whole course, finishing towards the front of our group. I felt completely in my element! I have always enjoyed walking and right before my illness, I had started to get into walking/ running events.  I have been longing to get back into living an active life for a while and it feels fantastic to be able to do this sort of thing again! Thanks body, thanks for working with me! Whoohoo!!!

Celebrations were called for and we made a pit spot at a healthy cafe that I had been wanting to try out. I celebrated with a Acai bowl!

Every proud moment or milestone is always worth celebrating! Do you have any proud moments or milestones that you should be celebrating? Make sure you celebrate them!

Much love

Lennae xxx

 

 

Start line fun.

Start line fun.

 

6 KM walk group photo.

6 KM walk group photo.

Free fresh fruit to re-fuel with after the race. A great idea!!!

Free fresh fruit to re-fuel with after the race. A great idea!!!

6 KM's done, Whoohoo!!!

6 KM’s done, Whoohoo!!!

Acai bowl celebrations!

Acai bowl celebrations!

 

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.

ME Awareness, Symptoms with ME

Photo credit: Photos_by_ambanks-  Instagram

Photo credit: Photos_by_ambanks- Instagram

It’s ME/CFS (Myalgic encephalomyelitis/Chronic fatigue syndrome) awareness day. As a yearly ritual I wanted to get on board and help raise awareness about the illness (see previous years posts here ME Awareness 2015 & ME Awareness 2014). As most of my readers know I have been living with this illness for the past few years. It is a debilitating illness that still needs a lot of research. The cause of the illness is still unknown. There is also no treatment plan for this illness and some sufferers take many years to recover. Unfortunately some sufferers do not recover.

I’ve decided to write about some of the crazy symptoms, that I have experienced with ME/CFS. I hope this helps you understand that this illness is more than one symptom and is never straight forward for any sufferer. In fact most sufferers experience a number of different symptoms and each persons experience with the illness is different.

Are you ready, here we go………

Food intolerance/ Sensitive stomach/ Digestive issues 

When your stomach decides to pack a tantrum and tell you that it does not like eating the food you like any more. What? How? Signalling back to you with stomach cramps, nausea, bloating, aches and pains or just sending it straight out! Nasty business this, I personally had it that bad that I went and had a food intolerance test done. Turns out I learnt I had a mild intolerance to two foods I causally ate, but not the rest!!! What the hell!!!

Anxiety

Oh yes that horrible feeling when your heart starts beating rapidly, you feel a hot and cold sweat breaking out and your mind races into a crazy panic state. Your breath feels shallow and is this even real or am I dreaming?  I mean where the hell did this come from!!! Fear of things that never consumed my mind before, I mean why are these thoughts clogging up my brain!!! Where has this all come from? Oh Hi Anxiety, you can go now!

Brain fog

When your brain feels like it has a thick layer of fog over it. Yep sounds strange but it is a real thing. Causes confusion, self-doubt, lack of focus or concentration and makes you do and say strange things. Strange things that your dog would appreciate, like being fed twice for breakfast. Or when you start repeating yourself and asking the same things over and over, because you don’t remember asking them just a minute ago. Oh dear!!!

Muscle aches and joint pain

Yep that’s right! When your body feels like you just ran a marathon, but all you did was walk 20 steps.  Muscle and joint pain from moving too much, as well as from not moving enough!  What!?  I know it blows my mind too, but it is a real thing. If you try and push yourself a little with any type of extra activity, it can result in extreme muscle or joint pain and then it’s back to bed for days. Making you feel like you physically got hit by a bus. If you don’t move your body enough your body ceases up and becomes stiff resulting in muscle and joint pain. Even the weather can influence this symptom. Aches and pains in the cooler weather as well as in the humid weather.

Extreme sensitivity

A really weird symptom that can cause extreme sensitivity to all types of things like noise, people and their energy, smells, sunlight, cleaning products, cosmetics, skin care products. How this works is when you may feel like you are having a reaction to it. You might feel instant fatigue, feel itchy or heavy. Smells may irritate you, you can’t even be in the same room with someone if they’re wearing perfume. Even cosmetics or skin care can feel heavy and irritate the skin.

 

I could go on with the list of crazy symptoms, here’s a few more just so you get the idea; fever, memory loss, heart palpitations, muscle weakness, dizziness, headaches/ migraines, insomnia. They all come and go with this illness, but there is honestly too many to list and everybody that suffers with this illness suffers very differently.

I hope this has helped you learn a bit more about ME/CFS and has given you a little more insight of  some of the symptom struggles sufferers go through.

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

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

Much Love,
Lennae xxx

Photo credit: Photos_by_ambanks-  Instagram

Photo credit: Photos_by_ambanks- Instagram

Cruising Holiday

Credit Pixabay

Credit Pixabay

As I’m getting better with my illness (ME/CFS) I’m starting to feel more confident and adventurous. Last year the husband and I went on a NZ adventure which was a huge success. I’m now more than ready to push the boundaries a little, plus I need to test the waters and see how I’ll pull up for my big 30th trip next year (I have huge trip goals)!

One of my beautiful friends is turning 30 soon, she decided that she wanted to go away and I was more than happy to tag along and celebrate with her. After a number of conversations across the ditch with her, we came up with the idea of going on a cruise!

I have always heard people rave on about cruises, my thoughts however have been that they are mostly for old people, or the thought of being stuck on a boat out at sea would be boring. I guess it’s one of those things that you shouldn’t knock until you’ve tried it.

Having chronic fatigue has made me think that a cruising holiday will be quite ideal for me and my holiday goers. I have done some research and educated myself on cruises and I want to share with you all why they could potentially be a great way to holiday! Especially for my fellow friends out there, that suffer with an illness that restricts you from doing things.

  • You have everything available to you on board, it’s like a mini village on a boat, but moving and at sea.
  • This means you can basically do what you like on board. If you want to have a nice meal and get dressed up you can, or if want to lounge by the pool all day you can. If you’re not feeling up to the day trips or don’t feel like doing much while on your cruise that’s fine.
  • If you’re having a rough time, no problem chill out, do what you need to do. No need to worry about your cruising party, there’s plenty to do and plenty of new friendly faces to meet.
  • A medical team is always on board and are there to help if you require it.
  • Food, there are so many options available, did I see a smoothie health bar somewhere!?
  • The best thing about a cruise is that you’re not missing out, your still holidaying and getting away, sometimes just a change of scenery is all you need.

As I haven’t actually cruised yet or cruised before, I got talking to the lovely Sophie from the Cruise Agency. She informed me of a lot of exciting healthy and relaxing options that are available while on a cruising holiday.

Here’s what I can look forward to on board;

  • First and most importantly there’s a day spa on board. Take your pick from massages, hot stone, facials, body wraps, scrubs, spray tans, you name it.
  • If you have a love for alternative medicine/ natural therapy you can find acupuncture or reflexology on board.
  • Experience and enjoy the many different relaxation rituals available at the Thermal Suite, with heated beds, showers and a collection of exotic steam vapours throughout. Or try Rasul, an Arabian cleansing ritual of chakra muds and aromatherapy.
  • Exercise classes are on board as well as yoga, pilates and a gym! If you need to keep at your  daily exercise routine there are plenty of options to choose from. I know I love to keep my daily steps up on my fitbit and I’m a huge fan of yoga!
  • Healthy food options and dietary needs can be catered for. The food options are endless with a selection of cafes and restaurants on board.
  • Library, if you enjoy a good book and looking for a relaxing quiet place to read you have options.
  • Crafting, scrap-booking and board gaming, are quiet enjoyable activities to relax too.

Wish me luck on my cruising experience, I’ll be sure to share it all with you once I’ve had my cruise in a few month’s time. It could not come any sooner!

If you’re interested in cruising head over to the Cruise Agency website and chat with the lovely Sophie, she will point you in the right direction.

Much love,

Lennae xxx

Credit Pixabay

Credit Pixabay