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.

 


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!


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


ME Awareness

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Hello my beautiful readers!

Today I wanted to share with you a bit of awareness about my illness. This week is ME Awareness Week and today is International ME Awareness Day, what a good time to share and educate you all.

Your probably wondering what ME is? And what it actually stands for. Let me explain, don’t worry I’ll keep it simple!
ME stands for Myalgic Encephalomyelitis, it is also known as Chronic Fatigue Syndrome (CFS) or Chronic Fatigue Immune Dysfunction Syndrome (CFIDS).

If you break down the meaning of Myalgic Encephalomyelitis this is what you get; MYA– Muscle
ALGIC– Painful
ENCOPHALO– Brain
MYEL– Nerve
ITIS– Inflammation

Quite literally that is how ME affects the body, then add on the fatigue! Sounds unpleasant right?

I could describe it as almost like having the flu 24/7, but then I don’t know if that would be giving you a full extent of what ME can actually do.ME is extremely debilitating and can take years, even decades to recover from.

It is believed that Florence Nightingale suffered from this illness back in 1857. In honour of Florence Nightingale aka “lady of the lamp”, her birthday 12th May has become International ME Awareness day.

ME has been around for a long time. However it is an invisible illness and that can make it quite hard to understand. Frankly a lot of the sufferers don’t look sick! There are no tests that can be done to show that there is something wrong, nor is there any specific medications to help. More research and understanding needs to go into this illness. Research needs to go into finding out how to prevent this illness, recovery treatments or a cure if possible.

If you would like to get involved and help raise awareness for ME, feel free to wear something blue, start the conversation with someone and help us educate one another, search the #meawareness #mecfs hash-tags on social media and read about sufferers and their stories with ME and how it affects their everyday lives, or even donate to your local ME charity!

For more information about ME or if you wish to get involved or donate click here. This is the Australian ME page known as Emerge Australia. Thank you for taking the time to read my post beautiful readers, Happy International ME Awareness day!!! Lennae xxx

Wearing a bit of blue for ME Awareness.

Wearing a bit of blue for ME Awareness.


#May12th

May 12th is international Myalgic Encephalomyelitis (ME) awareness day. For me this is a day about raising awareness for my illness. I’m obligated to raise some kind of awareness for my illness, even if I can’t get out and do a lot.

A great way to celebrate and raise awareness for this cause is to wear something blue or purple, have or host a high tea party or donate to the cause. Places around the world are lighting up buildings and homes blue or purple for ME. Some groups are hosting high tea fundraising events. I would love to be able to get out and about, or do a crazy fundraiser, however the reality is I can only get out when I’m well enough and that isn’t as often as I would like. Being around people or busy environments can be extremely challenging as well.

I’m determined to do my bit! Whether I end up having a small high tea party at home or getting dressed up in blue, I will definitely be donating to raise funds for research into my illness. I’m also participating in a blog bombing event with other sufferers that blog. We are all sharing our stories and hash tagging #May12BlogBomb. Keep an eye out on Social media or feel free to join us! If you decide to join in make sure you use one of these awareness hashtags on social media #tea4me #mecfs #spoonies #lightupthenightoz #may12th #meawareness.

People suffer from this illness all over the world, here’s a few figures to show you just how many of us sufferers there are out there;

Australia – 150,000
New Zealand – 10,000 – 20,000
UK – 250,000
USA – over 1 million

The cause of this illness is still unknown by medical professionals. This is why we need to raise awareness and funds to find out more. This illness can happen to anyone, even you! Please help me raise awareness for this horrible illness.

Bye for now

Lennae
xxx

Statistics are from the following websites; https://www.southerncross.co.nz/AboutTheGroup/HealthResources/MedicalLibrary/tabid/178/vw/1/ItemID/196/Chronic-fatigue-syndrome-Tapanui-flu.aspx http://sacfs.asn.au/about/general_info/fact_sheet.htm http://www.meassociation.org.uk/about/what-is-mecfs/ http://chronicfatigue.about.com/od/whatischronicfatigue/a/cfsfactsheet.htm
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