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.

 

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

Before I realised what had hit me I was knocked down by Myalgic encephalomyelitis/ Chronic fatigue syndrome (ME/CFS) almost a year ago. I couldn’t get back up! All my strength had been zapped from me, without me even knowing it and there was nothing I could do to gain it back.

Struggling to lift my body from my bed was a mission. Days of moving from the bed to the couch became the norm and having a shower was the highlight of my day. Just like that I was depending on my husband and parents, I was like a child again. I couldn’t cook myself dinner, let alone cart myself to appointments or even think about going to work. Little things like checking the mail or doing the washing became very challenging.

Each day become an everyday health battle, not knowing what I was up against or when I would begin to feel better again. It was hard to wrap my head around what had happened. When did I become sick? How did this all happen? As far as anyone could tell I looked healthy, but the life had been sucked out of me.

Visually my body looked normal, but I was feeling old and weary. I was so weak and slow, old people were moving faster than me. My brain wouldn’t work and my mind was a fog, every inch of my body struggled to move. I was in pain most days and had endless amounts of new symptoms that were along for the ride.

Lucky for me the reset button has been pressed and slowly but surely this 20 something year old body is slowly getting back on track. Unfortunately for some people the journey is a lot longer, it can take a number of years for some people to get there life back. I am also extremely lucky to have a supportive network around me, a lot of people with this illness don’t even have that.

My life changed dramatically with this illness and that is what ME/CFS can do to a person. It is not picky with who it chooses, it just walks right on up with those big high heels and walks right over top of you. It kicks you down so hard and then you have to try and pick yourself up again.

Today is May 12th ME awareness day. I’ve written this post today to take part with other sufferers, that blog to raise awareness. If you’re interested in reading the stories of other sufferers search this hash tag #may12blogbomb to hear about how ME has affected their lives. Please help us raise awareness by tweeting, re-tweeting, forwarding or reading some of these stories. The cause of this illness is still unknown and there is no quick fix. Medical support and research is lacking for this illness, because of this sufferers are left to fend for themselves.

Thanks for reading and supporting happy ME awareness day beautiful people!

Bye for now

Lennae

xxx

Blue for ME Awareness Day
Blue for ME Awareness Day