International M. E. Awareness Day was May 12th and this year, as she did last, Hayley-Eszti shared her experiences and knowledge of this horrific and often misunderstood illness on her blog.
Last year, she guest posted here as well, and this year, we are doing it again. All in the hope of spreading awareness of M.E.
This is Hayley-Eszti's post:
This is Hayley-Eszti's post:
Today is international M.E awareness day! If you've been reading my blog for a while then hopefully you know a little bit about the illness now, but if you're still unsure about what it is, this post is going to help refresh your memory. But first, I just have to share with you this amazing photograph of The Niagara Falls being lit up blue and purple (the official awareness colours for ME and fibromyalgia) Every year the beautiful Canadian nation light up the falls on May the 12th, which is amazing!
My M.E story began sometime in my teens. I still don't know exactly when it hit me, because looking back I had a slow insidious onset and I have no idea when I first started getting ill, or what even caused it. I was fit and healthy - at least before, so I had no reason to worry about ill health and mostly passed off feeling tired and generally not quite right as a result of all the exercising I was doing! (I was at dance college and also a trained aerobics instructor) I didn't know then that things were soon to become very serious indeed.
When my M.E really hit me, it hit me hard. It was Christmas time so I remember it well. Christmas day I was perfectly fine, and by New Years Eve a week later, I was paralysed and couldn't move. I was hospitalised with a suspected brain injury, that's how serious ME can be, so bad they could even question something so sinister. Since that time three years ago, I have been hospitalised, suffered from amnesia, spent most days in bed, and I've even stopped breathing a few times too. Scary right? You can't make up those sort of symptoms, so why people still believe ME is not a real illness is beyond me.
So what exactly is ME anyway?
M.E stands for myalgic encephalomyslitis but it may also be known as Post Viral Fatigue Syndrome (PVFS) Chronic Fatigue Syndrome (CFS) or Chronic Fatigue & Immune Dysfunction (CFIDS) confusing right?! It is a life changing and life long neurological disease that attacks every system in the body, including the brain, nervous system and immune system. It is an extremely debilitating illness even in it's mildest form. Severe cases leave people bed bound, house bound, confined to a wheelchair and in need of everyday care. In some cases is can even kill. We aren't even touching the surface though. The affects are endless and we must not forget the emotional impact having the illness has on a persons life. To be stuck in bed, unable to work, socialise, or do very much at all is devastating. There is currently NO CURE.
So what causes M.E and who can get it?
Absolutely anyone can get M.E. Babies, children, teenagers and adults. There is no proof as to the cause, but many people get the illness following a virus. Other triggers may include an operation or an accident, although some people experience a slow, insidious onset. It is more common in females.
How common is M.E?
Official statistics are unknown but it it is estimated that it affects
250,000 people in the UK
800,000 people in Canada
150,000 people in Australia
Over one million people in the USA
Why raising awareness is so important
M.E is still massively misunderstood and undermined, by Doctors and the general public. If you catch it early enough, you can control your symptoms and save your life both literally and metaphorically. The longer it is left undiagnosed, the bigger the chance that you will be left severely ill and disabled.
It is also hugely important that people start to understand that ME is not a joke. Millions of people worldwide suffer with the illness and the majority of them are being left to suffer in silence. In some countries, people with the illness are put into mental institutions and disowned by family and friends. Sufferers are battling so hard to get through each day, and they need support. They don't need to be questioned and made a mockery of, joked about (I'm looking at you Ricky Gervais) or to hear comments such as 'you just need to have a positive mind' We want nothing more than to get better, simple as that, but in the meantime we want people to treat us with respect and understanding.
I hope I have helped you understand M.E a little more. If you have any questions leave them in a comment below or contact me directly through my twitter, instagram or gmail. Make sure you come back later in the week because I will be sharing my ME campaign, and I can't wait to share it with you all!
Thanks for taking the time to read this, feel free to share it!
Lots and lots of love, and happy awareness day to all ME CFS sufferers worldwide!
Hayley-Eszti is my hero because she has found a way to deal with her illness through incredible strength, indomitable will, and a wonderful sense of humor. She has reached out to the blogging community and found many friends, and also, and of this I am sure, helped and encouraged many others who suffer from M.E. and related illnesses.
You can find Hayley-Eszti's blog here. Go and visit, she will light up your life. I promise you......
Below is the link to Hayley-Eszti's Visual Campaign where you will meet her in photos as well as words; a stunning and strong woman by the sea:
Strength does not come from physical capacity. It comes from an indomitable will.
~ Mahatma Gandhi