International M.E awareness day! My story

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!

Niagara Falls Blue International M.E Awareness Day
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.


Bow down to Stephen Fry!


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


















Hospitalised


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.







24 comments

  1. You go girl! Great post, Great to see you spreading awareness and helping so many people. Love to you!

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  2. Incredible, inspirtation, u are strong an so brave hunny!

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  3. So proud of you for always sharing your story, and promoting awareness. It can't be easy! You are amazing.
    x Tash

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  4. Such an inspirational post. Thank you for taking the time to share the awareness with us all. You are so strong and have such a great attitude. <3

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  5. Wonderful, simply wonderful. Shared on facebook too, lets get the word out there today for awareness day!

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  6. Great post 👍 I've turned up at my hospital so many times because I've had a flu on top of my M.E. and other things but they have never ever admitted me, they just send me home. So now, no matter how much pain I'm in or how much is wrong with my body I never go to the hospital, it's a waist of energy and I come home feeling 10 times worse from the journey :/ People need to start realising that this is real, and so dangerous! Rant over :) I hope you enjoyed your little tea party, it looked lovely. Hugs ❤

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  7. It must be so scary, but you are turning something negative into something positive by helping others. You are doing a great job. The niagara falls turning blue = incredible and so pretty!

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  8. Credit to yourself Miss! I love Stephen Fry, so good he supports ME

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  9. This was a great, very informative M.E. post. I wish I could go back & re-write my M.E. Awareness Day post...it's very personal but not exactly informative.

    Sally

    http://www.wheelingalong24.com

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  10. Your strength and courage is countless. You deserve to get better, everyone will CFS does. Prey they find a cure.

    Peace and love

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  11. What a great post to raise awareness. I didn't realize you got hit so hard and ended up in the hospital. Thanks for being an advocate. I'm often reluctant because I just don't enjoy the stigma that goes a long with people knowing and all the ignorant things I have to hear...

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  12. Thank you for all you do for ME sufferes. Im overhwlmed with how much people have done today. We are such an amazing community to be a part of!
    Get some rest now

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  13. lots of love, gorgeous xxxx
    http://my--socalledlife.blogspot.com.es/

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  14. You are an inspiration to everyone, when I want to mope about my illness, I just think of you. I think how lucky I was to be well until I was almost 50! And to get something that could be controlled for many years so I could walk and work and take care of myself.

    I have copied it and will post on Saturday. I think it will be good to spread leave it to then, sort of make a week of it. I will see what Jim does too. Take care, my inspiration, my friend. ~ Inger

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  15. Scratch the word 'spread' from my comment.

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  16. Love the Niagara Falls!! Sent an email to you today :) xxx

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  17. Brilliant post as always, spoonie sis! x

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  19. Excellent post! I posted it on my facebook page. Thanks and take care!

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  20. You are really amazing.
    I can't imagine how horrible it is, especially for people like you who beforehand were fit and healthy and had no concerns about falling incredibly ill.
    I think you're doing a fantastic job at speaking on behalf of people with ME because, before I discovered your blog, I was one of those who didn't really know about it/understand it but now I'm completely enlightened and sympathetic to all!

    xo
    www.thisisfrancescarose.com

    ps. the photograph is beautiful. Go Canada!

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  21. Another brilliant post from a brilliant person! You explain it all so well and so honestly. It's so bittersweet to read other sufferers' blogs because while it makes such a huge difference to know that you're not alone, it's so upsetting knowing how much others are suffering. None of us deserve this - which is why awareness is so important!

    So much spoonie love coming your way.
    Katharine xx

    http://katharineandme.blogspot.co.uk/

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  22. This was shared on my Facebook and it has touched me. You strong and brave lady. You keep spreading awareness, one day it will be understood with people like you doing things like this.

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  23. I just did a post and did a link to your guest post on JIm's blog.
    I hope my little post is okay and that you don't mind the little photo of my get well card that I put on there for you. I love art, don't you? xx
    Take care. Love, Kay

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  24. Thank you so much for helping raise awareness by participating in the #May12BlogBomb.
    Over 100 posts resulted, and links to the others can be found here: http://sallyjustme.blogspot.co.uk/2014/05/May12BlogBombLinks.html

    Perhaps we’ll try this all again next year!

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