Saturday, May 17, 2014

She Is My Hero: A Courageous Young Woman Shares Her Experience With M. E.

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: 

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.



Hospitalised

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 


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: 

http://hayleyeszti.blogspot.com/2014/05/the-visual-campaign-me-awareness-week_16.html


Strength does not come from physical capacity. It comes from an indomitable will.

~ Mahatma Gandhi


And in the case of Hayley-Eszti, I say Amen to that.












21 comments:

  1. God Bless your friend Hayley! As a fellow chronic pain sufferer (from something different) I understand the frustration of not being able to do things you once did and trying to convince people that your not making stuff up...ugh! This was a great read...helping bring her battle to light...the more people are aware, (hopefully) the more empathetic they will be.
    ~Katie

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  2. a very strong young woman, spreading an important message.

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  3. Bravo for Hayley-Eszti! I have a text box about her promo in my sidebar to help a little bit. If it hadn't been for you having her guest post last year, Inger, I wouldn't have known her.

    I identify with Hayley-Eszti's concerns as my daughter with a chronic illness also has experienced that 'lack of understanding of diseases you can't see'.

    Very nice of you to feature her, Inger, and I love those photos in her promo at her site. Hope you and family are feeling better or at least healing.

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  4. Hayley-Eszti is really a very courageous woman and she is an inspiration to many people.
    Inger, you did a great and important post. Thanks!

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  5. Thank you Inger for sharing her story with us - undiagnosed or misdiagnosed diseases really hit hard for women...

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  6. Thank you Inger! I am so thankful you have shared this and forever grateful for your friendship and support. I hope things go ok with you and your husband, I will be thinking of you often. I will keep coming back to check the comments from your lovely followers. Take care, lots of hugs!
    Hayley-Eszti

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  7. Thank you, Inger, for sharing this.

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  8. Inger, thanks for sharing Hayley-Eszti's important message about M.E.
    I find her so inspirational and admire her strong spirit and willpower. She is an incredible human being.

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  9. This is very informative, I had not heard of M.E. before, and this young lady has a great bold spirit.

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  10. I have to be honest - before today i had never heard of it.

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  11. What a moving post. What a determined and lovely young woman.

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  12. Thank you for sharing this Inger

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  13. She is a very courageous, strong woman.

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  14. Hi Hayley and Inger - you've a real friend here ... spreading your terrible disease ... we don't understand you are right, but we can read and feel through your words ...

    "The effects 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. "

    I hope it eases as time goes on ... with thoughts and thanks for such a good summary about M.E. ... Hilary

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  15. I will visit Hayley's blog right now. Thank you for the post. You are a great friend.

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  16. My eyes are teary reading all the comments, I must go visit each persons blog once my energy levels are high enough (it has been an exhausting week!) I'm so moved but all of the kind words, I am so overwhelmed right now!

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  17. I had never heard of this before... thank you for enlightening me. What a strong woman she is!! None of us know what another may go through. Bless her heart.

    Gracie and I would be honored if you decide to share her post as a guest post.

    Praying for good health your way :-)

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  18. Hey thanks for sharing this. my brother has been ill for years and they cannot figure out what is wrong with him. In fact they are saying it is all in his head. I will mention this to him and maybe he can get checked. As sick as this sounds, I actually hope that this is it because he needs answers. Poor guy!

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  19. Hayley's first-person account of ME is very powerful, Inger. I do know others with this debilitating syndrome and have seen how it affects all of life. I do understand how misunderstood chronic illness is and I hope that the medical community will strengthen the support that sufferers need. Hayley is very strong to be able to share her story.

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  20. Thank you for making us all aware of Haley and her difficult journey. These puzzling illnesses are so tough because sometimes the "healthy world" does not always understand and have much compassion. Someday, somewhere we will find the answer.

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Thanks for leaving a comment.. ~~ Inger

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