Tuesday, May 13, 2014

Tuesday Guest Post By Haylay-Eszti


Hi everyone. Today I want to introduce to you a young woman who has been battling with a chronic immune disorder for a few years. Her name is Hayley-Eszti  (click for her blog)
and I have been following her and her fight with this disease for a couple of years now.



Here is her story:

This week is M.E awareness week, and Jim has very kindly offered to help me promote awareness through his blog. Thanks Jim!


M.E stands for myalgic encephalomyelitis 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 lifelong 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 its mildest form. Severe cases leave people bed bound, housebound, confined to a wheelchair and in need of everyday care. In some cases it can even kill.


There is no cure, and no known medical treatment other than pain relief, and sadly in many parts of the world it is still unheard of, passed off as a mental illness and mistreated, which is why raising awareness is so crucially important, because spotting the symptoms early could save your life both literally and metaphorically.


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


The affects of M.E are on a par with Aids and Cancer, it's chronic and there is no known cure or effective treatment. Despite M.E affecting millions of people around the world there still seems to be a misconception that many of the sufferers are attention seekers or faking it which couldn't be farther from the truth. Why would anyone purposely want to do that to their lives? It is an obscene judgement. I hope by reading this I am helping you understand M.E a little better. Many sufferers not only have to fight through the physical symptoms everyday, they also have the emotional side of it to contend with which is equally as difficult and draining. When all you want to do is get better and live your life it can be very hard to deal with emotionally, and it can lead some sufferers to become depressed. In spite of that, many people with M.E use the little energy they have to promote awareness so the next generation of sufferers have a better chance of being supported and treated how they deserve to be treated - with respect. 


I have been living with M.E for three years now. It has completely changed me as a person and I have become stronger even though I am not strong physically. I don't know what the future holds, but I am hopeful and optimistic that a cure will be found. We must never loose hope. If you would like to donate a small (or big!) amount into vital research, you can do so through my friends 'justgiving' page here: 

https://www.justgiving.com/Anna-Jones13

Thank you so much for reading and if you'd like to know more, please visit my blog and get in touch!
www.hayleyeszti.blogspot.co.uk 

13 comments:

  1. Thank you so much for sharing this information. God bless your sweet heart. My daughter and I have a form of chronic fatigue. She reacts by denying she has it. I admit to it, and even my own son makes fun of me for it.

    Love,
    Janie

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    Replies
    1. It is very hard to accept Janie, but being made fun of for being sick is not nice, I know many people don't see it as being serious or it can seriously blight lives. I wish you and your daughter all the best, I hope she can accept it soon, and work on coping with it. All the best, Hayley-Eszti

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  2. Thanks very much for this post. Laura Hillenbrand, the author of "Seabiscuit" and "Unbroken" is one of my favorite writers and she has Chronic Fatigue Syndrome. Very often she is confined to bed and it takes her many years to write a book. The last book that she wrote, "Unbroken", was named the best non-fiction book of 2010. It is now being made into a movie with Angelina Jolie as director and will be released this Christmas. Mr. Louis Zamperini had been telling his story since World War 2, but it took someone with Chronic Fatigue syndrome to get it out there!
    I do hope that one day they will find the cause and cure for this. Thanks again for this post. I will try and do a post this week and link to it.
    God bless!

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    Replies
    1. I've never heard of her before now but I will be sure to read her book and look out for the film, I know how challenging the smallest of tasks can be, so for her to be so successful should be celebrated! Thank you In advance if you are able to link my blog, it is very kind.

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  3. I will have to read up on this - not that it will do me any good. I have a "Princess and the Pea" problem. I wonder if it is related. I try to ignore it, as I have been kidded about it for years.

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  4. Thanks for giving Hayley-Eszti a chance to fill us in on this, Jim. Your photos show the affect of flowing water on rocks, and perhaps, could also suggest the changes possible if we slowly work away at the things that need to be addressed in life. It is important for us to learn about and support those with illnesses we can barely dare to imagine. Thanks, Hayley-Eszti. Your description of M.E. is heartrending. I hope a cure, or at least some way of lessening the symptoms, will be discovered soon.

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  5. Thanks, Hayley-Eszti! This was an informative post. I have a friend who has struggled with CFS for many years. I'm am sorry that you are experiencing this, but I'm glad to see that you are fighting back by disseminating information. Take care!

    Jim, you're stacked beach cobbles are gorgeous!

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  6. Jim, thank you so much for this. I have been overwhelmed with the support I have had since yesterday, I am welling up right now because strangers, are reaching out and wishing me well and supporting me. It has touched me deeply. Thank you for allowing me to share this, and I love the photos too. Lots of love being sent your way!

    X Hayley-Eszti

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    Replies
    1. I has been my pleasure to do this for you Hayley-Eszti. I am happy you have gotten more support, every little bit counts.

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  7. A great post to raise awareness of this debilitating illness.

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  8. I knew very little about this terrible disease. Thank you, Jim and Hayley-Eszti

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  9. Thanks so much, Jim, for providing this forum. A

    nd thank, Hayley-Eszti, for enlightening me. Wishing you well and hoping this gets the attention it warrants and deserves and that those living with it get the respect they deserve as well.

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  10. It's sad that people thinks that chronic fatigue is a made up disease. I wish Hayley-Eszti well.

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Hey, I really like your comments and appreciate the time you took to do so.

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