Wednesday, May 15, 2013

A Guest Post by A Courageous Young Woman



Until I met Hayley-Eszti in Bloggyland, I never knew anyone who suffered from this debilitating disease. I had heard of it, of course, Laura Hillenbrand, the author of Seabiscuit and Unbroken, made it better known here in the U. S. But it is different to get to  know a young, beautiful woman who has M.E. and learning from her what this disease is all about. 

After I read her M.E. Awareness post, I asked Hayley-Eszti if she would guest post on my blog so that I could help to raise awareness in my part of Bloggyland. She accepted and this is her post:


Today is international M.E awareness day. It is a life changing debilitating disease that attacks every system in the body. I have had M.E for almost 2 years now. It is an incredibly ugly neurological illness and very often destroys lives. Severe cases leave people bedbound, housebound, confined to a wheelchair and in need of everyday care. In some cases kill.

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 stigma attached to it by both the general public and sometimes even the medical profession. This is unacceptable when people are seriously struggling every single day. I would really appreciate it if you could continue to take a few more minutes to read on and help ditch the stigma and incorrect misconceptions attached to M.E.
  
  • M.E - often known (controversially) as chronic fatigue system is MUCH more than being tired. There are over 60 symptoms involved many of which are debilitating in their own right (such as fibromyalgia, immune system disorder, chronic pain, deficiencies)
  • The most severe cases of people are left paralysed, unable to speak, bedbound, housebound, in need of care and some need to be fed through a tube. Many people are forced to use wheelchairs or other mobility aids.
  • Anyone can get it. Children, teenagers, adults and the elderly.
  • Little or no support is offered by the medical profession. It is incredibly difficult to diagnose and patients are often dismissed by doctors as having a mental illness and many are given incorrect treatment that ultimately makes them more sick.
  • Friends and families often don't know how to cope or believe the person suffering is genuinely sick. This is often down to the stigma that dates back to 50 or so years ago but has somehow managed to stick around today. It IS an approvedPHYSICAL ILLNESS.
  • The cause of the illness is not known. Any theories are merely speculation.
  • Basic things become immensely difficult or impossible, washing, dressing, reading, concentrating, having a conversation, sitting in a chair are amongst them - which makes day to day life extremely difficult. 
  • People with this illness are prone to further problems due to weakened immune systems and as a result of their body shutting down. It then becomes a vicious cycle.
  • M.E is often lifelong. Until more funding and research is put into action, it will continue to be this way.

People with M.E are suffering everyday and desperately need support. If I have helped raise awareness to one person I have done good. I write regularly on my blog about my journey with M.E so have a look at my previous posts if you would like to see how I have dealt with it day to day so far and how it affects me emotionally. If you would like to ask me any questions please do so below (you can comment anonymously if you prefer to do it that way!) I will be writing and raising more awareness for the rest of the week as May 12th - 18th is national M.E awareness week so follow or subscribe if you'd like to read those too (If you are not a blogger you can subscribe by email or just add to your favourites) Thank you so much for reading, and please share spread the word.


Lots of love,
Hayley-Eszti xx




Thank you Hayley-Eszti so much for your guest post. 

Hayley-Eszti lives in the U. K. ~ Blogging helps her stay connected to people out in the world, so I know she would love a visit every now and then at: http://hayleyeszti.blogspot.com/  

Thank you so much for reading through this and for caring.








20 comments:

  1. Thank you, Inger, for inviting Hayley to guest post on your blog. I learned something... I learned lots, today!

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  2. Thanks for sharing this Inger and for your continuous support and kind words x

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  3. I know two people with M.E,. and their life is very difficult.

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  4. i have never heard of this before, thanks for putting this out there for us. it sounds really awful and i can't even imagine dealing with it.

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  5. Thank you Inger for having this very brave woman write a post about what she is dealing with.
    Hayley I understand some of what you are saying as I have had Fibromyalgia for the last ten years progressively getting worse. It is hard to help people understand and I applaud your strength. I am heading over to your blog now.
    Thanks Inger Hugs B

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  6. Thank you very much for writing this post, and thank you for hosting your friend, Inger. The Hurricane (my daughter) has a form of chronic fatigue. Fortunately, it's not as serious as some types and it's under control for now. The Hurricane kept fainting, so I took her to a pediatrician and told her I knew something serious was going on. She said, I promise you we will get to the bottom of this. She then sent us to Johns Hopkins University Hospital for tests. It was a relief to know what was wrong. It also made me realize that I have the same thing. People sometimes make fun of me or belittle me because I need quite a bit of rest and sleep.

    Love,
    Janie

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  7. thank you for the education. i've heard of chronic fatigue syndrome but not m.e. and i am aware that it is often misunderstood, undiagnosed, and ridiculed, too. bless your strength.

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  8. Thanks Inger and Hayley for educating us to the specifics in layman's terms. I understand where you are coming from with the illness that 'can't be seen' (until it's progressed as you describe).

    One of my daughters has a chronic condition that we have dealt with for about 12 years now. It started when she was 16, and I've written about it on my blog. It's called CVS, a form of mental migraine that causes the stomach to spasm violently and can last for hours and days at a time. It's not an eating disorder, but can affect those who have a family history of migraines, ulcers, etc. Nothing will stay down, the person loses weight constantly. It also took a long time to diagnose. She is managing it better with our help, but she has to battle depression when the attacks are bad.

    I will check out your blog, Hayley. Thanks for sharing.

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  9. I had heard of this condition but I was not aware of the seriousness of it. Thank you for educating me. I will visit Hayley-Eszti Szucs' post.

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  10. Thank you for sharing her story with us, Inger. This is so important to learn more about!

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  11. What a gift of the heart - taking time to share with all of us - and, to teach in such an inviting manner.

    Thank you.
    -g-

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  12. Nasty illness. Wishing you well.

    Hi, Inger.

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  13. Dear Hayley, is there any known cure for this disease? I surely never realized just how horrific it is. Thank you for sharing with such clarity. Peace.

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  14. My MIL has M.E. My heart is always with others who suffer. I know how horrid it can be.

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  15. Thank you for the information and making me aware of M.E.

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  16. Thank you for featuring her post. I had heard about if when reading about Laura Hillenbrand. It is a heart breaking disease and even more so for the lack of research being done and the cavalier attitude of some doctors.
    I will put her in my prayers.

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  17. I'd only heard of M.E. and didn't know anything about it and wasn't aware of how serious it is. Thank you for sharing your story and helping to make people more aware of this terrible disease, Hayley. Best wishes to you.

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  18. This was both astounding and devastating to read. Never have heard of M.E., and saddened at its horrific effects. Thank you, Inger, for giving this platform.

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  19. It must be horrid to suffer from an illness like this, especially when others (even doctors!) sometimes dismiss your symptoms as "nothing serious". Thanks so much for letting us know more about this disease.

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  20. Thank you both for sharing this with us. I will help spread the word about this devastating illness in the hope that the medical community will take notice and begin extensive research and study.

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Thanks for leaving a comment.. ~~ Inger

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