New Diagnosis - M.E / CFIDS


I went back into hospital just after my Birthday and at last I have been given some answers to many of my unanswered questions. I have been diagnosed with M.E/CFIDS - Myalgic encephalomyelitis / chronic fatigue and immune dysfunction syndrome. The condition is referred to by several different names purely because the medical profession can not agree on a name because the complex range of symptoms doesn't make it very easy to sum up. It is also known as CFS and PVFS (Chronic fatigue syndrome and post viral fatigue syndrome) Confusing right!?

It is still a relatively 'new' condition in the early stages of research. There are even many places in the world that still don't accept it to be a genuine illness, and even here in the UK there are Doctors who think it's all in the head, which is completely ridiculous. A lot of research needs to be done, because this is a devastating and disabling illness that should be taken seriously, because the majority of people living with it, assuming they have even told they have it, just have to get on with it without any help and that is not acceptable, for a person with M.E or a person with any other serious condition.

I'm glad to have been given a diagnosis at last, so I know now what it is I am tackling, but also like any major illness nobody wants to be told they have it. For me the most difficult part of the diagnosis is that there is no known effective treatment, very little support, and an enormous uncertainty about the future. Many people with M.E spend many many years fighting it and trying to live with it but are faced with severe relapses and set backs, although some people can recover after about 2 years and go on to live a normal life again. I was told that my particular case is on the top end of the scale and I am one of the worst affected patients that the specialist has seen in her whole 20 years, so that's not too reassuring  However I WILL fight, like I have done throughout the whole epidemic, and it will take all my physical, mental and emotional strength at times, but eventually I will get back to being Hayley again, I might be a little different, but I will be a stronger Hayley nonetheless. 

I will continue to share my experience with what I choose to refer to as M.E, and hopefully I can help even 1 more person out there become familiar with it and all the trouble it goes hand in hand with. I'm still also dealing with the unknown neurological illness too, but I'm trying SO hard to stay positive about everything, which recently has been extra difficult. If anyone reading this has M.E, please get in touch with me I would love to talk to you about it, right now I'm trying to learn about the condition a little more and the best way to learn about it is by talking to survivors.

M.E makes every part of me feel so weak, but in many ways I feel stronger than I ever have. Life works in funny ways.



artist John Edwards

More info about M.E here: www.actionforme.org.uk


Love Hayley-Eszti xx

18 comments

  1. Thank you so much for the follow.^^
    Follow you back on bloglovin #6.
    Lovely greets

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  2. Replies
    1. Clearly you haven't read this? There is nothing beautiful about being this ill.

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  3. Have you been on Phoenix Rising? It is an M.E. site with a really good forum. Their info and research reports are up to date and invaluable, as you may find you want to start looking into options outside the NHS for 'treatment' and/or symptom management. I have found my most success in pursuing various protocols that I have researched and organised myself. IMO, the NHS has severely let me down over the years, on all aspects of my various health problems - misdiagnosis galore and no treatments even for treatable conditions.

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  4. That sucks! But I'm glad you got your diagnosis! I hope you feel better :)


    www.freshminhtea.com

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    Replies
    1. It does yes, but having a diagnosis should help, thank you

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  5. Can't write much now. I'll be reading. Good luck. :)

    Elizabethmilo.com

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  6. Hope you get better soon too, love the picture you chose btw, so fitting and cute. So glad I clicked on your comment that led me back to your blog, your posts' contents are info and image juicy so expect to be seeing some regular comments from me. I've just posted up one my most PROVOKING outfits featuring Erdem's runway printed neoprene coat and matching heels, do tell what you think on the craziness and l hope it entertains ;)

    xx The Provoker
    http://www.the-provoker.com/2013/02/erdem-ocratic.html

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  7. Beautiful picture ;)

    Following you now on bloglovin :) Hope you'll follow back.

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  8. I feel so bad for you to have to deal with chronic illness at such a young age. I have type 1 diabetes which of course isn't always easy to deal with, but at least I have some control over it. I think it's a good idea for you to keep writing in your blog. I have met so many wonderful and supportive people through blogging, it always amazes me. I think you may find help and comfort from your blogger friends on this journey. I only follow blogs via Google Friend Connect and I don't see it here, but I will add your blog to my sidebar so I can see when you update it. I hope you will keep it up. Thanks for deciding to follow my blog. It's an all over the place blog, I like to write about a lot of stuff that comes my way.

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  9. You must feel relieved knowing what it is that you are dealing with- what you have been struggling with... When I first found out what I had my feeling were a mixture of relief, an odd happiness kind of feeling - mixed with anger, frustration and sadness. I wish you strength to continue to feel strong, supported and hopeful. I hope your dark days are only brief and that you find encouragement in daily small gifts from the universe.

    Thank you for following my blog...I don't know how to follow yours but I have subscribed. I will continue enjoying your posts and take care :)

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    Replies
    1. Thank you so much Rada, I felt those same emotions too. Your kind words and support really mean a lot to me x

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  10. I've never found another blogger to also have m.e, I was diagnosed at 15 after year's of the un-known so I know how you feel with finally being diagnosed, hope you're okay,
    I know saying 'I hope you feel better' won't really help but I know what it's like and the whole support side of the illness, so I hope you improve soon!
    It's not really common to find younger people with m.e (that i've found) so if you ever want to chat then I'm here!


    Love, Sjmwell x

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  11. Hi Hayley

    I thought I'd come and say hello on your blog. Thank you for your lovely kind words on my blog. You're very right, it is a very poorly understood illness. I found it incredibly surprising how misunderstood it is with a lot of people, and the ignorance leads to some difficult situations. I've had many friends become upset when I cancel a visit, or people who tell me they are tired all the time, so must have it to. It's hard to explain to people who aren't fellow sufferers how much of an impact it has on a life.

    As much as I don't want to, I have to consider it every single day, and it sounds like it's similar for you.

    Your words meant a lot to me, and it's always a bittersweet mix of good and bad to meet fellow sufferers! Take care. xx

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