It's not good news. There is no cure.

If you read my last post, you would've seen that earlier this week I went to see a neurologist. As I had slowly been running out of options having had so many major tests and seeing countless doctors, I was hoping my second visit would offer me some hope. However sadly I have been told that I have an 'UNKNOWN ILLNESS' and there is NO CURE. There is no known medication to help, and basically they just sent me on my way to live and carry on as I am. It has taken a while to sink in and I am still trying to get my head around it. During the appointment my Dad (He came in with me) told the Doctor how I am passing out and having fits almost daily and on a few occasions have been close to serious injury because of falling in a bad place. Also how I am forgetting things, am in serious amounts of pain, can hardly walk, talk, have problems head to toe and all symptoms are getting worse and I am deteriorating in front of his eyes. The neurologists reply was:

'It's tricky, Hayley is as equally as disabled as someone with MS. Her body is shutting down but there is just nothing we can do. I can only suggest seeing a therapist to try and cope better with the emotional side of things'

How can somebody as ill as I am who because of an illness has such a low quality of life, no Independence whatsoever and 1 year ago was a perfectly normal girl, be told that because of a lack of knowledge of these neurological kind of symptoms I have to continue as I am with no help. I was also told I may get better after a few years, but nothing is ever guaranteed. I feel confused, frustrated and honestly I just don't know what to think or feel.

In a way I am glad I have not been diagnosed with MS or any other serious lifelong illness, but at the same time a diagnosis would allow me to at last accept what I have, and begin to educate myself on the illness. Instead I am still in the same position as I have been throughout this year - clueless.

I'm normally quite good at staying positive because it's the only thing we can do at times like this, but I am finding it extra hard at the moment.

I am also very angry at the fact that this week I got turned down for disability allowance. How ill does a person have to be to be entitled to some financial support? I will fight it though, because I believe the wrong decision has been made and I should be entitled to something.

I want to share with you this song, it's one that I like to listen to when I am feeling low. It makes me think of my best friend/boyfriend Alex, who has been (cliche moment!) my rock throughout this whole process. It helps remind me that I have such amazing people in my life who support me no matter what. :)

Any thoughts or words of wisdom greatly appreciated!

Hayley-Eszti x


  1. Girl, you're so strong. Massive love for you

    x Catrina

  2. Stay strong Hun I hope you get your way with the dla there bastards I have a disability and we get nothing even though someways I can't walk 2 minutes without being in severe pain if

    1. If you ever need to chat feel free to email me xxxx xxx

  3. This post could have been written by me just before I was diagnosed. It's so scary and there seems to be no hope. Five years on and life does continue, it changes, but there's still life there!


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