"I'm so fed up with this"!!!: It's been Dec 2011 since... - NRAS

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"I'm so fed up with this"!!!

It's been Dec 2011 since I stared having symptom's. Apparently still "unstable". I want to walk the Great Wall of China and climb kilimanjaro!! I'm 45 and frustrated - this should not be happening to me! x

7 Replies

Yes i know what you mean. Hubby has retired and we were thinking where we could go to now he has finished, no such luck as i am suffering as well. Great wall of china, have never fancied doing that.You are braver than i am. Good luck to you,you will get there when you have stablised and it will come i can tell you that much. Best of luck.. Sylvi.xxx


December 2011 isn't that long ago Noirin - I was diagnosed then after 9 months of hell and am now walking up and down our steep hill like a breeze. You will get to the Great Wall and Kilimanjaro in the end I'm sure if you are only 45 now! Tilda x


dont give in to it allways say things might be better tommorow cos somtimes they are not much but some times a bit.

i have not got a dagnosis yet and know how frustrating things can be trying to do things that you used to do i was fine up till april with a bit of knee ache somtimes in the winter then crash bang wolop whats this all about.

iyou are among freinds on here for information so dont feel stupid in asking anything about anything cps someone will have experienced it

all the best keep ya chin up


Hi Noirin,

Give yourself time to get meds sorted then book that holiday to Great Wall of China - I went a few years ago through a company called Explore - we had ten days on different sections of the wall and it was totally amazing. Some sections were a little harder to walk than others, but it was a fantastic experience I would recommend to everyone, but take the rubber ended trekking sticks to help on some of the uneven or steep sections.

I just turned 46 and was diagnosed this Feb - but I sure wont give up on my dreams - they are just on hold till meds actually work.

Good luck.



Hello Noirin,

You'll get there. It still takes a little while to sort out the best meds for each individual but they are so much more effective these days and I'm sure that you won't have to wait too long before they stabilise it.

In the meantime, try to keep your joints flexible and keep your stress levels as low as possible. I'm sure that you'll be running up that hill like Kate Bush before long. xx


Hi there, I think you've only been on the disease modifying drugs for just a few months? You will get better than you are now, it's just that everything takes soooooo long. Like creaky says, keep your joints as flexible as you can for the moment with gentle stretch exercises and do what you can when you can. It took me well over a year to stabilise to any great degree, but I could now contemplate a big trip like that with a bit of planning and some care, and maybe a bit slower than others. This disease turns your life upside down, but it doesn't stop it so keep on dreaming your dreams. Polly


Hi all, thanks for word's of advice and support. Feeling a bit more positive. x


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