* I've changed the blog address from www.sarahsworld.me back to the original (badly chosen, but I'm stuck with it) address of www.kiwikchat.blogspot.com .

This means that some links to older posts and old links from other sites don't work. :(

Saturday, January 22, 2011

What to do with the new 'ME'?


Hope you are all recovering and resting up after the fun of the festive season!

Sorry for the long gaps between posts. 

It's been a rough start to the year for me with lots of crashes and boundary lines redrawn.

I have to say a big thank you to my main supporters, family and friends.  Couldn't do it without them.


Since the beginning of the new year I've been wondering,   what happened to the old me, the fit enthusiastic girl always willing to go the extra distance?  and how will I live with the new me?

Learning to let go and accept the new me. 

I've gone through all the stages of grief for the 'old me',

- Denial.  I kept thinking, 'this is just a normal virus, I can shake this off'.  This stage was characterized by a push-crash cycle and relying on a few drinks to feel physically good at social occasions.  A couple of glasses of wine and I feel fine! Except it would take me a week to recover.

- Anger, furious at the world.  How can there be no definitive test or cure! How can this happen to me again.  I had thoracic outlet syndrome as a teenager which led to having to finish high school by correspondence and I was furious to be 'the sick one' again.  Apparently I wasn't the best company while in the angry period.

- Bargaining  Dear body,  If  stick 100% to the right diet, cut out all the unnecessary crap, will you make me well?  I promise not to forget how sick I've been and won't take anything for granted.  I won't over exercise again, I will place sleep on the top of the priority list if you just let me recover.  Obviously this bargaining didn't work.

- Depression.  Life is over as I know it and I can't contribute anything worth while.  A month of despair isolated in a temporary apartment while I struggled to make work phone calls and pretended to Mum I was okay. Well I still revisit this stage, during crashes I feel physically heavy and unable to lighten my mood, I cry a lot on those days.  Hook me up to the water supply and I could end the drought!

- Acceptance.  Life is over as I know it and I'm adapting to my newfound limitations.  On good days this is where I am.  Kind to my body, I know it's not betraying me and is actually working really hard to fight this thing.  So I feed it, rest it, supplement it, carefully exercise it and above all love myself.   I manage to appreciate the small things, like the sunshine or a beautiful vista, the nice lady at the pharmacy and the marvels of modern social media

Great so I've worked and reworked through all the stages. I am doing all the right things to the best of my knowledge and ability.  Now comes the really tricky question:

Will I ever get better? 

I hope so. I've even mapped out a low stress, not too challenging career change pathway.  Which is huge because I usually go for the hardest thing I think I'm capable of achieving.  I've learnt however that it's smart to give yourself a buffer and avoid a burn out.   I like to think that in the 'healthy future' I will be able to look after myself and monitor my health successfully.

But what if I don't get better?

This is the scary unspoken question that runs through my mind, a lot.  I don't want to be negative because that could make me sadder and sicker, but it's a possibility.  What if I don't get better? 

I can't control this so I try not to stress about this possibility, I don't have much spare emotional energy anyway.  I've decided that if this happens I'll have to chose a less physically demanding career that can be done from the bedroom.  Just like the inspiring ME/CFS sufferer and author Laura Hillenbrand, who wrote Seabiscuit from her own bed.  I don't think I would be necessarily as successful as Laura Hillenbrand but I would try to keep my mind busy and give it a good shot.

I really hope I get better!


  1. i really hope so, too. your words are exactly what i feel constantly. the up and down, back and forth roller-coaster which also uses up a lot of energy. it makes me so said, that i just type in "me/cfs blog" in google and there you go, reading stories about how you feel and about your deep hidden thoughts that make your life so crazy difficult - but if you tell friends, they cannot understand it. i wish you all the best and keep fighting. i will do so, too.

  2. Hi Jon,

    Thanks for your comment.

    It is sad isn't it, I know when I got ill with me/cfs and started googling it, I was shocked by the sheer numbers of people suffering with it. I felt bad for myself as well as being distressed that so many other are going through the same symptoms...wouldn't wish it on anyone. It has been and is a journey of self discovery to say the least...who are you really when all the 'doingness' is stripped away. If coping with and struggling with me/cfs is anything to go by ..I'd say we are all fighters!

    Good luck in your battle, lets kick this bloody illness for good!

    THanks for sharing.