Saturday, 18 January 2014

Alive but not living

As this is my first bog of 2014 I`ll start by wishing you all a `Happy New Year`.

My last blog was one of hope for the year to come. However during the period of Christmas and New Year extra demands were made on me and I found myself going outside of my energy envelope.

So now I`m in payback time. My level of health has deteriorated. It`s depressing to have gone backwards. It makes me wonder if I will ever truly recover. I know that sometimes we have no choice but to step outside our energy envelope but it`s so unfair that for a little extra enjoyment and pleasure we also suffer.   

I read that 6th January is considered the most depressing day of the year. 
Yet I would be glad to be going back to work! It makes me feel depressed and frustrated knowing that I`m not well enough to work. What`s more I`m unlikely to ever recover enough to do so. I would gladly swap my life if I could. 

It makes me feel as if I`m alive but not living.

Alive but not living

Alive but not living
My life has lost meaning
I feel like I`m dreaming
And want to start screaming
I think of life missing
And go into grieving
 There comes some accepting
Yet I can`t help crying
Part of me is changing
There is no denying
For sure I`m not lying
Believe me I`m trying
So hard to keep breathing
Carry on believing
Not to give up hoping
For a cure I`m praying
How I hate this feeling
It`s all so frustrating
I try to keep smiling
But it`s so depressing
Survive but not living
So tired of fighting
Feel no one is helping
I`m left slowly dying.    
Now it`s over half way into the first month of 2014 and I still haven`t really recovered. I`m not sure if I`m suffering from PEM post exertional malaise

or going into a relapse.

A relapse seems to be more severe and there`s a completely new baseline going back to the past. Sometimes a relapse can last for years. I hope that`s not the case for me.  

So I`m trying to rest and pace and hope that it doesn`t get worse or last long. 

The CCC ( Canadian Consensus Criteria) describes PEM as usually lasting 24 hours or longer. The word 'relapse' doesn't appear anywhere in the CCC clinical case definition.
The ICC (International Consensus Criteria)uses the term Post-Exertional Neuroimmune Exhaustion (or PENE) instead of PEM. It describes PENE as usually lasting 24 hours or longer, but defines PENE broadly so as to include relapses.

I`m sorry if this blog is somewhat depressing. I am slowly fighting my way back and have not given up hope completely. I`m more hopeful and optimistic when I read what Invest in ME are doing at the moment. This is why a percentage of all the sales of my book are going to IiME.

If you want to read more of my poems and help raise awareness and funds for Invest in ME then you can buy it here

In paperback from Amazon UK.
Kindle version on Amazon UK
In paperback and Kindle version on

Thank you for reading my blog. Now I need to go take a rest as I`m très fatigué
I hope to be back with you soon.
Love and best wishes from the French Femme xxx


  1. I'm sorry to hear how bad you've been feeling. I always find January and February to be the hardest months, it takes a long time to recover from Christmas and the weather gets so cold.
    Youve captured how it is so well with your poem. Thank you for sharing.

    1. Thank you Jennifer. I know these months are usually hard - even for those healthy - but this year seems to be particularly tough. It can only get better...

  2. You're not alone my friend , i know I and many other M.E sufferers seem to be having a really tough time at the moment, maybe its the fallout from Christmas, maybe its because we try to do too much on a daily basis, who knows, this illness still makes no sense to me. All we can do is be kind to ourselves, know its the illness making us feel so physically pants and therefore equally mentally pants, keep our humour even in the darkest momenst and wait for it to pass so that we can crawl to a better level of ill. Sending luv N hugs : XXX P.S chocolate can also help ;)

    1. Thank you. I know lots of my friends have been going through something similar. I think we all push ourselves too much at this time of year. And while I`m waiting for it to pass I`ll indulge in some chocolate!

  3. Hello,
    Well done for recognizing that you are in a set back period and you need to take extra care. My relapses take weeks and sometimes a few months in which I slowly and gently have to take super-care for myself. Using the classic 50% of my perceived daily energy for healing. I find I can safely improve. But I find it is hard to hear my body until it shouts during this come-back period, which of course puts me back.

    So I need really rely on my heart monitor and my step counter to help keep me from overdoing it. I'm very grateful to the experienced ME/CFS medical knowledge that gives me proven guidelines guidelines for both pulse and number of step limits I can calculate for myself.No doubt you use this too?

    1. Hello Suella. I have been waiting for the brain fog to clear before attempting this blog! As you know a relapse hits you on all fronts. I agree that it`s hard to really identify with a relapse until our body shouts at us -"Stop!". I will have to look at investing in a heart monitor. Thanks for the link and your comment.