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.
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.http://www.amazon.co.uk/.../dp/1492735116/ref=sr_1_6...
Kindle version on Amazon UKhttp://www.amazon.co.uk/.../dp/B00EYXX1NW/ref=sr_1_1...
In paperback and Kindle version on Amazon.comhttp://www.amazon.com/My-M-E-Myalgic-Encephalomyelitis-ebook/dp/B00EYXX1NW/ref=sr_1_1?s=books&ie=UTF8&qid=1383303632&sr=1-1&keywords=My+A-Z+of+M.E.+by+Ros+Lemarchand
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