Bonjour,
I'm sorry that my blogs have been not been frequent this year. Since my last blog I had a bit of a health crisis with a long time for recovery. It made me reflect on my life and my priorities. A book that I've recently read has also contributed to making me reflect on my life and what changes I can make.
So here I want to review this book and hope that it also helps you to reflect and maybe make some changes.
It's entitled 'FINDING A NEW NORMAL - living your best life with chronic illness' by Suzan L. Jackson.
The book is aimed to help you live your best life with chronic illness. Suzan has had ME/CFS, an immune disorder, since 2002 and also has Lyme disease. Both of her sons also became ill with ME/CFS. Her younger son is now fully recovered after 10 years of mild illness. Her elder son still has ME/CFS as well as three tick-borne infections. It's an amazing and positive story of how she has found a new normal for herself and her family.
On reading the introduction of this book I was immediately amazed that Suzan's life had changed in March 2002 at about the same time that my life also started to change.
She writes
'I suddenly felt horrible, with a severe sore throat, aching all over and complete exhaustion. I thought I'd caught the flu, but it never went away'
This is exactly what happened to me in the Spring of 2002.
She goes on to say
' For months my symptoms improved and worsened in a seemingly random pattern'
This was the same experience for me. I'd recover a little and go back to work and then become worse again and so needing to go back on sick leave.
Like me Suzan searched for a diagnosis or treatments. Like me she finally found a physician who diagnosed her accurately.
She writes
' I had an immune disorder known in the US by the cringe inducing misnomer Chronic Fatigue Syndrome (CFS). Fortunately since then there has been much resistance to the name CFS and a return to M.E. or even ME/CFS'
In her book Suzan shares her experiences personally as well as that of her family. She shares some valuable advice and help in finding a new normal. She has had to find her own path in living a new life in which she can still be full and happy. With no cure or very little care and treatment we all have to try and do the same as her. This is why I found her book to be a very useful tool in trying to achieve just that.
Her book deals with emotional coping, daily life, relationships and improving your life. It's full of interesting and helpful tips. Some of these I have already adopted or tried for myself.
Her book has made me reflect further on my own personal life. She discusses acceptance and hope and how keeping a balance between them is an ongoing goal. I believe that's the case for me and these two words often crop up in my poems and my blogs.
Acceptance
To say “this illness I accept”
Is such a very hard concept
To accept my life has to change
To accept it can’t stay the same
To accept how I must now live
To try not to be negative
To accept my limitations
To lower my expectations
To accept I need to take care
To accept energy is rare
To accept I need to have rest
To pace myself and do what’s best
To accept new ways of coping
To find better understanding
To not be demanding on me
To reject those feelings guilty
To accept help on a bad day
To be honest in what I say
To accept I’ll have some bad days
And to feel denial and rage
To stop fighting against my fate
To stop my anger and my hate
To again find myself grieving
To mourn that life I’m now missing
To accept does not mean defeat
To know this illness I will beat
To accept is not giving in
But hope one day this fight I’ll win
To accept part goes to M.E.
To know it can’t take the real me!
I wish I could say “I accept”
But it is such a hard concept
Happy
I used to be happy
Look forward to each day
Then M.E. came along
And took it all away!
My happiness was gone
Replaced by a grieving
Anger and frustration
And numb kind of feeling.
I thought life had ended
And chance for happiness
With all my days now filled
By this chronic illness
Yet slowly there has been
Acceptance within me
Adjustment of my life
New ways to be happy.
Of course positive thinking is not always easy and unhelpfully can be claimed as a road to recovery! No amount of positive thinking is going to cure me!!!
Suzan asks in her book if she should give up all hope of recovery. It's hard to keep on hoping, especially it seems as time goes by and nothing seems much to change. I've also written about 'Hope' and expressed feelings of hope in my poem
Hope
To have a better day
The pain to go away
Hope
This fatigue will soon end
And my body can mend
Hope
To find energy
Then start recovery
Hope
To improve my pacing
Against all I’m facing
Hope
I find new ways to cope
Which come within my scope
Hope
To increase more awareness
So disbelief is less
Hope
That I can work again
And all’s not lost in vain
Hope
To better understand
This dreadful M.E. land
Hope
For a future healthy
And at last M.E. free!
Personally I try to hold on to hope and I'm generally a positive person. However, as I get older and the years go by I wonder if in my lifetime a cure will be finally found. In the meantime we all have to learn how to live with this illness, including me. That's why I feel that this book by Suzan is a very useful tool in doing just that and I fully recommend it.
Unlike Suzan, I live alone and that also provides certain challenges. It can be a lonely path and recently Freddie sings 'Face it alone' which resonates with me.
We are all forced to accept and carry on living despite having a chronic illness. We still have a life so we should try to find a new normal. I know that's not easy but we owe it to ourselves - don't we?
A bientot
The French Femme
xxx
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