REFLECTIONS

 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. 

I've written a poem about acceptance and a blog about turning the negative into the positive . This is much the same as Suzan expresses in her book. 

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  

I further explored this area in another blog 'Can you feel happy with a chronic illness?' 

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!

In another blog I write 'Holding on to hope and fighting to survive' and more recently I wrote again about 'Hope' 

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