Saturday, 22 March 2014


It`s hard to live with a long term chronic illness. We are forced to adapt and change. Life can no longer stay the same. We go into grieving for the life we have lost and it`s hard to find a way forward and a new life.  We look back at the life we once had and the person we used to be. We might be tempted to say "If only.." or "What if?" but that doesn`t help.

Personally I try to take one day at a time, not to look back and not too far in the future. Otherwise that`s just a recipe for depression. Still sometimes I am reminded of my life before illness. This short poem of mine is a summary of a look back and looking forward...

I Look Back

I look back
And what do I see?
Someone else
That I used to be,
A person
Happy and carefree,
A life that
Was full and busy,
A purpose
With some dreams for me,
A stranger
Was that really me?
Look forward
And what do I see?
I`m not sure
What I can now be,
All is lost
A life that`s empty,
Life ended
No future for me,
A new life
I must make for me,
A life sick
A life with M.E.
But what if you could go back to the past. What would you do differently? What advice would you give to your earlier self? 
In Star Trek The Original Series there`s an episode about time travel The City on the edge of forever where `The Guardian of Forever` is a door way to any time and place.
This `Guardian of Forever` is used again in Star Trek The Next Generation in a story called Imzadi where Admiral Riker uses this door way to save Deanna who is the love of his life and his Imzadi.
Now imagine if you could use such a door way and go back in time. What would you do or say to advise your earlier self? 
If I could use the time portal as in Star Trek I would go back in time and tell myself about M.E.
These are the things I would say
·         Take it seriously from day one
·         Don`t push yourself
·         Don`t do graded exercise
·         Change your doctor earlier to one more sympathetic and understanding
·         Don`t resign from your job
·         Try to get ill health retirement
·         Don`t force yourself to work at any cost
·         Don`t take on a new job when you know deep down that you`re not well
·         Be honest with yourself about your abilities and your health
·         Find out as much as possible about your illness
·         Accept that it is a long term chronic illness
·         Accept it sooner and not fight against it
·         Know that you will have some bad and good periods
·         Avoid stress as much as possible as it will only make you worse
·         Don`t assume that you will get better
·         Plan you life according to the restrictions of the illness
·         Rest and relax more
·         Don`t waste time trying to convince family & friends that you are truly ill
·         Learn how to best pace and manage your illness
·         Say “no” more often
·         Don`t be bullied into doing things that are too much for you
·         Don`t worry about the jobs you can`t do
·         Take better care of yourself and put yourself first
·         Push for more help and support from the medical profession
·         And above all know that life will go on albeit not the same
I wonder if I had all that help and advice things would have been different?
So if you had the chance to use such a time portal what would you say to your earlier self?
Well time travel hasn`t been discovered yet! I can look back at my past but I can`t  go back and change it.
BUT what I can do is to help others who are newly diagnosed with M.E. I can give some help and advice which I didn`t have. I can help others not to make the same mistakes.
Here`s a good starting point for the newly diagnosed. Although it`s a relief to have a diagnosis it can be overwhelming.
Now I wonder what I would find if I used the time portal to make a trip into the future. Perhaps it`s best not to know!
A Bientot
From the French Femme xxx

Tuesday, 11 March 2014

What is your pain level today?

I`ve recently spent a week in a pain clinic which is part of the Neurology department in a French hospital. Most people with M.E. or Fibromyalgia suffer with chronic and long term pain. I`m no exception. However until my stay in hospital I`d never had any help, advice or support on dealing with that pain.

To be honest, pain has not always been a major symptom, apart from when in major relapse. However it has recently become more of a problem for me. Just before and during my stay in hospital I`d developed chronic pain in my neck, shoulders, back and spreading into my arms. It became unbearable. I don`t mind saying that it made me cry. 

So what had I done to bring on such pain? Well I`d pushed myself to try and carry out activities of pleasure - like a `normal` person. That was a big mistake! The result was chronic pain.

How do people cope with chronic pain on a daily basis? How do you assess and rate your pain? In hospital I had to fill in lots of forms and evaluate my level of pain every day like this...

There are lots of words to describe pain. I used some of them in my poem here..
Pain that
Is strong
And so
Hard to
So much pain
Awful pain
Chronic pain
Severe pain
Widespread pain
Terrible pain
Horrendous pain
Persistent pain
Unexplained pain
Disabling pain
Terrifying pain
Radiating pain
Unrelenting pain
Unbearable pain
Agonising pain
Excruciating Pain!
How do you describe your pain? 
What helps you with your pain?
In the pain clinic I was given some tips for dealing with chronic pain. However, like many with M.E. I am sensitive and intolerant to many medications so I am left with paracetamol or ibuprofen.  
They gave me a heated linseed compress which helped with my pain. So I have now purchased one for use at home.  
I was also introduced to a Tens machine which I am going to try using on a regular basis to see if it makes a difference. What have I got to lose? 
Otherwise I will have to be more aware of any activity that will increase my pain levels. I will have to plan before and afterwards so as to avoid the crisis of pain. I have to learn to live better within my limits and not push those limits. 
My stay in hospital has helped me to review my options and think about pain along with all my other symptoms. So it was on the whole a week well spent. 
Do you have any other tips or advice? I would love to hear from you.
A bientot!
From the French Femme xxx