AWARENESS RAISING ALL YEAR

Bonjour, 

I want to talk about a few things in my blog today. 

Firstly, Myalgic Encephalomyelitis is an illness that changes all the time - every year, every month, every week, every day and every minute of that day. 

It's unpredictability and variability means it's hard to cope with and difficult for others to understand and accept. 

I never know how I'll feel when I wake up each day. I don't know what symptoms may come along each day. It can all change very quickly. 

This makes it impossible to plan anything with surety and reliability.  

Some days I may feel relatively better, either physically or cognitively, and may be able to do a little more. However I have to pace and manage any activity so as not to bring on post-exertional malaise or a relapse.    

I also have the problem that assumptions are made by others. They think that just because I can do this today I must be ok. They may think that I'm not really ill, especially as I may look well. They may think that I can repeat the same activity. They may think that I'm recovered. 

Just because

I can do this

Today

Doesn`t mean

M.E. has gone

Away

Just because

I look well and

OK

Doesn`t mean

I really feel

That way

Just because

There is nothing 

You see

Doesn`t mean

That I`m fine and

Healthy

Just because

You don`t accept

M.E.

Doesn`t mean

There`s nothing wrong

With me

Just because

You don`t believe

M.E.

Doesn`t mean

You can treat me

Badly

Just because

You don`t understand

M.E.

Doesn`t mean

That you can treat me

Disrespectfully

Just because

You don`t understand

My illness

Doesn`t mean

That you can cause me
Hurt and distress

Also within the parameters of the illness there are different levels of severity and ability.  

There have been attempts to establish scales of disability as a guide BUT I don't think that we can fit into a little box and stay in that box. 

I think it's quite common to move up and down these levels at any time - even within a day. 

Secondly, today is the first anniversary of the death of Merryn Crofts. She is only the second person in the UK, and the youngest, to have M.E. as recorded official cause of death.  

So it's a terribly sad day for all her family and for the M.E. community. 

"Can people die from M.E.?" is a a frequent question. The answer is "yes in some cases". 

That's why it's important to raise awareness of just how life threatening this illness can be.     

  

Thirdly,  May and especially the 12th May is an international day of awareness. I and many others have made a huge effort to raise awareness and understanding this month at some cost to our level of health. I don't think I've ever seen such a huge wave of awareness raising and it makes me feel encouraged and hope that the tide is turning. 

BUT we have to maintain that wave and keep raising awareness and understanding. I don't want to read of more needless and tragic deaths because of this illness. 

SO join me whenever you are able to continue the fight.    

     

A bientot
The French Femme
xxx

MY STORY FOR M.E. AWARENESS WEEK

Bonjour, 

We all have a story to tell about how we became ill. This is mine.   

It began in 2002 when I started to notice that things weren't quite the same. It felt like I had flu. I had planned to go and visit a new and exciting man that I had met recently on a Poldark Appreciation Holiday. I think that holiday was the last time I can recall feeling well. 

  

Anyway I'd had a couple of weeks off work and still felt unwell but didn't want to cancel my next trip to Cornwall. After all I thought that I had met the love of my life! So I pushed myself to go but struggled all the time. I can recall so clearly a walk where we had to go up a steep hill. Now up till then I had been a keen walker and hiker. Normally it would have been easy. But this time it seemed impossible and it might as well have been Mount Everest. I also recall feeling really cold at that time even though it was the middle of summer. I had no idea what was happening to me. 

After this visit to Cornwall I went back to work and yet I still didn't feel really well. I pushed myself to keep going. I had a house and mortgage to maintain and was a single mother. What else was I to do? 

The pattern repeated going to work and then once again sick leave. At that time I was a full time union representative for Unison and other unions. I loved my work and often went to extra weekend courses or conferences. In that summer of 2002 I went to a conference in Bournemouth. 

I went to see my doctor a few times as I couldn't understand why I always felt so tired and had no energy. She was of no help and said that some of the flu type viruses in the summer could be worse than those in the winter. She even suggested that as soon as possible in the autumn I have the flu jab. I had confidence in my doctor so I did just that. 

Of course you might be wondering what happened to Cornish man! Well although I saw him again a couple of times it didn't work out. I was so disappointed and upset. 

That autumn I continued to push myself at work. I still felt below par and would often take sick leave. After the disappointment in love I also had a crazy phase of going on lots of blind dates in the search of a another man in my life. What was I thinking? 

There were problems at work which only added to my stress and pressure. Somehow I managed to keep going until the end of the year and christmas. 

That was when I finally collapsed. I had never felt so ill in all my life. It was indescribable. I could hardly get out of bed, I wanted to sleep all the time, my whole body ached, I felt so dizzy, my glands were swollen and my throat was so painful. It felt like I was dying.   

At the beginning of 2003 I went to see my doctor again and this time took my mother as support. The doctor seemed at a total loss and said "What do you expect me to do?". I was disgusted. She was the doctor after all. I walked out in tears and frustration. There had to be some reason for how I was feeling. I wasn't making this up. 

So I changed my doctor and he seemed more open and understanding and sent me to the hospital for lots of tests. 

In the meantime my friends and I had for a long time planned a weekend break in The Cotswolds. I didn't want to miss it and let down my friends. So once again I pushed myself when I should have stayed at home and rested. This photo of me was taken at the time. I can see the illness in my face even though I'm trying to smile. This was the last time I wore my hiking boots.    

After my complete collapse I never went back to work. It seemed as if my life was falling apart. I had no idea why I had become so ill. I had no idea what this illness was and had no way of finding out. 

I went to the hospital and did all the blood tests. Of course nothing showed up. Eventually I saw a doctor at the hospital who said that, considering all my symptoms and my history up to that date, I had chronic fatigue syndrome. I felt so relieved that at last I had a diagnosis. However I was told that nothing could be done to help me but they suggested graded exercise and some cognitive therapy. Once again I had confidence in the medical profession and tried some graded exercise. That nearly killed me! Needless to say I stopped that at once. 

Since my diagnosis I've had little real help and support from the medical profession and have learnt myself about this illness myself and how to live with it. 

All the things that I previously enjoyed became too difficult or impossible. 

My hiking boots stay in a box at the back of my cupboard. I don't know if I'll ever be well enough to wear them and go hiking again. They represent my old life and the old me. 

I miss me and that life that used to be mine.   

In it's place I've had to find a new life. I've had to reinvent myself. Perhaps I would never have written poems and published books if I had carried on as before. Perhaps I would never have written a blog. 

Yet I can't but help miss my old life and all the things I loved. This poem doesn't include everything that I miss. That would be a very long poem! 

On the final note about love - I did meet a french man who really was the love of my life. Life of sorts can go on despite illness. 

Anyway that's another story............... 

A bientot
The French Femme
xxx