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