I have been told quite a lot lately by people who have read my blogs that I am brave.
I do not consider myself brave, just merely honest and wishing to raise awareness into a disease that is invisible to many.
I do not hide behind the disease, I am not ashamed of it and more than likely people are fed up with seeing my many posts about my life with ME but that is all I have to offer, ME is my life. While you post about what you have done today, how you have been out with friends etc, I have literally been within four walls and I really don’t have much to talk about.
Of course, I understand people who do feel ashamed or afraid of being honest about what has happened to them because of the stigma attached to it. Don’t get me wrong, I feel it anytime I do go out – what will people be thinking, will they believe all that I post or message about to friends when I say it is really bad. I guess it is only human nature that some people judge on face value and when you are all made up and dressed well that is all some see. They do not take the time to look into your eyes or realise what you have had to go through to get to this point, or how you will suffer for days/weeks after. Some people, although these are rare, do take the time to understand, do take the time to help you raise awareness and advocate on your behalf and for those people we will always be grateful for.
These are photos of occasions when people see me – I look well, I look happy – so what is all the fuss about? :-
But then these are the pictures of what you don’t see – the before and after, the times I am in absolute agony and cannot leave my bed. My energy is zapped and all I can do is rest.
The smile is gone, the pale face replaces the bright happy ones and my eyes become heavy and often droopy on one side. This is the face very few see.
There are literally millions of us around the world including 250,000 people reported to be suffering as I do every day and WE NEED TO BE HEARD.
Will you help us fight? We need funding for the research to find a cure for this devastating illness. Will you share this on social media?
People often say to me “I wish I could do more to help”…YOU CAN! You can shout on my behalf, you can help spread the awareness to get more people in power sitting up and listening. You can educate yourself about the disease and above all you can LISTEN…really listen to me. If you don’t know enough ask…I am more than happy to tell you. Dont always go by what you read on the internet as it is not always correct but I would point you towards websites such as the ME Association, Action for ME or ME Action UK. For Children, always look at The Tymes Trust Website. It is heart breaking the many stories on there written by children with the illness and also evidence of the lack of understanding and education by those within the educational system.
We are often too ill to fight so we need you to do it for us!
Please help us because we are the MILLIONS MISSING
Faith, Trust and Pixie Dust xx