When a smile is not possible.

People with Severe ME might describe their existence as tormenting and tortured, but what do you do
when that deteriorates by a quantum leap and every second your body is physically breaking down and you feel you are dying but no one knows for sure?

How can you convey the difference in experience, the difference in sensitivity required and the difference in understanding as you shout when your beloved scratches his head and you cannot bear it? Or you cry out at a gentle touch or a kind word even, as the sound hurts you. How cruel is that?

 Where is your loving heart and your sweet smile, your kind  words of gratitude and your own self responsibility and awareness? Nowhere visible, that is for sure.

 When your face is palsied and the muscles will not work, a smile is not even possible, so you end up with a very severe face instead. When your lips will not move, you cannot speak clearly either and when you cannot open your eyes, for paralysis has gripped them tight closed, you simply cannot see the look of kindness or concern on another's face.

Popular posts from this blog

The misrepresentation of Myalgic Encephalomyelitis in nursing.

Why ME must be removed from the JCPMH Report : Guidance for Commissioners of Services for People with Medically Unexplained Symptoms

Why the separation of ME from CFS is long overdue