Fifty years with MS

The Invisible and Consistently Inconsistent Aspects of Multiple Sclerosis

You can't tell when you look at me that

* I'm not drinking because I have difficulty swallowing

You can't tell when you look at me that

* I can see two or none of you

You can't tell when you look at me that

* I can't feel my fingers or toes or arms or legs

You can't tell when you look at me that

* I'm so tired it takes non existent energy to move my eyelids

You can't tell when you look at me that

* Every day for fifty years I have figured out different ways of coping

You can't tell when you look at me that

* I don't know when or if these aspects will appear so I start each day in fight or fight mode which itself is exhausting

You can't tell when you look at me that

* I'm worn out trying to tell you these things when you're too busy to listen, don't understand or you know of other people who are "much worse off" or in pain that I haven't got.

* Temporary slide into self-pity Everything and everybody is much worse. What am I fussing about?

You can't tell when you look at me that (although it is obviously my non-dominant side)

* I'm using my left hand because of weakness or a non-functioning right hand

Unfortunately all you see or hear is a grumpy old woman who doesn't appreciate anyone or anything.

Perhaps if you read this you will understand why Susie Sunshine is no more.

MULTIPLE SCLEROSIS DIDN'T KILL HER BUT HALF A CENTURY OF HAVING TO PROVE SHE HAD A PROBLEM TO PEOPLE WHO WEREN'T LISTENING CERTAINLY DID.

Bitterness has been absent from my world until recently. It is creeping in because of the neglect within Home Care. Home Care is a huge misnomer. "Care" needs to be removed and replaced with "Services".

They care more about hours, paycheques and whether a co-worker is getting more than they are.