MS is completely misunderstood by many

I failed to grasp how it could really grip you in its less obvious stages until I came under its curses. I’d always had bad balance, dodgy feet, peculiar sensations etc, but had an awful lot of other health concerns going on such as having to undergo a colectomy with ileostomy. The nerve issues took back stage.

However that all caught up with me furiously in the past three months or so, and I’m dodgy on my feet. I get around apartment on a bit of a doddery way, have to use a stick always outdoors, for a bit more than going through shops need to use rollator. That’s all the visible bit.

For years I’ve had the enormous fluctuating fatigue, fluctuating cognitive issues, disturbed Bala e that has caused a lot of embarrassment and feelings of “not making enough effort to try and balance”. It’s been a fraught life full of trying to cover over deficits and pretending I didn’t have them. Eg socially in a group I heard one person saying “she has a phobia of escalators”.

Upon enquiry, having heard a friend tell me their sibling had MS, I enquired “how did it affect them, was it visible?” The most stupid question I could have asked as the answer went “you couldn’t tell there was anything wrong”. I was a bit thick at the time, to be honest. Now I now how profoundly it affects the brain and body, the matter being controlled by very inflamed brain neurons.

I would like to know how people, who don’t have MS, imagine it to be like to live with it? Could anybody describe in their mind’s eye how the various nerve issues might affect them?

People with MS already know the changing peculiarities and uncertainties, I’d be more interested to hear contributions people, whatever they are, of what they imagine it to be, I’m especially interested in folk who have only got notions of it, without having heard directly about it from friends or family. My idea is to get a snapshot of how the public in general perceive the condition.

Fire ahead 😁