“Hidden illness” – MS as an example « Heroes Not Zombies
That post links to a great article by a PwMS:
BBC NEWS | Health | Living with a hidden illness
This amazing piece of writing rings so many bells, for example (despite the reference to her daughter - I do not have children):
It's difficult to communicate how the mind of a highly intelligent person can completely stop functioning and pretty much become a vacant space.
Recently, I was trying to pack a bag for my daughter to take on a weekend away and my mind literally blanked, not on what to pack, but on what people wear.
I kept staring into her wardrobe for clues, then returning back to her empty bag to stare at that, waiting for it to come back to me.
Trying to remember things can be 'like retrieving computer files'
My problem is not that I don't have strategies to cope with times like this - of course I do - it is that when I am cognitively impaired the strategy and planning part of my brain is nonexistent.
I know it sounds insane. The only way to describe it is that it is as if my mental space has emptied.
It is like looking at a vacant lot where there used to be houses, or not being able to retrieve files from a computer though you know they are there. At these times, I can't even read from a list.
The problem is, MS symptoms come down suddenly and I never know when those days will be.
To other people, after my diagnosis, my life remained intact.
For me, it became fragmented and I struggled to feel complete when some of the most important parts of me were now missing.