An interesting post indeed!
In my own case, the uncertainties kept changing. 23 years ago, I went from being a very busy woman, running a home, working full time, bringing kids and grandkids up, the usual stuff of a regular life.
I had been a yo-yo dieter and thought weight gain was causing my fatigue and falls…but no…this sneaky uninvited guest was gate crashing my life.
PPMS was suspected but not detected on a myriad of tests…I learned all about the condition and joined this group. I accepted life with a disability as the new me. I needed a wheelchair part time for a while then moved on to full time.
Suddenly, after about 7 years, a new neuro told me I had HSP…hereditary spastic paraplegia…a condition similar to MS in it`s symptoms, but devastatingly carried a 50% chance of being passed to my daughters and grandchildren.
Only 1 in 100k people get it…what terrifying news to be given and yet somehow, I was in such a rare group. I felt dirty, disgusting and hated myself.
I apologised to everyone in the family and keenly watched them walk…looking for tell tale signs. Uncertainty for sure!
A year or so later, I took genetic testing and yeh, you guessed it…negative. I didnt have it all! That basxxxx neuro was my all time enemy! More uncertainity!
For some following years I had no clue what was wrong with me. My regular neuro discharged me saying What
s happened has happened and theres nothing we can do for you
. Cheers!!!
So life was then a definite uncertainty. I spent 2 years wearing a big fat ? on my forehead. Where would this take me? I already needed so much help with all personal care, needed my meals cooked for me, needed a driver to take me out, etc.
Last year, my daughter changed jobs and became PA to a neuro in a Centre of Excellence Neurology hospital. She told her boss about me and he wanted to see me. I got referred and hey presto! Spinal PPMS was definitely diagnosed!
Uncertainties about what was doing all the bad things to me was known! And boy! did it make a massive difference to my thinking! I wasnt going to get any cure or treatment…but that didnt matter…I didnt expect it.
So what uncertaincies haunt me now? The very worst one is who will pop their clogs first…me or hubby? I truly hope it is me first…cos things would certainly go pear shaped if it`s not me!
My hubby is my rock, my main carer, my sanity, 50 years together means such a lot.
The general population say things likeYou never know what
s round the corner`, but for folk like us, it is different…we are already round that corner, arent we?
Have the best day you can folks!
Boudsx