Dr Kelly Fleming

I wish I could have mornings like most people but this doesn’t happen when you are disabled.

My morning requires my PSW to show up on time and do food prep before she wakes me up. The food prep is pretty easy. Waking me up is everyone’s nightmare.

No one ever knows what the day will be like when I wake up.

My SJIA might have caused dislocated joints throughout the night that require being popped back into place.

My legs will be stiff as a board and most of the time not straight in line with my body.

So my day starts with pain. I’m always in pain but having to have someone unlock my stiffened joints before I can transfer out of bed is definitely not fun.

After the usual morning necessities, my PSW does range of motion from head to toe. Another unpleasant, painful experience. They get a good workout (no need for a gym membership when they are working for me!) trying to get me into a condition that I can function independently throughout the day until the next PSW comes in the evening.

Unlocking my joints is not the only issue.

They do not know if I’ve had seizures overnight and I may wake up still having seizures or passing out.

It’s a difficult job for all my PSWs. Yet I’m grateful that they come everyday to make my life more independent.

If I could do anything to change it, I would like things to be easier for everyone who helps me everyday.