The enormity of what I have to deal with because I have cerebral palsy, just to be able to function in my day comes home to roost every now and again.
I am dealing with post-impairment syndrome that affects adults with cerebral palsy. According to the National Institute of Neurological Disorders and Stroke, in addition to their cerebral palsy symptoms, people will also deal with further symptoms including cerebral palsy fatigue, weakness, pain and arthritis.
The Institute’s report also states that on a daily basis people with cerebral palsy will use three to five times more energy than an able-bodied person, just to complete their daily tasks.
Because I have a reasonably good diet and have managed to exercise for most of my adult life, I am lucky I don’t have arthritis or pain, but I do struggle with weakness and fatigue, both of which are my biggest challenge. It’s this part of my life that I find so frustrating, because emotionally it’s difficult to let go.
It’s also not easy trying to adapt when you’re around others who don’t deal with fatigue or weakness. Anything we deal with around cerebral palsy, will not only impact on us because we’re dealing with it, but will also impact on family too as they try to conform and that’s not always easy.
I also have many concerns on how things will turn out as I age further, with knowing what I have to deal with now and it’s not sitting pretty.