The Hardest Thing

The hardest part for me in having cerebral palsy with a seizure disorder is that there are times when I must say no! No, to my kids!

No, to taking them swimming without my husband's help because of the sun that is shining down hard on the public outdoor pool which could cause me to have a heat stroke because of the medication I must take in order not to have a seizure. My older son does understand but my younger two girls have a hard time because they will think that OK so we will only stay an hour. The fact is that never happens we are usually there for about two to three hours because time gets away and or just slips by easily.

I also must say no to them and take a nap instead when I am feeling tired or lethargic. I am afraid of over exerting myself and know that even though my last seizure was in April of 1998 it was all due to the fact that I was at a seminar, for a class that was time consuming, as well as required a paper out of me on the evening after part one of the seminar. I learned then, I must listen to my body and never disobey what it says for too long or else I am at risk of a seizure or even a fall which thus may lead to a medical clinic or emergency room visit that I would rather avoid.

The message here is I hate to say 'No!' but I must first listen to my own body and give it priority over anything else! I believe that there are times that even my husband does not understand although I know he loves me very much he believes if he can do something like work 8-10 hours a day as a professor I could do the same. I tried the working 30-40 hours a week and found that impossible because eventually my brain shuts down and causes either me to have a seizure or a blackout.

It is simple to me but hard for others to understand but imagine making about 75% of your brain doing the work of what 100% of your brain does on a daily basis. Remember the fact that I said earlier in my first post that parts of my left hemisphere of my brain has lack of use due to asphyxiation (lack of oxygen) probably before birth; the result is that I have lack of some fine motor skills on my right side of the body and the over stimulation of that part of the body causing seizures (if I did not take my anti-seizure medication I would not have been seizure free for a little over 15 years now).