Because of my cerebral palsy, my muscles get really tight, especially in my legs. It is one of those parts of having cerebral palsy that people do not always see. They see me sitting in my wheelchair, but they do not necessarily see what my muscles are doing or how much pain I can be in.
About every 3 months, I get Botox injections in my legs to help with the tightness. And yes, Botox. Unfortunately, mine is not making me look 10 years younger. Mine goes into my legs so my muscles will calm down!!!
The Botox helps me a lot. Without it, my muscles can get so tight that I am in a ridiculous amount of pain. When it is working, I do not really think about it that much. I can go on with my life. But when it starts wearing off, trust me, my body lets me know.
I try to schedule my Botox appointments in advance because I know approximately when I am going to need them again. The problem is that there always seems to be this horrible 2 week period before my next appointment when the Botox has worn off and my legs are basically screaming, “WE ARE DONE!!!”
Those 2 weeks can be miserable.
The pain can get so bad that I cannot sleep. I will be lying in bed exhausted and wanting to go to sleep, but my legs are so tight and uncomfortable that my body will not relax. There is something incredibly frustrating about being completely exhausted but unable to sleep because your own muscles will not cooperate.
Then daytime comes and I am basically living on caffeine. I did not sleep because my legs hurt, but somehow I am still supposed to function like a human being the next day. So caffeine becomes my best friend. I am tired, I hurt, and I am trying to keep myself awake enough to get through the day. Then nighttime comes, I desperately want sleep, and my legs decide we are doing the whole thing again.
It is a really annoying cycle. Pain keeps me awake, being awake makes me exhausted, caffeine gets me through the day, and then I just hope maybe that night my legs will finally give me a break.
This is one of those things about living with cerebral palsy that is hard to explain unless you actually live with muscle tightness and chronic pain. It is not just, “Oh, my legs are a little stiff today.” Sometimes it HURTS. Sometimes it affects my entire night and then follows me straight into the next day.
I know the Botox helps because I definitely notice when it stops helping.
Every 3 months, I basically have a countdown going in my head. Botox appointment coming up. Great. Now can somebody please explain to my legs that they need to behave themselves for the last 2 weeks???
Apparently, they did not get that memo.
Megan Fry 
I wonder, instead of having the botox shots every 12 weeks, you could have them every 10 weeks? Or is it not medically safe to have them closer together like that? I’m glad you found something that works though.