One of the most challenging parts of living with Cerebral Palsy is chronic pain. Spasticity is a symptom that frequently leaves me exhausted. My muscles are always stiff and tight. Chronic pain has also affected my mental health and well-being.
Pain often makes it difficult to function every day. I don’t want to shower or do much of anything when the pain is overwhelming. Sleeping is nearly impossible some nights when I am out of Gabapentin which helps relieve the symptoms of restless legs. If I don’t sleep well, I can’t think very well the next day.
Just recently, I ran out of my prescription and didn’t sleep well. This left me tired and frustrated. I haven’t been in a very good mood without my medication. Not getting restful sleep would affect anybody’s mental state. Not getting enough sleep also exacerbates the symptoms of my depression. It leaves me sad and frustrated. I know I need to sleep, but I can’t get more than a half-hour of sleep at a time without Gabapentin.
I don’t make many social plans if I don’t get enough sleep. I can’t stay out with my friends until midnight as many 22-years-olds can. I don’t like going out to bars late on the weekend. You will rarely see me at the movies after 8:00. Luckily, my friends are understanding when it comes to my Cerebral Palsy. They don’t force me to go out if I’m too tired. I’m happy to relax at my apartment on the weekends.
There is nothing in my life that chronic pain doesn’t affect. I live with the memories of previous pain episodes. Such as the time at Children’s Hospital Boston, where the pain was so intense that it brought me to tears. These appear uninvited in the form of involuntary gasps when I move in a way that used to hurt. I also live in fear of past pain ghosts. They’ll come up behind me and give me a true “10” on the dreaded pain scale. Pain is like an unwelcome guest who won’t leave. Coping with it is difficult, but I make it through every day.