Some days, it’s like I’ve just gone down under a really big wave, but I didn’t go down deep enough…. instead of the smooth quiet break above me, I am tossed around; gasping for air! only to be spit out by aftermath of the wave that just was. Of the day that just was.
My legs are too heavy to carry me, and the rest of this body feels worn down. Incapable of working through the pain in my feet, the soreness in my knees, the tightness that ails me–the only remedy is sleep. I am no expert on sleep, but it feels like the cure-all to the very reeling, physical side of CP. Sleep helps restore muscles, gives the conscious brain a rest all while the legs are elevated and blood flow is regular from head to toe. Perhaps my CP is the reason I’ve seemed to need more sleep than the average human–I could easily sleep 9-10 hours every single night if my lifestyle allowed! I truly believe that getting at least 8 hours a night is necessary for those who experience pain, fatigue or discomfort because of CP. I feel pretty lucky to have my foot pain lessened by my ExoSym to a large degree with the gift of a more even gait pattern but the rest of me is not as bionic, haha. Sleep positions are important as well, I will often put a pillow under my knees to support my back (somehow I always end up on my stomach though!)
If you are unable for whatever reason to get sufficient sleep, the next best thing would probably to get a on a routine sleep schedule. (set a bed time & wake up time and stick to that on your work days). That way, your sleep won’t feel as disruptive to your waking hours and your body may not be as sensitive on the tough, busy days.
Magnesium is said to also support muscle & bone growth and helps me wind down at night before bed. I haven’t taken it regularly enough to notice a large positive effect, but I think it’s a good supplement to try if you have trouble sleeping when your body is too wound up. You can find it in most health food stores.
The last observation I will make is that sleep, exercise & energy go hand-in-hand. Energy is a big one with CP. I never seem to have enough of it! It seems counterintuitive but the more you exercise, the more energy you will have. The better quality sleep you have, the more energy efficient your body is. We experience fatigue so much with cerebral palsy because we deplete our energy much more quickly. So we need to find our own ways of being more sustainable so that we can experience less fatigue & as a result, lessen pain while living our busy lives. Even if you feel you can’t go for that walk because you are hurting that day, or you are simply not as mobile, I know there is something else you can do…swimming, yoga, biking, horseback riding… all of it is good. Choose anything that takes the pressure off your legs but still gets your heart pumping & muscles activating!
The hard truth is, pain–chronic pain I should say is a part of living with a physical disability and it might rear its ugly head when we least expect it. But the more proactive we can all learn to be, the better off we will be as our bodies age. I am hoping you know these are just a few ways that work for me…self-care is a whole topic and I feel like this just scratches the physical surface. What I am trying to get at is this:
Just because we can’t control how CP affects us doesn’t mean we are helpless.
I am not asking that you “accept it and move on” but really, just take the small wins & know it is better than remaining stagnant. So maybe this next week, work on the little things that can create BIG change: set a bedtime, take warm baths with epsom salt, ice your tired muscles, elevate your feet, STRETCH, and sit down when you need…find a way that makes it easier for you to be kind to the one vessel you have on earth. 🙂
-Katy