Managing the Day to Day
Once you realize that this illness is not going away in the usual 1-2 weeks, you need to start actively managing your own health. Some people may act like this will fix your problems. It probably won't, but you’ll be giving your body the basics it needs to get healthy. Here’s what I recommend:
Try to go to sleep at the same time every day and get the necessary number of hours of sleep (most doctors say 6-8 hours is required for healthy functioning, but 8-10 hours is ideal).
Try to wake up at about the same time every day.
Eat as healthfully as you can. This doesn’t just mean eating more veggies (although that’s important), it can also mean switching up the organization of your meals. For example, I had trouble eating larger meals so I opted to eat smaller meals more frequently. Make sure you research and tell your parents about any big changes to your diet as they will be able to help you.
Like in the research section — notice what makes you feel better and worse.
Make sure you are drinking enough water.
Consider taking a daily vitamin or supplement (get your doctor’s recommendation, your pediatrician will be able to help you with this if you don’t have a specialist).
Get out in the sunshine at least 10 minutes a day. Just soak it up.
Make sure you are walking for 10 minutes or so every day. If that feels good and you don’t crash afterward, you can increase slowly.
Learn about Pacing — this is the intentional practice of knowing how much energy you have and using it wisely — so you don’t over do it and end up in bed for a few days after one fun evening or big exertion. Pacing applies to mental activity as well as physical activity. Here’s a great source of information about pacing.
All this is to help you manage the day-to-day of living with chronic health conditions. If you find you are feeling worse, you may have “crashed” from lack of the basics listed here. If so, the best resource for that is the ME/CFS Crash Survival Guide from the Bateman Horne Center in Utah.
