We all know multiple sclerosis (MS) changes from day to day, but did you know it changes from hour to hour? Most people with MS have good and bad times of day for doing things. It really helps us to schedule our days. Then, we can take advantage of the good times and stay out of trouble in the down times.
Most people with MS feel better in the mornings than we do in midday. When I asked the WebMD MS Facebook community about their daily schedules, most people said early mornings are best. “I feel great for a few hours. Then I crash” or “After lunch, I’m done for the afternoon” were typical answers.
Your body might be different. A few community members said they had never been morning people, and MS hadn’t changed their pattern. Some said they did better in the evening, but not too many felt best in the afternoon.
Personally, I’m good in the mornings or at night, but after dinner, I collapse. Then I wake up around 2AM and get most of my work done. It’s 4AM while I’m writing this, which I can do because I went to sleep at 8PM. Soon I’ll go back to sleep until about 8AM.
I’ve noticed for years that I’m weak when it gets warm, and I’m weak after eating a full meal. I try to organize my day so I can rest at those times. Your times might be different.
Some things to think about in scheduling a day with MS: First, do you know your own rhythms? When you have a good or bad stretch, note the time and what was happening then. Days aren’t always the same, but we all do have patterns. Then schedule.
Scheduling Sleep
For people with immune diseases such as MS, sleep is the most important medicine, but like everyone else in the industrial world, we tend to ignore it. Studies show people with immune conditions have less pain, less brain fog, and less depression when they get more sleep.
Matt Cavallo, a health writer with MS, writes in MS Focus, “Get in a sleep rhythm if possible. Be consistent with the time you go to sleep. Prioritize your sleep as an important part of your routine.”
For some, MS symptoms may make sleep difficult, but at least don’t make it harder than it has to be. Don’t put other stuff ahead of sleep. “I don’t stay up late to watch shows,” says Cavallo. “I record them to watch later.”
He says he makes his productive times longer by starting earlier. He wakes up early to walk his dog and get his exercise done while he’s in good shape to do it. Then he doesn’t have to think about exercise in the afternoon when his body wants to sleep.
Note that most people, not only those with MS, crash after lunch. That’s why many cultures, especially those in warm climates, traditionally have siesta time in the afternoon. Then people can stay up and active into the evening.
Take Breaks
Have you experienced this? You feel pretty good; you’re doing things you want or have to do. Your friends or family are doing fun things, and you want to join them. So you keep going until, suddenly, you can’t take one more step. It takes you hours to recover.
There’s a saying, “You don’t know you’re running out of gas until you’re out of gas.” The way to avoid exhaustion is to rest before your body makes you stop. Schedule 10- or 15-minute breaks in which you really rest. Nap, meditate, pray, watch the birds, have a cup of tea or something. Don’t use that last bit of gas, and your downtimes will be much shorter.
I find that if I can lie down for 5 minutes every couple of hours, I can keep going much longer. It’s like office workers remembering to get up from the desk and move around every half hour. We have to take breaks. I think different people need more or less time for breaks, but we all need some time to recharge.
Dealing With the World’s Demands
For sure, scheduling is much more easily said than done. If you have a job or young children at home, how do you schedule around life’s other demands? To be honest, I’m not sure keeping to a schedule is always possible for everyone. But there are some strategies that might help.
Learn what your good times are and let your family know. Let them know there will be better and worse days and that you appreciate how confusing your variability might be for them, but you need to keep to your schedule.
See if you can extend your productive times, like maybe getting up earlier to make the kids’ lunches. Or get more help, like teaching them to make their own lunch. Perhaps other housework can be done at night or in the early morning, or whatever your good times are. If you need to pick kids up from school or take them somewhere, can you find a way to rest first?
An 8-10 hour work shift might be too much for you. Fatigue is a major reason why many people with MS become disabled, and I’m all for getting on SSDI disability, but there may be other ways. Can you get a job with a split shift and nap between the splits, or one that allows you breaks every couple of hours? Can you work part time? Or work from home in a job or your own business?
Being your own boss makes it much easier to schedule your time, though a business of your own can also drain you. Whatever you do, try to stick to a schedule that works for you. Getting into a daily rhythm, even a weird one like mine, has helped my body function. There are a few special occasions where I break my pattern because I really want to or because family or friends need me, but I try to schedule a slow day or two afterward. I know I’ll need it.
I think we’re all better off when we schedule our days. We’re not kids anymore.
To connect with other people living with multiple sclerosis, join our MS Facebook Support Group.
Photo Credit: iStockphoto / Getty Images
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