Lifestyle Modifications

High-salt Diet: I have always loved salt so, for me, a high-salt diet was not a big problem. That being said, when I first got sick, I had an extremely difficult time tolerating pretty much anything I ate and that included salt. This meant that in the beginning, I had to focus on getting enough to eat—not getting enough salt. As my GI symptoms improved, I was able to consume more and more salt, but then eventually I had a different problem. I was eating junk food (chips, popcorn, etc.) just to increase my sodium intake and I was unable to exercise. As a result I was gaining weight. Only recently have I been able to strike somewhat of a balance between sodium and calories. And there are still many days when it is a challenge. Some of my favorite high-salt foods without a lot of extra sugar/calories are: soy sauce (over 900mg/tablespoon!), salted almonds, jerky (which is salted, dried meat and I personally prefer turkey which has almost 500mg of sodium in 1 ounce), soup, deli meats (ham), dill pickles and cheese. 

Exercise: I have found that people love to tell sick people to exercise. It sounds like a great idea. If you improve your fitness, your symptoms will improve. The only problem is that people were saying this to me when I had to ride a van for disabled kids to my college classes because I was unable to walk across campus. Exercise was a struggle for me the first few times I tried it. I would get so tired that all I could do is sleep. I had headaches, low-grade fevers, body aches and swollen lymph nodes within a day or two of trying each time.

Here is what I finally did that worked: I bought an exercise watch with a heart rate monitor that I could set to alarm when my heart rate got too high (for me, this is anywhere over 135bpm). I have found that if I exceed that threshold, all my symptoms come back. I also use the monitor to limit my tendency to be stubborn and just try to push through the fatigue, as this is a strategy that never worked. If the watch alarms, I slow down, no excuses. I have also found that if I take 20 mg propranolol at least an hour before I start exercising, my heart rate will stay lower during exercise and I am able to do more without getting as exhausted afterwards. The same thing is true of drinking water. I make sure to have at least a glass or two of water in the 30 minutes before I start exercising.

The key is to take things slow. And by that I mean exercise so little that most people will probably laugh when they hear about it. I started on the stationary recumbent bike for 2 minutes at a time (starting with exercise that does not involve standing makes things a lot easier). I did this for a week or so then added another 15 seconds. I repeated this process until after about a year I was able to ride the bike for 15 minutes at a time. This was a huge accomplishment for me and it has definitely improved how I feel. In fact, just recently I have starting jogging on the elliptical using the same strategy of starting with a couple minutes and adding 15 seconds every few days . I can now jog for 15 minutes at a time. If you had told me that a year and a half ago, I never would have believed it.

Sleep: Sleep has been a big issue for me. When I first got sick, I would probably sleep on average 14-15 hours a day. I would wake up and go to class, come home and pass out from exhaustion for a few hours and then eat dinner, do some homework and crash again. More recently, I have had the opposite problem—sleep is now illusive. I am usually exhausted by the time I get in bed, but often find it hard to go to sleep. My legs will ache and I can never seem to get the temperature right.

For me, sleep is one of the things that has the strongest influence on my symptoms. A recent study at Vanderbilt showed that there was a link between sleep problems and quality of life and that is certainly true for me. If I don’t get enough sleep, I will almost certainly get a headache, low grade fever, bad muscle aches, etc. During periods of time when I do this consistently, I have found that I set back months worth of progress I have made in my illness control. Protect your sleep time. This is my number one rule.

Some other things I have found that improve my sleep:

  • Have a regular sleep schedule and stick to it!
  • Exercise, as long as it’s not within a couple hours of bed.
  • Electric blankets, these are especially awesome on feverish nights when I have chills.
  • Avoid naps. Sometimes, when I crash, there is no way to avoid sleeping, it is just going to happen. But in general, my overall quality of life is much better since I have dramatically reduced my napping.
  • Putting a pillow under my ankles or letting my feet hang off the end of the bed really helps when my legs are aching.

Temperature: I have tremendous problems regulating my body temperature. I am either burning up or freezing cold with virtually no middle ground. If I get hot for even a few minutes, my face and my ears will turn bright red and stay that way for literally hours (the same thing also happens when I blush). The most important thing I have learned about myself is that if I am warm, I must be drinking water at all times. If I don’t, I will pay for it in a few hours. I keep a water bottle and a salty snack in my purse and several in my car. Water helps, but water and salt (either from food or a tablet) helps more. If I am forced to spend a long afternoon in the sun, I will often sit in my bed at night and suck on an extra salt tablet and drink several cups of water. This really helps.

The other thing I have noticed is that while being cold is uncomfortable, when I am cold I generally do not feel as light-headed. Because of this, I tend to keep the thermostat in my house set a little cooler than most. This also means that exercise must be done early in the day or late at night, or preferably inside a nice cold air-conditioned building. It also means that if I have to walk outside in the winter, opting for a lighter jacket is the best choice.