Any POTS or Dysautonomia patient knows all too well that sometimes we have those days where we can't get out of bed no matter how hard we try or how well hydrated we are. Whether we're experiencing dangerous lightheadedness, syncope, fatigue, or pain, sometimes the bed is our only option. Even when things are going well with our health for an extended period, we may still experience a really bad day here and there. That's the unpredictable nature of POTS for you.
Personally, my symptoms have responded very well to weight-bearing exercise and recumbent cycling. When POTS first struck my senior year of college, I was in the best shape of my adult life. I was taking a strenuous ballet class twice a week, yoga three times a week, and walked all over the place all the time. So to all those misinformed people out there who think that POTS is simply a result of being out of shape, I say they're absolutely wrong. I know many POTS patients were great athletes before they fell ill. At my absolute sickest when I couldn't do much of anything, a well-meaning but stubborn and ignorant relative told me I was just out of shape, and that my "heart condition" would go away if I simply got in shape and exercised everyday. Of course his proposal sounded preposterous to me. I could hardly lift my head off the pillow most days let alone become a fitness guru. And his oversimplified explanation didn't account for why I got sick in the first place when I was in such great shape as an active college student.
Nonetheless, my electrophysiologist also urged me to join a gym even if it meant exercising for just five minutes at a time. Eventually (about a year after my diagnosis) I took his advice and began a careful exercise regime. Although I was doing fewer reps and lifting lighter weights than the senior citizens at the gym, I was feeling better after these brief workouts. I also purchased a recumbent exercise bike for home use and between riding that 3 or 4 times a week in conjunction with the weights at the gym 2 or 3 times a week. Between these two activities I was feeling a lot better and able to accomplish a lot more in a day than I had previously been able to. I also experienced far fewer woozy spells. In fact they were almost gone. However, if I went off track and missed a few days of exercise, the woozy spells returned and I felt potsy again. This tells me that consistent (but not strenuous) exercise is the key to a more normal life, at least for me.
After a few months of getting into a good exercise groove, I started a full-time job that sucked up all my time and energy. My whole day revolved around my job and there was no time left for exercise. Although I enjoyed and needed this job, it had clearly impacted my health in a negative way. Sitting upright at my computer desk all day with my hand glued to the mouse was not doing anything to improve my strength or circulation, in fact, the excessive and prolonged inactivity was diminishing it. The woozy spells were back with a vengeance upon standing, my feet were always icy cold, and I was experiencing sudden and intense bouts of weakness where I couldn't do anything but lay there. It may be a blessing in disguise that I lost my job when the company downsized by 50%. Even though I was telecommuting (about as ideal as it gets for someone with a chronic illness), my body could not handle 40-50 hours a week. I didn't even have that many good hours to spare in a week. Although the layoff came as a total unwelcome surprise to me initially, I am now realizing that I was putting my body through hell just to be working. Of course I do not have the luxury of simply not working to focus on my health (I wish I did) as I need the income, but ideally it will be something that pays better than my last job and it will only be part time (I hope).
Since losing my job I have been in a bit of a funk, mainly because my job was basically my whole life since November up until last week, so I am feeling a bit empty inside. I have been lounging around more than I should be, staying in bed longer to try to get sleep that doesn't come, and feel too tired and sluggish to exercise. Yet I know I need to exercise again because it will give me strength and energy and should markedly improve my symptoms as it did the last time. Since I have been spending more time laying down lately, my symptoms have gotten worse. I believe that in order to feel better, I have to keep moving, constantly stimulating my circulation particularly in the legs and I will not be able to go extended periods (in my case about 4 months) without exercising ever again.
For a more comprehensive look at what prolonged bedrest can do to the body even in healthy individuals, please check out this
link. Whether you agree or disagree with the bedrest philosophy, it is interesting to consider how your own body responds to bedrest, and conversely, how it responds to exercise.
