Exercise: Friend or Foe?

If you asked me whether or not I would be exercising after I first got sick, the answer would have definitely been no. I could barely walk from room to room without getting weak and winded. Chronic tachycardia will have that effect on a person. I couldn't take the stairs on my college campus, instead I had to rely on elevators and even then it was a stretch just to get myself from class to class. This was all before my POTS diagnosis of course.

My EP kept urging me to join a gym and just start slowly on bikes and weights. For a long time, I ignored his advice. I then stumbled upon a blog about a research study in Texas on exercise and the POTS patient. I was intrigued. I immediately contacted the blogger and the research associates but never heard back, so I am unclear what Dr. Levine's specific exercise protocol is, but the blog mentions recumbent bicycling, swimming, rowing machines and weights. So, I did some research, and started exercising at a nearby rehab facility. Since Dr. Levine's specific protocol was not revealed online, the owner designed an exercise regime specific to my needs. He performed an EKG, blood pressure readings, and a test called the BioZ that measures cardiac output, stroke volume, and things of that nature. He said the always reassuring, "I've never seen anything quite like this before," in reference to my off-the-charts BioZ test results. He then performed the BioZ test again five minutes after exercise and my results were encouraging: everything had come back into a normal range. He concluded that I need to exercise in order to keep my circulation going. And I believe he is right. However, in the beginning, I couldn't tolerate any exercise. But now that I have gotten my condition somewhat under control through salt, fluids, and the occasional beta blocker, I am able to do certain exercises and movement really does make me feel better.

If I don't exercise for a couple days, I start to notice the effects on my body. When I am diligent about my exercise routine, I am much less lightheaded and suffer fewer woozy spells. I purchased a recumbent bike to use at home and ride anywhere between 5 and 10 miles every other day at a low to moderate resistance setting. If I ride it a bit each day, I tend to feel better. However I think it's important to take a day off the bike here and there to let my muscles recover. I try to do light weights with high reps 2 to 4 times a week for about twenty minutes at a time as well. I do some leg work, abs, back, and shoulders. I have definitely noticed an improvement in my muscle tone and I am a bit stronger overall. An occasional pilates workout provides a nice diversion from my standard routine and if I am experiencing worse than normal brainfog I turn to yoga, as it enhances bloodflow to the brain because of all the inversions. Lately I have not been devoting as much time to exercise as I should be, and I can feel it. My woozy spells are indeed motivation to get back to the gym.

As with any exercise regime, please consult your doctor before beginning. Exercise can be a positive experience that improves circulation, muscle tone, and creates natural mood-boosting endorphins. Take it slow, if exercise causes you any abnormal or unbearable pain or discomfort, stop and revise your regime. Don't feel pressure to exercise for hours per day. Sometimes just minutes will do the trick; some exercise is always better than none at all. My best advice is to start all exercise in the recumbent position, doing leg lifts on the ground or from bed if that is all you can tolerate. Don't push yourself too hard. Monitor your heart rate and blood pressure throughout, at least in the beginning. Your stamina should increase over time. Be patient with your body, and most importantly, listen to it. Do not exercise to the point of exhaustion. Start with brief bursts of exercise and wait and see how your body responds the next day. Over time you may experience a noticeable improvement in your symptoms as I have. Exercise has quickly become one of my best friends.

Irony and Balance

In reference to my last entry on Type-A personalities being prone to POTS, isn't it ironic how people who once prided themselves on being in control can't even control their own bodies as a result of dysautonomia? How intellectually astute individuals develop an illness that causes brain fog and thus inhibits their ability to think clearly? How former dancers lose the feeling in their feet due to neuropathy? I am one of those people who have lost the things I once defined myself by. All these things ripped out from underneath me leave me feeling completely vulnerable and a little bit lost in life. Although I try my best not to, I find myself clinging to the past when I achieved things almost effortlessly. Now, each day can feel like an uphill struggle. In the words of my wise EP, "EVERYTHING is way out of whack." Well that's for sure. My body is incapable of functioning in the same capacity it was before and I just have to get used to it. It is a strange sensation to not feel my own feet, but I suppose something I will just have to live with. I used to be a perfectionist, so it is hard to accept not feeling my feet or the fact that there may not be a remedy for the problem. All these strange maladies caused by POTS leave me wondering: what's next? Dry eyes, numb feet, dizzy spells, tummy aches, sleepless nights--what's next?

Isn't it ironic how the things a person loves and uses to validate and define oneself can be snatched away in a heartbeat...I am immediately reminded of the Alanis hit from the '90's.

I suppose it's time to find a new niche for myself, one which accommodates these strange and incapacitating ailments...it is difficult to thrive in society when it is hard some days to even leave the house. The unpredictability of symptoms is perhaps the most frustrating aspect of dealing with chronic illness. I am tired of not being able to make plans with people, or plans to do anything for that matter because I don't want to be perceived as unreliable, flaky, or incompetent. Needless to say I am a bit worried that I won't be able to cut the mustard at a new job when I can barely remain conscious for a 45 minute job interview. My resume, cover letter and applications are immaculate and usually sufficient enough to land decent interviews, but after the interviews I am sure the employers wonder why I was so fidgety and couldn't sit still for long. Of course they are not aware of what's going on inside my body. And sometimes I wonder if maybe I am doing myself and a potential employer an injustice by even trying to work again when my symptoms can strike at anytime. I figure, I will never know if I can handle it unless I give it one more shot. I know I have some valuable skills to offer someone out there, but the conventional 9 to 5, be-on-time-and-ready-to-work thing doesn't sound too feasible for me at this point in time.

In the meantime, I will continue to ride my recumbent bike, strengthen my legs and arms on weights, do some pilates, get in the best shape possible, and hope that someday soon my body will regain the strength, stability and stamina to be a productive and successful employee somewhere. My life lacks any sense of real balance right now. I spend a disproportionate amount of time at appointments that just leave me exhausted and full of more unanswered questions. I am striving to achieve some tangible balance in my life right now. I am making it a goal to accomplish at least one significant task each day, even on the bad days, and even if it takes me all day to do so. In my downtime I will be continuing to work on my personal fitness, nutrition, and of course, sleep.