I have talked about the difficulties of exercising in a previous post, and as it’s a constant battle, will probably post many more. I have put on some weight since my dysautonomia diagnosis from a combination of inactivity and medication. In fact, when I stepped on the scale just a few weeks ago, I weighed more than I ever had in my life. Besides feeling like it wasn’t helping at all, weight gain was one of my motivations for stopping the SSRI.
Last year was my first attempt at really trying to work out with POTS/ME/CFS. For the first half of the year, I exercised by riding my stationary recumbent bicycle at home. By midyear, I decided I wanted to try upright (non-seated) exercise, so I began walking. The first time I went for a walk, I was able to walk for about 10 minutes before I came back home, crawled into bed (sweaty clothes and all) and slept for about 5 hours. I considered joining the gym down the street, but decided just walking the quarter mile to the gym would make a workout impossible.
As the year went on, I was able to continue walking, gradually increasing the time and distance. However, I still felt weak and had difficulty balancing. My leg and core muscles were not toned enough to help aid in blood circulation, and I was having a lot of problems with blood pooling. I decided I needed to join a gym in order to focus on strengthening those muscles.
I have mentioned before the difficulty of exercising with POTS. Exercise intolerance is itself a symptom of the condition. And, with orthostatic tachycardia (high heart rate when standing), I have to be careful not to let it get too high.
Maximum heart rate is calculated by subtracting your age from 220. So, just for the sake of argument, let’s say I’m 34.
220 – 34 = 186
So, my maximum heart rate is 186 beats per minute. Cardiologists usually recommend exercising between 60% – 80% of your maximum heart rate. This is your target range in order to get the greatest benefit from your workout and to exercise safely. So,
186 x 60% = 111.6 beats per minute
186 x 80% = 148.8 beats per minute
This means that while I am exercising, I want to keep my heart rate between 111 and 149 bpm. Sounds easy enough. Except that yesterday, because we are in the middle of a heat wave, my heart rate was 140 bpm just while walking the quarter mile to the gym. That’s with taking a beta blocker. It makes for a quick workout if I can only go up another 9 bpm. If you’re interested in calculating your target range, this calculator can help.
Yet, I am determined to continue going to the gym. This sounds ridiculous, but it is one of the most difficult things I have ever done. There are certainly days where I just can’t do it. There are days where I shouldn’t, but I go anyway, workout for 5 minutes and have to sit outside the gym for 20 minutes before I have the energy to walk home. (I don’t drive there because I probably wouldn’t find a parking spot closer than a quarter-mile anyway). And there have been days where I go, exercise, and end up vomiting in the bathroom.
I know most people hate it, but I actually love going to the gym. For me, it’s a form of meditation – one of the rare occasions where I am actually able to quiet my mind and just “be”. I’m so jealous of people who don’t think twice about going to the gym, who don’t have to be afraid of a workout. I so badly want to just go to the gym and not have worry about whether it’s going to put me in the hospital.
If you don’t mind, I’d like to share some of the things I’ve found helpful in developing a workout plan, in addition to those tips that apply to anyone working out, such as eating protein. (As always, this is just provided for informational purposes and is not intended as medical advice. Discuss any tips here with your doctor first.)
- Start off slooooooow. I can’t stress this enough. As I mentioned, just a 10 minute walk left me out of commission for the rest of the day in the beginning. If you have to, set a timer for just a few minutes at first. I’m now able to walk for 25-30 minutes, but it has been over 6 months. As I mentioned in a previous post, I started with (and still do) exercises that are designed for senior citizens. Start with exercises while lying down, if need be. The Dysautonomia International website has some great recommendations.
- Be sure to drink a lot. On days where you plan on exercising, be sure to drink at least an extra liter of water. And, of course as you drink more water, keep the electrolytes up. You will dehydrate faster as you exercise, and for those of us with illnesses that leave us dehydrated, that can be dangerous.
- Schedule your workout. If you’re anything like me, you have to plan your workouts on days where you have nothing else to do. For example, last night the BF and I had a dinner date, which means I did not exercise. I just don’t have the energy to do both.
- Be kind to yourself. It seems to be human nature to get down on ourselves. So you only worked out for 5 minutes – you just worked out!! So you only did 5 situps – you just did some situps!! That is a huge accomplishment. There was an article in December’s
edition of Women’s Health magazine that encouraged readers to develop their own personal mantra to encourage themselves. The article suggested thinking of a mantra like it’s a hashtag like #strongbodystrongmind or #justbreathe and to repeat it to yourself when you need motivation. My mantra has become #BeBrave, and I’veextended it’s use beyond just exercising to everyday life. More on that in a future post.
- Don’t worry what others think. This goes along with the previous tip. Maybe the lady on the stationary bike next to you has been there for an hour, and you only did 3 minutes. She doesn’t know the struggle you face just set foot in the gym. Smile because you know something she doesn’t, and be proud.
- Be aware of your limits. Even on days where I’m actually able to make it to the gym, there are some things I can’t do. There are some things I will never be able to do. It’s frustrating, but that’s just how it is. Do what you can. Maybe that’s just a few minutes every week. Keep an eye on your heart rate to help set your limits. I use this Polar heart rate strap to watch mine.
- Interval training. One of the exercises that has been most helpful for me is interval training. Interval training involves a series of higher intensity workouts alternating with lower intensity. For example, I will walk at a slow pace for 3 minutes, then at a faster pace (or incline) for 1 minute. Interval workouts help prevent your muscles from getting “used to” any particular exercise and can help burn calories without overdoing it.
How about you – are you able to exercise at all? If so, how do you manage?
“My dad would tell me to, ‘Play for those who couldn’t play.’ So my motivation is for people who struggle in life daily.” – Misty May-Treanor, USA beach volleyball Olympic gold medalist
Smell ya later.