a dysautonomiac walks into a gym…

a dysautonomiac walks into a gym…

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.

my bicycle. i call it “brad pitt”, so i can say things like “i’m going to go ride brad pitt.”

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.

yeah, i’ve been working out.
photo by petechons
via cc PhotoRee

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.

true story

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.

    this machine i just can’t do. not sure why, but it results in bad palpitations and chest pains.
  • 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.
– Linds

20 thoughts on “a dysautonomiac walks into a gym…

  1. Bless you. The gym is not an option for me. I need to get over this treatment and MAKE myself get started. I would rather walk. But the heat here where I live has caused the air quality to for the most part to be in the Unhealthy Sensitive to Unhealthy Everyone. Tomorrow is in the moderate range but I am not ready for a walk just yet.

    1. I am very fortunate that I am able to exercise at a gym, because for years, I couldn’t. We’re in the middle of a heat wave here as well, which unfortunately has a big effect on whether I’m able to exercise.

  2. I loved going to the gym before I got sick and I’m very slowly building my activity levels up so hopefully one day I’ll get back to it. At the moment though I only do a very small amount of yoga and light cardio (walk or bike ride) each day. I love the idea of a mantra and #bebrave is great!

    1. That’s great that you are able to do yoga and light cardio, even if it’s a small amount. Good for you for trying – it’s so tough!

      I’ve found that, with having a chronic illness, I end up having to encourage myself to do some of the simple things that are now difficult to do (walk up a flight of stairs, stand in line at the store, etc.), so that’s how #bebrave came about!

  3. In my case what is working is Chair Yoga and soft Taichi. Muscles are quite strong, and It seems, after a couple of month I am starting to feel a bit stronger. I can not go out due to my health problems, so I have to do it at home, but as I said It is starting to work for me. Wish you luck

    1. That’s wonderful! My first exercises were floor (no standing) yoga. I also started with a dvd of Tai Chi for Seniors, which I still do. Those low impact exercises are a great way to build strength without overdoing it. Good luck with your workouts!

  4. I also have a yoga and tai chi DVD for seniors! Which is about my level of fitness right now! This post is really inspiring Lindsey and really helpful. With doing so much better now health wise, exercise is now a real possibility for me and this posts really helps me see how I can build it up. Thank you!

    1. I love my yoga and tai chi for seniors DVDs! I also often borrow some from my local library so I don’t have to spend the money to buy them. I’m so glad you found this post helpful!!

  5. For me inactivity is a killer. I always refer people with dysautonomia to the Chronic Fatigue sites, where they have been dealing with the exhaustion aspect of this illness for a long time. Slowly expanded activity has taken me from the bed to a pretty active life..It took a long time, but its worth the effort…Naturally all exercise , and meds have to be run by your Doctor, but letting this stop us from stretching the rubber-band of activity slowly and carefully causes more harm then good in my experience..

    1. Thanks for your comment, Jeff! I completely agree – activity has greatly improved my symptoms over the years, and if I go a while without exercising, my symptoms get worse.

  6. Since having M.E. I’ve always wished I was one of those people who hated exercise and never wanted to go to the gym, cause being someone who LOVES that stuff, it’s horrible not being able to do it! I recently started doing yoga (just at home, from instructional videos) and even though it’s like the lowest impact form of moving around and doing stuff that I could possible find, I still feel all “YEAH! I’m doing a thing with my body!” 🙂

    1. I can totally relate to this! In the beginning, when I was unable to do anything, I would often get frustrated with people who would complain about having to go to the gym, because I would have LOVED to have been able to go to the gym! They didn’t know how lucky they were! Lowest impact activity, like yoga home videos, is a great place to start! Good for you!!

    2. I’ve always been sick. Ive never had energy. I honestly believed most of my life that people who claimed to enjoy exercise were lying. I just didn’t think it was possible. And when people said they would exercise in the morning to “jump start” their day, I was bewildered. I spent my childhood being called “lazy”. I still cannot imagine ever choosing running and jumping over sitting and sleeping. lol I wish I knew what it was like to enjoy moving.

  7. Great blog! I dont qualify for a POTS diagnosis. My heart rate doesn’t get quite high enough. But I still cannot climb one flight of stairs without panting and tunnel vision.

    The gym. sigh Such an odd place for us, isn’t it? Just joining was a pain. “What are your goals?” “To join a gym” “Yes but what is it you want to achieve?” “Umm To join a gym” “But why do you want to join our gym?” “To exercise” “But why do you want to exercise” “Because it’s good for you” LOL “JUST TELL ME THE STINKING FEE!” Then theres the pressure to get a trainer. “No my doctor and I have developed a routine together”. Then when you’re working out there is always some helpful guy to say: “Come on girl! You can do it. dont stop now” “Excuse me. Do I know you??”

    Ive done good with lifting light weights just til it starts to burn then resting til I feel normal and moving to the next machine at the gym. Then 15 to 20 minutes of slow stretching.

    But yesterday I decided to try one of their classes that was supposed to be a mixture of tai chi, yoga and pilates. Wow was it harder than I thought. I hurt from head to toe and spent the rest of the day in bed. I did the easiest version of all of it and still rested during a lot of the exercised. But I was in the front and was afraid me just laying there would be distracting to everyone else so I kept on like a trooper. Next time I’ll be in the back and maybe do 1/4 of the routine. lol Hopefully I’ll work my way up to half one day. 😀

    1. Ha!! I can completely relate about the trainers – at least once a week some random guy approaches me and tells me I’m using the machine wrong, and offers to show me the “correct” way, even though last week that’s how I was using the machine and it was wrong then. The gym makes me a little nervous because eventually I hit “the wall”, and it comes on very suddenly. After 20 minutes, I’m feeling good. 10 minutes later, doing okay. One minute later, on the floor and can barely get up.

      I’m impressed you tried one of the classes – I’m too chicken! They always seem so hard. Maybe I should try hiding in the back for a quarter class, too!

      Thanks for your comment. It made me laugh 🙂

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