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a dysautonomiac cancels her gym membership…

a dysautonomiac cancels her gym membership…

The title of this post is a long overdue follow up to my post, a dysautonomiac walks into a gym. In the near future, I hope to follow it up with “a dysautonomiac gets abs of steel, renews gym membership”, or better yet, “a dysautonomiac wins free gym membership with handsome gay personal trainer”, or even “a dysautonomiac wins the lottery, builds her own personal 5,000 square foot gym, installs pool, becomes a brilliant scientist and finds the cure for POTS. With abs of steel, naturally.”

Working title, of course.

The title of this post isn’t just a clever maxim, I actually did cancel my gym membership. Or, I’m going to, after I send a written request, go down to the gym to fill out a cancellation form, attend an hour long interview with the gym’s intimidatingly thin trainer “Bridget” who looks like she could benchpress my dad, write a five hundred word essay on why I want to quit the gym, and deposit some ovaries.

Going to the gym has become increasingly difficult over the past year. With helping to take care of my mom and my in-laws, and new home ownership, part of the challenge has been finding the time to go to the gym. The majority of the challenge, however, has been finding the energy. Patients with postural orthostatic tachycardia syndrome (POTS) do not tolerate exercise well due to low blood volume, low blood pressure (for some), and high heart rate. Perhaps even worse than the exercise intolerance is the post-exertional fatigue that occurs after engaging in any significant physical or mental activity. You know how you feel energized after a workout? How you are empowered after climbing a mountain, or surfing, or running a 10k?

Yeah, I don’t. I know how it feels to crawl under the covers and pass out.

People with POTS pay for exercising, sometimes for days after. Right now, I will pay for a quick 5 minute recumbent bike ride for three days. There’s never a good time to feel awful, so planning gym trips becomes increasingly challenging. With the focus on my mom and my in-laws for the past year, my exercise plan has gone by the wayside. I take my dog for a short walk every evening, but that has been the extent of my activity.

most of my exercise these days is courtesy of this guy. you try saying no to that face.

Prior to POTS, I exercised regularly. I liked working out, although – full disclosure – anytime I have ever worked out, it was probably to cancel out something bad I wanted to eat later. That old adage – “nothing tastes as good as skinny feels” – yeah, that’s bullshit. Ice cream tastes as good.

I tell everyone I don’t have kids, I have 3 old people. I like to pull out pictures and show random strangers – “This is my 75 year old. Aren’t they cute at that age??” Because caring for my old people takes a lot of energy, I don’t have any energy left to go to the gym. The once a month I do actually make it, I don’t have the stamina to walk from the car, up the stairs to the second floor of the gym where the recumbent bicycle and rowers are.

Over a year after moving into our new house, we finally brought my stationary bike out of the garage and upstairs where it can be used. Engaging in cardio exercises can help strengthen my heart and promote better circulation, but it’s so hard. Cardio is like my Everest. Or, like riding the recumbent bike on the “hill” setting. They’re basically the same thing.

stationary recumbent bicycle
i no longer call my bike “brad pitt”, because i’m not that sure i’d like that ride these days. now i call it “harrison ford”, but not harrison ford now, harrison ford from, like, Indiana Jones, or even Star Wars. i’d ride that.

So, now I start from square one, which means riding the bike on setting 1, the easiest resistance, for 5 minutes. After a week or two of that, I hope to be able to increase the resistance and/or duration of my rides.

Although I’m no longer going to the gym, I’d like to share some tips for successful gym sessions. First, I recommend reading a dysautonomiac walks into the gym, as those tips are still applicable.

  • Wear something that makes you feel attractive. I don’t mean sexy yoga pants, although if that’s your bag, get up on it. I mean something you would have worn when you were 3, when you weren’t afraid of anything and you owned every outfit you wore like they were rolling out the red carpet, and, baby, you were the star. Wear a fricken tutu. With a superhero t-shirt. Or wear a cape. A pirate eye-patch. Wear something so incredibly ridiculous that you won’t wonder if they’re staring at you, because of course they’re staring. But not because you seem dizzy or because you only did 2 pushups, but because you’re wearing a t-shirt with a photo of your dog wearing a t-shirt with a photo of you, and rocking that shit like you were Michael Jackson. Or even better yet, make outdated Michael Jackson references. Then people will really stare.
  • Talk the lingo. Nothing makes you feel sexier than talking about wee wees and hoo hoos, am I right? Same rule applies at the gym. You want to walk the walk? You’ve got to learn the beefed-up bro talk. No one will bat an eye when you walk on the treadmill for 1.5 minutes, then pass out in a puddle of your own drool when you inform them of all the burpees you did that morning. Or tell them you’re already tired because prior to coming to the gym you were doing kickdowns, or turkish getups, or cumquats, or hoozywuts, or motorboats. Clearly I have no idea what I’m talking about.
  • Have a theme song. If you watch professional sports, you know that every athlete has their own theme song. When they’re introduced prior to tip off, when they step up to the plate, their song blasts over the speakers. You, my friend, are an athlete. Blast your song. Maybe a little “Eye of the Tiger” gets you going. Or maybe Rachel Platten’s “Fight Song” is your jam. Maybe you’re like me, and you rock out to a little “Nuthin’ but a G Thang” or “Part of your World” from Disney’s The Little Mermaid. Whatever it is, rock it.
  • Encourage yourself. Going to the gym is hard. You may not look like the others at the gym, and your body probably doesn’t work as well. That’s okay. That woman on her 7th mile on the treadmill who hasn’t even broken a sweat – don’t compare yourself to her. You’re not her. And don’t compete with the workout you used to do before all this illness shit happened. You’re not her, either. There’s no one for you to compete with, because there’s no one with your exact experience. So don’t get down on yourself, build yourself up. I tend to look myself in the eye in one of the 10,000 mirrors at the gym, and say, “Linds”, (I only call myself “Lindsay” when I’m in trouble), “be brave. And, p.s., your boobs look fabulous.” Have a mantra or a motto that you think to yourself (or shout aloud, if you prefer) when you first set foot in the gym each time. Maybe it’s something simple, like “You are strong” or “I’m proud of you for being here.” When the self doubt and fear creep in, maybe you give it a little attitude and say to it, “Not today, motherf*cker” in your best Samuel L. Jackson voice. Find whatever works for you, whatever lifts you up, and use it.

And after each workout, always thank your body for supporting you.

Friends, what are your exercise tips?

“Life is to be lived, not controlled; and humanity is won by continuing to play in face of certain defeat.” – Ralph Ellison

Smell ya later.
– Linds

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

exercising like a(n elderly) boss…

exercising like a(n elderly) boss…

I’ve been tai chi’ing like a grandma.

Wait…..let me back up.

photo credit: Calamity Meg via photopin cc

As you may remember from a post earlier this year, my goal for 2013 is to find an exercise program that works for my illnesses. Exercise intolerance is a primary symptom of both dysautonomia and ME/CFS. Even the simplest exercises are very difficult.

Last summer I tried swimming therapy for exercise and really enjoyed it.  Because the hydrostatic pressure from the water promotes circulation, I actually feel fairly “normal” when in the pool.  However, after gaining a few pounds I no longer have a bathing suit that fits. I’ve also had a few nightmares lately where I’m diving down in a pool and I get so dizzy that I can’t tell which way is up (which happens occasionally) and I end up drowning. So, thus far this summer I have stayed out of the pool.

I’ve been going for regular rides on my stationary recumbent bike.  However, with time our muscles get used to the same exercises and the benefits of a workout can plateau.  I’m still trying to lose weight and tone my muscles (especially my legs so I can stand for longer periods of time), so I wanted to switch up my workout a little.

A few months ago, I tried doing some light walking. The first time I went for a walk I did just a quick 10 minute stroll around my neighborhood. I thought it went well, until I arrived back home and realized how tired I was. I climbed into my bed (sweaty walking clothes and all) and passed out for the next 5 hours.

…and 30 and 48 months.

I continued walking at a slower pace for shorter time, slowly increasing with each passing week, but wasn’t progressing as fast as I’d like. I would regularly see a group of senior ladies walking and wanted to ask if I could join them, but they were way out of my league.

But then it hit me….senior exercises! I have more in common with my grandmother these days than I do with people my own age, and I’m clearly already exercising at a senior level (if I’m being generous), so why not??

For my birthday last week (you can skip the obligatory “happy birthday” comments) I got a couple of exercise dvd’s for seniors – yoga and tai chi – and gave them a try.  The workouts are tailored to promote balance and mobility at a slower, lighter pace, so they’re ideal for me. I am really enjoying the workouts, but those seniors are putting me to shame.  It’s a little embarrassing to have my ass handed to me by someone over twice my age.

my current seniors of choice.

Exercise is a big part of my life right now. I feel like I spend a good part of my day trying to conserve enough energy so I can spend it all on a light work out that evening. The majority of my schedule revolves around exercising, as it’s the only thing I’ve found that helps with the muscular and joint pain I often get, and does affect my orthostatic intolerance.  It’s slow progress, for sure, but it is progress.

So now I have a new goal – the senior olympics. I figure if I start training now, I’ll rock those games when I finally become a senior.

Grandmas everywhere, you better watch out.

“You don’t stop laughing because you grow old; you grow old because you stop laughing.” – Michael Pritchard

Smell ya later.

exercise (in)tolerant…

exercise (in)tolerant…

After my last two posts, you are no doubt now very familiar with my exercise plight.  In this post I will finally share my formulated plan to address my exercise intolerance, and perhaps begin to tolerate it. But first, because this post involves information that could be misinterpreted as medical advice, I must issue a disclaimer: The information in this post, including any information available through links, is provided for information purposes only and is not intended as medical advice. You should consult with a licensed medical professional before starting any new treatment, including an exercise plan.

Lawyered. Okay, let’s move on.

Before spaceman’s disease (aka dysautonomia), I was always in good shape. I worked out about 4x per week, but even when I wasn’t at the gym, I was walking around the park, chasing after birds on the beach, carrying law books totaling half my weight up three flights of stairs. I’d brag about how healthily I ate, but that would be a lie. I ate what I wanted, when I wanted. Sometimes what I wanted was a plate of veggies for lunch, and sometimes it was ice cream for dinner. Gaining weight was never an issue, and on those rare occasions when I did gain a few pounds (aka the holidays), I’d spend an extra five minutes at the gym that week and skip dessert.  This photo was taken on the night I was taken to the ER first showing dysautonomia symptoms:

for some reason i thought those EKG pad “metal nipples” were hilarious. probably the drugs.

However, that lifestyle seems miles away from where I am now.  Don’t worry, I won’t be showing you any photos of what my stomach looks like now, but it certainly doesn’t look like that. I’m about 10 lbs heavier, but even worse, I’ve lost all muscle tone.

on the positive side, my butt now looks fantastic in a pair of jeans.
[photo by cobalt123 via PhotoRee used pursuant to Creative Commons license]

One of the common symptoms of dysautonomia and ME/CFS is exercise intolerance.  POTS makes my heart rate rise when I stand, which can make exercising difficult. A few years ago, before I was diagnosed with POTS but after I began having symptoms, I went in for a stress test. The nurse hooked me up to a few monitors, including one that monitored my heart rate, and told me I would be running on the treadmill until my heart rate reached approximately 180 beats per minute. I stood up on the treadmill ready to begin, and before the nurse even pressed the “start” button, my heart rate was already at 160. Just standing still. That’s POTS.

Here’s a video I shot recently where I had forgotten to take half my medication, so it shows my heart’s crazy reactions to standing. The watch I’m wearing in the video is a heart rate monitor that connects wirelessly to the strap around my chest that monitors my heart rate. My normal sitting heart rate is usually in the mid 50s, so the starting hr of 70 in this video is high for me.

wanna ride on my handlebars??

So, as you might imagine, a heart rate of 120 just standing still makes it difficult to do any activity that raises my heart rate quickly. That is why, as I mentioned before, doctors suggest seated or reclined exercises for dysautonomia patients, such as riding a recumbent bicycle or using a rowing machine. A few months ago, I was riding my recumbent stationary bicycle 3x per week for anywhere from 20-30 minutes. However, as my fatigue has increased, it got to the point where I would immediately have to go lay down after getting off the bike. Sometimes I couldn’t even make it to the bedroom and would have to lie on the floor next to the bike. After a few months, I stopped riding.

But this year, my goal is to lose a few pounds. I already eat as well as I should, which leaves exercise. My cardiologist has repeatedly explained the necessity of starting out slow. Very slow. He also explained the benefits of doing workouts that strengthen my leg and core muscles in order to aid my body in pumping blood back up to my heart and brain. So, I developed a workout plan for this month incorporating seated or minimal standing exercises that focus on my legs and abs. With my new plan, I just look on the calendar I created and do the exercises listed for that day. I try to do it all, but if the fatigue or muscle weakness take over, I do what I can. Something is always better than nothing. You can check out my plan here.

my new resistance bands.

At the beginning of February I will create a new monthly plan based on the successes and challenges I experience this month. As you can see from the plan, I weight myself each Wednesday and write it down so I can chart if the plan is effective. If not, I can reevaluate it the following month. I realize I’m not going to lose weight overnight, especially with this plan. It takes patience and perseverance to exercise when you’re chronically ill.

Doctors agree that exercise is crucial in the treatment of POTS, yet exercise intolerance is a challenging POTS symptom.  If you’re experiencing difficulty exercising, I would recommend creating a plan by writing down what you’ll do each week. Talk to your doctor, and start slow. Maybe you’ll do one situp. Maybe you’ll just do a few stretches. Maybe you’re able to run miles.  Whatever you’re able to do, let’s support each other and do it together. Please feel free to mention your exercise successes and challenges below.

“Patience and perseverance have a magical effect before which difficulties disappear and obstacles vanish.”
― John Quincy Adams
Stay tuned.
– L
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spaceman’s disease…

spaceman’s disease…

This is Part 1 of what will probably be a two part post about deconditioning and exercise. Hope you’re in the mood for a science lesson 🙂


“POTS” is kind of a stupid name for an illness. There, I said it. I’m sure you were all thinking it.

I’ve noticed that when I comment on Twitter about having POTS, I get at least a few followers whose profile contains a picture of a big fat marijuana leaf. My condition has nothing to do with marijuana, or cookware for that matter. So, stoners and Martha Stewart wannabees, I’m flattered, but you’re going to be sorely disappointed with this site.

Marijuana growing in pots
Marijuana growing in pots (Photo credit: Wikipedia)

My preferred name for my illness is “spaceman’s disease”.  Astronauts returning from prolonged tours in space often suffer from orthostatic intolerance immediately upon returning to earth. That is why when a shuttle lands back on earth, t.v. cameras don’t usually show the astronauts exiting the hatch and waving – they probably can’t even stand up. Astronauts are typically carried offboard the shuttle.

Because the force of gravity is much less in space, astronauts’ hearts do not have to work as hard to circulate blood throughout their bodies. As you may remember, gravity pulls blood towards my legs and my heart has difficulty counteracting gravity to get the blood back up to my upper extremities and brain. This is why I often feel lightheaded when standing and why my legs often appear red – I don’t always get enough blood to my brain because it is pooling in my legs. Without gravity pulling the blood down, my POTS would probably be nonexistent.

Cardiologists believe astronauts’ hearts shrink in size and blood volume decreases after weeks or months in space.  They essentially have temporary POTS, although I’m not sure if they experience all the symptoms or primarily orthostatic intolerance. Check out this Wall Street Journal article for more info, or this article from ABC News.  Although people have been suffering from POTS symptoms long before humans ever ventured into space, the illness was only officially named recently. Therefore, POTS is occasionally referred to as “spaceman’s disease” because it’s patients exhibit many of the same symptoms as astronauts (including awesomeness, of course).

Some doctors believe POTSies also have smaller hearts, like astronauts returning to earth, and that is how POTS also earned the nickname, the “Grinch Syndrome”, after the beloved Dr. Seuss character who’s heart was “two sizes too small.” However, I, as well as many of my fellow POTS friends, have had numerous echocardiograms (videos of my heart) and have always been told my heart is normal size. Therefore, I’m not a fan of the name “Grinch Syndrome” mostly because it is often inaccurate, and also a little because I would never steal presents from little Cindy Lou Who of Whoville.

In order to help returning astronauts overcome their orthostatic intolerance, NASA developed an exercise regimen that helps astronauts strengthen their heart, increasing its size and blood volume, and strengthen leg and core muscles, aiding in blood circulation. Dr. Benjamin Levine, a cardiologist at the University of Texas Southwestern Medical Center, worked with NASA to develop the regimen that focuses on seated exercises, including cardio workouts on seated rowers and recumbent stationary bikes, as well as strength training.

After realizing that there were hundreds of thousands of chronically ill individuals suffering from nearly identical symptoms as astronauts, Dr. Levine adapted his NASA exercise regimen for those with dysautonomia. I have heard mixed reviews as to whether his specific program cures dysautonomia, but there is little doubt that exercise can help POTS symptoms. But, how do you exercise when a major symptom of the illness is exercise intolerance? I will address this dilemma in my next post.

I’d like to start a movement to begin referring to POTS as “Spaceman’s Disease” because I think it makes me sound mysterious and worldly. Admit it, if I walked up to you and said “I have spaceman’s disease”, you would wonder if I am some kind of intergalactic traveler that defies the laws of time. Beats having people wonder how much marijuana I had to smoke to become ill.

my other ride is a space ship
my other ride is a space ship

To be continued…

“When once you have tasted flight, you will forever walk the earth with your eyes turned skyward, for there you have been, and there you will always long to return.” – Unkown

Happy New Year! Hoping you have a wonderful 2013!

Stay tuned.
– L


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