POTS: Getting Back Up

10 Tricks for Living with POTs

10 Tricks for Better Days Ahead.


When I was first diagnosed with POTS, I was completely bedridden. Two years later, I am working out 5 times a week and I have decreased my Midodrine from 15mg 3x per day to 5mg 2-3x per day as needed because my dose became too strong as my POTS symptoms improved. Every Potsie is unique and strong in her own way, so these tips and tricks may not all work for you, or you may come up with an awesome way to modify them so that they do. For example, full-body workouts in a gym may not be the best option for your beautiful body, but maybe another form of physical therapy is. What’s important is that you achieve the best-quality days for you personally. May each day be bright!

1.  Start your day with electrolytes! When you wake up in the morning, head straight for the kitchen and pour yourself an 8 ounce glass of your electrolyte drink of choice. Electrolytes are key to keeping our blood thick and moving better through our bodies. Think of yourself like David Beckham.

Start With Electrolytes

He actually makes drinking out of a paper cup look sexy…Moving on.

So Beckham needs to keep hydrated and to replenish his electrolytes because he’s burning them off so quickly on the field. Those of us with POTS also lose electrolytes very quickly because we have trouble retaining enough salt and water (since we keep peeing it out every 15 minutes. I mean geeze, let me get through a single movie without running to bathroom twice), not to mention we need more salt in our blood to begin with. Hence starting your day off with a dose of electrolytes to get your blood pumping as soon as you stand up, and to help retain the water you drink so you continue to feel good throughout the day.

My electrolyte drink of choice is a packet of Pedialyte mixed into an eight-ounce glass of water. You can also buy pre-mixed Pedialyte if you prefer, but I like it less sugary. The packets are fun because you can choose from plenty of flavors to mix things up and keep from getting bored. You can also join Beckham and drink some Gatorade or another electrolyte-packed sports drink. If your illness requires a low glycemic index diet or you are severely allergic to the salicylates in sugars, I would suggest trying electrolyte capsules or tablets. You can also opt for an electrolyte-boosted water such as Smart Water, but just be aware that it does not have nearly as many electrolytes as the other options listed above.

2.     Shower Smart: Try to always shower at night rather than in the morning, and remember to keep the water on warm rather than hot.

Shower at night

If you are a morning shower kind of gal, try adding it to your nighttime routine instead. Showering can be quite an exhausting process for those of us with POTS, and rightfully so, as the simple act of putting our hands above our heads for the length of time it takes to thoroughly wash your hair can sometimes seem nearly impossible without passing out. Even the act of standing up in the same place for long enough to finish washing your body is tough. This is why it is so helpful to shower at night rather than in the morning. At night you want to be tired so you can get a good nights sleep, especially if you suffer from insomnia, so taking a shower becomes a helpful part of your nightly routine in getting you relaxed (or just plain exhausted) and ready for bed! In the morning, you want to save as many spoons as possible for having a good the day, rather than losing them to showering, and you certainly aren’t looking to take a nap 30 minutes after you’ve just woken up because a shower wore you out.

Believe it or not, being in the water during a shower or bath is actually dehydrating (sort of counter-intuitive, right?). Try to make your showers/baths as quick as possible, within comfortable means, so that you don’t get too dehydrated, and make sure to replenish you liquids with a glass of water once you get out.

In addition to how exhausting it is to take a shower, enjoying a nice, steamy hot shower can make your veins swell, causing all of your blood to pool into your legs and feet. Which brings me to my next tip on how to shower smart for the healthiest you; Always prepare your shower with luke-warm water. It might sound awful, I know, but I promise you it is worth feeling better, and you do get used to it. Many a time have I decided to just go for a long, steamy shower, only to discover pretty severe edema upon finishing, along with visible black pools of blood draining into my knees. The extra heat is never worth it.

Another way to shower smart for some Potsies might be to put a chair in the shower so that you can sit, rather than wasting good spoons on trying to stand up, or if you enjoy a good bath, opt for a bath instead!

Don’t be afraid to ask a loved one for help with washing your hair. When my POTS was at its worst, my sister or my mom would wash my hair for me so that I could save a few spoons and feel my best to enjoy the day with them. Also, meet dry shampoo. It’s your new best friend. Wash your hair every three days, and use dry shampoo in the meantime. It gets rid of the oil and adds tons of volume at the same time. You can thank me later ;P.

3.  Plan your daily fluid intake ahead of time. Fluids—especially water and electrolyte fluids—are what keep your blood thick and pumping better through your body. This is why it is so important to drink enough fluids throughout the day so you can feel your best and have the most energy possible! The better you stick to your doctor’ set suggestion for how much you should drink for your personal body, the more “spoons,” or energy, you will have, and therefor the more fun you can enjoy that day.

Plan your fluid intake for the day

When I first was diagnosed with POTS, I found it hard to keep track of my water intake and drink enough throughout the day because I wasn’t used to drinking all that much fluid. I had to train my body to get used to drinking more. In order to make keeping track of how much I was drinking less difficult, and to make sure I achieved my goal of 64 ounces each day, I started setting out all the fluids I was going to drink that day (for me, this means primarily water, lemon water, and Pedialyte) ahead of time each morning.

I have now been using this simple trick for two years. I almost always meet my water intake and I feel so much better for it! On days when I go out and forget to bring along some drinks from my daily “dose,” I start to slow down and feel dizzy. Of course when I feel this way, I know I need to drink fluids and I can swing in to a store to buy a water, but I have already let my body hit a low and need to rest for a while before getting back up. I much prefer just staying on top of my fluids so I don’t have to feel that lousy energy dip at all. It really helps me keep going throughout the day.

4.    Eat 6 small meals a day: It’s great for your metabolism AND it’s great for POTS. Here’s the deal; after you eat, your blood gets redirected to the stomach to help your body digest the meal. We Potsies want as much blood as possible pumping through our body, especially to our head, as we can get. Therefor, we do not want our digestive track working overtime, or any harder or longer than it needs to, and stealing that blood flow! This does not mean under-eat, it just means eat less at one time and spread your meals out into 6 meals per day.

By adhering to the six small meals rule, you will find yourself having much more energy throughout the day. Rather than slowing down and needing to rest for a long time after a meal, you will be able to get moving again and feel more energized by what is actually the right number of calories (because, shocker I know, Americans usually eat much bigger portions than we really need to ;P). Eating smaller meals more often also allows you to provide your body with doses of salt more frequently throughout the day in your food.

5.    Set aside 30 minutes for your pedal exerciser every day. (Please ignore this step if your form of POTS or another illness guides your exercise away from using a pedal exerciser. Every Potsie is unique and powerful in her own way and can build her strength through another form of physical therapy than the bike. The goal is to keep your body and your heart as healthy as they can be!)

A pedal exerciser is basically just two little bike peddles on a tiny machine, but oh, how it’s so much more! The reason the pedal exerciser works so well in helping POTS patients improve their activity level, and eventually improve POTS symptoms all together, is that by doing cardio lying down, your heart learns to pump stronger and harder rather than faster. Remember, your heart is a muscle, and you can work it out and make it stronger like any other muscle in the body.In people with POTS, each time you stand up, your heart starts racing to pump the blood fast enough through your body in order to compensate for the drop in blood pressure. It is so busy racing and essentially having its own little “panic,” that you are too worn out before you get the chance to push your heart enough to where it has to pump stronger. Only once your heart is challenged to pump with more strength do you start building up the muscle to improve the strength at which it actually pumps the blood.

Here’s the kicker. If you can work your heart muscle out (through cardio) so that the muscle gains enough strength to pump your blood harder through your system, your blood pressure will improve, and, in turn, your blood and oxygen flow to the heart will improve. Essentially, if your blood pressure increases enough, you can reduce, if not eventually put an end, to the symptoms of POTS. In other words, you could put POTS in complete remission.

Following?

Okay, so now we know we need to strengthen the heart muscle before we can reduce, and eventually get rid of, our POTS symptoms enough to participate in activities and workouts standing up. But how can we do that if cardio always requires standing or sitting up? TA-DA! You probably connected the dots long before I did, but just in case anyone needs it spelled out like me, here it is. A BIKE PEDDLER that you can peddle lying down. Cardio lying down. Boom, your doctor drops the mike.

The bike peddler was something I honestly did not take that seriously when my doctor first suggested it, ironic as it is the treatment that may have been the most life-changing of all. I had spent high school and part of college running 3 miles each morning and I was always very active, so when my POTS hit I did not understand how I could be so deconditioned. I saw the bike and thought, that’s not a workout, that’s just silly. But I was very wrong.

 For the first few months of recovery after diagnosis (I call it “recovery” because it was the year-long period in which I got my body reconditioned, since I was finally on the meds and treatment plan needed to safely get moving again), I attempted to use long walks with my boyfriend and friends to ease me back into exercise. I then attempted to move up to things like tennis and short jogs. I found myself continually dizzy, weak, and unable to accomplish these sports without losing the next three days to bed rest afterwards. I was frustrated, and eventually even defeated, because I wasn’t improving at all.

One day my boyfriend suggested, as he had many times during this phase of denial I was going through about how de-conditioned I really was, that I ought to try the peddler bike. I finally caved, turned on an episode of The Middle to watch during the boring task ahead, lied down on my yoga mat—which hadn’t actually been used for yoga in over a year, and started peddling. The first few minutes were easy, but by minute ten my heart was really pumping. It was tough, and a great workout. Much to my surprise, after the first week of doing this, I found that my ability to walk up the stairs to my apartment was much improved. By week 3, I was walking through the mall without panting or sweating. 2 months in, I was playing tennis full-on again and 6 months in I was slowly working out with a personal trainer!

Today, two years after diagnosis, I do weight training and short cardio intervals with a personal trainer twice a week and I hike or walk with friends three days a week. My trainer and I are working on pushing my cardio further, and I’ve just started jogging this month with one of my best friends who struggles with a knee injury. It’s been a lot of fun working together to push ourselves a bit further each week. Everything I can do now, I owe greatly to that bike peddler sitting in the living room corner next to my couch.  I still use the peddler lying down once a week, or on days when I have autoimmune-related flare-ups and can’t work out, and I am always challenging myself to push the resistance level up a bit further and peddle a bit faster This keeps my heart remembering to try and pump stronger rather than faster when I exercise standing up.

6.    Salt, Salt, and more salt. If you don’t like salt, learn the value of Butternut Squash French Fries.

JOKES.

But seriously, try to add a little more salt each day and build up to enough salt in your meals. I did not grow up with a salt-shaker on the table. In fact, with a Grandfather that had raced his way to a triple by-pass by 45, my family treated salt like satin’s fairy dust. Thus, it took some time getting used to the taste once I was diagnosed. It took even more time not to be innately afraid of it. I somehow equated a teaspoon of salt with gaining 20 pounds and having a heart attack. But the reality is, lots of salt is only bad for you if your blood pressure starts at a normal rate because it increases blood pressure. BUT, if your blood pressure is low, plenty of salt is actually good for you, helping to increase your blood pressure to a more normal rate. (That being said, always ask your doctor what the right salt intake is for you, because there is such thing as too much of any good thing.) A trick I use for making sure I get enough salt in my diet is leaving a ¼ tsp. measuring spoon inside my beloved bag of Sea Salt so that I always make sure to add a ¼ tsp. scoop to meals.

If you really hate adding salt to meals, or if you find your blood pressure dropping too much between meals and you don’t want to increase how often you are eating, a great trick is Sodium Chloride tablets. That’s a fancy name for salt in little measured out cubes or circles. But they are very handy in that form. I always carry around a bottle of Sodium Chloride tablets in my purse for emergencies when I can’t get access to food and my blood pressure drops too low.

7.    Invest in compression tights you really love to wear. When I found out I had to wear compression stockings every day, I was pissed. 22 years old, moving at the speed of a grandma, and now I have to look like one too?! Then I discovered the beauty of active-wear. If you haven’t seen the video, indulge below:

Amazing. Okay back to the discussion at hand.

The point is, active-wear is super in. Maybe a little too in, but that’s great for us Potsie-gals! We not only look on trend in our compression leggings, but we also look productive and healthy. And let’s face it, its nice to finally look like the healthy, active one at the grocery store. Oh yeah, I worked out today (lying down on my bike peddler) What did YOU do? Take that productive go-getter sorority girl buying VOSS water! P.S. Thank you GiGi Hadid and Kendall Jenner in particular for making compression work out leggings the hottest trend in the last two years.

Below are some of my favorite on-trend compression legging looks at the moment!

                           

For days (or nights) when you want look more dressed up, in come the compression tights. But they are super cute now too! You can get all kinds of edgy designs in your tights. Plus, high wasted shorts and skirts are so in and they look adorable with tights. I really love throwing a pair of ripped, high waisted Levis on over a pair of compression tights. Throw on a white tank and tie a flannel around your waist. Now pick out your favorite pair of ankle boots and BAM you are one hot edgy girl ready to take on a music festival or a college party. (sorry, that one may have been more for my younger Potsie-gals.) But a pair of black compression tights and a cocktail dress, and you’ll be running the wine bars and lounged too, or even that wedding where your ex-boyfriend is taking some — girl :D.

Rejuva Health is my favorite place to shop for trendy compression tights! My current favorites are THESE super cute floral tights.

Invest in compression tights

8.    Always plan (and pack) ahead. I’m sure all of you Potsie-gals are familiar with the stress of running late to an event and having to choose between making it on time, taking all your meds, and eating properly before-hand. I’ve spent many a morning frazzled, trying to open six medicine bottles at once and count all my meds out for the day before running out the door with a spilling protein shake in one hand and a high heel in the other. Avoid the chaos as best you can and ensure that you have the best day possible by planning ahead the night before.

If you know you have a big event, day trip, or even just a tight schedule ahead, make time the night before to pack all the medications you will need for the day, even your morning medications, that way you have a little extra time in the morning to spend with that eye-lash curler instead of counting out your Midodrine tablets.

Plan to bring a well-sized purse or backpack, and pack your medicines in a pill case along with salt tablets, Pedialyte packets, and/or other emergency snacks that work for you. Make sure to include a water bottle or sports drink as well. This especially helps if you forget to drink a glass of electrolyte fluids when you wake up that day because you are too busy picking out an outfit [four times].

Consider preparing your breakfast the night before, or plan to eat left-overs you already have prepared, that way you will be able to eat no matter what, even if that just means shoving breakfast into your pie-hole while you run down the stairs. Do whatever you need to do to ensure that your health will be taken care of the next day without hindering your fun — or your birth-right as a woman to take 50 minutes to choose a black dress and run out the door 15 minutes late. While it stinks when you have to stay up a bit late the night before to pack, its totally worth the extra minutes you feel like you’re getting to sleep in that morning.

9.    Life is not a race, it’s a marathon. Take breaks and pace yourself.

KKP_1975

Each day individually is also about the marathon. You will last longer and have more spoons to do the things you want to get done if you slow down a bit and take a ten minute break to sit down or lie down and rest every now and then.

Taking short breaks every two or three hours prevents you from crashing mid-day or mid-event and having to go home early or miss out on things you wanted to do.

I absolutely love a big day trip to Disneyland, but I always make sure to take a ten-minute break, or even 20 or 30 minutes if I need it, to sit down, relax, and have a nice big drink of water. This is how I am ableto go to Disneyland for a full day now. If I get too excited or don’t want to miss a ride and therefor don’t pace myself and make time for breaks, I always burn myself out way earlier and have to miss out on much more than a few minutes here and there.

If you want to go from a full day of work to an evening event, build in an hour of down time between the two to eat a meal and lie down. Never skip taking your meds on time, drinking enough water or getting enough salt/food, because you are trying not to interrupt the fun or work. Always excuse yourself and just explain that in order to be at your best for the people around you, you must take a moment to take care of your body. You WILL get very far and achieve anything you want to in a day or in life if you pace yourself and take breaks.

10. Rinse and repeat! The Potsie Club is not an easy club to be in. You have to work hard for that membership. I mean Mornings. Are. Tough. Every night you must (try) to take a bath or body shower (skip the hair if you aren’t up for it) and wash off both the germs and any negative moments from the day. Hold on to only the beautiful moments. Ask yourself in the shower each night, what was one good moment I had today? Did I chat with a friend and make them feel better? Did I spend some time watching a movie with a loved one or letting them know I care? Did I write for a blog or in a Facebook group supporting a fellow Spoonie? Did I simply take the day to rest and heal up so I could give something my all tomorrow? If the answer is yes, then you have had a successful day.

Maya Angelou Quote

Be patient with yourself, for every step you take to move forward, every minute you spend pushing yourself on that bike peddler, every time you take that nightly shower, you are succeeding and you will improve your quality of life. I know because when I started out, I struggled greatly with just getting out of bed, let alone showering more than twice a week. I thought I would never get better, but day by day I improved, and eventually I found myself taking greater steps each day, improving exponentially if you will. Pushing myself further each day got a little easier. Even now I still have my bad days, or weeks. I get flare-ups of my other illnesses that trigger my POTS to act up. But each night I rinse off the day and wake up the next morning to try again.

With great love,

Jessica Kendall James

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