POTS and Vision {How I Make Tiny Adjustments to Live With POTS}

Tags

Health, POTS

I was talking to my parents a few weeks ago about how most everyone in my life has no idea about all the tiny things I have to do each day to manage my POTS symptoms. To be honest, I haven’t even shared much with them. However, I was talking about the issue with my vision in regards to POTS, and they were really surprised I do this one thing every day to help deal with my symptoms. I thought I’d share here too:

As I’ve said before, with POTS I get really dizzy upon standing up, sometimes almost to the point of passing out (when I first got diagnosed, before I was on my beta-blocker, I actually did pass out a few times). With dizziness and passing out comes loss of vision. I’m sure many of you reading this who don’t have POTS have experienced some loss of vision (or at least seeing black dots) when you stand up. This is a similar experience to POTS, except with POTS it can be much worse. There are times where my world is completely black for 15-20 seconds or more, and at first this was really scary and overwhelming for me to deal with.

When I stand up, sometimes I’m completely fine, but other times I lose complete vision. At this point I have two choices- stand in one place until my vision comes back, or continue to walk forward and wait for it to come back that way. When I stand up in my office with clients, I can’t very well stand in one place, so the walking to the door option is what I take. So this is how I’ve learned to manage it- before I stand up, I look at my surroundings. If it’s in my living room or office, I know how many steps I need to take to get different places. I look for things I might have put on the ground (shoes, books, etc…) so I can avoid them.

When I stand up and my vision goes, I can continue to walk forward despite the fact that all I can see is black. I don’t think my clients have ever noticed that at times I can’t see them start to leave my office. Usually by the time I get to the door and start to open it my vision is back, and I smile as they are on their way. As I said, this certainly doesn’t happen every time I stand up, but does definitely happen from time to time.

That’s the thing when it comes to any long term diagnosis or illness- it’s about normalizing what is going on within us and then learning to manage it as best as we can. This is something I’ve done so much that I don’t even think about it much anymore, which is nice. But when we have to do these little things to manage our illnesses, it takes energy. If you’re a friend or family member with someone with an illness, have a little extra patience with them. It’s likely that they are constantly using energy to manage themselves in small ways so they can remain functional and live a full life!

I wanted to share this for a few reasons- First of all, no one told me that this brief vision loss was part of POTS, and it freaked me out at first. I hope that this might serve to encourage some of you who have POTS. Secondly, this is meant to give a little insight to family and friends about what your loved one deals with on a regular basis (in multiple ways- it may not even include vision loss).

For other posts in my POTS series, click here.

* I am not a doctor, and these posts should not be taken as expert medical advice. I’m simply someone who has lived many years with POTS and has found resources around the internet that help to explain this syndrome. I’m just sharing my personal story. Please contact a doctor if you have questions about POTS or think you might have it. 

Indianapolis Women’s Half Marathon 2014 Race Recap

Tags

2014 Challenge, Exercise, Friends, Half Marathon, POTS, Race, Racing, Running

“In running, it doesn’t matter whether you come in first, in the middle of the pack, or last. You can say, ‘I have finished.’ There is a lot of satisfaction in that.”- Fred Lebow, New York City Marathon Co-founder

On Saturday afternoon, Melissa and I were at the pool, and she (I think it was her anyways and not me- haha) mentioned that she had no idea how to really recap this race, and I immediately agreed. This was by far the most strange half marathon I’ve ever run, and it seriously can’t be compared to any other half marathon that I’ve run so far (this was half marathon #6). This was a totally different game, and one that I said on Wednesday last week might be totally different due to weather.

My alarm went off at 5, and I checked the weather (humidity at 94%-ugh), and ate my traditional pre-race meal: 12 ounces orange juice, 1 luna bar, and 1 medium sized banana. I got ready quickly and warmed up. Melissa accidently turned her alarm off, so I finally woke her up at 5:45 (we were planning to leave right around 6). She had gotten sick in the middle of the night- a great sign of the day to come. We hit the road and got to the corrals about 15 minutes before the start. We warmed up quickly and jumped in the corrals ready to go. Race start temperature was about 60 degrees with 92% humidity, but we knew the temperature was going to shoot up quickly. I took a salt packet about 30 minutes before the race, hoping that would help any cramping issues.

I need to mention again here that, because I have POTS, exercising in the heat is pretty difficult. I can’t cool myself appropriately, so anything over about 50-55 degrees is really warm for me. Going in I knew this was going to be the case, and Melissa and I decided that it was better to be safe than to put ourselves in a dangerous situation (she also doesn’t do well in the heat). Safety was the name of our game.

At the starting line

The first 5 miles flew by pretty quickly, and the temperature felt ok for us too. We started off doing a 2:1 run:walk ratio, and we decided to keep our pace equivalent to training runs until we felt like it wasn’t safe anymore. The first 5 miles we hit in the 11-11:25 range, and that felt awesome. At that point the sun had really come out strong and the temperature was rising. Melissa wasn’t feeling great, and somewhere in the 5-6 mile range my heart rate got out of control fast. We both walked for a good chunk of that mile- remember our motto? Safety first.

We hit the half way point and I was hurting from walking so quickly. When we walked, we were keeping about a 14:40 pace, which is far faster pace than I normally walk at. My right arch was hurting and my left piriformis was unhappy. I remember taking inventory of myself, looking at Melissa, and wondering how we were going to make it through the rest of the race. Running felt better than walking at this point, even though running wasn’t good for me.

At mile 7 we hit a water station and there was no line at the port-a-potty. SCORE! I hopped in and went quickly- a first for me at any race. It was worth it though (one thing I will say is that I feel like I was hydrating well throughout the race. I drank water and powerade at every station the first half, and also carried gatorade in my handheld water bottle). Melissa told me to run ahead and she’d catch up, so I grabbed the powerade at the station and walked along, eating my race fuel (cran-razz shot bloks. I also had margarita shot bloks at mile 3.8 and 10ish). I also took half a salt packet at mile 7, not because I was cramping, but because I was sweating and losing so much salt, and didn’t want to cramp at the end.

Right after mile 7 was a huge hill, and I definitely walked up it. Melissa caught up at the top, and told me that she threw up again. I felt so bad for her, and even though she told me to run ahead, I refused. We signed up together, and we were going to run it together! And honestly, I didn’t know how I was going to make it through the 2nd half without her next to me anyways.

Honestly, those last miles went by in a blur, and I felt like they went by pretty quickly too. We walked a lot, and ran as we could. Neither of us felt fantastic. The second half of the course I only took powerade at the stations because the water was too warm to be refreshing at all, and I couldn’t stomach the thought of it. Right around mile 9 I looked as far ahead of me and behind me as I could, and every single person I saw was walking. That’s when I realized how tough this weather really was.

Somewhere around mile 9 we set a goal for ourselves- we would come in before my slowest half marathon time (set at my first half marathon at the Indy mini), and that pushed us to run just a bit more. Right about mile 12 I suddenly started to shiver a bit, and said “Oh my gosh Melissa, I’m getting goose bumps.” At this point it was still high humidity about almost 77 degrees, and I shouldn’t have been shivering at all, so this was clearly a sign that my body wasn’t doing well. Honestly, if I had more than a mile left I would’ve been pretty concerned, but I felt ok continuing on, knowing that it would all be over in about 10 minutes.

Right around mile 12.5 we ran past some of Melissa’s co-workers who brought out ice cold water bottles for us. I handed off my hand held, and it felt absolutely amazing to hold something that was so cold. Once we saw the finish line Melissa told me to run ahead so I could make sure that I was under my slowest time. I ended up crossing the finish line about 20 seconds before her, but both of us ended with a time of 2:55. It’s certainly a far cry from my half marathon PR, but as I said, this race can’t even be compared to my other races.

I felt more emotional crossing that finish line than in any finish except for first half marathon- I guess because my body felt pretty off at that point. Men who were in the military were passing out the medals, and we also got roses (along with the standard banana, nuts, water, etc…).

Melissa and I took a few pictures, and then headed back to stretch.

Honestly- I wasn’t at all disappointed in our time. This race was really tough for both of us, and in many ways I had to push myself much more than in other races. I ran a relatively safe race with POTS (minus when my body started to hit heat exhaustion), and was able to finish strong in that last mile. I had fun for a good portion of the race, and this race was another example of proving that I am stronger than I thought I was, and my diagnosis doesn’t have to hold me back completely. I think that long distance summer races are just something that I can’t really do because of POTS, and that’s ok. Honestly, looking at the big picture, the time doesn’t matter to me. Me pushing myself, being safe, growing, learning, and just being able to run is what’s most important. I’m so thankful that I can run, even in the tough, hot, and disgusting races. I’m thankful for this race, safety in running, and for the lessons learned through it.

Overall the race was organized well. The course was fine- nothing special. There were plenty of aid stations with water and powerade. I wish the water had been kept cooler, as it was just gross and not refreshing the 2nd half of the race. The volunteers were really encouraging, but there was minimal spectators cheering on the side of the road.

I’m interested to see how I view this race in a few months, but right now I’m not disappointed at all. Despite having to drop our pace, we didn’t quit, and that was huge for us. More on the expo and post race fun later this week!

Check out Melissa’s recap of the race too!

For more information on POTS, click here. For other race recaps, click here. To see how this race compares to the Monumental Half Marathon, the Indianapolis Mini Marathon, and the Carmel Half Marathon, click here. For more information on my Bioskin calf sleeves, click here. 

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Looking for more ways to connect?

• Connect on twitter @kalolainastar
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What POTS Taught Me About Comparison

Tags

Mental Health, POTS

Ah, the comparison trap. It seems like the need to compare ourselves to others is ingrained in us when we’re young, and it becomes an automatic (and often unhealthy and toxic) part of our thought patterns. I guess it’s part of being human.

I, being human, have often found myself inclined to compare myself to others. It used to be far stronger than it is now, in part due to POTS. With POTS, life can be somewhat unpredictable, and it certainly makes daily living things a bit more difficult. The fatigue, sick feelings, and the body pain that come with POTS can make life really difficult to live at times, and certainly can change daily functioning up quite a bit.

I did an entire post on how POTS changed how I exercised and how I had to start up exercise again, but one thing I didn’t talk about is how that plays into the comparison trap. The thing is, I can compare myself all the time to others around me, but with POTS I play with a different hand of cards (of course we each have things that make life just a little more difficult for us).

This came to a head with running. No matter what I do, I cannot run consistently with miles in the 8 and 9 minute range. It doesn’t matter how much I compare myself to them, beat myself up, or try to train to get to that point, I can’t because it’s not safe due to the beta blocker that I’m on.

I can’t even really compare myself to myself (although I sure do!). Some days the POTS symptoms feel fairly manageable and minimal, and some days they feel out of control. There are some days that keeping an 11:15 pace while running feels just fine, and there are other days that keeping a 12:30 pace feels overwhelmingly difficult.

POTS has taught me that there are things in life that pop up that just make life difficult, and to beat myself up because of those things I cannot control is absolutely ridiculous. Maybe your thing isn’t POTS, but I bet that you’re busy comparing yourself to others or yourself. The thing is- it isn’t fair to do to yourself because we don’t enter in to the same thing with the exact same deck of cards.

POTS has taught me to be gracious to myself and to others in terms of my judgments and comparisons… I guess that’s one of the good things that’s come out of this decade long journey…. The comparison trap is ugly and certainly doesn’t help us out in our own personal growth, and every bit of it that we can let go is going to be beneficial to us. I push myself as I can, but I’ve also learned to treat myself with kindness and grace.

Now it’s your turn to share! Do you struggle with comparing yourself to others? 

How I Started Working Out with POTS

Tags

Exercise, Health, POTS, Running

This is another post in my series on Postural Orthostatic Tachycardia Syndrome.

Working out with POTS is interesting, and is completely different than exercising without it. Exercise is a critical component of the treatment of POTS, but while we’re asked to exercise, it’s pretty much the last thing that our bodies actually want to do. People with POTS are often labeled as “exercise intolerant”, as it’s difficult for the body to handle the stress that occurs when the body exercises. Exercise is helpful as it strengthens the leg muscles, a crucial aspect of treating pots. However, exercise also exacerbates symptoms afterwards, at least for a day or two.

So, you can see the problem. With POTS, it’s the best thing for you and the thing that is the most difficult to do. I wrote an entire post on “how POTS changed my exercise“, and that will give you some information about what changed for me. Picture someone with a resting heart rate of 120, dizzy regularly throughout the day, loses vision almost every time she stands up being told she needs to start working out. Crazy, right?

Starting to work out was a LONG and SLOW process for me, and one that I would never embark without talking to a physician. Here are some of the steps that I took in working out with pots:

1. TALK TO YOUR DOCTOR. Never start an exercise regimen without talking to your doctor first if you have POTS. With POTS there are so many variables that we have to do with, and it’s important to have a doctor be a part of your journey.
2. I got on a Beta Blocker. With my resting heart rate at 120, I could hardly start to move much without getting dizzy, with my heart pounding, and being very short of breath. Getting on a beta blocker allowed my resting heart rate to go down to about 80 beats a minute, which gave me a wider gap in which to workout in. However, a beta blocker also means that it’s not safe for me to run much faster than a 10:00 minute mile, so it comes with some constraints.
3. Start to walk… slowly. Over the course of about 4 months I started to walk more frequently and with more intensity. I picked up my pace through more days until I was walking around 20 miles a week (and felt good through most of them). This took some patience, lots of hours with friends laughing and talking, and a nutrition plan.
4. With POTS you need more salt and water than the average person, and it took a bit of time for me to figure out how that looked for me personally. I realized what I needed to do not only the day that I worked out, but also the day before I worked out.
5. I went on my first run, and collapsed in a yard close to passing out at mile 0.75. You can read all about that run here. It would’ve been really easy to quit here, but I was determined.
6. I came up with a new running plan, and started to do a “run/walk” pattern, slowly increasing my amount of run time and decreasing the amount of walk time. I started running for abut 20 seconds at a time, and then increased to 30-40 seconds, and kept increasing from there. You can read all about that progress here.
7. I found ways to cross train that would strengthen other leg muscles. Biking, swimming, and pilates were all part of this strategy.
8. There are things that I avoid. Running in the heat almost never turns out well, and if I do it, I very much limit my time/miles. Also- STAY AWAY FROM HOT YOGA. Or, as my doctor said “RUN AS FAR AWAY FROM HOT YOGA AS YOU CAN. IT’S TOO DANGEROUS FOR YOU.” Since heat further exacerbates symptoms of POTS, hot yoga can become too dangerous far too quickly for someone with POTS. If you do yoga, stick to normal temperatures.
9. I came up with a permanent walk run strategy by using the Galloway Method. Because I consistently walk for 1 minute after running for 3 minutes, I had a chance to regularly bring my heart rate down. This become highly important as I started racing, particularly during my half marathons.
10. BE PATIENT! Some days POTS symptoms are overwhelming, some days they are more manageable. Some days might be ideal schedule or weather wise to work out, but your body might just not be ale to do it that day; that’s ok- be patient. Build your strength slowly, and don’t try to push too hard or too fast. Building up a good base without POTS can be tough, but building it up with POTS takes far more work. Be patient with yourself.

Like I said above, this is just what I did. Everyone’s journey to working out while managing POTS looks different. The best you can do is avoid comparison, be patient with yourself, and move slowly as you start gradually exercising. Be smart, be wise, and enjoy what you can do!

Disclaimer: I am not a doctor, and this post shouldn’t be taken as advice on what you should do. I am simply sharing what I personally did as I started to work out after my POTS diagnosis. Always consult a doctor before beginning a workout regime. 

My Journey To Running {Part 3}

Tags

Behavior Change, POTS, Running

In January I wrote Part 1 of my journey and in April I wrote Part 2 (all about my first run in 2010), so I figured it was about time for the next part of my journey. If you’ve missed either of the past posts, click above to catch up first!

When I left off I had just written the following words: “I’m glad I didn’t give up after that first .75 of a mile. Getting to a place where I could run was a long process…” So after almost passing out on that first .75 mile run, how did I get to a place where I could manage to run? Well, I knew very little about running, but I knew there was a “thing” where you could walk and run and slowly build up to being able to run the distance that you wanted. So, that’s pretty much what I did.

Starting in February of 2011 I would go out once every week or two for something I called the “run-walk”. I would walk for a couple minutes and then run for 30-40 seconds before walking again. Over the next four months I continued at that pace and decided that I might actually be interested in this whole “running thing”. In June of 2011 I was at my parents gym (their running track is small and 9 laps equals a mile), and I completed 4 miles with every other lap either running or walking (so I ran 1/9 of a mile at a time followed by 1/9 of a mile walk). That was the moment that I really, truly believed that I could actually run, and that maybe I would actually really enjoy it.

The thing is, in order to get myself to a place where I felt like I could run, I had to let go of the desire for the immediate success as well as comparison to other people. I spent MONTHS running very short amounts of time in between periods of walking (remember, POTS was a contributing factor to my slow base building), so I had to give up the idea of immediate gratification in order to achieve what I actually wanted. Also, comparing myself to others who were running would’ve seriously gotten me down on myself and probably would’ve quit before I ever hit that day in June.

If you want to become a runner but don’t think you’ll be able to do it, start slowly like I did and keep your eyes focused on the goal instead of on others. Do the “run walks” or search out the couch to 5k program.

For me, my journey to running started with one failed run and months of slowly, slowly building up the length of my running segments. It’s not really the dream when it comes to running, is it? But without that I don’t think I would’ve ever actually become a runner. But of course this isn’t the end of the story either, and that’s for a different day.

My encouragement to you, whether running, another form of exercise, or some other areas in life, is to not need the instant success or gratification, but keep your eyes focused on the goal that you want, be willing to put in the hard work to get you there, and avoid the comparison trap!

Now it’s your turn to share! Have you ever given up on something that you wanted because it wasn’t immediately easy for you? 

My Journey To Running {Part 2}

Tags

Behavior Change, POTS, Running

Back in January I shared part 1 of my journey to running. I ended the post with saying “and then November of 2003 hit…” In November of 2003 I got a cold that turned into a sinus infection, which, in February of 2004 turned into postural orthostatic tachycardia syndrome. My journey to running post is followed by this post about how my pots journey began. Of course, POTS changed my exercise pattern, and I suddenly had to become fairly inactive. I ended that post with “POTS won out for many years… that is, until 2010…”. And that’s where we find ourselves as I start this post.

In September of 2010 I started walking with my friend, and slowly built up exercise tolerance through adding miles that way. In October of that year I joined twitter, and through that I found all sorts of blogs online. At that point I had no intention of running, but I read recap after recap of training runs and races. I guess that the idea of running stuck in my head, because one night in December of 2010 I had a dream that I was running. I was at the old track by my house growing up, and I was sprinting down the track. It felt good and I felt free. When I woke up I knew that I needed to run. I wanted to feel the way that I did in my dream.

And so, on a cool morning in December, I tied my 4 year old tennis shoes, put on bulky sweatpants and a fleece jacket, and set out for my first run in years. It felt great the first .3 miles, but then it started to get a bit tough. By about .6 of a mile I was really struggling to breathe, and by .75 of a mile I started to lose my vision and knew I was about to pass out. So, I collapsed in someone’s front yard. I was nauseated, had lost my vision, and my hearing was going too. Not my finest moment, at all.

This picture was just taken a few days ago- obviously not in December!

So, I sat here, leaning against this tree for about 15 minutes until I gathered enough strength to walk home. First run Fail. I talked to my brother on the phone and complained about my failure. He reminded me that I had POTS and needed to work up very slowly, but that I could still have that feeling if I wanted to. He has been an encouragement since day one, and has also given me the entry into the Indy Mini both this year and last year.

Well, obviously this run was not my last run; I heeded the advice of my brother. But that’s a different post for a different day. On every run I do I run past that spot. No matter how much of a struggle my run is, I see that spot and it marks my progress. A few days ago I stood to take the picture above, and being just a little more than a week out from my 3rd half marathon, I’m glad I didn’t give up after that first .75 of a mile. Getting to a place where I could run was a long process…

Now it’s your turn to share! What’s something you wanted to give up on but kept at it and found out you enjoyed it? Do you have a place or a thing you see that marks the progress you’ve made? 

How POTS Changed My Exercise

Tags

Mental Health, POTS

I think this post might only make sense if you’ve been reading for awhile and had a little background information. To make it easy, here are the critical posts:

• My Journey to Running {Part 1}
• POTS- An Introduction
• POTS- The beginning of my journey (and what caused it?)

To summarize, I was always a very active person. I played outside all year round, ice skated for 4 years, danced for 12 years, and played soccer and basketball. My entire family was and still is active. But then POTS hit in late January or early February of 2004. I started passing out and getting very dizzy upon standing (you can read why that happens here), and the constant nausea and migraines didn’t help. Needless to say, my work outs all but completely stopped. There was very little activity. I was worn out, exhausted, and there were days I could hardly do what I needed to. Gone were the days of me being active; the couch is where I found myself most of the time.

Especially those first months when I hadn’t found the diet and medications I needed to function well, exercising was impossible, and any activity was difficult. When you’re resting heart rate is already 120+, even walking up the stairs is a solid work out!

For years I “worked out” by going slowly on the elliptical or going on slow walks with friends. POTS won out for many years… that is, until 2010…

Coming next- how to exercise with POTS-

Now it’s your turn to share! Has something knocked you out such that you couldn’t be active even when you wanted to be? Is there anything specific you’d like to know about POTS? 

POTS- What Caused It? The beginning of my journey…

Tags

Health, POTS

This post is part of a series on postural orthostatic tachycardia syndrome, and how this affects my journey to running. For my previous post introducing pots, click here.

What Causes POTS? 

From my understanding, the simple answer is that it isn’t completely clear, although a few means have been identified. “Viruses are thought to be the provoking factor in approximately 50% of POTS patients (Low & Schondorf, 1997, p. 279)” (source).

“Those at greater risk of the disorder are high-achieving teenagers or adolescents as they enter a growth spurt… The disorder is also more likely to occur in people who are very flexible or double-jointed and those with other affected family members. But even though some people may be genetically predisposed to developing POTS, Dr. Fischer said in an interview that an environmental insult seems to trigger its onset — an illness like mononucleosis, flu or a bad cold; an injury; major surgery or trauma; or even weight loss. Dr. Fischer said prolonged bed rest often precedes the condition” (source).

How my POTS journey began:

Over Thanksgiving break in 2003 I got a cold, which turned into a sinus infection. This was a particularly nasty sinus infection, and it took three months of lots of different medications before I got over it. Unfortunately, that was enough to get POTS. By the end of January I was feeling really sick, and by the beginning of February I felt a stabbing pain (like someone was jabbing a knife into my stomach) each time I ate, and I had a really bad migraine. I immediately found a neurologist who was able to find a good mix of medications to help deal with the migraine so I could function again. However, even on days I didn’t have a migraine, I still had a headache (chronic daily headache). (And, in case you’re interested, that headache hasn’t gone away. Every single day for the last 9 years I have a had a headache or migraine in some varying level of intensity). While the neurologist was helpful in dealing with the migraine part of pots, it didn’t go any further than that. I spent the rest of my semester going to school 3 or 4 days a week, feeling really sick and pretty miserable. This continued throughout the summer, and by the fall I finally went to the doctor for the stomach pains that never stopped. In October of 2004 I was diagnosed with POTS through a tilt table test…

(to be continued…)

Disclaimer: I am not a doctor, and this post should not be taken as expert medical advice. I’m simply someone who has lived many years with POTS who has found resources around the internet that help to explain this syndrome. Please contact a doctor if you have questions about POTS or think you might have it. 

POTS- An Introduction

Tags

Health, POTS

POTS. Postural Orthostatic Tachycardia Syndrome. 

I struggle to know even where to start with this subject, which is why I haven’t really mentioned it in the months that this blog has existed.  I’ve mentioned pots a few times when it comes to exercising, but I’ve sort of danced around the subject. To be honest, most people in my life don’t even know that I have been diagnosed with POTS, or what this means for me. I’ve never wanted to be defined by this, and therefore have chosen to not speak about it.

At this point, I am ready to speak out. I want to raise awareness to this illness, both to help others who may be struggling with the same issue but haven’t been diagnosed and to aid in understanding for others.

Because this blog is about my journey of fitness and wellness, I would be remiss to pass by my daily struggle with POTS, as it is a huge part of my journey. I plan to share some basic information about POTS, but will primarily focus on my personal journey. Feel free to ask any questions along the way, and I will do my best to answer them.

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What is POTS?

Postural orthostatic tachycardia syndrome is an abnormal functioning of the Autonomic Nervous System (dysautonomia). The ANS is responsible for helping to keep many things regulated and working properly throughout our body. “The autonomic nervous system is responsible for regulating a multitude of organs and functions throughout the body. Some of these functions include temperature, respiration, pupil dilation and constriction, salivation and the digestive tract. A patient experiencing ANS dysregulation may experience abnormalities in the many organs and functions the ANS regulates” (source). Imagine every time you stand up your heart races and you feel dizzy; perhaps you even faint. That’s what happens with POTS.

“But a racing heart, dizziness and foggy brain are only three of many symptoms of POTS, which can include any or all of the following: fainting, extreme fatigue, headaches, stomach pains, nausea and vomiting, difficulty concentrating, weakness in the legs, unusual feelings of hot or cold, excessive sweating, blue or purple discoloration of the legs or feet and, perhaps as a result of all of the above, feelings of anxiety or depression.” (source)

Obviously these symptoms change the way the individual has to live his or her life, at least for awhile. Doing every day, simple tasks, can be quite difficult or exhausting. “The symptoms of POTS are life altering and debilitating at times. POTS patients use about three times more energy to stand than a healthy person (Grubb, 2002). It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms (Grubb, Kanjwal & Kosinski, 2006). Research shows that POTS patients’ quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease (Benrud-Larson, Dewar, Sandroni, Rummans, Haythornthwaite & Low, 2002) Twenty-five percent of people with POTS are disabled and unable to work (Goldstein, Robertson, Esler, Straus, & Eisenhofer, 2002). Most patients will have to make some lifestyle adjustments to cope with this disorder.” (source)

What are the symptoms of POTS?

There are a number of symptoms related to POTS. Please talk to your doctor if you are experiencing these symptoms. For a full list click here. Some of these symptoms include lightheadedness, fainting, palpitations, nausea, vomiting, feeling bloated or pain after eating, fatigue, migraines, etc… POTS sounds really lovely, doesn’t it?

Like I said, I have POTS. I do not let it define me, and I have refused to let it hold me back from doing anything I’ve wanted to do. But that doesn’t mean that it hasn’t been difficult, and that I haven’t had a little more to fight through. But that’s part of my story for another day, as it starts to mix with my journey to running.

Now it’s your turn to share! Have you ever heard of POTS before? Have you ever been diagnosed with something that has made exercising difficult? 

Disclaimer: I am not a doctor, and this post should not be taken as expert medical advice. I’m simply someone who has lived many years with POTS who has found resources around the internet that help to explain this syndrome. Please contact a doctor if you have questions about POTS or think you might have it. 

Indianapolis Monumental Half Marathon Recap

Tags

Half Marathon, POTS, Race, Racing, Running

You have to wonder at times what you’re doing out there. Over the years, I’ve given myself a thousand reasons to keep running, but it always comes back to where it started. It comes down to self-satisfaction and a sense of achievement

That quote by Steve Prefontaine nicely sums up my experience. I am brimming with self-satisfaction and a sense of achievement right now. SPOILER ALERT: I’m so proud of myself. But that’s getting ahead of the story. Let’s back up.

After falling asleep at 11 pm (SHOCK- especially for the night before a race), I woke up at 5:30 ready to run! I was obviously quite nervous about the race because of the IT band pain I’ve experienced over the last few weeks, but I was ready to fight it out! After my traditional race day breakfast (12 oz orange juice, 1 banana, 1 Luna Bar), I headed out from the hotel (Courtyard Inn on Senate Avenue, where I also stayed for the Indy Mini Marathon in May) to check in my gear. I headed into the Convention Center which was open to all runners (HEAT! FLUSH TOILETS!), where I warmed up and got ready to race. At about 7:50 we all ran to the start, and just after 8 am we were off!

Starting line- still setting up early this morning.

Sunrise as we were about to start.

This race didn’t have assigned corrals, and we were each allowed to pick which pace sign we wanted to stand by. I lined up somewhere between the 10:30 and 10:50 time, and hoped that I wouldn’t have to weave around people like I did during the Indy Mini. My race strategy was to run the way I trained: using the galloway method and running three minutes, walking one minute. I’m going to break this recap down by mile:

Mile 0-1: This mile went by pretty quickly and it was all about finding my rhythm in the race. The crowds were energetic this mile, so it was great to start off on a great foot! Right at mile 1 (I believe) we ran past Lucas Oil Stadium where the Colts play and the Super Bowl was held in 2012.

Mile 1-2: Uh oh- my fear happened and my IT bands started aching around 1.5. I mentally panicked a bit about having to go so many miles while being in pain. This is where I decided that I wouldn’t give myself any choice or option in the matter. It didn’t matter how much I ached, I wouldn’t give up. Not allowing myself to question this was really beneficial I think.

Mile 2-3: Somewhere along here we ran through Monument Circle. The sun was rising at this point, and the sunrise was beautiful. My pace was under 10 minutes a mile, which is definitely too fast for me. I tried to keep slowing myself down, but every time I thought I was inching along I’d check my pace and it would be somewhere between 8:30 and 9:30. It was a fight to slow down

Mile 3-4: I passed the 5k mark at 29:25, a full minute slower than my previous 5k PR. Even though this was part of a bigger race, does it count as a PR? I got pretty nervous here wondering if I’d crash later in the race. I saw a sign here that said “You actually paid money to do this??” and that made me laugh. Yes I did, and it was worth every penny.

Mile 4-5: Right at mile 4 I had to stop and stretch for the first time because my IT band was aching badly. I also ate 2 shot blocks around 4.75. Somewhere this mile I saw a sign that said “Someday your body won’t be able to do this. TODAY IS NOT THAT DAY.” This was definitely encouraging to me and I repeated it a few times throughout the race.

Mile 5-6: I finally took off my throw away sweatshirt at this point. I was definitely happy I hadn’t tossed it right at the start. We were running through neighborhoods at this point and lots of people were in their front yards cheering which was really great!

Mile 6-7: I hit the 6 mile mark and my average pace was right under 10 minute miles. I never even go that fast on short training runs, so I was pretty amazed that I was holding that pace, especially with my IT bands aching the way they were. At about 6.5 I had to jump off the road to stretch for the second time to stretch my IT bands.

Mile 7-8: We separated from the marathoners this mile so the crowd definitely thinned out a bit. Half way through this mile I ran past a yard that had a waist high wall in the front. I hopped off the road again and used it to help stretch for about a minute. It felt SO good and definitely helped quite a bit.

Mile 8-9: I took 2 more shot blocks here, and they continued to sit well in my stomach the entire race. The miles started dragging a bit here. At this point I hadn’t used music at all, and there were less crowds out cheering too. I was getting pretty achy.

Miles 9-10: Immediately at mile 9 I grabbed out my phone to text my family to let them know where I was. I was holding about a 10:30 pace at this point, which is still really fast. I was aching pretty badly and knew that I needed a distraction from my IT bands. I turned on my music at that point and decided to pull completely inside myself (as much as you can in a race) and dedicate each mile to a family member. This mile was for my parents who have been a huge support to me and have been so encouraging in my racing journey. They are always there to listen to my splits, thoughts on training runs, and my mom’s had to endure long phone conversations every day this week as I talked out my obsessive thoughts.

Mile 10-11: I definitely felt a surge of energy here as I thought “only a 5k left”. I wasn’t feeling tired or out of breath at all, which was great. I knew I could push through the pain the last 3 miles. I KNEW I was going to make it. This mile was for my brother (this one) who’s the real athlete in the family. He’s so encouraging and is always there when I have questions in the field of exercise science. During this mile I was passed by the first elite marathoner who was between mile 23 and 24 at this point. Humbling, that’s for sure.

Mile 11-12: I was feeling pretty great at this mile (minus a few calf cramps in my left leg), and the music was definitely helping to lift my spirits. The crowds got a bit thicker here which also helped with the energy. This mile was for my other brother (this one) who, after my first run 2 years ago that went terribly, encouraged me to not give up and to keep running. He’s a great cheerleader when I doubt myself, and encourages me endlessly. He’s in the military, and I’m just so very proud of my baby brother.

Mile 12-13.1: This mile was for ME. Having postural orthostatic tachycardia syndrome, the fact that I can go 13 miles at all is pretty amazing. I’ve struggled through 9 years of health issues, and I’m overwhelmed with thankfulness that I’m running at all. A montage of scenes played out in my head this mile as I thought of all the tests, trips to the ER, illnesses, and other things associated with this diagnosis that I’ve gone through. I was pretty emotional at this point, thinking of all that I’ve fought through to get to where I am today. It also sleeted for about half a mile, and I was glad to almost be at the finish. I kicked it that last .1 and was really happy to cross that finish line.

My outfit was perfect for the weather and SO comfortable!

I finished the race in 2:31, which is a 22 minute PR from my first half marathon, the Indy Mini in May. In 6 months I was able to shave 22 minutes off my time, and I know that without the IT band issues I could’ve gone even faster and hit under 2:30. I guess it gives me something to still fight towards:) Overall I really liked the course, things were organized really well, and it was pretty flat, which combined to create an awesome race! Despite the weather being in the mid 30’s, my outfit for the race was perfect, and I was comfortable the entire race!

On the drive home I stopped by to see my massage therapist friend who gave me a quick 10 minute massage! It was so nice but far too short- I’m achy! The rest of the drive home was really emotional. I kept playing the race over and over in my head, and there may have been some tears on and off. Tears of pride in what I had accomplished.

Like I said, having POTS adds a whole set of variables into running, and adds some difficulty into the sport. In part, I run to show that my diagnosis doesn’t have to define me, that I can fight through. I am so proud of myself for running the race I did today, and I’m definitely happy with my time! I fought through the pain and conquered my previous time and this course. I’m a half marathoner for a 2nd time. I’m content and so very thankful.