When I first got diagnosed with Pots, there really wasn’t any resources available at the time for me to understand what Pots was outside of what the doctor told me. I didn’t and still don’t know anyone else with my condition. I struggled to find my balance, and find a way to continue living the life I was living. I felt alone.
Thankfully, with time, the internet and the amount of information available, has grown to the point that you can now meet and talk with patients from all over the world who are going through the same thing as you. It has the ability to make you feel not quite so alone in the world. That someone, somewhere, understands. One thing I have learned, is that Pots really affects everyone different. What works for me, might not work for you. Everyone has different severities of pots, and also many have secondary ailments that factor in. I am in the process of looking into my secondary ailments, because I still struggle with some symptoms that just to fit it with Pots. In the pots world however, I found it helped a lot to find inspiration and ideas for easier ways of managing the illness. I would dive head first into the internet and watch people’s videos, and read blogs and try to see what they were doing. I also tried to find stories of cures, or fixes, or anything that I could cling to that would give me hope that this would change one day. However, I was met constantly with tales of teenagers who “outgrow” their pots. As much as I was happy for them, their stories didn’t apply to me. I was in my late 20’s when I was first diagnosed, although I do suspect I had it a bit earlier, but it never flared enough to warrant a notice from me. I had a lot of trouble finding people who were my age, and then in my thirties, and now at 40.
So what I want to tell you, is HELLO, my name is LINDSAY and I am 41 and I have POTS and still have POTS! We exist! For those of you who are just recently diagnosed or struggling to get it under control, my best advice is to do what works best for you, and only you. Listen to your doctors of course, and be your own advocate if you need to do other things. Here is what I do that I find works: (again, I am not a doctor, this is what works for me….follow your own doctors advice)
How to get out of bed
I always set my alarm for 2 hours before I get up….so typically I set it for 5am and I take my beta blocker and a low dose anxiety med…and chug a bunch of gatorade with them. These two meds help keep my heart rate down, and my adrenaline levels at a tolerable level to function. The gatorade helps me to replenish my lost fluids. I then go back to sleep. As many of you know, many pots patients suffer from hypovolemia ( low blood volume), so I have found that by giving my body a head start by 2 hours, by the time I swing my legs out of bed, my body is in a way better position to tolerate being upright. Upon waking, I drink the rest of my gatorade or about 500 mls of water before I even attempt getting out of bed. If I don’t, my legs and my heart rate ARE NOT HAPPY! This allows me to get up with my kids, and do what I need to do to get them and myself ready to start my day.
SEA SALT is my life
Throughout the day, I eat SALT SALT SALT. Everything has salt on it or in it. I also drink a min of 4 l of water and up depending on my level of activity that day. To drink this much water I have to balance it with electrolytes and most importantly salt. We potsies don’t hold onto salt very well, and pee most of it out. So its important to pump up our volume and help it stick with extra sodium in our bodies. I carry salt, and electrolyte tabs or gatorade around with me in a bag everywhere I go, so I can top up as needed. I also carry protein bars and salty snacks so that I can also fix any issues at a moments notice. I have big canteens of water x 2 on any trip in the car, and I carry back up meds as well if I need a top up on those too.
Body temperature regulation
I don’t tolerate heat very well, as for some reason, in the last few summers I stopped sweating and my body is consistently so cold that I don’t register on most thermometers, so I have to be very careful about temperature regulation. In the summer, I carry around cooling towels and ice packs, and in the winter I carry around hot packs and hot hand and feet warmers that I stick in my gloves and shoes. I have learned that heated blankets are my fav thing in the world when I am in a cold flare, and that my pool and AC is the best thing when I am hot and not tolerating heat. I travel with a bag of clothes. Warm clothes and cool clothes so that I can layer and change as needed. I limit my exposure to any temp extremes to minimize my flares. This is a tough thing to do with kids who want to be out all day long, but I do my best.
Finding my balance
It’s funny, my sign is “libra” which is the scales. I never gave it much thought until I started thinking about how my entire day revolves around balancing my body. Monitoring fluid in and out, salt in and out, heart rate all day every day, if its high….why? fix it….repeat . I live an eternal ground hog day, because after a successful day of maintaining my body in an upright standing position, it always resets itself when I sleep and I have to start all over and do it again. No relief.
I am allowed to play with my beta blocker doses, I have been on high and low doses, and I adjust as is necessary. I have tried other meds that retain fluid, or some people swear by for pots , but they didn’t work for me. Even my beta blocker, only one brand seems to work the way I need it to. Sometimes, you have to play around with things, to find out what your best options are.
I have been in the hospital a number of times to get extra fluid if I have events in my life prevent my body from getting them properly, so the biggest thing I monitor is my fluid in and not to over exert myself.
In the afternoon I top up with some more electrolytes and salt and make sure that I get off my feet if I can, even if just for a short time.
Saying no, and knowing what your limits are
I have learned that in order for me to be balanced, I have to say no to doing a lot of things in my life that I would love to do. I say no to activities outside of my exertion ratio, I say no to events out in the extreme heat or cold, I say no to things that will take me out of balance. I don’t ever drink more than a few sips of alcohol now because alcohol and pots just doesn’t work together, and I have learned to ask for help when I need it.
I pre-plan things around stairs or big hills now. Sounds silly, but stairs knock me out. Dancing fast, not a chance. So if something is outside of my ability…I say no. Learning to take an elevator with an invisible illness that is meant for people who can’t do stairs, was hard for me at first, because I felt like they viewed me as an imposter. I look fine, why is she in here…she must be lazy. I still struggle with the thought about what the others think of me in the elevator. But, I also know….its time to take care of what my needs are.
I have struggled to come to terms with this illness, but I do know that from my days as a paramedic that it could be a lot worse, and many struggle with much much worse forms of pots too. So I am lucky . And for every day I can successfully manage my day, and be productive and present with my family, job, life….then I am doing pretty good. ITs ok to find a new way to enjoy activities . ITs ok to say no. ITs ok to look for a new way to have fun because the old way just doesn’t work anymore. ITS ok to have POTS. (I am still trying to believe that last one 🙂 )
You have to forget what you USED to be able to do…and focus on what you NOW can do. And its OK! Maybe you’ll find a new path in life? A new fav thing to do? Meet a new set of people? Maybe……right?