No really. Every time a person with pots stands up, our heart rate goes up by at least 30 beats per minute. It’s super fun! I mean, who doesn’t want to feel like they are running a marathon just by swinging your legs out of bed and standing up. You feel super refreshed and ready to start your day! Nope. Along with your heart rate bursting out into an excessive cadence of beats, you also get to enjoy the wonderful sensation of feeling as though you want to pass out. All day long! Can I get a heck ya! Now these are just the average potsies (as we like to call ourselves) baseline symptoms. Pots patient’s are a little bit of a mixed bag; every day you get to reach into your pots party bag and pick out a couple different symptoms that you get to wine and dine for the day. Here is a little a little cheat sheet on the vast array of symptoms that could grace us with their presence on any given day. It was borrowed from http://www.dysautonomiainternational.org website, which is a great resource for understanding and learning more about how you can cope and help with Pots research. Don’t forget to zero in on the “and much more!” portion of the chart!!! Many people with Pots get to include other illnesses that either resulted in pots or came along with the bonus of Pots!! 2 for the price of one! Which essentially means, a bunch of extra symptoms to go along with all these! WOOT WOOT!
It comes with a magical super power
Ok, so we are essentially like Harry Potter. We get to wear the cloak of invisibility! That’s right, we could walk right down the hallways of Hogwarts , and no one would know what is going on beneath our cloaks! Pots is known as an invisible illness. That is because all of the action that is taking place, is happening on the inside, and it isn’t immediately visible to those on the outside. On the outside I look like a healthy 41 year old woman, ready to take on the world. However, if I were to park my car in the disabled parking spot because I have trouble walking long distances, or use a scooter to get around the grocery store to help make sure I don’t pass out, I would be given more than a few dirty looks and comments along the way I am sure. No one sees the pain that comes with this illness, or the feeling of not being able to stay upright on your feet some days, or the amount of energy it requires to do most activities. (remember, our heart is in a sprint all day long, it’s tiring!!) This super power doesn’t always feel so super when those around us never get to understand what is really going on. If only the invisibility cloak could be shed, and the whole world is embraced in a kindness cloak instead. What a concept that would be eh?
You pack for a vacation every day
So I gave up carrying around a super trendy purse a long time ago. Now, I carry a super sexy and sleek black backpack every where I go. It’s super awesome! My husband often asks me if I am ready for school, as I sling the thing on my back. After a quick evil eye, I proceed to the car with my luggage. The best part is, we aren’t going far, just to the grocery store, but I have packed for a week long trip to Cancun it seems. You see, Pots is all about planning for worst and hoping for the best. The last thing you want is to be caught underprepared. So in my bag of fun I always have at a very minimum:
- A least a litre of water
- a bottle of Gatorade
- a package of Nuun tabs
- a weeks worth of medication ( you never know when you are going to get stranded somewhere!)
- hot packs to warm my iceberg body up
- cooling towel to cool my overheating body down
- clothes to get warm
- clothes to cool down
- salt packages
- salty snacks, salty snacks, and more salty snacks
We are professional Salters
My name is Lindsay, and I am a professional Salter. Salting is my profession. It has to be if I want to add anymore credentials to my resume. I salt my smoothies. I salt my oatmeals. I salt things that might make the average person cringe. Oh those fries already came salted you say? Yeah, well i’m just going to shake a little more of this mineral into my life one fry at a time while you all watch in horror! Isn’t that bad for you in the long term I often get asked? No, it’s not. Would you rather I lie flat all day in the hopes that salt long term isn’t bad for me? The reality is (for me anyways), I am hypovolemic to start with (which means I start the day with low blood volume). I have to find ways to increase my volume so that I can sit and stand. Salt is how I do this. Salt enables my body to hold onto fluid, which increases my blood volume. Along with salt, I drink, drink and drink water and eletroyltes all day long. It allows me to be upright and allows me to be a mom, so yah, pass me the damn salt already! I am living for now, and hoping for the best later.
It makes you appreciate life
I would never wish this on anyone, and would never want this in my life if I ever had the choice. But having an illness puts your life into perspective. It makes you grateful for every day that you are able to function and feel good. It makes you grateful that this is all you are battling, vs some of the other more devastating illnesses that other’s in the world contend with daily. I know I have been guilty for feeling the “poor me’s”. The reality is, this is a really sucky illness. The reality is also that it could always be a lot worse too. I know a lot of people have it worse than I do, and a lot of people have it better. No one is immune to the poor me’s, and that is ok. Feel your “poor me’s”, and then pick yourself up and fight. Do whatever it takes to make your life have meaning, and try not to be defined by this. You are not POTS. POTS is not you. You HAVE pots. POTS doesn’t HAVE you. Got it? So take a second, and think of all the things around you that you DO have that has nothing to do with pots. Think of all you have accomplished despite Pots. Think of all you want to still accomplish with Pots. Let Pots be a little annoying sidekick in your life that you have to tell to be quiet every damn day, and then focus your attention forward. Stop looking back at what Pots has done, and look forward to how it changed your direction and led you to where you are going now. There is a reason for everything that happens.
POTS IS ONLY PART OF YOUR STORY, THE REST HASN’T BEEN WRITTEN YET, SO MAKE IT COUNT!