Learning to Live With POTS

 

The beautiful state of Arizona is our home, but man these summers are brutal. Heat exasperates my symptoms and I'm no match for this dynamic duo. 

I recently went to Mayo Clinic (and yes, it really is as great as everyone says) trying to get some answers to how to live with my illness better. I left my appointments and tests feeling defeated and discouraged. They sent me home with a more thorough diagnosis of Hyper POTS along with the following instructions to help me cope.

• Workout EVERY DAY (when that's the very thing that makes me feel sicker)
• Chug water and electrolytic drinks practically every second of every day
• Add salt to everything
• Consider going on meds
• Know my limits. 

Okay okay, so I can handle the first four (recently decided I needed to humble myself and bite the bullet and go on meds, yuck), but man that last one was the kicker.

I've never liked limits. I've never accepted them either. I like to push myself and impress myself with what I'm capable of. So being told over and over that I needed to not only know my limits, but respect them...is the hardest pill to swallow. But that pill is a lot easier to swallow with support behind you.

I think the most important part of learning to cope with this illness is having not just a good support system, but a great one. You need to be backed by people who love you and support you, who understand, and who will remind you that you're not weak when you feel like you are.

I am apart of a few Dysautonomic support groups on Facebook and I have read so many posts from people that don't feel supported by their spouse or family and I see how that affects not only their mindset but their progress. Thankfully, this isn't the case for me. My husband is my rock. He has taken initiative in learning about my condition and has gone to every doctors appointment with me so that he can know how to best make life just a little easier for me. He supports me physically and man, does he support me emotionally. 

I think that it's super common to experience guilt when you deal with an illness like this. You look normal on the outside, but you're not and sometimes it's easy to fall into the "I look normal, so maybe I'm making this all up?" mindset. But the fact of the matter is you may have good days where you feel less bad and those days might make you feel like you're being dramatic or you're just blowing things out of proportion. Just remember, those bad days will come and will hit you like a ton of bricks and serve as undeniable proof that you are not crazy and that you are sick. Having that support system there for you on both the good days and the bad days is life changing. I can't even imagine what my life would look like without it. 

My husband makes me sit while he vacuum's or mops or does the laundry or any of the other countless tasks that he takes over for me, when he knows I'm too proud to say I can't do it.  He doesn't get annoyed at listening to how I'm feeling every day because he's the one who asks. Sometimes you may feel like a broken record and you may worry your spouse is going to resent you for your illness. This has been something I've struggled with. I know that caring for me can be exhausting and he picks up a lot of slack when I'm having a bad day (which has been so much more often lately, thank you thank you thank you, husband), but he has never once complained about it and he tells me the only thing that annoys him is when I apologize that I can't do more or apologize for talking about it "too much". I mean, how lucky am I?

Dysautonomia can be difficult to understand even for those who struggle with the illnesses. But I can't stress enough how important it is for your spouse to be educated about it. For them to understand truly what you're going through and what that means for you in life is imperative. POTS is real and it can be debilitating. You not only need them to know what to do if you faint or if you need them physically, but you need them to understand how it effects you emotionally. They need to be a constant for you. Someone who will remind you time and time again that what you deal with is a serious thing and it's not something for you to beat yourself up about. (I stole all of that from my husband, verbatim. Told you he's the best)

This illness not only effects you physically, but it effects you mentally and emotionally. If you feel emotional after a bad episode or if you can't for the life of you focus, you're not alone. You're not being dramatic and you're not being lazy. Your body's autonomic system is freaking out and it's not your fault. You might get frustrated with yourself that you just can't do some things that other people can and I know how that feels. There are so many things I want to do, but right now, I just can't. 

I would love to hike and rock climb and walk my nephew around the house to soothe him without needing to sit down a minute in. I want to go on roller coasters and go skydiving and stand in lines with no problem. I want to do burpees and jumping jacks and run around with my puppies without feeling so dizzy and faint. I want to take a full shower without having to sit down and go to a gym without leaving embarrassed.  And one day, I hope to do every one of those things.

But for now, I will just work on experiencing life as much as I physically can and challenging myself to listen to my body instead of trying to challenge my illness and wind up losing every time. I will work on loving my body for all of the wonderful things it can do and I will work on letting myself  get emotional and frustrated sometimes cause heck, it is frustrating. And most importantly I will work on thanking God for the challenges He's given me to learn more about Him and learning the joys of bending my will to His.  Sometimes it is hard to know what He's trying to teach you in the midst of hardships, but maybe that's the beauty of it. Learning to trust Him when it doesn't make sense and accepting what you can't change can lead you closer to Him than you could have ever imagined. 

I think the hardest part of this chronic illness is just accepting that you have it. Understanding that you're not "normal" and that you're not just weak and wimpy.

For all my fellow POTSies out there, I think you're a heck of a lot stronger than you give yourselves credit for.

P. S. I'm starting meds this weekend so wish me luck and prayers would be so appreciated cause we all know I can be a nervous nelly!