Life with Pots-Postural Orthostatic Tachycardia Syndrome (NANOWRIMO2019)

Coping

Coping is probably my worst subject to write about. In the two years it took to figure out in the first place what the hell was wrong with me and how to treat it, I developed a lot of anxiety. My first real moment of dealing with low blood pressure and feeling like I was going to pass out was with three kids in a car driving to a really cool petting zoo about an hour away from home. I started feeling really light headed. I pulled the car over twice, the second time I called an ambulance. My kids were with me and couldn't come in the ambulance which freaked me out completely. One of the ambulance drivers called her daughter who works in a daycare to watch them. It took so much trust on my part to allow my two boys then five and three to go with someone else. My baby stayed with me because she was nursing.

My husband had to leave a job he had just, just started last minute to come rescue me. It was a nightmare. Then it kept happening. The same dizziness, light headed feeling. Part of surviving being a stay at home mom was that I was never home. I was always out at parks, zoos, museums. My kids got to be hands on learners. It was amazing. It made me feel free, powerful and full of life and then, just like that it was gone. Well really it was over the course of a year. I mean, I could have kept trying to drive, but that would have been dangerous. 

People often ask how do you cope? I was superwoman before. The first thing I learned is that being superwoman is what was making me sick in the first place. I was so afraid of my kids not having fond childhood memories I was overdoing it. So I had to pull back, very drastically at first but it came with a heavy mental toll. That being, I had to find ways to make being at home fun. 

The first thing I did was put my oldest son in school. Which is its own story. We had been happily homeschooling and he didn't even make it through the whole year for first grade when we got there. My other son I had to pull from PreK because I couldn't drive to pick him up and he kept his baby sister entertained, so it was win-win. 

Sleep became paramount. Just don't ask me how much I got last night with a teething 10 month old. 

Exercise three times a week according to I believe the Children's Hospital of Philadelphia guidelines. It is a long and drawn out process to building stamina.

Good food- okay this is still hard for me because of the next line.

Increased sodium intake- I suppose I should be happy I can safely ingest 4-5 times the suggested amount of sodium for a healthy human being, but sodium does keep your BP up.

New coping methods-

See here is the thing, before I could walk, take the kids out, get fresh air and that would always reset me. The zoo was my happy place. I lived there. We went there almost weekly, because I love the zoo. I live in a rather bustling city, so it's the closest thing I could come to what I grew up with living in a rural area of Colorado. That was out of the question.

Taking long walks, also out of the question.

Going grocery shopping, nope...

Walking to synagogue...haha no...

I thought of dropping out of school, but then I would have felt truly defeated. I told my therapist because school would take me awhile to complete it was my last hope of believing I would do something more with my life than sitting on the couch.

So what was left? 

I started writing when I was eleven years old. I went from playing with my barbies and dolls, making long drawn out stories that often lasted months to writing them. My first story was an eleven page short story I still have called, "The Prophecy," about a twin boy and girl who were destined to destroy a great evil. Writing was my calling.

In my twenties when I decided to be more religious, I found myself not wanting to write anything that wasn't aligned with my beliefs. I cannot suggest others do what I did over the last two years but when you are in a dark place emotionally and otherwise, you look to things that used to give you strength. Buffy the Vampire Slayer,  Angel, Dark Angel, shows that had strong female leads (Angel is hot, I still have a crush on David Boreanaz. That man gets hotter with age), and then I found Inuyasha Final Act and my muse was reawakened. I went crazy writing fanfiction. 

You know somedays all I can do is sit and write.  Thanks to Sesshomaru and Rin being my muses I have come out of my depression. I feel myself alive again and instead of restricting myself to religious only writing, I find I have more source material that means something to me.

I did not give up on school. My Bachelors in Psych should be done please God this summer. It's all a process. 

Medically speaking I now spend most of my time with a hematologist to manage my iron which made the biggest impact in my health, followed by my PCP to deal with the anxiety with medication. I hope to start seeing a therapist again, simply because having a chronic illness, a family and responsibilities, sometimes it's good to talk to someone.