Life with Pots-Postural Orthostatic Tachycardia Syndrome (NANOWRIMO2019)

POTS Management

I'm still sick. Today my head hurts and my eight year old is home sick from school. I'm waiting for a reply from my Creative Writing professor about how to do an assignment, so I'm going to sit and write for the morning until I have to feed my kids and then I'll make lunch and move on to doing household chores. I just feel like crap.

POTS Management I think is the hardest part about this stupid chronic illness. Most people say when you are diagnosed with a chronic illness you should make sure to build a support system but this is the thing with POTS, support needed is often physical. It means in a relationship the non-affected partner needs to step up to the plate and take over a lot of the household chores and duties. I'm not sure why, but it seems like with POTS, I read and have heard a lot of,  "you're making it up. You just need to try harder." 

Yeah I love sitting in bed all day not being able to move and having to fight my own body to get up.

"If you just exercise, you'll feel better."

Thanks Dr. Google, but if it's not done right then I will be in a worse position than I am now. Actually two summers ago we decided to drive to Milwaukee. I definitely had panic and anxiety going there. I'm terrified of going out of my comfort zone and having symptoms. I had anxiety on the way there but took my medication and then was fine. On the drive back, I proactively took my Klonopin. We stopped at a hotel where I went swimming with my kids. Because I did not know about my IDA at the time, it shocked my system. I nearly went to the hospital the next day because my body didn't like it. So no just exercising doesn't work.

So what does work? I want to try to be positive but right now I feel like all I can accomplish sick is to sit and write. 

1. IV Iron and I cannot say enough about having a full iron panel done. There are too many similarities between symptoms, especially for women who are menstruating and in their childbearing years.

2. Cardiotherapy. Over time this rebuilds your stamina.

3. 100oz of water a day. 

4. Nuun Electrolyte tabs. I find myself needing these in the morning to kick-start my days. During passover last year I didn't take them because they aren't kosher for passover and I ended up having the worst flare-ups. Nuun Tabs for hydration have 320mg of Sodium per tablet which does wonders to get me out of a dizzy funk. My after workout snacks fo choice are pretzels 420mg sodium, Nuun Tab, 320mg Sodium and Kirkland Guacamole, 350mg sodium. Right there is over 1000mg of sodium to get me out of a dizzy spell.

5. Sleep. This one is hard. When I have babies I become more nocturnal to compensate for the lack of downtime. But sleep is critical to maintaining ones health.

6. Anxiety medicine and therapy. I'm loathe to admit that I use Klonopin. It's in the class of Benzodiazapenes and can be addicting. But after speaking to my PCP  and taking a good hard look at where my life was, it's become my savior. I only need 1-3 pills a week to calm my symptoms which mostly act up in public and when I am overstressed. 

7. Finding a good support system. Sometimes this means taking out the toxic ones. I had to drop a lot of non-supportive friends and clergy members. It literally came down to for a while only my friends who have their own chronic illnesses and my medical team because people just didn't get it. You cannot make up 60/40 blood pressure. You can't make up 180BPM heart rates or nearly fainting. These aren't symptoms that you can just mind over matter. You also can't make up non-existent ferritin and iron saturation levels, so while everyone sat on their high horses talking garbage about me, even to my husband I decided I was strong enough to let those relationships go. 

8. For those who are married...I would highly suggest therapy. This is the thing no one tells you about being chronically ill...it doesn't mean that your husband or wife will automatically be supportive. Sometimes it means that you have to drag their stubborn asses to therapy because they are listening to the people around them saying you are making it up and that it's not a real medical condition. It also sometimes means they just don't have the stamina to care for you. We got strangely lucky or unlucky. Around the time my flare up was the worst my husband was let go of from his job. He had no other option than to care for me and my needs and got to see finally how weak I really was. And the therapist did tell him that he couldn't keep being a dork. It was so helpful and relieving for me, because I learned what he needed and what I could give to him.

I am not a doctor, I just want to say that now. I'm just trying to share what has worked to make my body stronger and get my life back. I really wish there were more stories like this out there.