Happy Friday,
Time for a general update:
A lot of people have been asking about the blog and when I’m going to post but even for me, it’s hard to find material when you spend 23 hours a day in a dark room. Shocking, I know. My energy levels were also very low to the point that when my mom brought my meals up, simply making eye contact felt exhausting. So writing was not on my to-do list. Making it through my day was all that was on my to-do list tbh.
When we tried to leave Mayo we had every travel issue in the book thrown at us. We spent 27 hours traveling from Rochester, MN to Myrtle Beach, SC. Everything that could go wrong traveling, happened. As some of you know, the 7th plane delay ended up occurring after we got on the plane that had no air conditioning and we had to deplane due to it being over 90 degrees outside. The sweltering heat almost caused me to pass out inside the plane and none of this is made easier by needing a wheelchair. We eventually got to Myrtle Beach.
We got here Sunday, May 13th. I began my beta blocker Propanolol that evening. I noticed my body temperature changes were not so extreme. It took a bit longer for my heart to skyrocket upon moving. I struggled for the first time in my life to hit 160 bpm while working out (albeit I was sitting down on a recumbent bike….) For potsies, the bed is the worst place to be which makes everything really difficult because most of us have chronic fatigue. We also have blood pooling in our legs. For me, it gets to the point where my skin itches and my ankles are so swollen I literally can’t even bend them. Since May 13th, I have been in bed about 90% of the time. 
We chalked it up to change of environment, exhaustion from traveling and being at Mayo all week. Then more recently, I started noticing more and more of my heart recordings were showing blue which means less than 60 bpm. Even at 50, I thought “meh, I’m fine”. It was the 34 bpm recording throughout the day that got me slightly concerned. For future reference, we’ve been told anything under 55 is when you go to the ER…. you live and you learn and I’m fine. After discussing with my doctor from Mayo, we decided to stop the beta blockers altogether. It is bittersweet because although I feel like my regular sick self instead of barely alive, beta blockers are the main treatment for POTS.
My “normal” sleep schedule has been about 6 a.m. to 12 p.m. It has been an absolute nightmare and my adrenaline is one of the causes of insomnia and is also made worse by it, so not ideal. One night I took 2 Benadryl and 2 Aleve PM and I was still up until 7 a.m. It has been agony. I missed the feeling of being sleepy tired which is completely different from feeling sick exhausted all the time, believe it or not. Wednesday we got some quality CBD products so I have slept well since Wednesday night. Which is a big deal!
So Tuesday was the first day of not taking my medication. My resting heart rate has been steadily rising which is exactly what we wanted. I can be somewhat mobile again. Going from my bed to the bathroom now warrants a change of over a 100 bpm within 30 seconds which is exhausting as always….so we are back to my normal sick self. Who knew I’d be grateful?
I got a recumbent bike from Amazon that I do my little workouts on. The hope is to recondition and to help sync up my system. Depending on the day, I can do 10 minutes and be finished or I can do 10 minutes at a time, recover and do a total of 20 or 30 minutes if I’m feeling wild. That’s a big day though. What the doctors did not seem to consider, is that I have to do these workouts AND THEN shower. It’s so much energy right now. I use a super age appropriate shower stool. It comes in a striking Millennial Grey for those of you looking to purchase one (I lied, that isn’t a thing). To be fair, shaving is a lot easier…Anywho, so basically, my existence has become trying to workout and shower. For example, I can’t workout, shower, and do my hair the same day. Below is the Spoon Theory. This has become the easiest way for people with chronic illnesses to explain to regular folk what our days are like. Go through your day and see how many spoons you use!!
potsiemouth 