Ugh! One step forward, two steps back. And so the dance that is my life continues. Yesterday was not a great day. I woke up with very weak, stiff hands so I could tell my body was upset about something. I sure wish we could figure out what exactly caused my entire system to get its panties in a bunch. I'd be more than happy to do whatever I can to fix it!
I powered through the day and did alright. I had moments where I felt pretty good and moments where I felt like crud! Then I went to bed... My body entered attack mode. I think I've mentioned this before but it seems that all of my really bad episodes happen as I'm trying to fall asleep at night. I don't understand that.
I'm starting to recognize the signs of these episodes and had an idea my night was not going to go well. My arms were very weak and my stomach was burning/hurting and gurgling. I ate a lot of carbs yesterday so I'm sure I brought this on myself. Bread is like a drug to me. I know it's bad, but it's so soooo good!
So, as I'm lying down my heart decides to be crazy. I wasn't having tachycardia but I was having palpitations. It was doing some crazy flip-flops and each beat felt like my heart was going to come out of my chest (even though it wasn't racing). I didn't take my blood pressure because sometimes those numbers can just make me panic but I would guess my pulse pressure was really low. Pulse pressure is the difference between the top number and bottom number on your blood pressure by the way. I was also having some breathing problems. It feels like I have to concentrate to breath. Then, just as I start to drift to sleep my body forgets to breath and I end up jerking awake and gasping for air for a good thirty seconds. Then, the legs started feeling crazy. The muscles got very uncomfortable and they went tense and would not relax. The episode ended with waves of tingles and goosebumps over my entire body and a lot of stomach gurgling. Then, I finally drifted off to sleep! I can't tell you how many times I've chanted "Just go to sleep, you'll be fine in the morning" to myself.
Just for the record, I don't do any form of illegal drugs and this was not a panic attack. Haha! So many of us Potsies (myself included) are misdiagnosed as having anxiety. The biggest relief of my life was my first trip to Mayo when Dr. Fealey looked at me and said, "This is not anxiety. It's not in your head and it's nothing you can control. These are very real reactions caused by dysautonomia." I, of course, broke down in tears because I'm a lady and that's what we do!
Happily, today is a new day! I'm going to avoid carbs and enjoy the beautiful day I have been blessed with. Those episodes are scary and I hate not having control of my body, but they also put everything back into perspective. It was a privilege to wake up this morning (a lot of people didn't) and I will make the most of this day.
"For it is by grace you have been saved, through faith—and this not from yourselves, it is the gift of God." Ephesians 2:8
Amy
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