The first emotion I used to feel when I woke up was fear. Fear of putting my feet on the ground to see if I could stand. It was the gauge of whether or not I’d have a decent day or if I’d struggle. Well, I’ve recently had a slew of decent and even good weeks (not days!). I no longer have doubts about putting my feet on the floor. I haven’t used a wheelchair in a while and only need my cane at night and for longer distances. I feel stronger and very hopeful.
I’m eager to see what my new baseline is and how my body works. My body is not what it was, but it’s better than it is has been. I’ve gone from struggling when upright, to being able to stand for almost 10 minutes. You can get so much done in 10 minutes! I may not be able to go to the grocery store yet (the thought of it still terrifies me), but I can make all of our meals. I can care for myself and then some. There are days when I even change out of pajamas. 😉
I used to lay down between work calls to get more blood to my brain, thinking it would clear the fog and that I’d be smart again. Now, I can work for longer periods. I wash my own hair, drive the kids to school, and do laundry. I’m going to let the girls keep packing their own lunches though. I think it’s good for them.
I don’t know what led to this upturn. We implemented many changes at one time, so it’s hard to tell what combination worked. I can tell you that it wasn’t the medication. My body didn’t handle the first trial of medicine well and I ended up in the hospital. Meds work beautifully for so many people. They just didn’t work for me… at least not right now.
I was surprised at how quickly my body deconditioned within the first few weeks of becoming ill. Now, I’m two months into the Levine Protocol physical therapy program and my strength is improving greatly. I take salt pills and drink extra fluids to increase my blood volume. I wear compression stockings to help me walk (they’re not pretty but I don’t get far without them). My diet has changed a lot too. Less carbs and sugar. No big meals. Lots of produce and protein. I’ll never be able to drink coffee or alcohol again. I thought this would bother me more than it actually does.
One big lesson I’ve learned is to pace myself. I can’t do as much as I used to and that’s okay because I can do what matters. If I overdo it, I’ll be too weak to enjoy the next day. “I can’t spend my energy on that,” is the most common line that comes out of my mouth.
This past flare lasted over three months. I’ve never been sick that long in my life. I feel blessed that it wasn’t longer. I know that I’m still ill, that POTS doesn’t go away—but compared to the last few months, I feel pretty great!
This is new territory and I’m treading carefully, but I’m also enjoying every good day.
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Here’s a little more about my story and how I’m coping with chronic illness