Step 1: Getting out of PEM and moving toward stability
Brain fog summary:
I thought I was resting well enough, but I got into trouble anyway.
So when I can, I rest without doing anything else.
I don’t even listen to anything.
I move around when I feel like it, at least every hour.
But I’m not very good at making myself rest.
Step 1: Getting out of PEM and moving toward stability
The first step of this journey is reducing symptoms and stopping deterioration. This is taking me some serious rest time. It’s easy for me to rest when I’m feeling awful, since all I want to do is lie there, but harder once I start feeling better—and that is the bulk of the time.
This stage is lasting longer than I expected. It has taken me time to learn to rest well, to accept that serious rest is necessary, that simply keeping my heart rate down isn’t enough.
If I had it to do over again, I would stay upright much of the time to avoid making my POTS worse, but I would also rest deeply, as much as I could. That means lying down in a quiet room, eyes closed, nothing to listen to. It wouldn’t have been easy.
As it was, I spent a lot of time watching calm videos (getting less calm as time went on), listening to music podcasts, and playing gentle games on my phone, all lying down. If I had it to do over again, I would sit up more, but when I was lying down I’d try to rest even better.
Changes in my heart activity
A week or two after I started resting, my heart rate starting changing dramatically rather than gently as I moved around and as I recovered, jumping up and down a fair amount. When my heart slowed down quickly and dramatically, it pumped in a booming way, uncomfortably. It was not subtle!
I don’t know what caused this; maybe I was developing more severe POTS, or perhaps it was a natural stage in my healing? I don’t know. Maybe I should have consulted my doctor, but I was so used to being dismissed because of this condition that I wanted to gather as much data as I could before talking to anyone.
The very serious beats lasted maybe a week or two, but my heart didn’t calm down completely for about three months. Now, about four and a half months in, it’s become unusual for my heart to beat strongly enough that I think about it.
PEM and movement
As the weeks passed, my PEM gradually settled down so that I stopped having balance issues when I walked my small distances, and I could sit up for twenty minutes at a stretch.
I continued to improve, slowly. Movement became easier—pushing the buttons on the side of my phone, or setting something on the table beside me, no longer seemed like an effort. I began to have more trouble telling myself to move slowly, and I stopped asking my family to do things like rearranging the items on my bedside table. Sometimes, I forgot completely that I was in bed for a reason.
Signs of improvement
My heart rate variability numbers continued unstable, but I was encouraged by them anyway, because I almost always found some sign of improvement. One number or another would be stable for a few days, until the next event rattled things up again.
About three months in (June), more than one person told me that I was beginning to be my normal animated self again.
As I felt better I got more bored and added in activities. I re-started my study of two languages I like to study. I spent the bulk of my time typing and reading. I even tried a little crafting. Since my records seemed to show that my PEM was caused by relatively big events (hosting book club at my house, strong emotions, a lean test that almost made me faint), I stopped worrying about the small ones.
Setbacks
In July (about four months in), though, a few events over a few days combined to cause another episode of PEM. We washed my hair, I had a couple of stressful conversations, I got stung by a wasp, and I spent an afternoon opening envelopes and dealing with business, then winding some yarn.
The combination was too much. I woke up one day feeling truly ill, a rare PEM experience for me. My body felt slow. Even my voice was quite weak. Although my discomfort passed within a few hours, my voice remained weak for days, and I noticed that my heart rate rose more than usual when I talked.
That got my attention. I thought I had been getting better, yet I was now having new symptoms from things I thought of as small occurrences. Instead of being close to reaching stability, here I was in PEM again. I needed to take rest more seriously.
Alarmed, I canceled my subscriptions to my language-learning websites, stopped working so hard on this blog, gave up hope of crafting, and told myself that I would rest, truly rest, as much as possible.
I’m discovering, though, that I’m not good at making myself do that.
Brain fog summary:
I thought I was resting well enough, but I got into trouble anyway.
So when I can, I rest without doing anything else.
I don’t even listen to anything.
I move around when I feel like it, at least every hour.
But I’m not very good at making myself rest.
Step 1: Getting out of PEM and moving toward stability
The first step of this journey is reducing symptoms and stopping deterioration. This is taking me some serious rest time. It’s easy for me to rest when I’m feeling awful, since all I want to do is lie there, but harder once I start feeling better—and that is the bulk of the time.
This stage is lasting longer than I expected. It has taken me time to learn to rest well, to accept that serious rest is necessary, that simply keeping my heart rate down isn’t enough.
If I had it to do over again, I would stay upright much of the time to avoid making my POTS worse, but I would also rest deeply, as much as I could. That means lying down in a quiet room, eyes closed, nothing to listen to. It wouldn’t have been easy.
As it was, I spent a lot of time watching calm videos (getting less calm as time went on), listening to music podcasts, and playing gentle games on my phone, all lying down. If I had it to do over again, I would sit up more, but when I was lying down I’d try to rest even better.
Changes in my heart activity
A week or two after I started resting, my heart rate starting changing dramatically rather than gently as I moved around and as I recovered, jumping up and down a fair amount. When my heart slowed down quickly and dramatically, it pumped in a booming way, uncomfortably. It was not subtle!
I don’t know what caused this; maybe I was developing more severe POTS, or perhaps it was a natural stage in my healing? I don’t know. Maybe I should have consulted my doctor, but I was so used to being dismissed because of this condition that I wanted to gather as much data as I could before talking to anyone.
The very serious beats lasted maybe a week or two, but my heart didn’t calm down completely for about three months. Now, about four and a half months in, it’s become unusual for my heart to beat strongly enough that I think about it.
PEM and movement
As the weeks passed, my PEM gradually settled down so that I stopped having balance issues when I walked my small distances, and I could sit up for twenty minutes at a stretch.
I continued to improve, slowly. Movement became easier—pushing the buttons on the side of my phone, or setting something on the table beside me, no longer seemed like an effort. I began to have more trouble telling myself to move slowly, and I stopped asking my family to do things like rearranging the items on my bedside table. Sometimes, I forgot completely that I was in bed for a reason.
Signs of improvement
My heart rate variability numbers continued unstable, but I was encouraged by them anyway, because I almost always found some sign of improvement. One number or another would be stable for a few days, until the next event rattled things up again.
About three months in (June), more than one person told me that I was beginning to be my normal animated self again.
As I felt better I got more bored and added in activities. I re-started my study of two languages I like to study. I spent the bulk of my time typing and reading. I even tried a little crafting. Since my records seemed to show that my PEM was caused by relatively big events (hosting book club at my house, strong emotions, a lean test that almost made me faint), I stopped worrying about the small ones.
Setbacks
In July (about four months in), though, a few events over a few days combined to cause another episode of PEM. We washed my hair, I had a couple of stressful conversations, I got stung by a wasp, and I spent an afternoon opening envelopes and dealing with business, then winding some yarn.
The combination was too much. I woke up one day feeling truly ill, a rare PEM experience for me. My body felt slow. Even my voice was quite weak. Although my discomfort passed within a few hours, my voice remained weak for days, and I noticed that my heart rate rose more than usual when I talked.
That got my attention. I thought I had been getting better, yet I was now having new symptoms from things I thought of as small occurrences. Instead of being close to reaching stability, here I was in PEM again. I needed to take rest more seriously.
Alarmed, I canceled my subscriptions to my language-learning websites, stopped working so hard on this blog, gave up hope of crafting, and told myself that I would rest, truly rest, as much as possible.
I’m discovering, though, that I’m not good at making myself do that.
