Trusting the Numbers 6: A promising beginning, and a setback

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.

Comments

"I’m discovering, though, that I’m not good at making myself do that."

Its the hardest thing: this do absolutely nothing. I'm terrible at it, with moments of feeling like a Professional....including maybe I can out Buddha the Buddha. (kidding, but we try)

That spot where your feeling a little better: THATS the cliff edge. That edge must be approached with caution.

I was just announcing my Major Improvements last weekend, when in fact I"d had minor PEM crashes for most of the week.

I just felt kinda of normal for about one hour on Saturday.

Thinking crashes me hugely, the worst PEM I think I experienced was after I just listened to three young women chat in two languages. I didn't even have to pay attention and it crashed me.

I packed up the art supplies after 1.5 years of them living on the dining room table. Crash every time I try to focus on the tip of a pencil, pen or paint brush.

I've been resting. And resting. And not going out, And avoiding COVID and ordering groceries delivered and avoiding stress (PR visits are my biggest stressor at the moment). Husband runs errands, I clean the kitchen.

so the only thing left is this full on unplugging from all exterior inputs.

Would fully unplugging really make a difference?

Will I ever really pull off THAT level of unplugged?
 
"My heart rate variability numbers continued unstable, but I was encouraged by them anyway, because I almost always found some sign of improvement."

I thought that more variation in heart rate meant an improvement.....
 
The word "variation" can mean so many different things here!

We're after stability on a day-to-day basis, and that's what I mean here. My HRV numbers were varying a lot from day to day, and that's not a good sign. But I found encouragement because more and more, something was becoming stable instead of jumping around wildly from day to day. For a few days, say, my HF would be stable. Then it would start jumping again, but something else would be stable. An improvement from what it had been, but still not where I wanted it to be.

Higher HRV is a good sign—if it's achieved slowly. Big jumps in just about anything aren't good, as far as I understand.
 
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so the only thing left is this full on unplugging from all exterior inputs.

Would fully unplugging really make a difference?
One of the things I'm going to address in a future post is how much difference it makes for me to be watching a calm video, or listening to something, rather than just resting. I can't swear that avoiding those things helps me heal, but I can definitely see the impact of them on my moment-to-moment HRV values on my SweetBeat app. Unfortunately.

I'm so sorry.
 
One of the things I'm going to address in a future post is how much difference it makes for me to be watching a calm video, or listening to something, rather than just resting.
sometimes something else going calmly can keep us from wandering too far off into more turbulent eddies and little rapids.

I"m better off with a calm visualization that makes subtle suggestions, than just sitting quietly. (I have one I like that reminds me to let go of that distraction on the side of the river bed..)

I like to be outside, and since I am not, I watch things which take place outside, and this makes me happy and I find it calming and relaxing.
 
How are you doing now? I ask as I’ve just started with a Garmin watch and looking at my HRV plus heart rate much more seriously. I’m trying to work out my next steps … I’m 57 and have had ME since I was 41. Plummeted mentally after the rituxamib trial failed and withdrew from forums. Now I’m like blimey with long covid and technology things have changed. Plus a relatives long mental health journey has given me potential insight into what may have caused my ME. To make a very long story short I believe as I was adopted that my body went into “fight, flight or freeze” or sympathetic nervous system mode full time when I was given up by my birth mother.

Due to ongoing severe and complex trauma I went from one problem to another. At the age of 41 I part resolved some deep rooted issues, felt happy for the 1st time and wham ME. My relatives issue made me research attachment issues from adoption and led onto the para (rest, recover) v sympathetic (fight or flight) nervous system and how this affects heart rate varability.

From research I believe that ongoing meditation / yoga breathing and other factors can potentially put me back into para sympathetic nervous system mode. This may or may not make a difference to my ME but more importantly having currently an ongoing disastrous HRV reading probably means I’ve not much to loose.

i think the Gupta programme may follow a programme of breathing techniques that changes the sympathetic to para sympathetic nervous system. But I’m trying to find out if this is correct. In the meantime I’m practicing nose breathing exercises as a self starting point whilst I research not only the Gupta programme but to see if anyone else has any experience in this field.

Thanks for all feedback.

Sally
 
I’m practicing nose breathing exercises as a self starting point whilst I research not only the Gupta programme but to see if anyone else has any experience in this field.
I am considering launching the plunge face in ice water bath........vagal stimulation ...
 

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