Update: current ME/CFS flare is slowing me down

It’s hard to deal with these unexpected flares or relapses that seem to come out of the blue.

You end up asking yourself a million questions. What did I do wrong? Did I eat the wrong thing? What did I do yesterday or the day before to cause this much pain? Why am I so weak today, did I overdo it this week? Was the TV too loud? Did I miss the signs and push too hard? Did I get over excited about something?

It can be a bit worrying when you are sure you’ve done everything right, but your body fails you anyway. The key is to not get distressed, because that just makes things worse. Stress absolutely is your enemy. 

This is what I’ve been going through the past couple of weeks. I initially thought I had a flare from my histamine overload and coming out of ketosis, but I’ve been back on the wagon for over a month and I’m just not getting better, some days even much worse.

I’ve learned to accept what is, though I still shake my head at the bizarre symptoms that pop up every day.

This week the main and most prominent symptom, apart from the increased exhaustion and pain, is the heart racing.

I’ve moved my Fitbit back onto my wrist as I’m going to stop focusing on my step count (which is affected by arm movements, hence moving it to my ankle previously), and I’ll start focusing on my heart rate instead.

It is well documented that people with ME/CFS can pace effectively by monitoring their heart rate and staying within their personal limits. Mine, it turns out, are the same as an 89 year old! (I’m really only 36)

And during this current flare, my heart rate is almost constantly in my fat burning zone (supposed to be for moderate activity) even while resting in bed. When I stand up, go to the loo or brush my teeth it shoots into cardio zone, sometimes just turning in bed or lifting my head off the pillow can have the same effect!

A couple of days ago it shot right into peak zone at 130 from simply brushing my teeth (way past my personal threshold of 92)!

I’d love to know how a healthy person’s heart rate responds to these simple activities.
Needless to say, I’m not getting much done as every little thing pushes my HR up so high and I feel awful until it settles again.

The slowing down of my heart rate can take quite a while sometimes, and other times it comes to a super rapid screeching halt and feels awful in my chest!

I haven’t figured out patterns yet, but all I know for sure is it helps to take note and behave accordingly, since I started paying attention to HR, I have been able to avoid awful going-to-pass-out moments that I was having up to just a few days ago.

I also know that right now it would be unrealistic and even detrimental to continue aiming for 1000 steps a day. I just cannot manage it. I occasionally hit 800, but mostly I’m not even checking.

This November is all about a shift in priorities and definitely a shift in pace. I have been so much more active this summer, and the weather could even be a factor, that it’s of course frustrating to feel like I’m going backwards again.

The important thing to remember is that I’m not going back to square one. I’m just changing difection and waiting for the next gust of wind to push me forward again.

This is just a season and it will pass. My aim now is to pay close attention to my body, the signals and the reactions, so that I can adjust and adapt to this new normal as soon as possible so I don’t accidentally  cause more damage.

Another sign I’m flaring quite badly is that it’s only 10 pm and I am falling asleep! My usual bed time is between midnight and 1am so this is super early for me. I was already dozing around eight, but I’m trying to keep to my regular schedule else I risk causing sleep disturbances or even insomnia. I don’t want to go back to that.

Routine and structure are important. My brain is switching off now, the fog is coming so I’ll end this here for now.

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Chronically Hopeful
Chronically Hopeful

Char was born and raised in South Africa, but has been settled in Europe for over 20 years. She's passionate about finding ways to live well, despite chronic illness.

Apart from blogging, she enjoys art, cooking, reading, gardening, gaming and learning new things. She speaks English, Italian and Afrikaans fluently and is slowly learning French too.

She used to be a teacher, but has been housebound with Myalgic Encephalomyelitis since 2015. Since then, she's focused on spending the little energy and strength she has each day on the people and activities she loves. Finding joy in the little things and celebrating the ordinary.

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