One of the symptoms I struggle with a lot is sleep, it feels like I haven’t woken up feeling rested for years now 😢, but a few things that have helped me are trying to deal with the anxiety I developed around sleep.

I got more and more anxious that I wouldn’t be able to sleep or sleep well and that in itself started making me sleep worse.

This probably sounds like it’s not useful, but the message of this video is to give up on your sleep, you can’t control your sleep, and it will come when it wants.

I still have a bedtime routine so I don’t take this as don’t do anything, but more try to stop obsessing and let go, it wasn’t easy for me but I now almost never dread going to sleep like I used to do, I sleep a little better sometimes and a little worse, and that’s just how it goes. 

It’s been a long jurney, but as I’ve tryed to remove or lessen the anxiety around sleep it has helped, but also medications made a huge difference, I’ve been taking several for a while now and with an agressivly regulary sleep time, the medications, and working on my anxiey, my sleep has gotten much more managable. I still have bad nights, and plenty of bad days, and regulary wake up with nightmares, but I survive, and they don’t hit as hard as they used to, I have more bandwith to handle the changes. 

One thing I’ve noticed is that having higher histamine foods can lead to higher heart rates, during the morning, especially, but also in the waking up during the night with a racing heart. Apparenlty 3 am is when histamies can peak, and that seemed to be true for me, I would wake up covered in sweat and panicked, whith a heart rate going a mile a minute, I took me a while to notice that my heart was racing though, I needed to use a pule monitor to figure out why I was so panicked. 

I noticed this especially with ripe bananas and apples, with my heart rate monitor, I was able to see my heart rate jump and stay higher for several hours when the first thing I ate was a ripe banana.

PEM has been very difficult for me, it’s made doing anything active impossible, from chatting with friends to light or heavy exercise, just reading a simple bit of text, or listening to music used to be too much for me, my brain would crave the distraction of listening to something to distrace me from how horrible I felt, but it would take too much energy even to lay still and listen to a podcast.

The profound lack of enegery and the backlash when using any amount of energy was and is so aggressive it’s hard to comprehend, even now as I’ve improved a bit, small things can throw my body into a month long recouperation spiral, and those spirals generally feel horrible, you hurt, you’re body gives the weirdest most uncomfortable sensations, you have a dark heavy blanked of fatiuige hanging over you, and you can do almost nothing. 

PEM is different for many people, but for me it’s been one of the most debilitating parts, I was a very active person and movement is where I found most of my joy, but having such a negative feeling connected to movement and long recovery times, has built a negative association with movement, and also just makes you scared to do anything. 

Not feeling like you don’t own your body, and that it’s being controlled or just acting mostly out of your control is a scary sensation for me, the slow process of letting go of that perceived control was and is hard. 

This video also links to some very helpful PDF’s to help with communication and crashes, you can check them out with the link below.

https://batemanhornecenter.org/education/mecfs-guidebook/

What is Post-Exertional Malaise?

PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting 24 hours after the triggering event. Physical activity, cognitive overexertion, and sensory overload can all trigger PEM.

Post-exertional malaise is a unique symptom, incongruent with experiences of fatigue after overexertion in healthy individuals. It is not the same as being more tired than normal after activity.

Try starting with this one

And here’s the full podcast