Facing relapse and the dread of ‘emptinitis’
Emptinitis is what I have dubbed that eerie feeling of being empty inside, like a washcloth wrung too tight, not a drip escaping from it.
Hi friend!
It’s been too long and honestly I hate these long breaks that I have to take when my bodymind stops working.
Photo by Jonny Clow on Unsplash
I was doing really well this spring. I had started new medication that was helping me a bit (nothing revolutionary) and it gave me enough energy to work on my music in small increments. As I wrote earlier, I had to re-record some songs because the recording settings were wrong and the sound wasn’t great. I managed to get through some of the songs, recording from my reclinable wheelchair and editing from bed, but then my medication stopped working and the weather turned against me with its low pressure days. On top of that my dad was in hospital for several weeks and it triggers a lot of trauma for me. I still have a few songs to go. It will take time, but time is something I have lots of.
And then came the dreaded emptinitis.
Emptinitis is what I have dubbed that eerie feeling of being empty inside, like a washcloth wrung too tight, not a drip escaping from it. I think it comes from a mix of several things happening at once, like not having enough energy for neurons to fire and create original thought, and not having enough energy to find and seek out inspiration.
I do also think trauma may have an impact on emptinitis. Since my dad was in hospital I’ve had a few nights where I wake up with panic attacks — a mix of fear of what might happen to him, but also the fear of losing one of my main carers. Not getting the right kind of help is my worst nightmare. I’m scared that my body will relapse to such a large extent that I’ll be tortured by my body and can no longer live in it.
Emptinitis is not a state any able-bodied or able-minded person will have ever experienced. It’s not depression, it’s not ennui, it’s not burnout, it’s not weltschmerz, it’s… well… emptinitis. It just feels empty inside, like not much is happening — a physical shut-down of sorts, there is simply not enough energy available.
I have written about the loss of my inner world before and emptinitis is a symptom of losing that inner world. I told my friend the other day that I don’t feel like myself anymore when the emptinitis is bad. Despite losing my inner world I can usually push through and squeeze something out, but when the emptinitis turns bad, there is nothing more to be squeezed out. I also feel a lack of motivation to put my words out there. Perhaps this is the trauma speaking. Perhaps it triggers an internal mechanism to protect oneself from the outside world.
This eerie state of existence is something I dread the most, because it feels like my life stops to have meaning — and when bedbound, that can be dangerous.
Fortunately, I have a very stoic, rational, and at the same time deeply compassionate voice in my head that allows me to be scared, but at the same time tells me “this too shall pass.” I call this voice the Wiser.
I’m still not up to the level I was this spring, so I have to make some changes to this newsletter. I have enough blog posts for a new season, but I won’t be able to send out meditations on a regular basis. I may do one sporadically. The new schedule looks something like this:
Every second Wednesday you get an article about navigating chronic illness. That’s all I can do right now. If I feel up for it I will send out a meditation or community chat.
Tell me…
Have you ever experienced emptinitis?
How does it make you feel when you are creatively disengaged/empty?
How do you mentally/emotionally/spiritually handle relapses?
How have you experienced trauma shutting you down creatively?
Thank you so much for reading this post. If you know someone who could benefit from this, then please share this page with them. You are also more than welcome to share it in your Facebook or other patient support groups.
Did you miss?
Grieving the loss of my inner world
Tiny creative acts: How I stay creative amidst chronic illness
What it’s like to live with severe ME/CFS
Meditation: Witnessing our grief
Are you looking for all the meditations? Click here
I think the closest I’ve come to emptinitus is being fully numbed out from head to toe and disconnected from every part of myself. But I’m not sure that’s the same thing?
I’ve def been creatively disengaged/empty -I felt dead inside. I have a photo from this time that’s now on my ten year passport and I look dead behind the eyes.
When it comes to relapse, the first one I had in 2020 was massive. I could have quite cheerfully ended it all and probably would have had I not been paralysed by the excruciating pain that was making me feel that way. I didn’t know relapse was what was happening. It lasted 6 months and I couldn’t communicate or express what was going on.
It helped me tremendously to find out that relapse is all part of the journey. With all future relapses I’ve been able to affirm “this is a relapse. And a small one at that”. It’s helped enormously.
I’ve experienced tons of shut down in my life. I wouldn’t allow myself to explore any creative possibility. Being creative came as a surprise to me. Being encouraged with it and by it has helped me tap into an unlimited resource that has been part of my healing.
I’ve healed a lot of trauma from this lifetime and past though, ancestral and self inflicted.
I am deeply sorry to hear about your dad. I can’t imagine how worrying that may be but Can understand that it’s to the extent of panic attacks. A parent and a care giver is huge. Feeling for you and I’ve been thinking about you a lot this week.
Sending big hugs during your challenging time. I enjoy your writing and meditations whenever they come.
I think I have experienced something similar to emptinitis. It’s like my body is there but somehow I’m not, I think I’ve had it a couple of times when I’ve been bed bound or just recently when I had a knee injury and was sofa bound (but me tall struggling with other life things). It’s almost like being under water for me, like a separation from the world and my reaction to it. I’m not sure if this is the same thing?
I absolutely love your naming of these parts of yourself. I must try and do the same, I imagine it’s good to separate yourself from them.
I hope your dad is much better ❤️🩹