The Chronic Illness Life: A Scary Reality

Checking in on Halloween 🎃🎃🎃

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Dearest reader,

thank you for being here! Today, I want to briefly check in. Since it’s Halloween, a scary story seems like the right fit. 🎃🎃🎃

I took part in a “zombie parade” for ME/CFS on Instagram.

Part 2 of “Long Covid 101” will be in your inbox soon. For my own mental health (and for those around me), this topic took precedence.

Read part 1 of “Long Covid 101”.

A scary life

Living with chronic illnesses can sometimes feel like you woke up in your own, personal horror movie. There are as many different stories about the onsets and experiences of chronic illness as there are people who are affected. But “scary” is an apt adjective for all of them.

For me, the first year or so, I spent in a haze. I knew something was wrong, but I wasn’t taken seriously by doctors (yet). The massive impact a Covid-19 infection had on every aspect of my life was something I did not yet want to acknowledge.

So I kept going: Working. Doing sports. Being social.

I was pacing to some degree, but no one had explained what that entailed. I suffered.

Now, over 2.5 years into this journey, my life appears unrecognizable at times. The majority of my time is dedicated to taking care of my symptoms - and my cats, of course. It’s a job that never ends, that requires flexibility, and amazing organizational and process management skills.

Sometimes glimpses of what my body used to be able to do catch me off guard. It is like a punch in the gut every time.

I was knitting earlier today and my hands were trembling like leaves on a windy day. Not a day goes by without pain. Not a day goes by without meds. A week when I do not have to cancel any plans or appointments is rare.

The scariest part for me, though? Cognitive impairment 🧠😱

My head often feels like someone performed brain surgery without my knowledge, and cut out some bits and pieces. So many words I struggle to retrieve. Lost trains of thought. An inability to concentrate for longer periods of time. Going into sensory overload quickly.

Plenty of rest is crucial, but lately, it sometimes came with an odd sensation: Even though I had closed my eyes, it felt like they were still open, thus preventing me from sleeping 😳

Like in a horror movie, in the chronic illness life, you never know what’s around the corner. Medical appointments can become a big fear, because most of us have experienced medical gaslighting.

We all get knocked off our feet when our symptoms worsen or new ones emerge. And with ME/CFS, even joy can transform into horror in a second when you overexert yourself in a pleasant moment or even just feel the emotion.

Chronic illness is a terrible and wise teacher, and there must always be room for the terror and dread that comes with that life.

When I had a few good hours, I crafted these tiny Halloween companions.

Happy Halloween! 🎃🎃🎃

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If you understand what I’m talking about: I’m sorry and it sucks and I see you.

If you know someone that might be going through something like this, and chances are that you do: Please show kindness and grace and compassion. Don’t tell us to “think positive”, that “everything happens for a reason”, or any other such bullshit. Listen to us, believe us, and see us. And please don’t forget us!

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Glimmers

Glimmer: a micro moment of joy, awe, hope, safety; opposite of trigger ✨✨✨

• The sound Luna makes when she is fast asleep and lets out a little “sigh” 🐱

• Luna waking me up from nightmares ⏰ She just knows.

• Short walks in the cool fall air 🍁🍁🍁

• I received a bursary for an exciting online class. More soon… 🤓📝

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A question that remains…

After the horror, are there any recent glimmers you would like to share? 🤔🤔🤔