Chronic Fatigue

Fatigue, pain, and brain fog can have a major impact on the ability to participate in conversations, respond to calls or texts, or provide emotional support to friends or family. All of those things take energy, stamina, and an ability to think clearly.

How do you cope with this aspect of chronic illness? Are there virtual spaces where you can interact with others in a low-pressure way... and feel a genuine sense of connection? Where do you go when you feel isolated but can't leave the house due to chronic illness?

One of the reasons I manage a Minecraft server for people with chronic illness is that it's a wide-open virtual space where you can experience the quiet presence of others without pressure. If you can't formulate sentences, it's okay. If you can't join the world when others are active, that's okay too. #ChronicFatigue #ChronicFatigueSyndrome #BrainFog #MentalHealth #ChronicPain Pictured: watermill built in Second Haven by player with fibromyalgia

This is a mural created with glazed terracotta blocks in Minecraft by one of our Second Haveners. Every week someone creates something that makes my jaw drop. I'm so honored to share this space with them!

If each block in Minecraft were one meter wide, this mural is about the size of the Parthenon in Greece. The woman who created this mural did so while coping with chronic fatigue and pain. Building is her favorite thing to do in Minecraft... and she rocks!

In Second Haven we've used Minecraft to create our shared virtual world. Minecraft can be many things... a game, a survival challenge, a find-it puzzle... but my favorite use is for creating art. Building something beautiful... art you can walk into and share with friends.

Anyway if you want to see our art "in person," more info is at SecondHavenMC.org. If you've never played, we'll show you how.

#ChronicFatigue #MentalHealth #Minecraft #ArtTherapy

In the past few months, I've had an unexpected experience. I gave up on full recovery. I gave up on the narrative that at some point, I was going to be better. The idea that I might be sick for the rest of my life was terrifying... until I gave up.

I should probably clarify that I'm still working on my health, and recovery is still my goal, but I'm not holding onto hope.

Anyway the moment I gave up, the unexpected result: less depression, more joy. Whuuuut?

What if there was no light at the end of the tunnel? There's a hashtag trending now: neis... no end in sight. (or neisvoid) What if this is it?

I didn't realize how much of my depression and despair was coming from this right here: waking up and wondering, why aren't I better yet?

has anyone else experienced this? where did it lead you? I'm still having moments of depression, but it's not nearly as bad. It's like a weight has been lifted.

(scene from Second Haven Minecraft)

#ChronicFatigue #ChronicFatigueSyndrome #POTS #Minecraft

I don't always notice my brain fog but one context in which it often becomes extremely apparent is business meetings... whenever I need to talk in-depth about something technical or complex or detailed. It's like I only have so much brain to go around, and filling it up with that, there's not much left for anything else.

I go from feeling really alert and clear to stammering and having awkward pauses and searching for words and settling for generic phrases and overall just feeling embarrassed and sad.

My usual go-to comment in these moments is something along the lines of "pardon my brain fog," but lately that only makes me feel worse, and it comes across sounding like an excuse.

for anyone with similar experiences, what do you say?

#BrainFog #ChronicFatigue #ChronicFatigueSyndrome #POTS

A To Don't List is one of my favorite concepts! Which one from the list do you need today?
#Addiction #AnorexiaNervosa #Agoraphobia #Anxiety #AutismSpectrum #ADHD #BorderlinePersonalityDisorder #BipolarDepression #MentalHealth #PTSD #Schizophrenia #Lupus #CeliacDisease #ChronicFatigue #Grief #Lupus #SjogrensSyndrome #Cancers #SuicidalIdeation #Selfcare #Selfharm

For the past 3-4 months, I've been playing Minecraft with others like me who have chronic fatigue, pain, brain fog, or isolating mental health struggles. We meet in a world called Second Haven. It's open to anyone (esp. friends and family) but designed to support people with chronic conditions.

It's been such a source of joy! We can run around, be creative, or go on adventures even while we're stuck in bed. It's like being able to meet up in the same dream.

We set our own pace and choose what we want to experience. One person built a vineyard on a hillside with an Italian villa. Another built a colorful market with a fairy tale mushroom the size of a skyscraper. Everyone is kind and understanding. I've been grateful every day that we have this shared virtual space.

If you're into Minecraft or you want to learn how to play, go to secondhavenmc.org for more info or comment here. #CFS #Minecraft #Gaming #Fibromyalgia #MyalgicEncephalomyelitis #MentalHealth #Depression