thechronicelk

[thechronicelk]

And another door closes.... at least for now.

I thought I'd already processed the grief of losing so many dreams and opportunities to this illness, but there's more it seems. Even my backup dreams are being cut short.

Despite it all, I will find a way to go on. I will find a way to share my stories and I will find a way to make this life worth living. Because there is always something worth living for.

Don't give up... please.

[thechronicelk]

Lately I've been unable to function well. I feel like my batteries have long since rotted away, but life is still making demands of me. How can I keep up? I can't even decide what to eat. I can't even talk to people for too long before I start to get nauseous.

I'm trying to give myself grace. I'm managing to hold my physical life together at the least. But it sucks, ya know? Don't I deserve to enjoy things and people I have always enjoyed? Why suddenly do I get so overwhelmed? It feels like my brain has so many tabs open that it simply won't load anymore. Even typing this is difficult, I am having trouble finding the right words...

Have patience and grace with chronically ill and neurodivergent folks who are struggling with severe symptoms. Imagine that we are walking the same path as you, but for us, it's at a steep incline, and we are often expected to keep up and take no breaks, as well as deal with other obstacles on the path.

[thechronicelk]

If you have a chronic illness (especially an invisible one) or are neurodivergent, you may have been told once or twice or a thousand times that you're lazy. I've certainly had that drilled into me.

What able people don't realize is that laziness implies intention and enjoyment in putting off activity. I don't intend to not take care of myself and I don't enjoy not taking care of myself. I don't intend to do nothing all day and I don't enjoy doing nothing all day. It's boring.

Society is obsessed with productivity, and because of that, I feel guilty for not having the energy to be productive. I don't even have the energy to do activities I enjoy. Even activities normally associated with low energy are so difficult for me that I get physically ill trying to push myself to do them. I can't even be social for very long before I start to get sick from physical and mental exhaustion. I'm sure I'm not the only one who has lost dozens of friends for this reason.

If you're reading this and you relate, I see you. I know how hard you're trying, because I'm doing the same. Rest is not unproductive or lazy, and I think society needs to be reminded of that.

[thechronicelk]

My name is Galaxy. I start this blog tentatively in hopes of connecting with other chronically ill artists and finding a supportive community. I've gone a long time without a support network of people who actually know what I'm going through.

I have Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS). I've been sick for around ten years. I don't usually talk about how intense this experience has been for me, because hearing about suffering can be uncomfortable, but I desire a place to talk openly about just how hard it is to deal with this.

What is ME like? It's like paying for every action you take. You may have heard of the spoon theory, but I haven't connected with it as much as some people have. Having ME for me is like being in a cage. It's like wearing weights everywhere you go. It's feeling like you've been hit by a truck. Everything you do hurts you sooner or later. But that's putting it lightly. If my life is a railroad, ME derailed the train completely. Everything I ever wanted to do, be, see, experience... it was all gone. All of my autonomy vanished.

These chronic conditions can look different for each individual. I've seen people who can't leave their bed, and I've seen people who are high function despite the pain, fatigue, and other symptoms they deal with. I myself fall on the more severe end of the spectrum. On a bad day, I lay in bed with my eyes closed and wait. All of my mental energy goes towards survival. Survival from debilitating pain. On good days, I get a few chores done and work on my artistic passions. It's all I can do.

But it's not just physical. Brain fog is another terrible symptom of ME that has altered my life irreparably. For me, it feels like I'm slowly losing my mind. It's like being an old phone that takes forever to load its applications, and often crashes in the process. Things I used to be good at, like memorization, improv, and especially reading, have become extremely difficult and exhausting.

This is why I say it feels like I'm in a cage. Between a dysfunctional body and mind, all I can do is exist. I can wait for a day when the fog clears a little, like today, and use the energy I have to try and be productive.

Sometimes it's exhausting to be positive, especially when things truly are not okay, and I think that's okay. I think it's okay to be upset by the hand you've been dealt, because it's not fair. It really isn't. I did everything right... and that's what's so tragic about this chronic illness. However, I hope that my words help someone feel seen, understood, and like they're not alone. Like even though things suck, we can live on. Because despite it all, there are things worth living for. I will not let ME kill me. I refuse.