survival-of-the-chillest

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Chronic Fatigue Syndrome/ME moodboard

-Forget me nots for awareness and finding a cure

-invisible man to represent millions missing

—CFS symptoms represented: Brain fog, nerve pain, joint pain, fatigue

-My anemia represented by blood cells

-Cage and window image to show the feeling of being trapped in your body

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How rude of my body to actually do what my condition does.

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Me at the beginning of june . Disability pride month is next!

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my response to being asked what having audhd(hyperactive af)and chronic fatigue syndrome (do nothing disease) is like

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Hi i have been very inactive because as u can see from these memes i am trapped in dehydration. Still waitin on paperwork. Chugging liquid IV enough to be not critical but not enough to feel not dead. My gastrointestinal system has just completely given up and i have to pace myself with food and water so its been a bit impossible to get enough fluids. For food i am just making all my meals very nutritious but fluid wise im crashin out yall

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So i’ve been gone for a bit.

Since my last sortof update where i thought things were getting better they actually got alot worse.

My wife’s seizures came back with a vengeance and they passed away in their sleep as some do when seizures are not under control.

It’s been a bit over a month now without them and its not easy but I’m trying my best to be okay. I know they would want me to keep fighting and that keeps me going.

but still i struggle to grasp losing my spouse less than a year after getting married and becoming a widow in my 20’s. It’s just not something you expect when you get married to be responsible for your spouse as next of kin only 9 months after marriage.

I feel disappointed to have finally been able to call them my wife and check off “married” on my every form. And now I’m legally no longer married and with the amount of medical forms in my life im going to have to experience checking that widow box alot. But i sure as hell am not checking single.

I think the point of this post is to remind everyone that not everyone with a chronic illness gets to survive. So cherish the people in your chronic illness community as much as possible because you never know what tomorrow brings.

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Me before the nerve study. The sign that was in the room where it happened. And Me after getting electricity shot through me multiple times.

This post is late cause i perished afterwards🫠

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i danced as a kid. like for 13 years . It was a big loss not being able to dance when the chronic pain got bad. With the new medication i’m on i just did my first lil dance number in idek how long. it was life changing. I did this song as a message to my chronic pain and wanting to be free.

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I created this personalized Autism creature for myself the other day and just wanted to offer my services in case anyone else wants an Autism, ADHD or other creature since i love making things like this.

so yeah creature commissions are open

$5 each creature

Can do multiple rizzing together if u so desire

I will personalize it as much as you want. For mine i even included my hat/hair from an actual photo of myself. Can use your personal photos or stock images. Will not be using any content that is not public domain or owned by anyone.

Hope to hear from u!

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Found on facebook. No explanation needed this is so accurate

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Personal Update!

Hey all! I know my content has slowed down recently 😅 whoopsies💀 My wife was hospitalized which was pretty bad but in the end they ended up stopping her seizures completely! I was also put on a new med that is really helping! We went from 2 very sick people to only one of us and im feeling alot less pain! Im still not at the level of functioning i would like. The current issues keeping me from that are my right hand/arm issue that still isn’t resolved because all scans came up clean so the only thing left is that its a nerve issue which makes sense considering the pain comes with an electric sensation😬The other one is my heart. Been having trouble getting to the cardiologist to dig deeper but my main doctor thinks its pots. Ive been having alot of chest pain. Its been difficult trying to balance the physical activity because I’m a-lot more mobile due to the pain relief but my heart does not appreciate the physical exertion. I have been planning a game plan to move out of my parent’s house soon since my wife is now able to work. Things are still rough but having a lot more hope that things will be better soon!

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With my recent new symptoms that my doctor suspects is pots , ive been carving salt reaaaal bad. I have CFS which is commonly comorbid with pots and I already have other dysautonomic issues so it makes sense. The drinks i was buying to keep my sodium up were a bit pricey so i made my own! I hope this recipe is useful to someone!

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I usually stick to my disabled activism content on here but i thought it was important to share this video from my art blog about my experience growing up as a mixed race youth in a predominantly white area.

View this post on Instagram

A post shared by Orion (@theartofasupernova)

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Hand therapy is literal torture and is only making me hurt worse but my MRI came up clean so its not surgical. But none of the treatments work! Please no medical advice we’ve already been working on fixing this a while. Have tried everything 😞

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i made this and have been wearing it everywhere. Finally claiming my cripplepunkness has been very liberating. Gives me less shame while walking slow and bracing myself on handrails to know that the people stuck behind me are enjoying my spicy art.

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i guess this is my official face reveal since this makeup is way too good to not share.