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Why is Expedition 33 so good! The graphics, the characters, the acting and music, the writing!!! Amazing!

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(can you tell it’s my new hyper-fixation)

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Enjoy life to the fullest today!!

(Source: Unknown at this time)

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Everyone say it with me, the disability comes before the diagnosis ever can/does. Thank you for coming to my ted talk.

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When the chronic fatigue fatigues you chronically

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I’ve been trying to get a doctor to listen to me about CFS/ME for the past six months, and I’m getting so sick of it. First it was a referral then that doctor “didn’t like diagnosing it”, then it was another referral and they told me to contact my primary care doctor about it, I had a pediatric neurologist I had asked about it too but she didn’t treat it, I just sent over a portal message to my current (adult) neurologist to see if he treats it. My primary doctor has told me she’s very much just a primary care, everyday sort of doctor but at least she listens to me so I might go back to her and explain my symptoms and what CFS/ME is more and see if she can help me since that’s what my rheumatologist told me to do. I just feel like I’m screaming and no one’s listening, I know there’s not really treatment for it but I want it confirmed so me and the people around me can understand more about what I’m going through.

Update: my adult neurologist (the one I messaged) said that a lot of things can cause fatigue and agreed that I should follow up with my PCP. I made an appointment for Friday with my PCP and I’m going to bring in some papers with info about CFS/ME on if to give to her. If she suggests referring me someone else if she can’t help me I’ll probably say no or that I’ll at least think about it, I’m just so done with the healthcare system and doctors, I’m burnt out and I can’t deal with this anymore, I need a long break from it all.

6/13/25 update: I had a doctor’s appointment today with my PCP, it went good, I discussed chronic fatigue syndrome with her and mentioned how the rheumatologist she referred me to gave me a working diagnosis of fibromyalgia. She referred me to a fibromyalgia and CFS specialist to hopefully help me differentiate if what I’m dealing with is Fibro or CFS, or both. I really appreciate my PCP, she always listens to my concerns and even though she admits to not knowing a ton about these two things she’s open to me explaining my symptoms and giving me referrals. I know I mentioned before that I didn’t want to see another doctor but I’m open to seeing this one because they supposedly specialize in fibromyalgia and chronic fatigue. I need a break from it all though so I’m giving myself a week or two where I’ll hopefully not have to deal with any medical system stuff like doctors appointments, phone calls, etc.

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fuck “passing”, i want people to be so confused about my gender they blow up

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I’ve been trying to get a doctor to listen to me about CFS/ME for the past six months, and I’m getting so sick of it. First it was a referral then that doctor “didn’t like diagnosing it”, then it was another referral and they told me to contact my primary care doctor about it, I had a pediatric neurologist I had asked about it too but she didn’t treat it, I just sent over a portal message to my current (adult) neurologist to see if he treats it. My primary doctor has told me she’s very much just a primary care, everyday sort of doctor but at least she listens to me so I might go back to her and explain my symptoms and what CFS/ME is more and see if she can help me since that’s what my rheumatologist told me to do. I just feel like I’m screaming and no one’s listening, I know there’s not really treatment for it but I want it confirmed so me and the people around me can understand more about what I’m going through.

Update: my adult neurologist (the one I messaged) said that a lot of things can cause fatigue and agreed that I should follow up with my PCP. I made an appointment for Friday with my PCP and I’m going to bring in some papers with info about CFS/ME on if to give to her. If she suggests referring me someone else if she can’t help me I’ll probably say no or that I’ll at least think about it, I’m just so done with the healthcare system and doctors, I’m burnt out and I can’t deal with this anymore, I need a long break from it all.

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Getting all my anxiety-fueled Pride knits so far this year in one photo before I bring them to sell for my local mutual aid org tomorrow ☺️

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It’s frustrating when it’s so hard for me to reach out for help, and then when I do no one gets back to me, or I feel like I’m not listened to, it’s really disheartening and just enforces the idea in my brain that I’m not worthy of help.

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I’m so sick of my own body, I hate it, I want to feel normal and not be sick, I’m mad that what I have is incurable and I will live with it for the rest of my life. I’m angry that it’s taken so much from me, my job, school, opportunities and events, and impedes me from everything in my daily life. How am I supposed to love and be kind to myself when this body treats me like shit right back? I know logically that I’m just going through grief, but I’m angry at everything, and I’m angry at those around me for not understanding more, or that they don’t do their own research and just know things I tell them but when I tell them they seem so uninterested. I’m tired of just having to cope, to choose the healthy things when the bad mechanisms are easier, but I know I can’t fall back into bad habits or else I’ll just feel worse. I don’t know what to do with my anger either, I’ve never been shown how to deal with it much besides what I’ve learned in therapy, and I’ve always perceived anger as a threat because of my upbringing, so what do I do now that it’s me who’s angry?

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I want all of these

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Being Autistic and Chronically Ill presents the uniquely terrible experience of having sensory overload from existing in your own body.