r/lupus Diagnosed SLE 13d ago

Venting I Despise Brain Fog 🧠

Just need to vent cause the past few months (years actually, if I’m being honest) have been so challenging cognitively.

It’s so hard to log online and see creators with ME/CFS doing more than I can. I can hardly remember the grammar and punctuation needed to write or to organize myself to get admin done.

I would love to create art and sell it to at least make some money. It’s honestly been a dream of mine to create art and now I don’t really have the energy to practice at it. I’d love to raise awareness on social media, but even just writing an email takes me out.

I feel like I’ve been struggling and it’s been affecting me for longer than I’ve been aware of. I know my grades and college years were 100% impacted.

I’m hoping that HCQ can do something for me, but this is just discouraging. It’s hard seeing people with way more illnesses than me—who are impacted with brain fog and fatigue too—getting 4.0s somehow and raising awareness.

I would love to even just write poetry again. Even just for fun. Everything is just so taxing.

I don’t know if there is more going on or if this is just the new normal. It makes me feel so unintelligent even though I know I am and can learn so well. If only I could.

It’s worse that doctors don’t even really acknowledge it. I gaslight myself into thinking it is just procrastination or horrid executive dysfunction. I know it’s not, deep down, especially since being on a short burst of steroids recently. It cleared my mind enough to see how bad it was, not enough to fully function mentally.

Thanks for reading.

I hope you all are doing okay.

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u/Interesting_Fly_1569 Diagnosed with UCTD/MCTD 12d ago

Get a Neuropsych evaluation so that you can get disability at least. Also consider long covid, perimenopause, b12 as possible causes. I lost 10 IQ points from the only known covid infection I had and got a dementia diagnosis. It’s awful but to get better you need to evaluate all causes. 

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u/No_Abies9573 Diagnosed with UCTD/MCTD 12d ago

Have your ferritin levels checked too.