I have embarrassing brain fog due to POTS and CFS caused by EDS. The onset of POTS and CFS was insidious which contributed to me having an extremely delayed diagnosis (12 years from onset). I’m on ivabradine for POTS and my heart rate is actually normal now, which I really appreciate, but the brain fog is still causing daily embarrassments and some days I can’t even form a coherent sentence or process something directly in front of me. It’s genuinely driving me nuts. Salt and fluids help a little but I’m still nowhere near my former self. Even my movement is slow like I’m underwater.
Hey, I am super late to the party but I figured better late than never? This place is super small, so nobody really comments. To be honest, brain fog is just kind of a constant. Things I’ve learned to help me feel better about it as a whole is a) taking things slower. I was a firecracker before getting ill. I still am, just kinda…in a different way. I have been just attempting to be kinder to myself, and giving myself the space and time I need to do whatever I need to do. That helps, over constantly looking at what I could do, and what I currently can do. I am sure you know that changes from day to day. It just helps to be nicer. b) Simplifying as much as possible. That’s from things to commitments. As in, I keep things as simple and regulated as plausible. Which helps me in the long run. Minimizing your workspaces, collections, and activities so that you can have a clear a -> b transition helps a lot. c) Finding simple pleasures. For me, small hikes when I feel well. Daycations, where you pick a place on the map you can drive to and from and enjoy something at. Talking or being with someone or something you really love. Making things when you can. That kind of stuff.
You can also always learn something new if you’d like. Cause it’s fun to putz around with that. Either way, you’re gunna be okay sister. Life is short, and suffering makes it feel long. In reality our time is pretty limited, and it sucks that our body is fighting itself. I’ve been trying to work on something about that. Cause I always have seen it as something like - an invader taking control of me and the pain not being the REAL me. But I don’t think it’s realistic or healthy. So instead I have just been trying to see the pain as part of my body, and it’s just something that is an element of me. So it feels less like an alien taking hold, and more so my body dealing with a complicated series of circumstances. It kinda helps, although yet again - I just kinda fell into it so idk if it’ll stick or anything. Either way, I will say as someone who loves and has worked with addicts - addiction isn’t another disease you more than likely will want to throw on the pile. I wish the world was kinder to individuals who are disabled, but it’s not. That’s just kinda…like…something you have to get used to. Even if it sucks.
Also you might just be terribly depressed. Cause I am not saying that your symptoms are not real. It’s just depression hangs like a hood on your brain and it can mess up all sorts of things up there, as well as in other places in your body. I hope you find things that you love, and lean into them. The only other thing I’d suggest trying to avoid if plausible is snacking to feel better. It’s fucking easy to put on weight, and it takes twice that to lose it. If you’re a non-eater due to digestive issues (or stress, etc) I would also suggest you DO eat. Just trying to figure out what the simplest yet healthiest combination of food you can eat is. I am a mean cook, but I have had to change quite a bit as my illness progressed. I am doing pretty okay right now. It’s not like…I’m in heaven, but I am doing okay. I have to cut my food into little ittle bittle bitty bits though, or else my insides riot. Pretty food, it does not make. I am happy though, eating well and drinking water. It keeps me level, although it’s not like - you can cure cancer with celery or anything. Just saying eating decently in a way your body can accept I do believe helps.
Ho-kay! That’s it. Idk if any of this helps or if you’re even around anymore but sending love and hope you are having the most chillaxinist of times.