• 0 Posts
  • 115 Comments
Joined 1 year ago
cake
Cake day: August 1st, 2023

help-circle






  • Yep, like just like everything else, not everything works for everyone. I’ve been awake for 26+ hours to the point I’m hallucinating and still unable to fall asleep. But apparently I just have to wait till I’m tired enough. As if being awake for 26 hours straight isn’t enough? I also can generally make it so I can be awake at the right time if left to my own devices. Which is why I’m really glad I’m out of my parents house, because they would decide “you’ve been sleeping long enough” and wake me up an hour after I fell asleep.












  • Yep, like at one point only needing my rescue med three times a week was an improvement. I can only take it three times a week, and would just have to suffer waiting till I could take more. Then it was two doses a week, and now at about 1.5. It’s not good, but it’s better. I’m not expecting miracles, I know it’s incurable, but I’ll still try for better.


  • Yeah, like I’m not that bad all the time, usually I’m pretty okay, and can live my life fairly normally, but when it gets bad it’s BAD. And when that happens I can’t push anything, physically or mentally, I just have to rest. I go for walks when I’m up to it, try to have some semblance of a routine, eat fairly healthy, get some exercise, hang out with friends, all that stuff. I’m actually doing way better than I was a few years ago. I still have a long way to go, but I’ve already come a long long way. I still end up in a slump quite often, but it’s in general an upward trajectory. I count that as a victory. Not in the “I’m accepting that this is the end” way, but in the “hell yeah I came this far” way.


  • Yeah, like it’s terrifying that people can go through a decade of education and training and still not have a grasp on some of the basics of their field. I expect to have to explain my migraine because I have a pretty rare subtype (like I’m the first person my neurologist has treated), but I shouldn’t have to explain why I can’t take a medication that says on the pamphlet “DO NOT TAKE IF YOU HAVE [CONDITION I HAVE]”. I’m not expecting every doctor to understand a neurological condition that affects less than 1 in 8,000 people, but I do expect them to accept that I do have it and not treat me like I’m being uncooperative for not being willing to risk a significant increase in risk of life threatening side effects.