3 ms·

Been living with a rare neuromuscular disease since birth. Might kill me early, might not. I've learned to cope with it in hundreds of ways, just like people c

Been living with a rare neuromuscular disease since birth. Might kill me early, might not. I've learned to cope with it in hundreds of ways, just like people cope with their career in hundreds of ways, or their kids, or their marriage. It's a central faucet of my life. It's destructive as hell to shove it aside and try to "forget about" all the small, daily issues. So I've learned to co-exist with it by doing the following: --Like another poster mentioned, pay attention to the little things. Sleep, exercise, diet, stress levels. Treat your body like a spoiled little princess, and it'll be less likely to throw a fit. --Stay away from online "support groups" for chronic illness. 99% of them are toxic as hell, especially the "spoonie" community. Instead, seek out people who have chronic illness and are living the sort of life you want. Develop individual friendships with them, and learn from them. --Educate the people around you. The stigma of chronic illness is generally less than the stigma of "that person who you can sometimes depend on, but then randomly blows deadlines, and appears to be hungover all the time." If you're in a safe environment, talk to your boss. Talk to your coworkers. Tell them what's up, don't leave them guessing, because they're not going to guess something you like. If you're not in a safe environment, GTFO as soon as possible, salary be damned. --Educate yourself as well. Not knowing is the most stressful thing, and you can mitigate a lot of that stress by developing more knowledge of your disease. Try to avoid anecdotal evidence (random forum posts, ect), and stick to respected journals and textbooks. --Advocate for yourself. I was misdiagnosed six times before they finally figured out my issue. If I hadn't demanded further testing, I would most likely be dead at the moment. (This is another area where educating yourself really pays off.) --Choose a supportive partner. If they treat you like a hypochondriac, or aren't sympathetic to your issues, then get out. (On a similar note, don't believe anyone who says chronic illness kills any hope of relationships. I have a fantastic partner, and have many chronically ill friends who do as well.) --Keep a detailed diary of your symptoms and your daily activities, even when you're feeling good. This will help you figure out what helps, what doesn't, and what your tolerance levels are for activities, exercise, medications, ect. --Stay on top of medical developments related to your disease, and reach out to any trials that may benefit you. I could add a hundred other things to this list, but I think those are the important ones. So yeah. Keep fighting the good fight. Again, and again, and again, and again. (Edit: Took out some identifying info.)

sickygnar 6y ago
> --Stay away from online "support groups" for chronic illness. 99% of them are toxic as hell, especially the "spoonie" community. Instead, seek out people who have chronic illness and are living the sort of life you want. Develop individual friendships with them, and learn from them. Totally. The more I think about the disease and difficulties, the unhappier I am. If I don't read that garbage the unhappiness and bitterness subsides into a dull background noise. --- I'm epileptic. I don't deal with it well at all. I hate it and it annoys the hell out of me. There is the giant, "what if" fear that overshadows pretty much everything I do, including going to sleep. Fortunately, I have a good pulse on how I'm feeling (i.e. if I'm going to have a seizure in the next few days), and I know what I need to adjust in order to keep the seizures mostly at bay. Apart from medication, the most important thing to keep in check is diet. I've found intermittent fasting and low-carb/gi help the most, it's annoying to keep up, but if I fast in the morning (aka skip breakfast, or keep my a.m. meals keto), then I can generally coast and not have to worry about seizures too much, but if I eat a moderate amount of higher-gi carbs, then I will likely have a period of a few days where I have partial seizures.
- paperwasp42 6y ago
  Oh, hey, fellow epileptic! Couldn't agree with your comment more. I've also found that diet has a huge impact, and I'm fascinated by research into the gut microbiome and the giant impact it has on the brain. I also follow a low-carb diet, and I've found it helps a lot (even though it's a pain in the ass.) Fasting doesn't work quite as well for me, since I already have low blood pressure and sugar. Any tips for building up a tolerance for fasting?
  - sickygnar 6y ago
    I've never has issues with blood sugar, so I'm not sure if any of what I would do would work for you. I basically just eat 2-3 eggs for breakfast (100% no carb breakfast). Then I don't eat lunch until 2-3pm. I find I can pretty much eat whatever I want for lunch and dinner but I still try to keep it low/medium GI foods and opt for fattier stuff if I can. I don't have any problems with blood sugar, and I don't get crazy hungry (I actually forget to eat pretty often, I find it more of an inconvenience, hah). I WFH so it's not like I burn many calories sitting on my biscuit anyway. My main problem with it is weight loss. I'm not overweight and I like to exercise, so I need to make sure I eat enough. Another downside (I'm guessing) is electrolytes or vitamins. Maybe I'm simply underfed but I seem more prone to muscle tightness/cramps. I find I can break the "diet" regularly and not lose therapeutic effect. I do it 4-5x/week. I'm down to 1-2 partial seizures a month, whereas previously I was hitting 30+. I have neocortical TLE (likely focal cortical dysplasia, adult onset), so the partial seizure numbers tend to be higher than your standard hippocampal/mesial TLE. Overall my seizure control is pretty good lately. I'm hoping it stays good - but as you probably know, can't let your guard down. I ended up here after failing to maintain keto and the low gi ("south beach") diets. They seemed to improve seizure control a bit, but I had real problems sticking to them. Fasting is all the rage now, so I figured I'd borrow the easy/good parts from both of those diets, while trying out a simple, loose version of fasting. I'm glad I gave it a shot. Good luck!

sickygnar 6y ago

> --Stay away from online "support groups" for chronic illness. 99% of them are toxic as hell, especially the "spoonie" community. Instead, seek out people who have chronic illness and are living the sort of life you want. Develop individual friendships with them, and learn from them. Totally. The more I think about the disease and difficulties, the unhappier I am. If I don't read that garbage the unhappiness and bitterness subsides into a dull background noise. --- I'm epileptic. I don't deal with it well at all. I hate it and it annoys the hell out of me. There is the giant, "what if" fear that overshadows pretty much everything I do, including going to sleep. Fortunately, I have a good pulse on how I'm feeling (i.e. if I'm going to have a seizure in the next few days), and I know what I need to adjust in order to keep the seizures mostly at bay. Apart from medication, the most important thing to keep in check is diet. I've found intermittent fasting and low-carb/gi help the most, it's annoying to keep up, but if I fast in the morning (aka skip breakfast, or keep my a.m. meals keto), then I can generally coast and not have to worry about seizures too much, but if I eat a moderate amount of higher-gi carbs, then I will likely have a period of a few days where I have partial seizures.

paperwasp42 6y ago
Oh, hey, fellow epileptic! Couldn't agree with your comment more. I've also found that diet has a huge impact, and I'm fascinated by research into the gut microbiome and the giant impact it has on the brain. I also follow a low-carb diet, and I've found it helps a lot (even though it's a pain in the ass.) Fasting doesn't work quite as well for me, since I already have low blood pressure and sugar. Any tips for building up a tolerance for fasting?
- sickygnar 6y ago
  I've never has issues with blood sugar, so I'm not sure if any of what I would do would work for you. I basically just eat 2-3 eggs for breakfast (100% no carb breakfast). Then I don't eat lunch until 2-3pm. I find I can pretty much eat whatever I want for lunch and dinner but I still try to keep it low/medium GI foods and opt for fattier stuff if I can. I don't have any problems with blood sugar, and I don't get crazy hungry (I actually forget to eat pretty often, I find it more of an inconvenience, hah). I WFH so it's not like I burn many calories sitting on my biscuit anyway. My main problem with it is weight loss. I'm not overweight and I like to exercise, so I need to make sure I eat enough. Another downside (I'm guessing) is electrolytes or vitamins. Maybe I'm simply underfed but I seem more prone to muscle tightness/cramps. I find I can break the "diet" regularly and not lose therapeutic effect. I do it 4-5x/week. I'm down to 1-2 partial seizures a month, whereas previously I was hitting 30+. I have neocortical TLE (likely focal cortical dysplasia, adult onset), so the partial seizure numbers tend to be higher than your standard hippocampal/mesial TLE. Overall my seizure control is pretty good lately. I'm hoping it stays good - but as you probably know, can't let your guard down. I ended up here after failing to maintain keto and the low gi ("south beach") diets. They seemed to improve seizure control a bit, but I had real problems sticking to them. Fasting is all the rage now, so I figured I'd borrow the easy/good parts from both of those diets, while trying out a simple, loose version of fasting. I'm glad I gave it a shot. Good luck!