161–170 of 187 posts
kidding, of course one is finding the humor in things
reminds me of that guy who said that in life even if we're forced to deal with the cards we're dealt with, bluffing is and always an option
sympathy is the last thing i'd want from the people i care about, i'd rather give them a good time as long as i can since they can cry their asses all the way once i'm gone anyways
One day at a time. Since you cannot cure that illness, I recommend fixing everything in your life that you have control on and that might help you feel better. Sleep well, eat a good diet, skip fast-food and alcohol when possible, etc. This won't cure it (don't listen to people that say it will) but it will make your overall life better. This will make it so that when the chronic illness hits you, you're at a more st…
Illness or not, this is good advice for everyone. Each has their own challenge(s) whether they are of the diagnosable kind or just fatigue, anxiety etc.
It's terrible to get flareups, but medication and pre-emptive tactics work. So I drank a lot of water, and just have to feel my body. Used to be my left toe at first, but then it started to spread.
One day at a time. Since you cannot cure that illness, I recommend fixing everything in your life that you have control on and that might help you feel better. Sleep well, eat a good diet, skip fast-food and alcohol when possible, etc. This won't cure it (don't listen to people that say it will) but it will make your overall life better. This will make it so that when the chronic illness hits you, you're at a more st…
Someone else mentioned in the comments that you must learn to push through and ignore your illness. That is true but comes with warnings. Your baseline will be at a different place than someone who is healthy. You must learn it and learn to have realistic goals. You should not try to push yourself past this, it will burn you. Especially if that illness is new and you are used to how you were previously. You won't be…
My body and mind completely gave out. I’m essentially fully disabled, but because it’s not directly visible I couldn’t get disability. Even when I was in bed lights off for 18+ hours a day in horrible agony.
There are limits to what the body can take without correct treatment.
I take the good days and try to make them that much better by being more productive, trying to be 'there' for my family more that day, etc. Because I know when the bad days come (sometimes more often than good), I'm going to have to take a break and sometimes see my productivity plummet to nothing. I am also writing a book, collecting my sarcastic thoughts on my particular illness: https://leanpub.com/you-only-have-c…
I was lucky in that I got sick reasonably into my career, with enough resources and lack of dependents to step back and do nothing but focus on health. I believe that was key to achieving deep remission. But that type of focus doesn't necessarily lend itself to career success.
It's cliche, but you really do need to be your own advocate. "Step therapy" really does mean that you get started on old, less effective drugs first unless you fight it. And particularly in IBD, EEN is rarely used or recommended in the US relative to Europe despite good evidence https://pubmed.ncbi.nlm.nih.gov/29398336/ and clear potential as an additive effect on anyone's treatment.
PS utilized your devops tools and advice before I got Crohn's and it was critical, thanks!
One day at a time. Since you cannot cure that illness, I recommend fixing everything in your life that you have control on and that might help you feel better. Sleep well, eat a good diet, skip fast-food and alcohol when possible, etc. This won't cure it (don't listen to people that say it will) but it will make your overall life better. This will make it so that when the chronic illness hits you, you're at a more st…
Earlier quoted context omitted.
Illness or not, this is good advice for everyone. Each has their own challenge(s) whether they are of the diagnosable kind or just fatigue, anxiety etc.
"just" seems a pretty dismissive framing...
Chemistry can help. balance its cost vs the cost of the stress making you worse / slowing your healing, and it may be a bargain worth making... or not. We haven't got Fukitol(tm) but the natural pharmacopeia offers many options and human genius has expanded that beyond the bounds of absurdity. we mammals are good at ignoring things, too. Ignore the things you can't do, enjoy the things you can all the more. Ignore th…
I think that, even if you ignore or don't notice pain, it still will have, in the long run, some effect on your psyche. The same way prolonged background noise will turn you insane even if you're not hearing it. I think in a lot of cases, chronic conditions are co-morbid with depression not because people actively weep over being in pain, but because a constant pain signal ends up having an effect on how the brain is…
What I do:
1. Identify what triggers it.
Doctors don't know what to tell me apart from "take these pills / shots" as it is unique to every individual. However from trial and error I have found these key triggers: lack of sleep, lack of exercise, certain food choices, excessive alcohol, stress. Small slip ups on any off these are fine, but continual abuse over periods of days / weeks and it will flare up again. Nearly every flareup since I worked these things out can be traced back to a change in life patterns. Moving house, going on holidays, start of Covid (and closure of the gyms) etc. I've worked out the triggers and now I need to address them, which is easier said than done over a timespan of years.
Note for anyone who has a friend / family member with it: Initially, I tried everything under the sun with a possibility of working, and the only thing to fix things up were the drugs. Now I can manage drug free, but all those methods did sweet F-all until it was controlled with drugs (but every case is different). Send them a link to whatever method you want, and then never bring it up again. It shocked me how many people who thought they were doctors came out of the woodworks offering me crackpot theories and then were offended when either I didn't do it or it didn't work (oh you weren't strict enough, you didn't give it long enough). For everyone's sake, provide the information then shut up.
2. Address the triggers.
Food: Avoid overconsumption of dairy, wheat, sugar, alcohol (wine / beer are a lot worse than spirits, white spirits are the go to although I don't like them). A bit here and there is fine and in a normal week I'll have all of them, but it is when you are chaining days of them and they dominate your diet it becomes bad. Also avoid overeating in one sitting, as putting your stomach at max capacity seems to also be a trigger.
Sleep is obvious. Min of 8 hours, 8.5-9 daily is best
Exercise frequently, at least 3x a week. Cardio is ok, but it seems weight training helps the most. Of the list I feel this is the most infrequently mentioned by others, but has helped me a ton.
Stress: I deliberately took a job with a company that had a reputation of respecting work life balance. It is still a demanding environment, but you can choose how hard to push yourself. I try to keep to an 8 hour day but maximise how much I do in that time, and completely switch off after. I turned down a FAANG offer to work here, assuming I would be trading career / financial success for lower stress, but it has turned out better on all fronts (career, pay, stress) which was a nice bonus.
3. Plan ahead
Although I have it under control, I definitely feel like I have a lot less energy than my friends. I just feel my body using my energy reserves to constantly fight this thing and it is fatiguing, and is getting slightly worse every year. I don't want to be working when I'm 60, and have no idea if disaster will strike earlier.
Financially I'm focused on getting to a point where I can retire in around 10 years time, FIRE style. I love my work and plan to keep doing it whilst I still love it, but I need that backup plan covered. Previously I have had to take long periods off to rest up and heal, and during that time I did nothing remotely work related, didn't write a single line of code. I need to be prepared for that happening again.
Plan B is company stock options paying off which is looking more probably than not in ~4 years or so, and would make retirement more comfortable, but I'm not banking on a plan B.
4. Give up control
Control everything you can, and be indifferent to everything you can't. I wasted so much energy early on being angry about how things were, rather than using that energy to fix what I could. Easier said than done however.
5. (Bonus point) Get off the internet
Back when I was diagnosed I found various different groups online that I thought would be good to get some answers and see what other peoples experiences are like. Bad move. They are like news channels, reporting mainly the bad side of the experiences. Don't let your disease consume your life, let alone other people's experience of it.
That's all the advice I have. Bit late in the thread to be commenting, but hopefully a braindump will help someone.
Earlier quoted context omitted.
Mold illness is nasty. Each of the three of us experienced different symptoms. Some of our symptoms included increased food sensitivities, brain fog and neurological symptoms, mood swings, random muscle aches ("knots"), occasional random sharp pains, redness and/or swelling of hands or feet. None of those were particularly consistent but did reoccur over time.
I developed vitiligo a few months after moving into a new apartment which had a mild sewage leak. I'm pretty sure the apartment caused my condition as there is no other case of vitiligo in my family and it is known to be triggered by chemical irritants.