That sounds incredibly tough.
My brother has a similar/worse sickness that halves his life expectancy. He's also a programmer. Some quick thoughts from going through the downs with him:
- There's no silver bullet. More sleep, better nutrition, more sports, and less stress make a difference.
- My brother literally left a PhD in treatment optimization using ML at Cambridge because pharmaceutical companies are churning such better treatment so fast that optimization past ones felt irrelevant. The bad news is that most new treatments only stabilize your situation, so you have to stay as healthy as you can until the cure comes. We felt it was better to plan around this, and open the door to be positively surprised, than hope for the moon and get crushed with never ending disappointment.
- There are many ways of earning a living that don't involve programming. Career switches can be daunting when you've lost self confidence, but most jobs require only a fraction of the brain it takes to program.
- If the prospects are very gloomy, consider changing country. We had my brother move country so he could get a medication that's not covered at home and costs >$250k/year. The medication changed his life, and will soon be covered at home too. Having to leave your friends for health reasons suck, but European countries offer such better health coverage that it can be worth it. And it's easier living a happy life when you don't have to worry about unpredictably becoming homeless.
My brother has a similar/worse sickness that halves his life expectancy. He's also a programmer. Some quick thoughts from going through the downs with him:
- There's no silver bullet. More sleep, better nutrition, more sports, and less stress make a difference.
- My brother literally left a PhD in treatment optimization using ML at Cambridge because pharmaceutical companies are churning such better treatment so fast that optimization past ones felt irrelevant. The bad news is that most new treatments only stabilize your situation, so you have to stay as healthy as you can until the cure comes. We felt it was better to plan around this, and open the door to be positively surprised, than hope for the moon and get crushed with never ending disappointment.
- There are many ways of earning a living that don't involve programming. Career switches can be daunting when you've lost self confidence, but most jobs require only a fraction of the brain it takes to program.
- If the prospects are very gloomy, consider changing country. We had my brother move country so he could get a medication that's not covered at home and costs >$250k/year. The medication changed his life, and will soon be covered at home too. Having to leave your friends for health reasons suck, but European countries offer such better health coverage that it can be worth it. And it's easier living a happy life when you don't have to worry about unpredictably becoming homeless.