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Ask HN: How do you deal with chronic illness?

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Re: Ask HN: How do you deal with chronic illness?

#171

Post by lma21 »

devteambravo wrote: post #66

Not quite illness, but I'm still here, after surviving a 500Lbs SVBIED blast in Afghanistan. ~300 surgeries/10yrs later, I'm sitting here trying to become a product engineer while dealing what could be construed as hurdles: -Massive insomnia. I try to meditate, read tech news and listen to Javascript lectures. I can't reliably schedule meetings in the morning due to sometimes not falling asleep until 6-7am. Hack your…

Good for you for never giving up, never showing the pain you go through, and for ignoring other people's reactions. That shows resilience.

Re: Ask HN: How do you deal with chronic illness?

#172

Post by thorin »

neurouch wrote: post #35

I've had a chronic headaches for over 20 years. Actually just one big long two-decade headache, it's never gone away and nothing, including painkillers, really helps. Three things that I do to deal with this: - ignore: most of the time it's not top of mind; I can feel it always but don't think about it always. - keep up some hope: every few years, I go through the usual rounds with my GP and other specialists to see…

Given it's been 20 years I'm sure it's not anything obvious, but the main reason I get headaches is dehydration or blocked sinuses.

Other likely reasons would be caffiene/sugar spikes.

What is your general state of health and diet like, and stress levels?

Re: Ask HN: How do you deal with chronic illness?

#173

Post by specialist »

devteambravo wrote: post #66

Not quite illness, but I'm still here, after surviving a 500Lbs SVBIED blast in Afghanistan. ~300 surgeries/10yrs later, I'm sitting here trying to become a product engineer while dealing what could be construed as hurdles: -Massive insomnia. I try to meditate, read tech news and listen to Javascript lectures. I can't reliably schedule meetings in the morning due to sometimes not falling asleep until 6-7am. Hack your…

Hi. Thank you for posting. Dayum.

re Insomnia & anxiety: Have you ruled out nerve related causes? Maybe injury or impingement?

I ask because my insomnia and anxiety was largely resolved after spinal surgery. A lumbar fusion eliminated maybe 80% of symptoms. Removing cervical (upper spine) bone spurs another 10%.

Prior to that, my doctors had me try all sorts of pharmacological and cognitive treatments. As my symptoms got progressively worse. No one considered a physical cause. That my surgeries helped, necessary for other problems, was just a lucky side effect.

None of my reading about anxiety even hints that feeled emotion can have a physical cause, that the physical sensations of anxiety can induce emotional anxiety. Both a mind blow and facepalm obvious at the same time.

I'm now using gabapentin to manage remaining nerve pain symptoms. (Don't know if I'm up for another surgery.) Works pretty good, but robs me of my "executive function", so caveat emptor.

Good luck. I hope you find some relief.

Re: Ask HN: How do you deal with chronic illness?

#175

Post by syncbehind »

hpagey wrote: post #153
syncbehind wrote: post #70

I guess I can provide an unusual perspective. I've lived with a chronic kidney illness since I was 14. Thankfully my illness does not manifest outwards and I am able to hide symptoms quite well. Even when my kidneys failed, I was able to schedule my life around my dialysis appointments. One of the biggest things that I notice shift as I grow older is that I no longer package my illness and my life separately. I think…

Can I contact you ? If so how?

Sure, I'm @ayushpokh on twitter and IG.

Re: Ask HN: How do you deal with chronic illness?

#176

Post by ddorian43 »

49yearsold wrote: post #96
outime wrote: post #85

Earlier quoted context omitted.

Fasting might be a bit risky at advanced ages but reducing carbs (not only sugar) to the minimum for quite a while and then being very conscious about the intake in the future is the key to success. Also you'll lose some weight which can be good if you're not that slim. Source: two family members on his 50s and 60s completely cured, one was about to use insulin and the other one was using it already for about a year.

I am vegetarian who eats eggs + dairy products; no meat or fish. So it is bit challenging to reduce carbs - but I hear you - I agree - reducing carbs should definitely help. Thanks.

... have you looked at carnivore ?

Re: Ask HN: How do you deal with chronic illness?

#177

Post by Raphmedia »

jointpdf wrote: post #113
Raphmedia wrote: post #11

Earlier quoted context omitted.

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…

Nice comment, but one nit: I think awareness + acceptance + gratitude is a better path than ignoring an illness. I say this as someone that has a lot of deeply ingrained avoidance behaviors (e.g. smoking weed 24/7 to mask anxiety and pain, isolating myself to avoid social anxiety). Obviously, ignoring problems can often make them worse, and sometimes simple solutions do exist (e.g. I have had disabling IBS off and on…

I very much agree. I do not recommend "ignoring" anything, but I wanted to address this point since I saw it coming up in other comment threads. Acceptance is a very good word to describe it. You came up with some great points, I'll do my best to remember them.

Re: Ask HN: How do you deal with chronic illness?

#178

Post by Raphmedia »

jidiculous wrote: post #110
Raphmedia wrote: post #11

Earlier quoted context omitted.

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…

Yeah this is somewhat related to the spoon metaphor[1], right? Basically another term for bandwidth, and acknowledging and accepting that your bandwidth will be at a different place from someone who is healthy. 1: https://en.wikipedia.org/wiki/Spoon_theory

I've read this metaphor and know a lot of people who use it. It's very easy to use and explain, which in my opinion is its power.

I don't personally use it, but I'm sure being aware of it has changed my perspective. That probably explains why you can recognize it in my personal philosophies.

Re: Ask HN: How do you deal with chronic illness?

#179

Post by Raphmedia »

shock wrote: post #154
Karawebnetwork wrote: post #9

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…

> This won't cure it (don't listen to people that say it will) I've learned not to listen to people that say that I can't or it won't.

This is exactly my point. Make your own opinions about everything and don't let someone else's views demoralize you if they are irrelevant to you. :)

Re: Ask HN: How do you deal with chronic illness?

#180

Post by wavepruner »

I lost my entire former life to chronic illness. I got to the point where death was imminent. Just managing symptoms and living whatever life I could wasn't an option.

The best advice I got was to treat it as if I were at war. Nothing else mattered until I won the war, because if I lost, nothing would be left.

This meant I had to find a way to reverse the progression of the illness, which meant an accurate diagnosis and a cure. To do this, I used my environmental engineering background, free access to research (thanks to open access and sci-hub), ability to communicate with others in my position (thanks to social media), and ability to communicate with some of the best biochemists and doctors in the world (thanks again social media).

It took about 4 years of 60+ hour weeks studying biochemistry and anatomy. Well over 10,000 hours. And this is a conservative estimate. My ability to focus on studying was uncanny. It was survival instinct, but instead of focusing on a predator I was focusing on knowledge. I could barely think about anything else even if I tried. Entertainment became boring to me. Relationships became meaningless. I had to find a cure. This was in addition to the previous 10 years of 5-20 hour weeks studying. Part of me knew by age 18 that it was not going to end well unless I figured out what was going on, so I was always learning about my symptoms.

After all that I came to an accurate diagnosis and cure. This was not a linear process. It happened in fits and starts and I went down tangents many times. These tangents all tied together in a unified understanding once I found the root cause.

I've been pursuing treatment for almost 3 years now. Progress has been slow, but nothing short of miraculous, and I expect to make a full recovery within the next 2-5 years.

For those curious, as I always get asked this question on HN, my diagnosis is chronic mercury toxicity, and a key part of the treatment is chelation therapy with emeramide. Emeramide is currently in phase II clinical trials and will probably be approved by the FDA within 5-10 years. The right nutritional supplements, taken in the right forms, and at the right time, is also key. That, unfortunately, gets very messy and controversial, and all the chronically ill people I know spend a tremendous amount of time trying to figure this part out.

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