Ask HN: Developers living with CFS, what are your tips?

[windrince]

For 20 years I've been a developer, cycling between non-restorative sleep and heavy fatigue (with brain fog).

It's incredibly hard: my brain is either not wanting to accept any input or it's burned out and sleep deprived.

I get all my work done on time, but always feel guilty and incapable for taking so many breaks.

I've taken less money to work for a company that offers me 7 hour days with reasonable workloads.

It seems to get harder every year and there's no way I can do this for another 25 of them.

Those with CFS (and I know the severity of this illness can vary greatly):

- How often do you break? - Do you have any career tips for those living with this disorder? - Do you have any lifestyle tips for living with this disorder?

For anyone:

- Are there any other software related positions that aren't as stressful (that don't involve talking to people, as I often can't always follow). - Are there any tips for retiring early in this field? I've been trying to be more frugal, which is surprisingly fun.

[AnimalMuppet]

> I get all my work done on time, but always feel guilty and incapable for taking so many breaks.

You get all your work done on time? Then don't feel guilty. You could be calling in magical fairies to write your code, and they do it because they owe you for that one time you saved their kingdom. Doesn't matter. You're getting done what they pay you to get done. If you take 7 hours of breaks and get the work done in one hour, you got it done when they asked you to. You did the work, you take the pay.

You sound like you're feeling guilty for not doing more. But you're doing what you can, and it's enough.

[Edit: Looking at your reply to ksnape, you're not only getting your work done, you're one of the few who do? You're outperforming almost everyone else. Route that guilt to /dev/null, take the breaks you need, and keep delivering.]

[xupybd]

Pretty much this.

Sounds like you are doing better than you think you are. I know CFS is making life hard but your feedback loops might be making it harder. If you work hard and feel like you are failing, that can lead to burnout. Sometimes you need to realize that you're actually doing great. Allow yourself the joy of working hard and feeling good about it.

As for brain fog. I find listening to Binaural Beats with noise cancelling headphones really helps me. Most of my brain fog comes from my inability to ignore the world around and get a good focus on. Distractions cause context switching, context switching causes my memory to get overloaded.

Lots of small breaks help too. Sounds like you're doing that. Small breaks are a good way to refocus don't feel guilty about taking them.

[windrince]

Ha. Thanks, AnimalMuppet.

[AnimalMuppet]

Love your username, by the way.

[ksnape]

I suffer from similar circumstances, and am not a developer but in the tech/software field.

I'm mostly eager to hear others input as well, but I suppose I have a little input to share.

Have you tried radical transparency with new potential employers? Applying to and approaching application processes while being as upfront as you can be about your circumstances?

I ask both suspecting it may bring different results, but also curious if others have tried. I have had poor results with it, but my introduction during screening / 1st-4th round calls tends to be vague when referencing disability, but at least trying to mention it.

[windrince]

Thanks for the reply. My boss started a few weeks after me and I was upfront with him -- though, I didn't specify I had chronic fatigue syndrome, as I'm always afraid that people will think lesser about my quality of work for some unjustified reason. He's been really accommodating of my needs, but I'm also one of the few to get everything done on time, which I'm sure helps.

Edit: to be more specific, I told him about my sleep issues and made it clear that I could not work outside of 9-5.

[ksnape]

I hear ya. I've reported to people who just didn't get it, and assumed it was an excuse to be lazy. I've also reported to people who totally understood disability and the acquired neurodiversity that often accompanies it.

I suppose you can't active seek the latter, without having a framework and criteria for doing so -- which cements my personal thoughts on the need for radical transparency. The format of that I'm still struggling with :)

[_9omd]

I've struggled with sleep issues and fatigue and done a lot of research and experimentation over the years, so I can offer some ideas of things you may want to look into and try. The problem is that it is not a disease that can be treated mechanically, but it is the bodies response to overwhelming biological stress, and that stress can have many faces. There are so many possible causes, that it's very unlikely your doctor will be able to get to the root of it, as they simply can't spend that much time on a single patient. A lot of research and experimentation is going to be needed on your part if you want to figure out the best interventions for your case and start getting better.

First let's talk about sleep, since it sounds like it could be a major component of this. Have you had a sleep study, do you have sleep apnea or any other kind of sleep condition? I never tested positive for sleep apnea, but I know for a fact (personal experience and experience of partners) that I do sometimes have breathing disturbances at night which seem to impact my sleep negatively. There are some things you could try if you suspect the same. Ideally, you want to be breathing gently through your nose the entire night, as mouth breathing (esp. during sleep) leads to hyperventilation, which reduces blood CO2 concentration too much, which makes oxygen less available to tissues (See Bohr effect) and causes a number of issues leading to non-restorative sleep.

A few potential remedies for this are the following. Tape your mouth shut before bed, using a postage size piece of micropore medical tape in the middle of your lips [2]. It sounds crazy but many people find it effective. Or you can see about having your dentist make you a mouth guard, or just buying one off the shelf. Or (and also in addition), do breathing exercises before bed (like box breathing or Buteyko breathing), to calm the breath and get into a slow steady nasal breathing pattern.

If you suspect nighttime adrenaline and cortisol may be a problem (nightmares?), you can experiment with either eating right before bed or taking supplements. Magnesium and l-theanine would be a good combo to try. You can also try having a balanced snack before bed with carb/protein/fat, which will keep your blood sugar up during the night and prevent hypoglycemia. Eating before bed is obviously not ideal, but it can be a useful intervention to help sleep in the short term. Sodium before bed may also help keep nocturnal stress hormones low, and you can take just salt in water or have a salty snack [3].

Do you have any kind of sleep tracker? I use an apple watch and the AutoSleep app. It's not perfect, and obviously a simple wrist tracker can't accurately monitor REM sleep. However, there is a strong correlation between my sleep results in the app and things I've done prior to bed, so it's useful for tracking things at a coarse grain.

There's some research I've seen that CFS is sometimes linked to low blood volume [1], and I've personally found supplementing electrolytes to be very beneficial. I think it makes a lot of logical sense, because CFS seems to be a symptom of too much stress on the body, and stress hormones like cortisol cause wasting of electrolytes. This is also a possible explanation for your brain fog. Pick up an electrolyte powder and give it a try, there isn't much downside. Also note that most electrolyte powders have less than optimal amount of salt, so unless you have an existing condition regulating sodium, you should try adding additional salt too [3]. Some other supplements I've found useful for fatigue are a b complex, taurine, and creatine.

1) https://www.healthrising.org/treating-chronic-fatigue-syndro...

2) https://www.mrjamesnestor.com/breath

3) https://www.penguinrandomhouse.com/books/545379/the-salt-fix...

[ksnape]

hi5 for the response, just gotta say. Much appreciated.

[_9omd]

I'm happy to share more too, if you have questions about other things I've looked into and tried. I didn't even dive into nutrition, digestion, exercise, dealing with emotional trauma, etc. as I didn't want to overwhelm OP. It really frustrates me that we have these mysterious "diseases" like CFS, which in my opinion is really just your doctor throwing up their hands and saying they don't know what the hell is going on. I simply refuse to accept that management of a condition is the best we can do for people.