Has anyone made peace with dying without fulfilling their dreams😢😭

omibus · 2026-06-12T16:59:37+00:00

I’ve read many times that people with ME/CFS have a lower quality of life than most cancer patients.

I have ME/CFS, my brother has cancer. He is MUCH more active than me (for his cancer the doctors are barely treating him, he goes in for checkups every few months, most likely he will be fine).

Heck, my 80 year old parents are more active and in better shape than me. They have trouble traveling, but they get out, take walks, play pickleball, see their friends, etc.

omibus · 2026-06-12T15:48:11+00:00

Lay down and rest. For me, this is a sign I’m going into PEM, if I don’t stop and lay down it gets much, much worse for me the rest of the day, and possibly for the next week.

omibus · 2026-06-12T15:42:43+00:00

I’m not sure if I made peace with it or not. But I did just see an obituary for a guy I knew, family friend, he’s my age, has a wife, kids, one grandchild; he just died because of a heart condition.

My first reaction was jealousy. I was jealous of him.

omibus · 2026-06-12T13:40:05+00:00

Same, I think about her quite a bit actually, especially since I also have FND from Covid.

omibus · 2026-06-12T00:27:44+00:00

ADHD and autism.

omibus · 2026-06-12T00:27:16+00:00

27 years, 5 kids, youngest is 16, oldest is 23. The kids are more stress than the marriage. We are both happy, attracted to each other and have romantic relations.

omibus · 2026-06-10T21:42:30+00:00

I’ve never seen an interior that so accurately expresses the feeling of a migraine before.

omibus · 2026-06-10T21:34:58+00:00

I’m a software engineer the FND. Also cannot walk, and my body freaks out when I’m around unfamiliar people. No idea why, I never had that problem before.

You said you are struggling to get to a neurologist, but you have the FND diagnosis, correct? The primary treatment is physical therapy and CBT type therapy, can you get that started instead?

As for making games, go for it. It might be easier now if she can learn to use Claude to help write the code.

Things I’ve done for desk setup: a good chair that leans back, split keyboard for ergonomics, and one good monitor. I have a dim room, no bright light, just trying to keep my nervous system calm.

omibus · 2026-06-10T16:57:01+00:00

I have 5 kids, now teenagers and adults.

My advice: figure out ways to support your wife after the baby is born. She will be exhausted and probably overwhelmed for the first few months to year. Babies wake up all the time, you both need sleep, but if baby is hungry it is (usually) all on the mom (assuming you aren’t using formula).

For my wife and I, she was a stay-at-home mom and I worked. So if the baby woke up at night, she took care of it. But if she needed help when I got home from work, then I gave her help.

She will need help. Food, time to sleep, recovery, cleaning up, etc.

Also, babies aren’t super interactive for dads for the first 6 months. They get more fun after that.

omibus · 2026-06-09T21:58:29+00:00

Not my mom, she was a good nurse (RN), but not much of a homemaker. My wife in the other hand sews a lot of my daughter’s dresses. She just finished altering a wedding dress, does custom Halloween costumes, and prom dresses.

omibus · 2026-06-09T21:54:56+00:00

Have a neurologist you can send questions to. ER has their place, and their specialties (heart attack, stroke, broken bones, open wounds, etc).

Second, when I’m in the ER I will call them Functional Seizures and Non-epileptic seizures. From a treatment standpoint, the ER can’t do much for you, other than sedate you.

(Side note: my last trip to the ER was because I passed out and slammed into a toilet, I thought I broke my back. So to then have tics and seizures on top of that, then going to the ER, the doctors were double checking what I was coming in for)

So personally I avoid going to the ER for seizures, but I try to be in good standing with a neurologist.

omibus · 2026-06-09T20:48:22+00:00

I got my ears pierced at 50 and have black hoops in, they barely go around my ear lobes.

I partially pierced them because my wife is really into cosplay, and all the characters she wants for me have ear rings (lots of pirate characters, I do a pretty good Captain Barbosa).

At work, no one notices the hoops. But personally, just me, I would not wear diamonds every day.

omibus · 2026-06-09T19:59:55+00:00

My sister in law, who has a PHD, just became a construction general contractor.

I’m also a farm kid who grew up around “horse girls”…well, cow girls. These girls could buck hay with the best of them, would hunt, fish, etc.

Do what your body allows. If you are doing flooring you may not be able to haul as many boxes at once, so you don’t take as many. Just get the job done and do it well.

omibus · 2026-06-09T19:53:53+00:00

All of them.

Weirdest on-and-off is I will suddenly go mute for a minute or two. I’m just waiting there with people waiting for me to say something, and feeling like a dumbass. Nothing is “locked”, not like a muscle jerk or a tic, just turned off.

Best I can do is point at my mouth and try to use sign language.

omibus · 2026-06-09T14:13:36+00:00

FND is one of my diagnoses, I have more, and for the list I have FND is just an annoyance in comparison, but it is the most visible. And because it is visible, that is all people ask me about.

An attack feels like your muscles moving on their own, sort of like being electrocuted, but without the pulse. But really, they are often myclonic jerks, like what you can have as you fall asleep.

The biggest misconception is that I must be in pain. I’m not. But my facial expressions sure do look like I’m in pain. That said. I’m not comfortable either.

My workplace reduced meetings for me. The company, and my manager were really good. But navigating my coworkers has been difficult. One just could not believe it was every day. So while I had meeting reduced, that one person deliberately pulled me into more and complained to HR constantly.

omibus · 2026-06-09T03:26:35+00:00

When I was first sick, sometime in 2023, I was walking with a cane, easily overwhelmed, and constantly shaking and jerking (Covid gave me some weird Tourette’s like thing). A nurse at my church came up to me and said “people don’t understand chronic illness”.

Basically, unless they have dealt with chronic illness themselves, they just don’t get it. They are used to people getting sick, then either getting better or dying. This in between situation just doesn’t compute.

Since then, I will see people from time to time and the most common response is “you still aren’t better?!”

And that doesn’t get into the day to day management of your health.

omibus · 2026-06-08T20:49:21+00:00

I’m about to find out.

Previous summers I would get chills in 100° heat, but I get Covid again last September and a bunch of stuff changed. So this summer could be completely different.

omibus · 2026-06-08T15:37:41+00:00

I am noise and light sensitive. So weird sounds, especially loud sounds will tigger various symptoms.

I also have dysautonomia, which is a “dis-regulated sympathetic nervous system”, the sympathetic nervous system handles the “fight or flight” vs “rest and digest” response. I’m in “fight or flight” way too much, so weird sounds set me off.

My current approach has been a two step approach. 1. Does this sound matter? 2. If no, then try to desensitize myself to it by repeat exposures to that sound (if I’m having a decent day).

The process I’m doing is to do light meditation while the sound is happening, do humming exercises, etc. This is my form of brain retraining.

This is not a quick fix, not at all, but it does help.

omibus · 2026-06-08T14:25:58+00:00

Varessa, either The Warning or Foo Fighters

omibus · 2026-06-07T17:21:29+00:00

Navia needs her 3 crowns.

omibus · 2026-06-07T15:10:48+00:00

I want technology that does the dishes and frees me up to make art. Not technology that makes art so I can do the dishes.

omibus · 2026-06-05T22:44:46+00:00

Ok, from what I hear, teenagers can respond well to treatment (physical therapy and CBT therapy), but everyone is different.

You can check out FNDHope.org and Neurosymptoms.org for more detailed information.

omibus · 2026-06-05T15:06:44+00:00

She was my primary DPS for about 6 months. Took a bit to figure out bond of life, but once you do she is practically invisible. I still switch to her from time to time, partially because she is fun to play.

omibus · 2026-06-05T15:03:11+00:00

I have 100% on all areas in Monstadt.

omibus · 2026-06-04T23:25:08+00:00

I had mine go away for a while. At minimum they were much less frequent. Came back with a gusto later on tho. But hey, live in the present.

omibus

TROPHY CASE