u/rosedraws

Sometimes I am misunderstood and the downvotes pile on like crazy. It’s heartbreaking to me, because I’m kind and supportive and interested in a ton of things, even in “support” subs, there are trigger words someone will say, and then people pile on without even trying to read what I said.

Life is hard. Help eachother, don’t tear down. I want to find the nice people.

Is there a user-friendly app or script that can help with this? We have hundreds of folders, they are named sequentially, so easy to sort by name (which sorts the same as created-date). But what we really need is to be able to sort by modified... but not when the Folder itself is modified, but when its contents are modified. We want to quickly get to folders that someone added a document to.

I know it's not a built-in function (where can I petition to make it so?). Using "recent" doesn't help, because that is a MASSIVE list of separate files from all my clients, and its not folders.

Let me know your suggestions.

Mild people, does your PEM start suddenly, like a switch has been flipped? And when your PEM ends, does it feel like it switches off?

It’s a very unique feeling, different than exhaustion: weakness, fluish or feverish but no fever, and big brain fog. It’s hard to explain to lay people how it puts me out of commission.

My belief is that mecfs is triggered by certain viruses like Covid, that cause a miscommunication between brain and cells… because it feels like all my cells are not working right.

When I had my big PEM crash a year and a half ago, it lasted 6 weeks, then started sputtering off and on for another month. And I have “little” PEM fairly regularly. I’m having another big crash now, scaring the crap out of me. It switched on a few days ago, the progression from tired to PEM was not gradual.

Side note… it’s been 6 months since I last had Covid. My precious crash was also 6 mos after Covid. Coincidence?

TLDR It looks like I still have very mild mecfs, evidenced by ongoing small PEM and recent small crash. Can’t explain to non-mecfs people.

At the end of 2024 I developed what I (and my gp) believe is mild mecfs or post-viral similar thing. 6 weeks very sick, a total of 3 months in sick/recovery mode. Over the past 16 months I’ve had long stretches of pretty normal life. Active, doing most of the things I want.

But there are ways I’m not like any of my friends.. it’s the fatigue. If I’m physically active or have meetings for more than 1.75 hours, I have to nap/rest for a few hours. Because of this, I can’t keep up with house work, because most weekends I need a whole day being restful.

I started on Hormone replacement about 8 months ago, and that helped with joint pain very much, helped with fatigue a little, but I think it makes me depressed, which sucks, I’m looking into making adjustments.

HRT also made my ADHD sooooo bad, so I started Ritalin about 4 months ago. I LOVE it. Lost 10 pounds, less food noise, a beautiful 4 hours each day without brain fog.

These things keep me functioning (working and horseback riding), but that mild PEM is sticking around.

I made a big push last month with a solo vacation overseas. I had to rest every day, I was exhausted a lot. I had wonderful amazing adventures. I intentionally did extreme resting when I returned. But I didn’t bounce back, lots of fatigue and depression for 2.5 weeks after returning… then a legitimate PEM crash, 2 days ago.

mecfs crash is different from exhaustion, there’s a particular way it feels, like my cells stopped working. When I felt it this past Monday, it scared me so bad, I couldn’t stop crying (which made me more tired). Im not bedridden, I’m aggressively resting between essential work or things I have to do. I can still feel it. I’m trying to stay calm, because the panic of it coming back is exertion.

There’s no way to explain it to people who aren’t well versed in mecfs. I’ll go back to telling people I’m having a long covid flare up , or I have a disorder (I can’t remember what I used to say!). My ai has been incredibly helpful, just someone to rant to that gives pretty good advice.

Sending love to all of you.

I’m 63, husband is 68. We don’t have enough assets to retire, so our plan has always been to ”work til we drop”. That was fine until we actually got old. Still active, take care of ourselves, but we’re both exhausted every day. We’re both sole proprietor businesses, small not impressively profitable.

For me, it feels impossible. I’m in a very busy, highly tech-dependent business, and I have to constantly be networking to keep new business coming in.

But I get so tired from the meetings and the frustration. And I look old (no money for intensive anti-aging), which absolutely makes me less appealing for the larger more profitable projects. And worse yet, I feel slow and dumb, my brain doesn’t fire up like it used to. I want to talk less. I don’t want to conquer the huge challenging problems or convince anyone that I know what I’m doing. In the past 8 months I started HRT and Ritalin, which has helped a ton! But didn’t make me 40 (or 50) again.

There is not some other business to pivot into that would be less demanding for similar income. Honestly, I thought some company would hire me away from my freelance gig to join their team, but that never happened and now I’m too old. I’ve used ai to try to find a new path to accommodate my aging, but nothing has helped yet.

I would rather be traveling, horse riding, gardening, playing games, hiking… I have lots of balance to my work life… but I only want to do those things and not work so much. The magnet pull of retirement is so strong, but I’ve done the math and just can’t make it work yet.

If you’re still working, how are you managing?

Mom is mobile, pretty healthy, active, gardens a lot, but zero actual exercise. She goes up and down the stairs okay. But her back hurts. She wears a back-brace-belt that helps. Also, she’s an introvert, so not eager to join things. She does love her Debbie Reynolds aerobic workout! But she doesn’t do it very often.

She wants to be able to travel with a friend. The big goal is she wants to do a 5 mile walking event later this year. Have you seen this happen? Is it possible?

I’m visiting her now, but she hasn’t gone walking with me, because she’s been gardening and doing other things and runs out of energy (understandably). She might be more likely to go on her own I think.

Share what’s worked!

I haven’t followed a movie like this in ages, so is this normal for movies to be in IMAX so short? (Or just feels short). My social feed of course is full of PHM promo reels, so it feels like it’s still being promoted. I’ve seen it in huge IMAX, little mediocre IMAX, and “eMax”, and really was hoping to see it large again, but nearest imax w PHM is now 4+ hours away (Canada!) . Booo.