108beads

joined 2 years ago
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[–] 108beads@lemm.ee 1 points 2 years ago

Been there, done that. I probably had Covid twice, but one seemed asymptomatic. (Fully vaxxed each time.) The first time, had only a household member with Covid and some low blood-oxygen readings. The second time, felt like a bad case of flu, tested positive.

Covid seemed to linger for a longer time than most other viral infections I've had. Low energy, draggy, for a good month or two after I was physically "recovered." That I needed to self-quarantine, and my inability to get basic ADLs (activities of daily living) done efficiently contributed to feelings of depression. There was probably also a physiological Covid-related component to my feeling overall "down" as well.

It will pass, eventually (fingers crossed). It just seemed to take longer than run-of-the-mill illnesses. Be gentle with yourself.

[–] 108beads@lemm.ee 3 points 2 years ago

And for heaven's sake, start an investment retirement account now. Yeah, I know, "but I'm not making enough, but there's that shiny thing in the (online) store window, but I'm never going to get old." Just allot one take-out coffee's worth of spare change per week. You can up the ante later. Let the miracle of compound interest do its thing.

[–] 108beads@lemm.ee 2 points 2 years ago* (last edited 2 years ago)

Welcome to for-profit healthcare in America. It's no longer about your health. It's about their profits. (But—muh freedomz!)

[–] 108beads@lemm.ee 1 points 2 years ago

That you're posting here suggests you really don't want to take action. That's a good start.

I urge you to seek professional counseling to work on processing this horrible experience. It won't go away if you follow through with violent plans. While you may feel like it would release your from the "prison of your mind," I can assure you it will not. And you're more likely to find yourself if literal prison.

I was raped when I was 17. I've never said thst anywhere in print, and rarely speak about it in person. I'm 68 now. I recall the details vividly.

I'm saying it now to you so you know I am speaking from hard experience, not just blathering. Revenge will not release you. And: you will be shaped by the experience. You cannot change that. But far more importantly, you do not need to be defined by it.

I refuse to have my life defined by one stupid person's thoughtless, egregiously cruel act (or even several people, several acts). You are better than that, stronger than that. I refuse to give anyone that power. It's not about forgetting anything. It's about forging it through your own will into one event, among many, that make you who you are, and who you can be.

[–] 108beads@lemm.ee 4 points 2 years ago

An occasional thought that flits by, dissipates quickly, likely not an issue. But by definition, "intrusive" means a thought that nags, disrupts, is unwelcome in frequency, intensity. It would be worth finding a therapist to get to the reason, the source—and to find better ways to defuse or address these thoughts. They aren't there "for no reason at all." With a clearer sense of the reason, you can seek better ways to address the root cause.

[–] 108beads@lemm.ee 3 points 2 years ago (1 children)

Can't do tech very well, but give me needle, thread, and I can mend! Nobody does that anymore, either.

 

There’s a test for that: the Holmes and Rahe Stress Scale. You can look up that term online for more information. I’ve linked to one source that has a decent, short explanation, and the complete scale itself. Other sites can offer more in-depth perspective.

You may need to adjust some of the items for your specific circumstances. Note that the scale indicates that even “good” stuff in our lives (as well as, duh, “bad” stuff) can contribute to overall feelings of being off-kilter, out of it, not quite firing on all cylinders.

[–] 108beads@lemm.ee 7 points 2 years ago (1 children)

It sounds like you may be feeling very self-conscious about interactions. It took me a long time to learn, but much of the time (I've come to realize), "they ain't studying on me." Like—other people aren't scrutinizing me or judging me as much as I think they are.

Plenty of people are so wrapped up up in their own heads that they aren't paying you any attention, perhaps not realizing how you are reading their responses to you.

Maybe it's just me getting older, but "when I am an old woman, I shall wear purple." If others think I'm dressed weird or acting oddly—what of it? I don't need (and can't have) everyone's approval. Sure—there are limits; I don't want to endanger myself or others, or provoke hostility. I don't want to be mean to anyone.

If you make overtures of friendship and kindness and are turned away, that says a lot more about others than it does about you.

[–] 108beads@lemm.ee 6 points 2 years ago

There are a number of resources pinned on this community for those in need of extra help.

[–] 108beads@lemm.ee 2 points 2 years ago

I'm so glad you took the time to update! It sounds like, although it was an unpleasant experience, you made good use of it by figuring out what was behind the feelings, what was motivating your downward spiral, and what you can do to help yourself get back on track.

I know it's easier said than done, and something I struggle with too—but don't let the perfect become the enemy of the good. As in, maybe you'll try and not get it absolutely perfect. But doing a "good enough" job is sometimes (often?) better than doing nothing at all. We all make mistakes, even with the best of intentions and effort. But the only real "failure" is screwing up, and not learning anything from it. I think it was Einstein who said "The definition of insanity is doing the same thing over and over again, and expecting different results."

Thank you for asking how I'm doing! Well—muddling through. Sitting in a nursing home with my partner who has Alzheimer's, where I visit her every day. Not what I wanted for my retirement. I try to look for good things, small things. She still knows who I am, and we still love each other. I'm comfortable financially. I'm going to see my friends in church tomorrow; hopefully, the meditation class I'll be teaching will go over well. Trying to get motivated to mow the yard!

Be well, my friend, and take good care of yourself. We all have ups and downs; give yourself what you need to pick yourself up again.

[–] 108beads@lemm.ee 1 points 2 years ago (1 children)

Absolutely! Toasted, with ketchup!

[–] 108beads@lemm.ee 1 points 2 years ago (1 children)

Sorry, absolutely no clue—like at least 30-40 years ago.

[–] 108beads@lemm.ee 7 points 2 years ago (3 children)

Sleep tight. Don't let the bedbugs bite. And if they do? Bite them back!

 

I don’t want to claim that meditation is the answer to every mental health problem. But it’s helped me, and I sometimes recommend trying it, particularly mindfulness. (And you can do mindfulness seated and at rest, or walking, or any number of routine activities—just not driving, please!).

I’ve heard a number of people say “But I just can’t still my thoughts! My mind is racing, and I give up feeling more defeated than ever!”

Mindfulness is not about forcing your mind to stop thinking. Rather, it’s about becoming aware of what you’re thinking… and then letting the thought go.

I’ve linked an article I found recently that explains it really well. TLDR (though it’s worth reading in full): A Tibetan Buddhist monk, chosen as the reincarnation of a revered predecessor, absolutely loathed being a monk as a teenager. He was angry, snarly, irritated, and a great vexation to his teachers. Angry thoughts constantly interrupted his meditation practice (and everyone around him).

One teacher gave him some advice: when you meditate, don’t be like a dog; be like a lion.


“When you throw a stone at a dog, what does he do?” he asked.

“The dog chases the stone,” I replied.

He said that was exactly what I was doing, acting like a dog—chasing each thought that came at me…

“When you throw a stone at a lion,” he continued, “the lion doesn’t care about the stone at all. Instead, it immediately turns to see who is throwing the stone. Now think about it: if someone is throwing stones at a lion, what happens next when the lion turns to look?”

“The person throwing the stone either runs away or gets eaten,” I said.

“Right you are,” said my teacher. “Either way, no more stones!… Instead of chasing the anger, grabbing it, and holding on, just be aware. Just be very gently aware of the anger instead of getting involved. Don’t reject it, but don’t dwell on it either. Just turn your attention to look gently at the thought. At that moment of turning inward to just observe, the thought will dissolve. At that moment, just exhale and rest.”

 

Interesting read on how media portrayal of people with disabilities shapes perception of them as "deserving" of accommodations under ADA, or not.

 

I was on Farcebook earlier today, and caught not one, but two ads using the hashtag #dementiaawareness. (I was looking for something else.) I reported them to Farcebook as lies, and they disappeared, so sadly I can't share screenshots.

But basically, y'all know the drill: "Did you know you can cure dementia with this one simple thing?" I had to double-check—yup, it was "sponsored content." Someone paid to put it there.

Clicked through to a long rambling bunch of yadda yadda, coming from a Very Important MD with Very Big Credentials (you can read that in tRump's voice if you wish…), who has seen through the falsehoods of conventional therapies. Yes, all of the side-effects which the (white, male, pretty-boy) doctor lists for donepezil are truthful. Similar padding and truthful (but partial) information about other established medical interventions.

After pages and pages of half-truths, we get to the point: all you have to do to permanently reverse and cure dementia is buy our cannabis gummies! Here is a picture of Jane Doe with dementia, and here is a picture of Jane Doe after just one week taking our gummies! Wow!!!

 

Alz.org is the website for the US based Alzheimer’s Association. They focus primarily on Alzheimer’s, but also contain some material on other forms of dementia.

The site interface is designed to be easy to navigate for those who are not medical professionals, but digging through some of the menus will get you to refereed journal articles and other professional resources, as well as granular suggestions for caregivers seeking to offer dignified, appropriate levels of support for loved ones.

Of special interest: their phone hotline, available 24/7. From my experience, they seem to have a vast phone-tree of specialist consultants—so you can call in to vent, ask for tips and strategies, or to get pointed in the right direction for independent research.

I was especially impressed with their ability to get me connected to local resources—lists of adult daycare, nursing homes & memory care, checklists on how to evaluate offerings, and so on. So often, I’ve asked for help through insurance company reps, or doctors’ offices, or dug up stuff myself online—only to find it’s outdated or contains information that isn’t useful.

 

I tried posting on a Discord for people with/caregiving for those with dementia. Got a nibble of interest, got pinned by the mod, wrote out detailed instructions on how to get on Lemmy and find us… Possibly the geek level killed interest.

The Discord is pretty quiet, except for incoming bot posts, an IFTTT feed directly from r/dementia to the Discord. (It's one-way, we can see them on Discord, but they can't see us.) Is it worth posting in Reddit, do you think? I'm wondering if I even mention Lemmy, whether I'll get permabanned from Reddit.

 

Thank you, ZenGrammy! I don't have the time or the tech chops, and was hoping someone would start a community like this. I'm a Reddit refugee who was active on r/Dementia, r/Alzheimers, r/Caregivers, etc. (Edit: and a handful of Discords, an Alz.org Zoom group… lots of support!)

My sweetie—I call her my "Beloved Dementor"—was misdiagnosed for a good decade with psych problems. She does have those (anxiety, depression), but PCP & therapists brushed off refereed medical journal articles I tried to show them, as well as the info that Alz runs in her bio-family.

She's only at roughly stage 4 cognitively. But the effort of masking for so many years, the Alz erosion of executive function (motivation, cause/effect reasoning), the personality reversal from outgoing to shrinking violet—made her decide to stay abed for several years. Lost muscle tone from that, plus Alz-related apraxia and a Parkinsonian tremor.

Inevitably she lost ability to walk, fell, and from ER went to a Roach Motel of a skilled nursing facility where she flunked out of rehab. Incontinence and reliance on a Hoyer lift make it impossible for me to adequately care for her at home—my arthritis and age (pushing 70), inaccessible house, lack of backup community if I fall ill, shortage of aides, and her self-imposed social outlets all point to "nope, not gonna work, at least not longterm."

She's still my sweetie of 26 years. I visit daily. &

Best resources: Alzheimer's Association (Alz.org), and the book The 36-Hour Day.

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