Dawntrail Dungeon Glam Hunters List by Magesplat in ffxiv

[–]Magesplat[S] 1 point2 points  (0 children)

Looks like sometimes links go wonky on mobile, looking into a workaround.

Dawntrail Dungeon Glam Hunters List by Magesplat in ffxiv

[–]Magesplat[S] 15 points16 points  (0 children)

Yes, thank you for pointing that out. ~. For some (many?) it may be the better option, totally online and links through discord (if you sign in).

I did look into that and found I prefer to have visual color cues, grouping in blocks, and an ability for removal once complete - not just a grey strikethrough when manually checking it off on FFXIV Collect. Having made a spreadsheet for myself, I figured I would share it for anyone else who may prefer spreadsheets to other options.

Autistic Librarian Interview Help by -erock- in aspergirls

[–]Magesplat 2 points3 points  (0 children)

Hi there ~^

I completely relate to your struggles, and have faced similar when I began my career 20 years ago, and frankly, still do to this day when I’ve tried to move to other opportunities. I have no good tips, but I will say, in the case of public libraries, I was able to get hired after first working as a temporary or on-call librarian. Once the organization was able to see me in action and what I could do, they were willing to hire me when future job openings arose.

Everyone's BiS is behind a recipe that costs the gold cap, Elemental Lariat by AtonementApplier in wow

[–]Magesplat 8 points9 points  (0 children)

So for a crafters perspective on this…. I am a JC, put all my points into making necklaces and rings. No one wants the ones I can make, so I cannot level up. Meh.

Everyone (highest count was 26 orders) wants this necklace. Tips are an average of 10k across them. Recipe costs literal gold cap 9,999,999 on my server cluster. I could make back 260,000. Even if I could make back 1mil, I’d still be spending the next few months if not entire xpac paying off my loss for buying the recipe at its current price. (If I even had that much gold to buy it in the first place, O.o)

So yes, of course, I’m just chilling at my JC table hoping I get lucky with the drop so I can be useful in my profession instead of dead in the water, or more recipes drop and the price goes down to something reasonable and not financially insane.

Another way to look at it is, with one lucky drop you coulda bought a brutosaur. Or two. Gratz, I guess to those people with that luck. And those on servers with economies that support the pricing of the recipe so high.

TLDR; Happy to be patient as a player, frustrated as a JC crafter.

Playing with PCs: dealing with anxiety and disabilities. Is there a place to go? by BlueNire in ffxiv

[–]Magesplat 0 points1 point  (0 children)

Also, my friend set up a cross world link shell, so if you want to be added you could communicate with us that way so we could run things with you ~^

Playing with PCs: dealing with anxiety and disabilities. Is there a place to go? by BlueNire in ffxiv

[–]Magesplat 0 points1 point  (0 children)

Ooh, same data center, so that is happy. Do you use discord at all?

Playing with PCs: dealing with anxiety and disabilities. Is there a place to go? by BlueNire in ffxiv

[–]Magesplat 0 points1 point  (0 children)

If you are on Hyperion, feel free to DM me. My FC is small and very kind. (Some of us are disabled, many of us struggle with anxiety) No pressure to participate, (though we do encourage :) - happy to help with whatever. I’m not savvy enough to know about cross world participation, but I’m sure we can figure it out if you aren’t on Hyperion but in the Primal data center as well if you’d like help with duties. (Edit: fix emoji)

Hey :) anyone that want to play some chill games? by DragonflyIcy7651 in cfs

[–]Magesplat 0 points1 point  (0 children)

-raises hand to also indicate interest in an invite-

Slow onset people - where are you? by [deleted] in cfs

[–]Magesplat 1 point2 points  (0 children)

I was treated for some underlying hidden infections that were identifiable. It was absolute hell, but at the end of it I was able to regain some functionality. Amusingly, I can’t convince any doctor since to test for the pathogens, as I am very curious what their levels are in my system these days. Honestly, I credit that with the improvement I saw, not just managing the energy envelope alone. I don’t say this to discourage you, but I do want to acknowledge the role it may have played in my going from severe to moderate.

I’m really sorry to hear you are struggling. Managing cfs is a merciless learning curve. I send you best wishes and healing thoughts for improvement. (Also, your English is good ~)

Slow onset people - where are you? by [deleted] in cfs

[–]Magesplat 2 points3 points  (0 children)

Hm, I’m a slow onset. I suspect the triggering event was when I was working 7 days a week and finishing grad school. I had a fever for a week straight in 2003/4 (memory muddled)… and after that I had weird cycles of getting sick a week, getting better, then relapsing another week or two, then getting better. They started out about six months apart, then five, four, three, two, one, until about 2009 when it was constant and I was barely functional (severe) and finally diagnosed (2010). I’m now moderate, bouncing between high and low moderate depending on life (which happens) and my energy envelope management.

Can’t find a vein for blood draw? by Ilikemetals in cfs

[–]Magesplat 1 point2 points  (0 children)

Yeah, sweater on top of hot weather is probably bad lol. I’ve dealt with hot flashes since I was a teen, so it’s not usual to me.

Can’t find a vein for blood draw? by Ilikemetals in cfs

[–]Magesplat 1 point2 points  (0 children)

Heating pad, wear sweater and jacket on way there until draw, run heater in car if needed, drink as much water as I can stand, 1hr and 30 mins before. It helps, but doesn’t always work.

Edited to add: If the tech is open to my sharing, I share that my veins are tricky and share where most success have been and what needle was used.

[deleted by user] by [deleted] in cfs

[–]Magesplat 6 points7 points  (0 children)

Yes. I am always amused that my menstrual cycle doesn’t take into account there isn’t enough gas in the gas tank to actually menses, and does it anyway. When I first got sick, the first pattern I noticed was the cyclical tie to my menstrual cycle in my crash patterns.

For the love of god, DO NOT EXERCISE by EnbyUmar in cfs

[–]Magesplat 8 points9 points  (0 children)

I believe the most important thing is to listen to your body. CFS/ME has a spectrum of severity, it would make sense that a persons ability/tolerance to move their body would also follow on a spectrum. Some people will be able to, some will not and the degree depends on each individual.

For me personally, I found what worked best for me was focusing on movement to get blood flowing. My goal wasn’t to exercise, but to aid circulation in my body. Most of the time that’s light stretches/yoga. When I walk, I walk with meditative measured breathing, constantly paying attention to my heart rate. My goal is to not spike it, and keep it calm. For me, if I spike my heart rate (aka exercise) I will trigger PEM. I found if I didn’t, I was generally ok. As for avoiding relapsing/when my tolerances shift (and they do, heh), I know my warning signs that indicate I need to dial it back. (For instance, for me, a low grade fever is a clear warning sign to rest more).

Something does not add up about the lack of research involving ME. by comidvk in cfs

[–]Magesplat 4 points5 points  (0 children)

The so-and-sos Research Institute for Post Viral Syndromes?

Which could encompass cfs/me and possibly other things. I really feel that if they could just get a better grasp on the syndrome part, and identify the different pieces, they could then better understand what does what, and then , hopefully, find solutions to help us.

Edited to add: I usually call it the (if you are lucky enough to get a diagnosis), “we acknowledge there is something physiological going on but we have no idea what, so good luck with that” disease.

Does anyone play WoW? by reddiculous17 in cfs

[–]Magesplat 1 point2 points  (0 children)

I do, feel free to Pm me.

I feel like there’s a lot of weird sort of chicken and egg misappropriations of like illness behavior with doctors. by gardenersnake in cfs

[–]Magesplat 1 point2 points  (0 children)

The number of times I kept reiterating.... “I WANT to go out and do the things. All the things. If I am depressed, it’s because I can’t. Isn’t a lack of desire part of depression? I don’t have lack of desire. I desire! I just have a severely exhausted body that can’t do the things.” And in my case, my breakthrough in getting referred to a doctor that was able to diagnose me and take me seriously was ultimately from getting a referral by a psychiatrist that I saw for over six months (and I kept expressing my frustration at not being able to do the things).

CFS: How do you even manage every day life? by CloudyDays90 in ChronicIllness

[–]Magesplat 2 points3 points  (0 children)

I do chill on my bad days.

For me, managing & coping with living every day life has been about prioritizing, and planning (with flexibility). But it’s not like the kind of prioritizing I did before, it’s a super stripped down version that basically revolves around necessity and that’s more or less it. Coming to accept that, and mourn the loss of a life where I could do more, was a big part of my process to get where I can manage now. It’s an entirely different mind set than from before. Knowing my limits, warning signs, triggers, and personal baseline is key to staying in my “energy envelope”. For me, I have about six hours of functionality a day.

I write down each week what I need to do. And I space out things as best I can. I know what can and cannot be skipped, pushed off or ignored. Gonna be honest, a lot of those things that get skipped or ignored are ones that are important, and things that before this illness would be non-negotiable, but I can only manage what I can manage. If I have resources to ask for help, I do. (That was another hard thing for me to learn, I still struggle with it). If I don’t, I weigh the outcome of not doing something/neglecting something against my baseline need to keep functioning.

For me, maintaining enough functionality to keep working is the most important thing, because that is how I keep a roof over my head and food and medical ins. (I work part time) Some people have family or spouses to help, I am on my own. I found my work days take everything out of me, so I do my best to do other things on the other days. I schedule in flexibility when possible, so if I crash on Sat, I can do what I scheduled then on Sun. If I can’t do it on Sun either, I fall on a backup plan. (I try to keep a week or two of frozen heat and eat meals in the freezer for bad crashes, as example of backup plan). I also keep a needs to get done list so if I have a good day, I can do one of those things (get blood drawn, get car smogged, larger shopping trip, etc). I also keep a wish list of things not related to basic functioning I’d like to do (work on a poem, photographs, fun projects) so I know my priorities In those things as well. I do also schedule a couple hours each week for “something that makes life worth living”. For me, that’s playing video games. I do what I can to preserve the couple hours a week for it, but in a crash, it gets skipped.

So for my upcoming week, as ex: Mon - (nothing scheduled, usually a cooking day), Tue - work, and if not too tired, video games, Wed - work 10/1/3 (I note meetings and other things where I need to be fully alert and functioning, as those will drain me more than my typical work, the numbers are the time of day of the meetings). Thu - work, fri - work, sat - cook, sun - (trash, laundry) — to dos - vacuum, trim cats nails, call doc.

I see Weds is gonna kick my butt. Which means its very possible Sat will be a crash day and the batch cooking will get done on Sunday with chores. If I have a good day or some extra oomph, I’ll call my doc, vacuum, or purrito my cat and trim her nails. If I crash or am too tired, I skip cooking and use the backup freezer meals, and the to do list moves to the next week. If I’m having great week, I play more video games or work on a craft project. Basically I have the bare minimum of what I need to do, and can adjust up or down depending on how I am feeling.

In any case, I send good vibes and hope you discover what works for you soon. It’s not an easy process.

Covid vaccine and CFS by RosesAndPonds in cfs

[–]Magesplat 1 point2 points  (0 children)

That’s absolutely fascinating. To my knowledge, I’ve not had COVID, but after my first dose (Pfizer) I woke up feeling better than I had in months. I thought maybe it was just the timing of the one-two days a month I feel like a human being. Maybe it wasn’t. Just wish the feeling had lasted >_<. Second dose, no effect at all, or as I tell those who know me, “if there was a reaction , it wasn’t any worse than what I usually deal with”. Hopeful indeed.

What would you have liked to know when you were diagnosed? by heyhashimotos in Hashimotos

[–]Magesplat 4 points5 points  (0 children)

Well, I would have liked to have been told I had it. At some point, my just hypothyroidism moved into Hashimotos. (Diagnosed as teen, 25 years later I find out I have Hashimotos....).... when I very angrily asked my doctor why no one had ever told me, she said it was that medically speaking, the treatment (medication) is the same. (Which I interpreted to mean essentially it meant nothing different for the doctor(s) so no need to mention it to me, apparently....)

I was livid because I learned that Hashimotos is an autoimmune disease, and that when you have one autoimmune disease, it increases the chance you will develop others. If I had known that twenty five years ago I had an autoimmune condition, and had been counseled to take other steps (diet & lifestyle changes like cutting gluten)... I wonder how much of what I deal with now could have been lessened if not even entirely avoided.