@AlwaysInFlannel@disabled.social
@AlwaysInFlannel@disabled.social avatar

AlwaysInFlannel

@AlwaysInFlannel@disabled.social

Former librarian. Artist in hibernation. Still a #librarian in my soul. A few interests: #equality, #NEISvoid, #art, #music, #knitting when my hands let me, #PrisonReform, Evie the cat (RIP baby girl), and kindness.

Pronouns: she/her

Pic: Black and white photo of my face partially covered with my hand. One eye can be seen as I look at the camera. I have a buzz haircut and heavy black eye makeup.
Header: A squirrel sitting at open door of bright blue dumpster.

This profile is from a federated server and may be incomplete. Browse more on the original instance.

vlrny, to random
@vlrny@disabled.social avatar

I cut my toenails!

AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

@vlrny Win! ✨

AlwaysInFlannel, to random
@AlwaysInFlannel@disabled.social avatar

Typed then deleted a post because it was too depressing. That's where I am.

Hoping others are doing ok.

vlrny, to random
@vlrny@disabled.social avatar

For those of you following The Saga of Valerie's Bananas Immune System, I met with my immunologist this week, said the prednisone bump sorta helped but not really, so new plan is...

Triple that dose, for five days, as a full system reboot. 😳

So this weekend is gonna be... different.

AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

@vlrny I'm prednisoning it right now, so solidarity I guess. Triple is going to be a ride. Thinking calming immune thoughts for you.

AlwaysInFlannel, to privacy
@AlwaysInFlannel@disabled.social avatar

2/
This was announced like it's definitely happening at the end of the month... which is really close, but I'm hoping they come to their senses first.
They have a block feature, which will be totally useless if anyone can search from OUTSIDE the service.

Ideally, they'll introduce a "private" option for accounts, but it's not their 1st priority.

Watching it unfold and will update.

AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

@mackuba This is true, but I also have the option to set my account to private here. I haven't, but it's possible here and on Twitter. Also, DMs, private group chats on Twitter, etc. So not exactly the same. None are perfect, but there are subtle differences.

vlrny, to random
@vlrny@disabled.social avatar

Me walking around glassy eyed after being awake since stupid o'clock and not able to nap:

No worries! I will make a cup of tea and just f*ing DRENCH it in indica oil.

...wanders around for 20mins puttering in distracted exhaustion fog waiting for kettle to boil.

Never turned it on. 😭

Nap time can't come soon enough, people!

AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

@vlrny A definite win!

tomkindlon, to cfs
@tomkindlon@disabled.social avatar

More weak evidence from the CBT school (subjective outcomes in open-label trials)

Does the effect of CBT for (ME/CFS) vary by patient characteristics?

https://www.cambridge.org/core/journals/psychological-medicine/article/does-the-effect-of-cognitive-behavior-therapy-for-chronic-fatigue-syndrome-mecfs-vary-by-patient-characteristics-a-systematic-review-and-individual-patient-data-metaanalysis/63F43CD7337CA7D005FA5FFE074A341F

No sign of objective measures which were often used e.g. actigraphy, work performance, etc.

@mecfs

1/

AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

@tomkindlon @mecfs CBT is not magic. It would be great if these people would understand that "reframing the problem" still leaves me with a problem.

AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

@tomkindlon @mecfs
A word on reading and participating in CBT studies. I'm sure there are properly run ones, but I participated in one run by a very well known medical center/school and it was unbelievably biased. The only answers available were that it was helping with a symptom or that I was doing something wrong. Not to mention the MAJOR conflict of interest with the funding. Now they're making money off selling training for their CBT program to doctors worldwide. It's frustrating to see.

AlwaysInFlannel, to random
@AlwaysInFlannel@disabled.social avatar

Question for people who have low blood pressure issues. Any recommendations for home blood pressure readers? My current one is giving me an error message when it gets super low because it thinks I can't possibly have the cuff on right (I do). Thanks in advance.

StillIRise1963, to random
@StillIRise1963@mastodon.world avatar

All of a sudden, it's really cold outside.

AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

@StillIRise1963 Right? We’ve lost the in-between seasons. Now we have summer and winter. 30 degree drops in a day. I miss autumn.

AlwaysInFlannel, to random
@AlwaysInFlannel@disabled.social avatar

Novavax Day 1: Arm is a little sore, joints and my muscles are starting to get the ache that is normal for me at the start of EDS and ME flares, and I'm really tired. The only actual pain is my Interstitial Cystitis flaring.

For reference, all of these things occur frequently with me and I expect this after vaccines. Nothing extreme or unexpected today.

AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

Novavax day 2: Switching vaccines was definitely the right decision for me. Arm is still a little sore, but not even as bad as flu shot sore. I’m pretty much back to my baseline of symptoms. Will watch for anything new weird, but am pretty much back to normal weird.

StillIRise1963, to random
@StillIRise1963@mastodon.world avatar

So, are we just giving them the entire fucking nation or what.🙄

AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

@StillIRise1963 Feels like it.

raphaelmorgan, to random
@raphaelmorgan@disabled.social avatar

Some reply guy to the disabled poster of my last boost saying "I know a lot of handicapped people" like my dude you don't even know that most of us don't want to be called handicapped?

AlwaysInFlannel,
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@raphaelmorgan I just had a physical cringe reaction to that.

vlrny, to random
@vlrny@disabled.social avatar

So much of what is going on these days is just so awful and overwhelming I often don't know what to do but sit (meditation) -- getting grounded before you take any action is usually a good idea anyway.

I often don't know how else to support people, or seek support myself. We are all so disconnected geographically, I wonder if we can connect via a tag.

AlwaysInFlannel,
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@vlrny This totally did not make me tear up. (it did.)

Private
AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

@Testoceratops @mutualaid Really happy for you!

StillIRise1963, to random
@StillIRise1963@mastodon.world avatar

Went away to a memorial service for a close friend. Got my kid to stay with the older folks and dog while I was gone. My MIL and father both fell down and had to go to hospital. Father is still there with a small brain bleed. His memory comes and goes. Have a presentation this morning for my new job. Need to go to hospital and go to see my mother to check on her. Ahhh. Life. 🤷🏾‍♀️

AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

@StillIRise1963 I'm sorry for your loss and everything else you are dealing with. As Mary said, please take care of yourself. Hoping you a can have calm moment or two.

AlwaysInFlannel, to random
@AlwaysInFlannel@disabled.social avatar

I am having a hard time getting my head around the fact that my sibling (who I have not seen since January 2020 because she also has been isolating and flying isn't safe for her) is about fly to FLORIDA with a friend to go to Disney. I'm the super-high risk one in the family, but she is also now high risk. She has been so careful and now apparently she has to do THIS for her mental health. Make it make sense.

AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

@shawrd773 This is the only explanation. Always masking, working from home, contactless delivery, then.... lets fly to the place with no protection and share personal space with hundreds of people. I don't know. I don't have the option. The flu right now would be catastrophic for me. Watching others gamble is hard.

IzabelaKaramia, to random
@IzabelaKaramia@writing.exchange avatar

Awake.

Slept okay, but only 8 hours which is short of what I need. I'll feel that this afternoon.

Have a appt with primary dr this morning. I've got my concerns and needs written down so hopefully nothing is forgotten. The office will give a flu shot.

I need to schedule myself for a covid booster. Hopefully one on a Friday to give me a weekend to recover. Covid shots have always provoked at least 24 hours of misery for me.

AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

@IzabelaKaramia Upside down kitty equals complete trust. So adorable.

halcionandon, to melbourne
@halcionandon@disabled.social avatar

Please help me find a /any willing to prescribe patches (or dose equivalent) within 6 days in

Refused meds by GP who promised to prescribe until I found a new GP (he dropped me bc my case is too complex). Changed his mind! Now have 6 days to find any doctor to write a script or agony & no control.

Time running out fast!6️⃣ DAYS 😫

helpful!


@chronicpain @mecfs

@longcovid @chronicillness

AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

@halcionandon @chronicpain @mecfs @longcovid @chronicillness
It sucks you have to go through this. At the very least, they should ease you down to avoid the withdrawal (until you find an MD to treat your pain again).

nathanlovestrees, to animism
@nathanlovestrees@disabled.social avatar

As I struggle to live a more enchanted and animistic life, and to nurture those innate tendencies in my young son, I find the two things that trip me up the most are the automatic use of "it" to refer to nonhumans (he/she is only slightly better but not always applicable) and not knowing how to talk about death in ways that aren't completely disenchanted and mechanistic (we found a dead snake yesterday in the woods). Any ideas?

AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

@nathanlovestrees On death, Daniniel Floor has a few video sessions addressing death, grief, etc on his YouTube channel "Ancestral Medicine." Not sure if this will help in talking to a child, but he has a young child too so it might.

StillIRise1963, to random
@StillIRise1963@mastodon.world avatar

41 + 22 = much older man.

AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

@StillIRise1963 Wondering how many of these long sentences will result in the radicalization of other inmates.

anja, to random German
@anja@chaos.social avatar

night portrait.

AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

@anja This picture is wonderful.

beadsland, to random

That, over three years into this, folk are still complaining about the discomfort of earloops—unaware that better designed masks use straps behind the neck and head, so to get a better seal (that is, better protection)—is a testament to how effectively basic public health communication has been left to DIY word-of-mouth.

But then, folk still complain about their glasses fogging, also, so obviously the memo that a respirator works best when it has a proper seal… hasn't gotten wide dissemination.

AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

@seachanger @beadsland I agree. There's enough room inside them to talk without feeling muffled too.

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