@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.

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.

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.

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 #sitTogether tag.

AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

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

Private
AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

@Testoceratops @mutualaid Really happy for you!

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?

#animism

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

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.

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.

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!

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.

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 #CFS (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

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE

1/

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,
@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, 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.

#Privacy #Bluesky #Safety #SocialMedia

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.

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.
#NEISvoid #Covid #ChronicIllness

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.

AlwaysInFlannel, to accessibility
@AlwaysInFlannel@disabled.social avatar

Well, sh*t. I've put off accessibility aids (the more visible ones at least) for too long. Today was a day standing up and maintaining my balance was just not going to happen. Guess I'm finally looking for that long overdue shower chair now. Ideally it would be compact so I can take it out when I'm not using it. Any suggestions appreciated.

AlwaysInFlannel, to random
@AlwaysInFlannel@disabled.social avatar

So... grief. What the hell do people do to be ok after loss? In a one month time period, I lost a friend and also my support animal, Evie. It's been a little over a month and I am not ok. Why do we not learn about this as kids? Everyone is going to experience it many times, but here we are just flailing around for something, anything that will help. If anything has been helpful to you, please let me know. I don't do religion, but am ok hearing if it helped you.

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,
@AlwaysInFlannel@disabled.social avatar

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

vlrny, to random
@vlrny@disabled.social avatar

I cut my toenails!

#boringSelfCare #achievementUnlocked

AlwaysInFlannel,
@AlwaysInFlannel@disabled.social avatar

@vlrny Win! ✨

halcionandon, to melbourne
@halcionandon@disabled.social avatar

Please help me find a #GP/any #doctor willing to prescribe #fentanyl patches (or dose equivalent) within 6 days in #Melbourne #Australia

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 #withdrawal agony & no #pain control.

Time running out fast!6️⃣ DAYS 😫

#Boosts helpful!

#ChronicPain
@chronicpain @mecfs #MECFS
#PwME #MedMastodon
@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).
#NEISvoid

AlwaysInFlannel, to random
@AlwaysInFlannel@disabled.social avatar

It’s been a few months since I’ve posted. Here’s a Lucas pic to make up for it.

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.

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.

#NEISvoid #POTS #dysautonomia

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.

#Vaccine #COVID #Novavax

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.

#Vaccine #COVID #Novavax

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