#neisvoid — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #neisvoid, aggregated by home.social.
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Oh my goodness, I'm so nervous. I have a very important doctor's appointment in a half an hour that I really NEED to go well. I'd appreciate it if anyone sends me good vibes/wishes me luck/whatever. Aaaaa!!! 😖
#chronicpain #chronicillness #NEISvoid #ehlersdanlossyndrome #hEDS -
Wondering if anyone has any great system (open source db?) for tracking multiple symptoms for multiple and varying medical concerns/body systems.
Would love a non-Android program or tempted to play with excel or Access and make my own form/database combo.
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CW: Health, doctor, neg, ME/CFS
I'm housebound and 95% bedbouund with very severe ME/CFS.
Last year, I left the house five times. One for a medical appointment that fucked me up forever. One by ambulance for several nights, inpatient. Also permanent harm, but not as drastic. The others were short and I never even got out of the car.
Now I'm using one of this year's because cardiologist can't do much by telehealth and made it a condition of prescription renewals.
An hour past appointment time. My HR alarms are going off sitting in my wheelchair. I'm overheated. Still waiting for him.
This is gonna hurt.
It also means I'll have to make a second trip for lab draws because I have to get home ASAP.
(Much later: He walked in just as I finished the above. It hurt. The only thing he did that required me being in person was routine stethoscope checks.)
Hashtags follow: #MECFS #Disability #ChronicIllness #NEISVoid
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Friends and neighbours, I am not at all well today #ChronicIllness #NEISvoid
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3/
Includes subsections under the category of "Failures in medical training that promote medical gaslighting" with the following headings:
• Insufficient preparation for chronic illness
• Common and serious diseases are neglected in medical training
• Psychosomatic illness
• Inability to accept uncertainty#MedicalGaslighting #Gaslighting #MedMastodon
@longcovid @mecfs #chronicillness #spoonies #NEISvoid #chronicillnesses #hiddenillnesses -
CW: Health complaining
It is drugs day, the day where my immune system is at its strongest and most aggressive, and I went to a museum yesterday.
I feel like GARBAGE. My throat hurts, my back hurts, I'm fairly certain someone has filled my blanket with lead weights, my eyes are drier than the Sahara.
I've been awake for maybe ten minutes. I have to get up to do my injection to make everything better, but that's two rooms away, which is unfathomably far.
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:blobcatsnuggle:
Ziggy the happy snugglebug #kitty #cat says hi and she loves you and hopes you're doing well!! 💕
(Tbh I'm not doing well with my #chronicpain and #chronicillness, and she's taking good care of me. :nekolove:) #neisvoid #spoonie -
"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone
https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful
#MedicalGaslighting #neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone
https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful
#MedicalGaslighting #neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone
https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful
#MedicalGaslighting #neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone
https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful
#MedicalGaslighting #neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone
https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful
#MedicalGaslighting #neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
#artists , I know this is a long shot, but instead of complaining forever I will just ask:
Are there any artists here with #MEcfs #longcovid #fibro or energy limiting illness, or those who are aware what this is like, that know how to practice mark making when essentially almost bedbound?
Because obviously i can't have the "objectively" good posture and do the whole drawing from the arm thing when half lying propped up on pillows, in bed, with my tablet in my lap.
If anyone else has any ideas I welcome them.
My lines (and generally, fundamentals) are shit and I want to change that.
Not sure what to tag, #neisvoid ? #artlearning ? -
The "day I'm supposed to take my biologic therefore my immune system is at its strongest" brain fog is real, y'all
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Woke up with a 100 on my Body Battery today the first time maybe ever? After months and months of struggling and mostly spiralling downward, it's almost frustrating because I don't know what I did right, so I don't know if I can repeat it.
Weirdly, I think I have to just keep taking it easy, because usually a "good day" is followed by a crash even if I don't do more than usual.
#NEISvoid #MECFS -
CW: Mental health / memory (neg)
I'm tearing up because it took me a very long time to come up with the name of someone who was a close co-worker and friend for many years, and very important to me -- not all that long ago.
My cognitive functions and memory just continue to decline.
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Have I mentioned that I hate how hard it is for me to do fucking anything? Sigh. #NEISvoid
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CW: Morbid, personal, physical and mental health, slightly gross (why I rarely toot)
I've been hit hard lately by the thought, "I'm not going to get old."
I'm in my mid-50s (not old!). I don't have anything terminal, no expiration date.
But I'll be somewhat surprised if I can still get out of bed by the end of the year. And extremely surprised if, once I've reached that point, I have any real rebound.
I already can't get out of bed safely after around 10pm because of weakness, feeling faint, or balance problems, in any combination.
For bathroom needs, I have a plastic urinal beside the bed, one beside my lift chair in the living room, and a (rarely used so far) commode chair I can get myself to with the rails.
But once in awhile I don't quite manage the placement and steadiness of the urinal after swiveling to sit on the bed, and have to ask Jalan afterward to bring me fresh underwear.
She never, ever, has a bad thing to say about stuff like this, but I hate it so much.
Being bedbound is not death! I plan to still have things to live for! But it becomes progressively difficult for the body to maintain its functions. Especially without being able to exercise.
So y'all are stuck with me for a while, years yet.
But it's weighing on me.
And this is also why a lot of my original toots (as opposed to boosts and replies) are often focused on my sex life as a thing I'm getting a lot of (qualified) pleasure from.
There's this, and the world is on fire, and it can be hard to think with a broader base except occasionally. That reluctance may change, but it's where I am right now.
The flip side:
I have an 9-year-old child. I'm gonna be an active part of their life for a long time yet, even the parts from bed.
I have every motivation to persevere.
N.B. I know it's hard to know how to reply to something like this. I know I've got support here, and thank you.
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CW: Chronic illness, ME/CFS, voted!
I usually vote by mail because I've been housebound with severe #MECFS for two years. I missed the timeline for returning my absentee ballot for an election Tuesday, in large part because of being #housebound--these days a calendar is something that happens to other people.
So Jalan drove me yesterday to vote curbside (i.e., through the car window) at an early-voting site. We also needed to pick up prescriptions. We were out about an hour, with me never getting out of the car.
Notably, the last time I was out of the house (other than an emergency hospitalization in November) was to vote curbside in early October last year.
Friends and neighbors, going out broke me. Most days, I spend most of the time in my lift chair in the living room before moving to the bedroom sometime late afternoon or evening, where we have, in addition to bed, another, very comfortable, recliner.
Yesterday, though, we were home by around 2pm, I couldn't leave the bedroom the rest of the day. Sometimes sleeping, constantly in pain (more than baseline), hypersensitive to sound and light, all the terrible.
I hate this.
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🧵
Another thoughtful blog post from this blogger:"Some people feel validated by an FND diagnosis; we should treat these people with respect, understanding and compassion (even if we think they're wrong). It’s complicated!" by K. Johnstone
https://mecfs.substack.com/p/some-people-feel-validated-by-an
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll1/
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🧵
"Somatic symptom disorder: Why your doctor doesn't believe you're really sick: SSD is a mainly-female condition which medicine treats as real and common, but which has no solid scientific basis"https://mecfs.substack.com/p/somatic-symptom-disorder-why-your
I have been impressed by this blogger.
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll1/
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How can I promote my #crowdfund if I can barely get online? I won’t survive much longer in this house. My doctor agrees. I’m declining and there’s no treatment that can work while I’m constantly being #abused #neglected #controlled you name it.
Please help promote my crowdfund I don’t have long.
https://chuffed.org/project/161937-help-anna-escape
#SevereME #ChronicIlness #MECFS #Disabilty #MutualAid #Neisvoid
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How can I promote my #crowdfund if I can barely get online? I won’t survive much longer in this house. My doctor agrees. I’m declining and there’s no treatment that can work while I’m constantly being #abused #neglected #controlled you name it.
Please help promote my crowdfund I don’t have long.
https://chuffed.org/project/161937-help-anna-escape
#SevereME #ChronicIlness #MECFS #Disabilty #MutualAid #Neisvoid
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How can I promote my #crowdfund if I can barely get online? I won’t survive much longer in this house. My doctor agrees. I’m declining and there’s no treatment that can work while I’m constantly being #abused #neglected #controlled you name it.
Please help promote my crowdfund I don’t have long.
https://chuffed.org/project/161937-help-anna-escape
#SevereME #ChronicIlness #MECFS #Disabilty #MutualAid #Neisvoid
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How can I promote my #crowdfund if I can barely get online? I won’t survive much longer in this house. My doctor agrees. I’m declining and there’s no treatment that can work while I’m constantly being #abused #neglected #controlled you name it.
Please help promote my crowdfund I don’t have long.
https://chuffed.org/project/161937-help-anna-escape
#SevereME #ChronicIlness #MECFS #Disabilty #MutualAid #Neisvoid
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How can I promote my #crowdfund if I can barely get online? I won’t survive much longer in this house. My doctor agrees. I’m declining and there’s no treatment that can work while I’m constantly being #abused #neglected #controlled you name it.
Please help promote my crowdfund I don’t have long.
https://chuffed.org/project/161937-help-anna-escape
#SevereME #ChronicIlness #MECFS #Disabilty #MutualAid #Neisvoid
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Y’all, I’m tired.
I’ve been doing medical research all day.
So it’s time for me to just come out and say something.
I want a snake. A pet snake.
There. I said it.
-Allēna
#dangernoodle #fuckingaround #MECFS #NEISvoid #random #snake #tired
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Y’all, I’m tired.
I’ve been doing medical research all day.
So it’s time for me to just come out and say something.
I want a snake. A pet snake.
There. I said it.
-Allēna
#dangernoodle #fuckingaround #MECFS #NEISvoid #random #snake #tired
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You ever have a moment where you realize you belong to a community you didn't think you were part of before? That was me last night struggling with my listening practice for Japanese. I didn't really think I was HoH before, but this year got me fucked up frfr I can't hear shit. #disabled #neisvoid #HoH #DisabledBlackTalk #BlackAndDisabled
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2nd to last day of my few days on #prednisone (24, then 20, then 16, etc) and the cursed pain is coming back. I wish regular prednisone didn’t make me intolerably irritable (and prob hurting my organs) bc the relief is so good. My quality of life improves so much. #NEISVoid
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Are #terpenes a real #pain relieving thing? Still legal in Oz.
#Myrcene has been suggested.
Microdosing #mushrooms of various kinds have also been suggested. Can’t get the magic kind without a prescription from a psychiatrist, but the rest are legal afaik. Do they work for pain?
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Are #terpenes a real #pain relieving thing? Still legal in Oz.
#Myrcene has been suggested.
Microdosing #mushrooms of various kinds have also been suggested. Can’t get the magic kind without a prescription from a psychiatrist, but the rest are legal afaik. Do they work?
#ChronicPain
@chronicpain #NEISvoid #MeCFS #PwME @mecfs
#ChronicIllness @chronicillness -
CW: Spoonie; see prev cw
🥄 🧠 🥣 I joke about how “#evolution is holding me together w #chewingGumAndDuctTape” &now I’m just doing it #literally. Like #literallyLiterally!
To protect #mysteryBlister (which develop at #random on my #fingertips… #moisturizing 📉so #DoctorSays: #moisturizeMe 📈!) from my #compulsiveSkinPickingDisorder, I hide it from my #trichotillomania #fingies with a LOOSE #barrier of #peely #packingtape.
#NEISVoid #LiterallyHeldTogetherWithTape #spoonie #SpoonieSquad #BFRB #ADHD -
If you use methotrexate/any med or treatment to manage a chronic condition & your access has been limited in any way by your insurance or pharmacy because of #Dobbs v. JWHO, those new barriers may violate #Section1557, the #ACA's nondiscrimination provision. You can file a complaint directly with HHS here: https://www.hhs.gov/civil-rights/filing-a-complaint/index.html
I’m trying to get a grip on how many people are effected. If this has happened to you or someone you know, I’d love to hear from you! #NEISvoid #MTX #disability