This has to go in our front door now.

It says:

Friendly Notice:

Please, wear an N95 or kn95 mask when inside this home.

Please, remove your shoes or wear shoe coverings when inside this home.

Immunocompromised and Disabled people live here.

Also, please be advised that due to safety and protection concerns of inhabitants of this home, all interactions may be audio recorded.

Thank you

Smiley face

#Landlord issues #ChronicallyIll #COVID19 #Disabled #Section8

Subscribe to Georgia Writes!

Her IG is @*georgiaholliday_ (no asterisk). She’s a writer who is #Neurodivergent & #Chronicallyill

I relate to her writing & her poetry so much!

It helps my #MentalHealth and makes me feel less alone 🥺

https://georgiaholliday.substack.com/?r=1p55s1&utm_campaign=pub&utm_medium=web

#ADHD #ADHDcommunity #AuDHD @adhd @actuallyautistic @actuallyadhd

I don't understand why so many product packagings are so difficult to open and handle. For an average person it can be really annoying sometimes, but what about #disabled and/or #ChronicallyIll people?

I've been sick. #LongCOVID in the form of #MECFS. Low appetite.

Had an appointment yesterday and learned why my clothes are so baggy: I've lost 45 pounds.

So here I am, the sickest I've ever been, having the first such appointment I can remember that didn't include a lecture about "calories in and calories out."

I was way healthier when I weighed 45lbs more. I had great cholesterol and blood pressure, and I could be as active as I wanted to be. But any real health concerns I had were dismissed due to weight.

Sigh.

#fatphobia
#ChronicallyIll #ChronicIllness

@rebeccajtiffany I'm going to add a few tags to see if they help: #ChronicIllness #ChronicallyIll #Mobility #Wheelchair

I can't help, but the comment about peppy nonsense resonates with me. Doctors are always sure that a walk around the block will cure me. Gee, thanks, a walk to the next room gives me chest pain, but go on.

#ChronicallyIll people should not bear the sole responsibility of sifting through the tangle of real science and quackery in order to find a little hope.

Requesting #MutualAid.

I am still $2,000 in debt after fleeing across the country from a traumatic home. I have been housing insecure for a  decade, my entire adult life, and while my current home is the most promising, I am still unable to work and struggling endlessly with interest and fees for this existing debt. It feels so small and yet impossibly large.

My abusive father has just rescinded all of his (meager) financial support as a punishment to me for a polite request. The good news: I will never speak to him again.

My bills are $250 a month. Anything helps. Please do not donate anything you cannot afford to spare.

https://cash.app/$RuneArcana

#actuallyAutistic #ADHD #AuDHD #chronicallyIll #disability #housingInsecure #CPTSD

Just wondering who out there has small children or babies and also #MECFS (and/or #LongCOVID). That presents distinct challenges to #pacing. Might be nice to connect.

#ChronicallyIll #ChronicIllness #parenting #ME #CFS #ChronicFatigue #BrainFog #LongCOVID #homeschool #Homeschooling

Well, here goes... Requesting #MutualAid.

I am still $2,000 in debt after fleeing across the country from a traumatic home. I have been housing insecure for a decade, my entire adult life, and while my current home is the most promising, I am still unable to work and struggling endlessly with interest and fees for this existing debt. It feels so small and yet impossibly large.

I just got hit with $60 of overdraft fees due to a transaction error. I'm disputing the charges, but I am so, so tired, and I just want to worry slightly less about my finances and focus on recovery.

Anything helps. Please do not donate anything you cannot afford to spare.

https://cash.app/$RuneArcana

#actuallyAutistic #ADHD #AuDHD #chronicallyIll #disability #housingInsecure #CPTSD

@bennessb Hi! I'm going to introduce myself before fog kicks in and then go back through this thread and meet some new people!

Various details in my bio, but here's the gist of what brings me to #NEISVoid:

I have an autoimmune arthritis that acts like #RA but eludes diagnosis.

I've also got... something... from a case of #HipsterCOVID (that means I had COVID in February 2020 so can't technically prove it was COVID). So it's likely #LongCOVID. I have halfhearted diagnoses of #CFS and #fibromyalgia from a doctor who said she can't tell the difference between the two. I don't currently have access to better health care, but I can say that my symptoms match up closely with #MECFS.

So I'm interested in connecting with people with any of these conditions, or people who use #pacing to manage #PEM #PENE #PESE. Or basically anyone who understands what it's like to be #HighRisk and un- or under-diagnosed.

Also interested in connecting with people who are #parenting while #ChronicallyIll. I have three small children, and we #homeschool.

Someone said elsewhere that this (meaning the #pandemic) won't last forever.

And, yeah, there may be some solace in "this too shall pass." But at the same time, if #COVID were to disappear tomorrow, could life really return to the way it was?

Even if you set aside the devastating facts that we can't regain lost life and that people have been permanently disabled by #LongCOVID, is a return to "normal" even possible? Or desirable?

No. "Normal" was only a pleasant illusion that allowed the privileged to ignore the crushing of #life and #equity and basic human dignity beneath the gears of #capitalism and #ableism.

If a sterilizing #vaccine became available tomorrow, I would be #thankful, but I wouldn't be able to unsee the last three years.

@novid #COVID19 #disability #ChronicallyIll #InvisibleDisability

@AuriBlackCat

I don't have a lot of relevant experience, but I'll tell you two of my accessibility needs, if that will help:

1) Availability of text communication. (Auditory processing is difficult for me, as is extemporaneous speech.) One consideration is to make sure that necessary information is conveyed via (secure) text. Another is that, if communicating via video chat, see if there's a way to allow text contributions to the conversation. This will help many neurodivergent people to make contributions.

2) Be aware of immune-compromised or otherwise high-risk folks during a time of high infectious disease transmission. Folks like me don't have the luxury of gathering without first knowing that precautions are in place (layers of protection, such as masks, ventilation, etc). Specifically asking people what would help them participate safely will give us an opening to share needs that are often disregarded or mocked.

I hope that helps give you another direction or two. If you want to get advice from more folks with situations like mine, here are some hashtags you can use:

#AskingAutistics
#Autistic
#ADHD
#Neurodivergent
#Neurodiversity
#ChronicallyIll
#ChronicIllness
#HighRisk
#LongCOVID
#Immunocompromised

I was talking with a friend yesterday about how, at one point, neither of us would have understood #SelfDiagnosis or developing one's own treatment plan. But that was before both of us got put through the wringer of of the #medical system.

I'll spare you the details, but none of my diagnoses came without me knowing it first and seeking out the diagnosis. I've been dismissed and invalidated, for many years, by many doctors.

I've gone without care and figured out how to reverse symptoms of one condition, and been disbelieved by physicians.

I have some semi-helpful diagnoses now for my most pressing issue, but I have medical questions and no access to the care that could answer them. So I'm on my own, yet again, managing for myself.

So now, if I hear of someone diagnosing themselves and/or treating themselves, I get it. When you can't get a #physician to help you, you either sit around and deteriorate, or you go into research mode and figure the damn thing out yourself.

#HealthCare #NEISVoid #LongCOVID #MECFS #ME #CFS #fibro #fibromyalgia #ChronicallyIll #ChronicIllness #doctor #MedMastodon

My condition isn't new, but understanding it's #COVID related is. I had #HipsterCOVID (meaning I was an early adopter, prior to the start of testing), and I've been blaming my symptoms on another condition.

I have diagnoses of #CFS and #fibro from a doctor who says she doesn't know which it is and doesn't think it matters, but she does think it was triggered by whatever that virus was that I got at the end of February 2020.

I can't access better medical care, but I'm good at research and reading. I'm learning all I can, and the pieces are coming together. So I'm daring to put myself out there as part of the #LongCOVID community, even though everything is still ill-defined and unprocessed.

*shrug* Only people who get it, get it, I guess.

#MECFS #fibromyalgia #ME #NEISVoid #ChronicallyIll #ChronicIllness

Folks who use #pacing to manage #PEM #PENE #PESE:

What are your personal early-warning signs that you need to stop now to avoid a crash/flare?

Heart rate? Pain? Dizziness? A certain point of fatigue?

Just curious what signals everyone else has identified. I imagine there will be some variation here, but maybe sharing ideas of little signs that we notice might be broadly helpful.

#pwME #pwLC #fibro #fibromyalgia #LongCOVID #MECFS #ME #CFS #NEISVoid #ChronicallyIll #ChronicIllness

So I haven't had much appetite lately (thanks to #ChronicIllness), and I suspect I've lost a couple pounds because of that.

Last night I was actually hungry. And you know what happened? Instead of just thinking, "I'm hungry; I'll eat a little something," I thought: "Well, if I can skip snacking then maybe I'll keep losing weight, and then maybe a doctor will take me seriously."

You see, I'm #ChronicallyIll, but I rarely get taken seriously by doctors. I'll tell them about pain and fatigue and so on, but then later their notes won't have anything about that, but they'll have information about how I need a referral to a weight-loss clinic or how my obesity is a problem (nevermind my great blood pressure, cholesterol, etc).

They don't want to hear what I have to say. They don't want to hear that I control my undiagnosed joint pain with a #vegan diet and that I probably know more about nutrition than they do. All they see is the size and shape of my body. So they tell me to eat less and exercise more and completely disregard anything I tell them about my actual life.

I'm pleased to say that I went ahead and listened to my body and had a little snack last night when I was hungry. But I hate that my desperation to get help from fatphobic doctors gave me that moment's hesitation. I shouldn't have to "look right" in order for a doctor to consider that I might have a medical condition that isn't caused by weight.

That their prejudice could actually cause me to IGNORE my body's needs is shameful, and the shame isn't mine.

#fatphobia #NEISVoid #weight #doctors #medicine #medical

Thoughts for fellow #clergy and other #church leaders:

#Advent and #Christmas are times for some of the coziest and most joyful gatherings. But, speaking as a colleague who can no longer work due to #disability, I invite you to consider ways to make these gatherings more inclusive to the #disabled and medically vulnerable.

A friend is exhausted from the need for accommodation of their family's disabilities being entirely on their shoulders, while their church continues to plan events that are inaccessible to them.

I am isolated from the organized church because #COVID is too risky for me and others in my household.

Many in the #disabled and #ChronicallyIll community are incredibly hurt by a society that has collectively decided to move on without us, to be unconcerned about spreading a virus which could kill us. Don't let the church be a part of this default eugenics.

Reach out to your disabled and chronically ill members and local community. Ask them what would enable them to participate with minimal risk.

Be willing to consider holding some events that are masked or outdoors (or both!) Know that that indoor potluck you're planning will likely cause someone to have to make a decision between keeping themselves and loved ones safe, and the mental and spiritual benefit of engaging with the congregation.

You may need to take the initiative on this, because most of us have already been crushed into silence by society's disregard of our lives. I know, you have so many things to do right now, so much planning and juggling, and congregational personalities to manage. But please, take a moment to reach out to someone like me, like my friend. You may be the star of hope they need to see.

Thanks for listening.

PS: If you would like more information, try this link from @PeoplesCDC -- https://peoplescdc.org/2022/11/17/safer-in-person-gatherings/

#Pastor #accessibility #Christian #CovidIsNotOver #PublicHealth #WearAMask #priest #rector #vicar

My #introduction post: I'm #Autistic & was diagnosed with "hyperactivity" before #ADHD existed in the DSM. I self-diagnosed in my 20s, back in the early 2000s, but only got an official diagnosis (privately, as the NHS in my area was useless for AFAB adults) in January 2020. In addition, I'm #dyspraxic and #dyscalculic too.

I'm #disabled and #ChronicallyIll - my main diagnoses are #PoTs , #CentralSleepApnea , #Endometriosis , #InterstitialCystitis and #HidradenitisSuppurativa (among others).

As well as being #ActuallyAutistic , I'm an #atheist , a #humanist and #demisexual , #bisexual and #nonbinary .

I love the #Marvel character #TheWinterSoldier and the actor Sebastian Stan, #Rats , #knitting , #crochet , #tunisiancrochet, #writing and anything #medicine or #scientific . #Learning is definitely a #spin (and clearly I love hashtags too 😂).

If I say something that seems off, please just ask me to clarify. I always try to say exactly what I mean, but that doesn't always translate in reality.