@leahazel / leahazel.tumblr.com
There's a bunch of adhd advice out there that's like "people with adhd tend to work better under deadlines due to the anxiety so here are ways to artificially induce a stress response in order to get you to get work done" and it's like well what if I don't want to be stressed out all the time in order to function
this gold shouldn't stay in the comments
finally started @thebibliosphere’s Hunger Pangs and giggling at the self-indulgent fantasy of “doctor who immediately takes you seriously, identifies your problems, curses out your previous doctors, and rushes you in to an effective treatment without delay”. I know there’s sex coming up but surely this is the most erotic part of the book.
@ms-demeanor ‘s post about reacting to the epinephrine in dental shots just yeeted me back into a core memory circa 2018 when I was first prescribed my epi pens (I carry 4 at all times, yay, mast cell dysfunction) and the doctor in the ER realized my tendency toward biphasic anaphylaxis was in part triggered by the sulfite solution in the epi pen.
You could see him doing the thousand yard stare of dread inside his own head while outwardly yelling for more steroids.
And that’s the story of how my backpack came to be filled with a metric fuckton of dye-feee Benadryl and Prednisone. Because fuck me, I guess.
there is...something about the people that i adore online. you all seem rather “delicate.” i am desperately trying to send you all some kind of immune system buffs.
Were I a Victorian lady of genteel birth, I'd be sent to the seaside for my health. Alas, I am a wretched creature devoid of means and must be content with yelling about my bullshit body online.
I am psychically sending Anne Elliot to beat up your ex-doctors, if that helps.
Heating pads can burn you.
They can burn you quite badly.
I saw a post the here other day that asked how to “get rid of heating pad marks.”
Folks. If you have “heating pad marks” those are burns. And they can become much, much worse if you continue to use a heating pad on the same area of your body.
I know most folks with chronic pain scoff when we read the warnings on a heating pad. “Don’t lie on this pad.” Yeah. Sure. Lying on it is exactly the main thing you’ll be doing.
But please. Please always have a layer of protective fabric between the pad and your skin. Never, ever use a pad directly on your bare skin.
Never fall asleep on a heating pad. I know it’s easy to do, but you’re much more at risk for getting a bad burn when you’re asleep.
And never combine use of a heating pad with a topical analgesic (like Icy Hot, A535, Tiger Balm, Voltaren, Lakota creams or roll ons, essential oils or any other topical pain reliever) the oils and plant compounds in these products will accelerate burns. Do not apply anything to your skin and then use a heating pad.
And if you burn your skin, take a break from using the heating pad. I know that’s hard because many of us rely so heavily on them for pain management.
But you can permanently damage your skin by repeatedly burning it and dramatically increase your risk of cancer by doing so.
Be careful.
Please reblog this for the chronically ill folks in your life/ who follow you who use a heating pad
you are offered a choice:
what do you choose, and also, are you trans or cis (if you're tempted to answer 'it's complicated', round off to trans)?
Getting rid of my celiac alone makes it no question.
shoutout to writers who:
you can do this, you belong here, and you deserve to treat yourself with kindness and care
I overextended myself and now I need to rest.
I have another migraine.
This is fine.
Just in case no one has ever told you this, migraines are classified as a neurological disease with body wine symptoms. They can be disabling and many people are disabled by their migraines.
You do not need to suffer more for your disability to count. Your pain is valid. Even if it’s episodic.
I had to quit my last job because of my migraines.
Feet... Not good.
you ever play fallen london for so long in the morning that you forget your own real life actions aren’t part of an action system
“i can’t come, i’m out of actions” does work for many situations
Spoon theory.
Gonna have the rebound from hell tomorrow
I luckily haven't had to deal with much chronic pain or hand pain yet, especially with regards to baking (crochet is another story). That said, these look like some pretty solid tips! There's also some in the comments section.
As this link nears five hundred notes, I'm just... very quietly touched at how many people are sharing it. Whether they need it themselves (or think they will someday), or know someone else who might need it, the fact that all of them are sharing the sentiment of "I want the people who love doing this thing to be able to keep doing the thing that they love" is... yeah. It makes me happy.
A scientist in South Africa believes she and her colleagues have found a critical clue in solving the mystery of long COVID: microclots.
“A recent study in my lab revealed that there is significant microclot formation in the blood of both acute COVID-19 and long COVID patients,” Resia Pretorius, head of the science department at Stellenbosch University in South Africa, wrote Wednesday in an op-ed.
Pretorius writes that healthy bodies are typically able to efficiently break down blood clots through a process called fibrinolysis. But, when looking at blood from long COVID patients, “persistent microclots are resistant to the body’s own fibrinolytic processes.”
Pretorius’ team in an analysis over the summer found high levels of inflammatory molecules “trapped” in the persistent microclots observed in long COVID patients, which may be preventing the breakdown of clots.
Because of that, cells in the body’s tissues may not be getting enough oxygen to sustain regular bodily functions, a condition known as cellular hypoxia.
“Widespread hypoxia may be central to the numerous reported debilitating symptoms” of long COVID, Pretorius writes.
As many as 100 million people globally have or have had long COVID, according to a study by researchers at the University of Michigan in November.
A patient is diagnosed with long COVID when the effects of a COVID-19 infection persist for more than four weeks, according to the Mayo Clinic. While older people and people with serious medical conditions are the most likely to experience long COVID, many young and healthy people have reported feeling unwell for weeks or even months after their initial COVID-19 diagnosis.
Symptoms of long COVID vary between cases, but primarily include fatigue, brain fog, muscle or joint pain, shortness of breath, sleep difficulties, and depression or anxiety.
The Department of Health and Human Services in June released new guidance in which some symptoms of long COVID could qualify as a disability under the Americans with Disabilities Act.
In December, the Equal Employment Opportunity Commission issued an update to its own guidance, which now considers an individual who has contracted COVID-19 disabled if any of their symptoms “substantially limits one or more major life activities.”
Oh, this is fascinating! So much good could come from this.
@thebibliosphere have you seen this?
I read about it briefly on Twitter! It’d be fantastic news if this turns out to be the case. It also makes me wonder if this is also applicable to other forms of post-viral illnesses, or if it opens up the gateway for more research. Here’s hoping!
Heating pads can burn you.
They can burn you quite badly.
I saw a post the here other day that asked how to “get rid of heating pad marks.”
Folks. If you have “heating pad marks” those are burns. And they can become much, much worse if you continue to use a heating pad on the same area of your body.
I know most folks with chronic pain scoff when we read the warnings on a heating pad. “Don’t lie on this pad.” Yeah. Sure. Lying on it is exactly the main thing you’ll be doing.
But please. Please always have a layer of protective fabric between the pad and your skin. Never, ever use a pad directly on your bare skin.
Never fall asleep on a heating pad. I know it’s easy to do, but you’re much more at risk for getting a bad burn when you’re asleep.
And never combine use of a heating pad with a topical analgesic (like Icy Hot, A535, Tiger Balm, Voltaren, Lakota creams or roll ons, essential oils or any other topical pain reliever) the oils and plant compounds in these products will accelerate burns. Do not apply anything to your skin and then use a heating pad.
And if you burn your skin, take a break from using the heating pad. I know that’s hard because many of us rely so heavily on them for pain management.
But you can permanently damage your skin by repeatedly burning it and dramatically increase your risk of cancer by doing so.
Be careful.
Please reblog this for the chronically ill folks in your life/ who follow you who use a heating pad
For a majority, a virus triggers ME/CFS. Would Long Covid even exist right now if medicine had paid attention? For many people, Long Covid will be or is ME/CFS.
With an eventual projected 15 million people with Long Covid in the U.S. alone, we are in a public health (and subsequent economic) crisis. Studies show that people with Long Covid experience a quality of life that is worse than Rheumatoid Arthritis, COPD (Chronic Obstructive Pulmonary Disease), and end stage lung cancer; they experience more difficulty with activities of daily living than cancer rehabilitation patients.
85.9% of long haulers have PEM (post-exertional malaise), the delayed and debilitating worsening of symptoms after even simple physical or mental exertion that is disproportionate to the activity itself. Imagine if typing one more word or folding one more towel was the difference between carrying on with your daily routine or spending the next several days to weeks in bed so ill you can barely move. This is a hallmark sign of ME/CFS.
While the media has been a helpful ally of long haulers overall, there remains consistent reporting that the vaccine is a cure, or that Long Covid clinics are helping people recover, when these anecdotes are not actually panning out for a majority. More data is needed. Until a pathophysiology is determined, Long Covid clinics have little to offer except reassurance and referrals to specialists, most who also do not have any answers.
Some Long Covid clinics do not even understand the main symptoms they are attempting to treat, like PEM, and are providing advice that is causing patients to relapse.
Some patients who at first improve with the vaccine also seem to relapse later, and some get immediately worse and remain that way. News articles state that people are ill for “weeks and months,” as if there is a determined endpoint, though many have been sick for over a year, with no end in sight.
“New theories” such as viral reactivations that suggest that answers for Long Covid are being found are not new theories at all, but have already been described in detail as part of the 9,000 peer-reviewed journal articles in the ME/CFS literature that are being seemingly ignored by the greater medical community.
This deserves its own post:
Not a little, definitely not enough to be "distracting but tolerable" with or without Tylenol. ZERO. (I'm shocked too every time I remember that the norm is to live pain free unless something happened to you, I know.)
If your baseline of unmedicated daily pain is above zero, you're dealing with chronic pain and you need to come to terms with that reality.
Babes, chronic pain is defined as pain that lasts over 3 months. That's it. Including pain that goes away but then inevitably returns. It doesn't have to be 100% persistent.
Stop scrutinizing and minimizing your own pain so much. It's not gonna help you OR the "actually" disabled/ill people you seem to think you'll offend by acknowledging your own suffering.
July is Disability Pride Month. The first Disability Pride started in Boston, MA in 1990 but it has since become an international celebration. The aim of Disability Pride is described by the founders of Disability Pride NYC to “promote inclusion, awareness, and visibility of people with disabilities, and redefine public perception of disability”.
The Disability Pride flag has some very interesting symbolism interpreted by the artist which include:
The Black Field: this field is to represent the disabled people who have lost their lives due to not only their illness, but also negligence, suicide, and eugenics.
The Lightning Bolt: the shape of the lightning bold represent the non-lateral lives that many disabled people live, often having to adapt themselves or their physical routes to get around an inaccessible society.
The Colours: each colour on this flag represents a different aspect of disability or impairment:
Blue: mental illness
Yellow: cognitive and intellectual disabilities
Green: sensory perception disabilities
Red: physical disabilities
The white stripe stands for invisible and undiagnosed disabilities. So even if you are struggling to get a diagnosis or worry your lack of diagnosis means you don’t belong, you absolutely do.
You are part of our history, our community and our fight.
Happy Disability Pride Month.
