I can't bind because of chronic pain, and trans tape isn't holding my tits because it's heavy, I can't do surgery either because it takes more than morphine for me to not suffer, what should I do? I'm lost.
This #LongCovidAwarenessDay I want to say sorry. I’m sorry to everyone who’s joined the ranks of the chronically ill & disabled because our leaders, public health and fellow citizens refuse to take Covid seriously.
Those of us who were disabled before the pandemic could see this wave of chronic illness coming - and many of us have been screaming from the top of our lungs the last 4 years. Begging people not to take their health for granted & to wear a mask and protect themselves. Warning them that there are no do-overs once you become chronically ill.
Unfortunately very few people are listening - and many won’t understand the true devastation of #LongCovid until it directly impacts them. At which point it’ll be too late.
Despite seeing these waves of disability as an inevitable consequence of “let er rip” Covid strategy - one thing I did not see coming was how many people would willingly embrace not only ableism - but full on eugenics.
People in my own life who were previously kind & supportive have become cruel and angry. The masks have been ripped off. They don’t hesitate to tell me that they blame me for the restrictions placed on them in the early days of Covid - and that they will never again allow their freedoms to be infringed on in the name of protecting the vulnerable. One even went as far as to say “you’ve been sick for years - just die already.”
People who say these things don’t understand what disabled people understand all too well - your health is not a permanent state. Everyone will become disabled eventually…. Some of us earlier than others. Also many people who think they’re invulnerable are already vulnerable and don’t even know it.
Yet rather than adapting behaviour and pushing for a new normal that makes the world safe for everyone - most temporarily abled people have instead doubled down on hateful eugenics talking points and want us to stay home forever (or worse - die). It needs to stop.
Covid is airborne and we all share the air. “You do you” individualism is quite literally killing people. We need to start caring about the air we share as this will lead to a healthier society for everyone. Until then we need to mask up. It’s not hard, it’s incredibly effective & it might save someone’s life.
If you want to read more about the “friend” who told me I should “just die already”… I wrote about it & the behaviour changes I’ve noticed throughout the pandemic here: https://disabledginger.substack.com/p/just-die-already
Thanks to Tanya Lewis & Josh Fischman for interviewing me for this SciAm #podcast on the recent publication of an NIH study on myalgic encephalomyelitis/chronic fatigue syndrome that I volunteered for.
We warned everyone back in spring of 2020 that this would happen if the pandemic was not kept under control.
I think the very broad definition of long covid used here is inflating numbers of people who are disabled...but no doubt many are & many more are less productive than before infection.
Ignoring post-viral illness continues to fuck us all up.
A story about one woman's decent into energy deprived #ChronicIllness. I can absolutely relate, but for me it's #ChronicPain zapping my energy like you wouldn't believe. The best I can get out of life right now, is trying to live a normal life on the internet, as that just requires two thumbs. If I didn't have the internet, I may not even be alive today.
Please take a second to read this very short article about an invisible life-controlling illness, so that the 'lazy' bias-ness can be killed ⬇️
"Composer Creates Concerto to Shine a Light on Chronic Illness: Danish composer Martin Byrial's latest concerto is based on stories sent to him from families fighting #chronicillness"
"It’s the greatest medical scandal of the 21st century. For decades, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been told they can make themselves better by changing their attitudes. This devastating condition, which afflicts about 250,000 people in the UK, was psychologised by many doctors and scientists, adding to the burden of a terrible physiological illness."
Our focus for March is Multiple Sclerosis. Join the Servant of All team as we discuss the challenges many face receiving proper diagnosis and treatment, as well as ways to support those who cope!
I think as well as sharing my Autistic experiences I'm going to also try and share information about my combination of chronic diseases and what it does to an individual's body over time... It seems many people I am close to have never even heard much about Celiac's or especially Graves' disease...
Today is Rare Disease Day. I have a disease that is not particularly rare, but is considered so because it's underdiagnosed, misunderstood and some of the types are extremely rare.
If there were more funding for research and more training for doctors, perhaps we wouldn't be considered rare any more. 🦓
Knowing I’m living with a painful autoimmune disease and the only way to ‘improve’ my symptoms and slow down the progression is…. to suppress the immune system.
My mind can’t fully grasp that this is my life now.
Hi all. How's everyone doing today? I have a question for those with #chronicIllness who use natural remedies, particularly #herbalism, to help with your illness, instead of or along with western medicine. My mom got me some stuff to start a #garden since she thinks I'll love growing my own food and #herbs, and we also think it would be good to see if we can find any herbs that might help with my health issues. She seems to think it's enough to just look up herbs and what they do, but from what I'm reading, there's a lot more to it than that, since they might need to be prepared in a certain way, or there might be a certain tradition or way of use behind them, so I'm trying to find resources to teach me about herbs and how to use them, and maybe just natural and alternative medicine in general. There seems to be a lot of stuff on YouTube, but it's hard to know what's reliable or might be too visual since I'm #blind. I've looked at online courses, but I don't know about #accessibility and most cost a lot of money, which we don't have. Does anyone have any suggestions for where I can learn about herbalism, #alternativeMedicine, and things like that in an affordable, #accessible way? #chronicallyIll#NEISVoid@chronicillness
I asked several AI services how to compost, but I was not impressed with the answers. Composting is both simple and complicated, with not one recipe or method that works for everyone. AI is not a sustainable solution and contributes to #climatechange. Not using AI can be seen as an act of resistance.
One of my concerns with AI is that it often provides incomplete answers, despite the race to develop the latest and greatest AI technology. If you want to learn how to compost, it's best to turn to books and your local library, YouTube channels, or websites for guidance.
This is why we created this account - to help those who are interested in composting, especially since there has been a surge in interest due to the pandemic and mandatory composting laws in some areas.
@compost Are there any books that give tips for people with #chronicIllness, or #blindness. I haven't seen a lot on how to compost when you have a #disability yet. I would be an good conversation to start, if it isn't out there yet. I want to compost, but I would need confidence from people who have had experiences that would be similar to mine.
@trendless No LC experience, but speaking from MEcfs:
b) I'm not really sure what counts are surface-y where you or the family member lives, so I'll just recommend having the thyroid checked and checking for a B12 vitamin shortage. At least over here, surprisingly many doctors don't check for B12 shortage because it's rare and it takes years to develop because there's a large storage in your body. But I've heard so many people with ME tell me about managing their shortage, that I think it's more common than is known.
My theory is that many people get ME/cfs after EBV, and EBV can also ruin the stomach over time. Maybe other viruses can do that too? Certain parts of the stomach are needed for creating intrinsic factor, which is essential for being able to absorb B12, so without IF you can't get enough of it through food or regular supplements. If B12 gets too low, one gets anemic and it just gets worse and worse, with nerve and brain damage etc. B12 injections or B12 supplements under the tongue solve at least that problem so easily, that it's always worth looking into.
Also it might be worth it to check some patients websites for people with ME/cfs, many contain a list of the most important things to check for in blood tests!
a) I think the unpleasant answer is lots of trial and error and learning over the span of months or years, unfortunately. And you're probably already aware of all the pacing guides. But some things I've adapted to:
Tracking my heart rate. I've found many guides that explain that you need to measure your resting heart rate and then always stay below that + a certain amount of beats or % added. This hasn't worked for me, it was simply impossible (maybe because of pots too). But I've found some numbers for me that predict things quite well. If I go over 140, good job I messed up, there's going to be consequences, possibly a crash. If I go over 130, better watch out and rest asap, maybe I can escape severe consequences. If I remain between 60-120 as much as possible, I'm doing okay.
Not just the immediate heartrate, but also the pattern of how quickly it rises has helped. If I do a very small task in my house, and my heart is 90-110, that's okay. But some days I start the small task and within a few minutes I'm already going near 130. It's a sign that I wasn't as rested or well off that day as I thought, and I need to rest and be careful. Over months I've come to expect certain heart values with certain activities and if the heart rate starts to differ from that, I quickly know: oh, oh! before going too far.
Heart rate variability seems to give way more predictable and accurate information to many ME-ers, but it's hard to measure with cheap and convenient equipment. I have a bracelet that measures it so-so with a measurement they call 'stress'. It gives me information about how heavy something was to do the day after mostly. Usually my graph has blue/green bars, but when I do something that was unexpectedly tough for my body, I spike in yellow/orange bars the day after, or sometimes even the night immediately after the activity.
I think there's value in body signs that aren't easily tracked with accurate measurements. It's a feeling you build over time. Noticing that your body feels very heavy, or that your muscles are cramped, or that nausea rises if fatigue is too bad, or your body temp is starting to get low, or that tremors are coming to your hands, general dizziness -it could be anything. Noticing these in time as a sign of pre-crashing/too fatigued, helps with making the consequences less dire. For example, when I feel my body gets too cold, I get a warm water bottle and wrap myself in blankets. I might feel silly doing that, but it prevents me from losing even more energy on keeping the body warm.
It might help to note down these kind of body functions at first, to start seeing a pattern, although they start to feel very familiar over the years.
Anyway, I won't spam you any more 😆 , but these were the things that I thought of immediately. I'll add some extra hashtags, maybe someone else has some more information?