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.
Got my postal vote for upcoming referendums in Ireland, so I thought I would remind people of this option for future votes (it's too late for the referendums).
@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?
Today is the 2 month anniversary of the death of my partner, Beth Mazur, and it's also the publication day of an NIH study on ME/CFS that I took part in as a patient & that Beth was involved with as an advocate. She supported me during the 21 days I was at the Clinical Center & pushed the scientists to work faster & do better. I'm very happy reporter Jennifer Couzin-Frankel mentions Beth in her #Science article today.
@chronicillness I love night shift. I love being awake at night and I love the personalities night shift attracts… and chronic illness has said, “No more nights, unless it’s insomnia I’ve made for you, or I will punish you disproportionate to the offense.” And isn’t that just chronic illness in a nutshell? #chronicillness#audhd#adhd
Today I listened to the new mini-series on the Outrage & Optimism by Christiana Figueres and Isabel Cavelier Adarve and did not expect to be led to thinking about chronic illness and rest.
But that is where it took me.
The episode is called Our Story of Nature: from rupture to reconnection.
After listening to the podcast and with respect to @MsHearthWitch comments yesterday on rest, I wrote this in my journal:-
Rest: consider it outside of patriarchy, capitalism and capacity. Living through - rather than striving for something dysfunctional. Thoughts can result in nice worlds.
"To most people around me, I was simply small, dramatic, and usually sick. In some sense, the knowledge was always there -that the thing that was wrong with me might have a name, that it might be wrong with other people, too.
What was the point? I was skeptical of tidy diagnostic categorization even as I sought it. The issue is not that diagnostic categories are fake -or that 'psychological' as opposed to 'somatic' suffering is somehow less real- but that they are means to the end of accessing care, not ends in themselves. I didn’t care what the name for my collection of symptoms might be, but I really, desperately wanted to stop fainting, to keep food down, to maintain a normal body temperature.
I would come to think of the diagnostic process as a devil's bargain the sick must make with the market in order to receive the care necessary to survive."
I get that we need to find ways to move on, but I really don’t understand the laissez faire attitude to #COVID. Surely air purifiers and occasional masking still have a place for infection control? Especially in health settings. Us poor immuno compromised have a hard enough time navigating the world as it is.
This page has a form requesting information from patients. It's an opportunity for patients with ME/CFS, Long Covid, and other chronic illness to share their experiences.
This article was published Feb. 1 but I just saw it. I'm not sure whether there's a deadline.
has anybody ever received a #medical#diagnosis where the #doctor told you that your illness will likely cause a significant reduction in your #lifespan? Not that you are dying, but that you likely will not live to be an old person? How did you deal with this news? How do you handle that?