Perhaps the most frustrating thing about having a chronic energy limiting disability is other people's ignorance about chronic energy limiting disabilities.
Every time your self preserving actions, inability to do something, requests for accommodations, skeptical attitudes, or apathy towards my situation occur it diminishes my ability to do things. I'd absolutely be able to do more if everyone else either had a little compassion or would just fuck off alltogether.
Its been 13+ years.
Ive been looking for these answers for 13+ years.
Today, i stop looking and start treatment.
Im not sad about the diagnosis
Im sad that it took 13+ years and being disbelieved, dismissed, belittled and gaslit by so many doctors across all of that time to get to this moment.
Its weird to be this relieved at receiving news that i have an incurable condition
If youre in the hell that is undiagnosed limbo, just know that your suffering is real and its not diagnosis that gives you validity. You deserve answers, and you shouldnt have to fight as hard as i did to get them. Love you 🩷
hi, thought I'd do an #introduction post as I haven't put anything on here in what feels like a lifetime. My name's Blake pronouns he/him. I was born blind meaning I rely on #Jaws#NVDA or #voiceover for all my tech needs. I'm a qualified #paralegal but don't work due to #chronicillness unrelated to being blind. even though #socialcare staff see me as a service user I want to set up my own #CIC around the link between #TransRights and disability rights. I have a ton of hobbies and academic interests which would take me over my character limit to list them all lol. 3 interesting facts. 1, I met Timmy Mallet when I was 8 years old. 2, in my late teens I went on the Kilroy chat show where the topic was #telepathy and met some amazing people on both sides of the coin. 3, I host two quizzes each month on a small #TeamTalk server which I find really rewarding. being a #quiz player is also just as interesting, going on #Thechase or #lingo would be such fun.
the figure on the manila anatomical bookmark is against a dark ink background. their body is colored in dark green-blue, with vibrant trans pride flag colors across their body diagonally, the white at their lower abdomen. Their face is drawn in extreme concern. A speech bubble shows them asking, "is there a less invasive option?" a drawing of a disembodied white coat,with jagged edges and allmost glitch-like shaking lines is before them. The white coat also has a speech bubble, and replies, "this is the less invasive option."
Social media generally slows down at the holidays. Why? Because people are celebrating and spending time with their families.
I’m not one of those people.
Why? Because I’m having another Chronic Illness Christmas.
When you’re disabled and chronically ill, the holidays hit different.
They’re lonely. Isolating. Exhausting.
As a result many of us are excluded and left on our own.
When I created The Disabled Ginger I wanted to build a community where everyone felt included.
I wanted to reach across the internet and connect people so they could always have someone to talk to. Someone who understood them. Someone who could make them feel a little less alone.
This Christmas that’s my wish for all of you… that you feel a little less alone.
That you find comfort and joy in the small things, whatever they may be.
If you’re healthy, please remember that not everyone is. That many people are suffering this Christmas and could use a kind word or a bit of love.
Aldercone's havin' a really rough month, about 1/2 of our collective is too ill to work, with new, interesting problems that make some of our work really difficult/impossible.
Struggling severely #disabled#bedbound#Native indie game dev and graphic designer and their partner are working hard af to keep their disabled queer fam of 4 housed, but they need help!
Just talked with #DisabilityServices at Colorado Christian University. They’re encouraging me to use #MicrosoftWord instead of #LaTeX for schoolwork, since Word has built-in dictation that could help when my #RheumatoidArthritis flares up and typing gets hard.
To other #Blind folks: how do you remember all of Word’s keyboard shortcuts? I swear I spend more time navigating the ribbon than actually writing. I stick with LaTeX because I can remember commands better than shortcuts.
They said Word’s dictation is accessible, so I’m giving it a shot. But I’m also wondering: what reference managers do you use? I’ve been using #Zotero since it works with #VSCode and LaTeX, but I don’t know how well it integrates with Word — and definitely not with #PowerPoint. My school has me doing a lot of #APA-style presentations lately.
Would love tips from anyone juggling accessibility, citations, and academic workflows.
Alright #ChronicIllness and #NEISvoid friends. It is time.
Please hit me with your wheelchair recommendations, avoid list, and things to research.
I think I am interested in a manual active chair with a focus on foldable/portability.
Feel free to boost.
I’m currently having a fibromyalgia flare up. Luckily I had something up my sleeve that I didn’t show you yet. Progress on my Raven painting that I made last Friday. #Art#Chronicillness
For just 17 cents a day you can make a HUGE difference for the Aldercones!
If just 1/3 of our followers + 1 of your friends support us monthly, you'll let us rest, pay our bills, & keep making games, community tech, #art, & #music for you!
This is not medical advice, this is a summary of things I have read from various studies, journalists, and newsletters, and what I try to prioritize for myself. I send this to loved ones who accept my offer for it when they or someone they know gets infected, and I figured I should make it more broadly accessible.
Ways to Lower Your Risk of Long Covid &
Lower The Severity of A Reinfection’s Worsening Your Long Covid
Medicines, Vitamins, and Supplements
Increase Vitamin D ASAP and sustain it for at least a month. It’s a reserve vitamin so you can’t cram it all in 2 days, and should not. It is possible to have too much Vitamins A & D, so please be mindful of dosing.
Increase Iron ASAP and sustain it, similarly to above.
Zinc, like Vitamin D, is key to our immune system’s functioning & signaling. Zinc can help boost underactive immune features, calm overactive immune features, and reduce inflammation. Additionally, studies have found Zinc levels are significantly reduced during Covid infection, and reduced in relationship to severity of infection, so it makes sense to combat this.
H1 Antihistamines have preliminary research to support them decreasing LC risk and SIGNIFICANT research supporting them as treatments in Covid-19 infections, plus ways to lower your Covid infection risk overall. All H1 antihistamines have shown in vitro benefits, however the ones I’ve seen most studied in humans are cetirizine/zyrtec, ebastine, azelastine, and loratadine. Most trials in humans used modern antihistamines, which I agree with. I do not generally suggest any first generation antihistamines including Dramamine, Benadryl, NyQuil, or their generic versions unless you have a medical reason for choosing them & their adverse anticholinergic effects. H1 antihistamines are typically available without a prescription in the US.
A recent study from Germany found a Nasal H1 Antihistamine, Azelastine Nasal Spray reduced covid infections by 69% (nice). More research is needed, but a 2x a day dose of Azelastine, or 3x a day dose of German Azelastine is extrapolated to be beneficial from a long covid precaution perspective, similarly to other H1 medications above. This is typically available without a prescription, and is inexpensive in the US.
H2 Antihistamines, especially Famotidine/Pepcid, reduce both symptom severity and viral load, leading to an earlier resolution of infection. These are available without a prescription in the US, and typically inexpensive.
Paxlovid is less effective at decreasing Long Covid risk in the acute phase, but does have other benefits, even if started late. It is additionally showing progress as part of a combination therapy. Stock up on mints and cough drops though.
Magnesium, Vitamin C and other immune-boosters can be very beneficial IF you are not autoimmune/don’t have other relevant considerations.
If you are on trans masculine HRT or similar medications please continue. Men & NB people with similar levels of hormones have lower risk and sometimes lower symptom burden than women & NB folks with similar hormone levels. We aren’t sure why yet.
Other OTC items which might help lower the viral load or otherwise make the acute infection less impactful:
A mouth wash containing PVP-I [povidone-iodine] or CPC [cetylpyridinium chloride]. This can be used multiple times a day.
Green tea (ECGC)
Hibiscus tea (ACE2)
Antioxidants and omega-3 fatty acids (including flaxseed oil, fish oil) help remove oxidative stress, which is helpful in both acute Covid (infection and replication causes OS) and in multiple forms of Long Covid. I’ve read . Antioxidants are vitamins A, C, E, Selenium (Se), and Zinc (Zn). Vitamin A is possible to overdo, so please be mindful of dosing.
Transmission Precautions (how to protect people you live with, etc):
COVID is most often transmitted via the air, not droplets like we thought early in the pandemic. As such:
Fresh air will be your easiest and most effective option, assuming climate safety. Even a slightly open window will be MUCH better than closed windows.
Masks are extremely effective, especially when both parties wear them. Respirators (aka a mask with a safety rating such as N95, KN95, KF94, P2, FFP2, DS) are best, but anything is better than none. Try to get as good of a seal as you can/minimize air leaks.
Air filtering with HEPA filters is great if you have access and funds. Try to make sure the filter(s) you use are sufficient for the square footage of the space. Earlier variants had a filter goal of 6 air changes per hour (ACH), but anything is better than nothing, especially when combined with opened windows, etc. If the filters are insufficient for the square footage/meterage or ACH, place them for largest impact: for example close to the sick person, in areas with poor ventilation, or areas of high social contact.
If HEPA filters are too expensive or unavailable, try to make a Corsi-Rosenthal Box (a DIY air filter alternative using MERV13+ filters and a box fan, free directions abound online). Same strategies as above.
Last home air filter precaution: most climate control systems have a filter, and if that filter is already or can easily be changed to a MERV13+ filter, that will be an additional help.
If you must run errands/go to work/etc, please prioritize one of the rated respirators above. Try to do curbside or other distanced, outdoor pickup options where available.
There are nasal precaution options including the aforementioned OTC H1 Antihistamine Azelastine and Profi Spray (which is highly effective, but their science was measured with nasal swab application, not spray).
It doesn’t take a lot: We have stopped the acute spread of Covid in our home two times (that we know of!–the real number is probably much higher) by using only a couple strategically placed HEPAs and window cracking.
If you feel any sustained exhaustion or fatigue, please rest and do not push yourself for at least two-three months after infection, including physical and mental exertion. A lot of us long haulers had an inkling early on that something was off but we pushed ourselves to be “back to normal” and that caused immense lasting harm. It might sound like a long time now, but a few months is a short time in comparison to the rest of your life. Trust me.
I wish I had read this earlier: Indefinitely Ill – Post-Covid Fatigue
Pacing is the most helpful tool I have found for my health, and has been practiced by people with post-viral illness for a long time.
Intro to pacing: ME Action’s Stop Rest Pace
Scheduling breaks with reminder alerts is how I do it, and by having specific things I look forward to about downtime (slowed audiobooks, a nature soundscape, etc). Some people are better at remembering on their own.
Lastly, I recommend using a symptom tracker even for initial infection (and that couple month period after). Hopefully before too long there won’t be many symptoms to track and things’ll be mostly a-ok, and it won’t be needed, but the way covid makes the brain all squiggly, IMO tracking symptoms is super important for understanding what your body needs to have your best chance at maintaining your current health!
The app Visible is popular in some LC communities, but a journal or calendar is a-ok too. It helps to check in with your body and see how much feels safe to do and what to prioritize. (Visible is free for symptom tracking and I recommend the free version short-term. If you end up needing long term pacing help and want to include the paid wearable, though here’s my coupon code: https://join.makevisible.com/68284299c4dc3e )
**Thank you for taking care of yourself and your communities. We need all the precautions, kindness, and care we can get right now.**Additional Covid Safety info from someone else’s patreon: https://www.patreon.com/posts/huge-free-covid-86871700
the figure on the bookmark is silhouetted in outline vs the shape of a house, outlined in red and filled with purpley blue textures. the head of the figure, angled to the side, is attacked from all angles with dark rough textures of inky depths with red/rust particles, and purple angular lines pointing inwards, and breaking past the lines of the house. the figure stands on a square of purple ink as well, which balances the composition
September Mutual Aid. 150/2500 for bills, medical, personal care, and October rent due 10 days. If you want to just support a disabled Native artist share or donate. Also have my kofi where I sell my art.
PayPal.me/kiagbear
Cashapp $kiagbear
Venmo kiagbear https://ko-fi.com/mahtheyzhawey/goal?g=0
716/2500 rent and utilities due tomorrow. Disabled and unable to work a regular job. Selling my art and donations is how I stay safe and housed. Anything helps. ❤️