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.
Mary previously said we could describe it as follows:
A fictionalisation of the struggles of a woman with #MyalgicEncephalomyelitis (ME), and the obstacles she faces on a daily basis as a wheelchair-using mature student.
Please don’t give me contacts for domestic violence orgs. They don’t help disabled people with housing & only offer counselling. Also, that list of disability advocates going around for #Melbourne#Australia (where I am) is outdated - there aren’t any in my catchment. So I’m looking for volunteers with some background.
This is an org I came across a while back. As it says in the pic and on their homepage, they are all about "Mutual Aid and Human-Centered Learning for Neurodivergent and Disabled People". ...
Now things are worse, I’m much sicker, being neglected and will die without a safe stable #home. Doctor’s words.
If not mentioned in the article, my father is a diagnosed narcissist with psychopathic & antisocial tendencies by a #psychiatrist. He urged me get away from my father asap because he is not a ‘safe person’ & neither are the other members who lured me back through the promise of help.
He truly isn’t but I have nowhere to go.
I’ve tried every level of government, every service and they simply won’t help.
Please ask people in real life if they have somewhere for me to go. Could they take me in (can pay small rent)?
Is anybody an #advocate? I desperately need help.
I would be incredibly grateful beyond words.🙏
(FYI the help services you may be searching for don’t help in my poor safe Labor catchment. All the services are divided into catchments & mine doesn’t count.)
There has been some confusing media reporting of Medicare coverage for telehealth in the last few weeks. Here's a quick explainer.
During the pandemic, Congress expanded telehealth services covered by Medicare. This benefit has been important for those with ME/CFS and other debilitating illnesses, allowing them to see their physicians without expending valuable energy or risking infection. This expanded coverage was a temporary measure, set to expire at the end of 2024. There was significant bipartisan support to extend this coverage for another two years in the next budget, but because that budget bill failed, and the country is operating under a short-term stop-gap funding bill, Medicare coverage for telehealth is set to expire on March 31st.
With current bipartisan support, another temporary extension is likely under whatever budget measures lawmakers agree to this month. The hope is that Medicare coverage of telehealth will be made permanent. If this coverage is important to you, tell your elected representatives. See the links in the Advocacy section to find how to contact your Congressional representative.
USA News10 ABC Meet the Americans who still take COVID-19 precautions seriously
On clinically vulnerable patients (including an ME patient and a carer) shielding from Covid-19. Researcher Leonard Jason says trauma is part of the experience of chronic illness, and then there's additional traumatisation by the societal reaction to the illness. Researcher Akiko Iwasaki is also taking precautions and says: "I just can't afford to get sick and become chronically ill".
For me, the exercise and stand goals aren’t realistic due to my health limitations. On bad days, the constant reminders to move can feel discouraging rather than motivating. While there’s the option to turn notifications off entirely, I still want to track my movement or standing progress in a more flexible way. It would make a huge difference if the activity rings and goals could be fully customizable to accommodate individual abilities and needs.
To my fellow #Disabled and #ChronicPain warriors: What other areas do you think tech could be more inclusive? Whether it’s device features, apps, or software design, I’d love to hear your thoughts! Would you also be okay with me including your name or username and a quote from you in the blog post? I want to uplift your voices as part of the conversation.
Although this post is meant to elevate disabled voices, developers, designers, and usability experts are welcome to join the discussion and learn how to create more inclusive tech.
Let’s brainstorm ways to make tech work better for everyone! 🌟 Thank you in advance for sharing your insights!
Question for anyone with POTS or general orthostatic intolerance and who still uses a computer for relatively long periods (for job / studies / hobbies): what is your favourite chair design for working at a computer (laptop)?
A photo would be ideal, but description would be very useful too.
I have a regular upright chair right now and use a regular desk, no adaptations. But I sometimes feel like I can’t support myself well in upright positions when my chronic illness is kicking my butt. Of course, if brain fog also hits then I just rest and don’t use a computer and sit at a desk, but I’m often in between that. Would be nice to have a supportive chair for both upright positions when I’m doing well and for when upright is too… ummm… upright?! 😆 But also important to make sure I don’t hurt my neck if reclining and then straining to see a screen while simultaneously use a keyboard and mouse. I truly can’t think of a solution right now and if one exists?
My most used #accessibility tool is a pair of needle-nose pliers. They live on my kitchen counter.
Small pinching motions are painful and difficult? Need to take the plastic/paper/metal seal off every bottle and jug on the planet? Needle-nose pliers.
They're also great for opening pull tab cans, single-serving cat food containers, and cardboard boxes with those horrible little push/pull pour spout tabs.
The bottle of cold brew coffee, but this time the needle-nose pliers have been turned while still gripping the pull tab so that the metal seal is wrapping around them and has been pulled open, revealing the delicious beverage beneath.
Please don’t give me contacts for domestic violence orgs. They don’t help disabled people with housing & only offer counselling. Also, that list of disability advocates going around for #Melbourne#Australia (where I am) is outdated - there aren’t any in my catchment. So I’m looking for volunteers with some background.
I want to share this site called Stimpunks, which I find myself frequenting when looking for information, inspiration, affirmations...all the 'tions
This is an org I came across a while back. As it says in the pic and on their homepage, they are all about "Mutual Aid and Human-Centered Learning for Neurodivergent and Disabled People". ...