People with #ChronicIllness that limits energy and uprightness like POTS or #MEcfs will recognize this pattern of mine from last week. Down days and then days when I take stimulants to do some stuff, then more down days.
I miss the Twitter #disability community but hoping to find more folks here.
A reminder to people in Ontario that we do have universal pharmacare for people who don't qualify for the Ontario Drug Benefit, though it's (deliberately?) not well publicised.
The Trillium Drug Programme has a deductible of around 4% of your household income, so if you're taking (or need) expensive medication, this will cover it, as long as it's on the ODB formulary.
I had to cancel plans I was feeling two ways about anyway, today, because both I and the person I was going with have chronic illnesses and body conditions that are interfering today.
Someone said on Twitter yesterday that age is only a number as long as we stay healthy, well, and happy.
I would flip off the screen but I still can't straighten my fingers well.
Really feel like mastodon's design doesn't prioritize protecting users from the actions of a malicious admin enough. If the pitch is "if the admin tries to burn things down then you can move" then for that pitch to work it can't be that an admin can torch everything before you have time to react
Yes, they can always take the instance down immediately and in its entirety, but thats not what I'm talking about. But hey actually, if that happens there should still be a way to recover and move your account
EDIT: "make backups" is not a solution because the most valuable part of a social graph is people who follow you, and those cannot be backed up
@eniko I missed your other two messages, so I deleted my original reply. I do see your point, and I think it shows the need for trusted instances with public, stable, and transparent governance for people who experience them as critical social infrastructure.
That said, the fediverse is good for (re)connecting quickly via hashtags and boosts. I rely almost entirely on the #disability and #chronicIllness hashtags to connect with others in my situation, rather than on my social graph.
Need to get more yoga teaching hours in, and so I've set up a form for those who might be interested in free private or group classes designed for #neurodivergent &/or #chronicillness individuals.
(Or anyone who wants non-pretzel, easy/accessible/gentle yoga.)
I waited three months for a phone appointment with the top #gastroparesis expert / gastroenterologist in the country… but he forgot to call me.
I rang his secretary twice last week to confirm the appointment. I was supposed to see him at the hospital but I had to switch over to a phone call because none of the 25 ambulance companies I contacted would transport me there (too long a trip).
My friend, Vanessa, is no longer homeless! She still definitely needs financial assistance if anyone can help. She didn't get anything before from anyone but me. She has a Venmo account now too.
This summer will be the second one that my parents won’t be able to go on a holiday trip because they’re stuck at home having to care for me 24/7.
It would do my mom a lot of good as she’s overworked by her company to the point of being really burnt out, but like last year she’ll be working from home in August.
Severe #MECFS is as tough on patients as it is on their families (for those who are lucky enough to have a supportive one).
Sometimes... I wonder... as an adult without children... what it's like for my mom every time I have to tell her I also have the same (negative) genetic condition she has... or her sister has... or her mom had, etc.
Like... I would feel SO bad passing any of my crappy medical issues down to a kid (one of the reasons I'm childless).
Have you ever had to go through this? Have you ever thought about this? Or is my Autism just going for a ride... lol
I really, really, really want a dog… but I doubt my 17 year old cat would appreciate it.
I also worry about my ability to care for one due to my occasional increased mobility restrictions (cane/wheelchair use).
I could use the emotional support. I could use the project of caring for a dog again. I miss it so much. I just don’t know if my body will allow me. Bummer.
Enough food to last until next week probably, but need to buy medication that isn't covered ($75) food for my mom, myself and cats for the rest of the month.
Any help is so appreciated 💗
We are both too sick to work, other than (very very occasional) freelance writing.
I’m at the hospital today for the nutrition follow-up that I was supposed to have 2 months ago.
They’re worried about my weight loss but still won’t do anything besides putting me on treatments I’ve already tried (erythromycin and Mestinon).
They’re also saying they’ll remove my nasojejunal tube once I’ve regained enough weight because that should improve my digestion. I’m so tired they don’t understand that my #gastroparesis is linked to #dysautonomia / #POTS, not weight loss (alone)
and that I’ll go back to losing weight (so, square zero) if I don’t have tube feeding to help prevent that. My GI tract isn’t going to magically reset itself…
Oh, and they want to wean me off of diazepam.
Just frustrating and worrying all around.
At least I can do another gastric emptying scintigraphy when/if I regain weight to prove that my #gastroparesis isn’t gone.
I'm so glad I was never big on taking pictures when I'd do things, because on the rare occasions that I stumble upon such pictures I get so incredibly depressed, comparing my current state to how I was before...😢 #ChronicIllness
Doctor called me out of the blue today to tell me they're going to pull some specialists into a differential diagnosis meeting about my beautiful rainbow of conditions. So grateful to have movement - and to have some hope that we could make progress soon! 🤞
Here's the News in Brief from Science for ME forum for week starting May 29. It's a weekly news summary covering research, advocacy, coming events, and more:
There was a food truck event a block away from our place and my spouse wanted to go check it out; I spent the day in bed to try & make sure that my body would be able to handle it. We spent about an hour there, when we got home I crashed and right now my body feels like it’s shutting down😖It’s insane how just an hour of slowly walking around can fuck me up😔Now lets see how many days it takes me to recover…#ChronicIllness#MECFS
8 hours of sleep and I feel worse. That’s #CFS post exertion malaise. I knew it would hit me like a truck eventually with the move but - damn - on move-in day?
So I took a shower tonight. I know that doesn't sound very exciting but when you have a #ChronicIllness that hasn't responded to treatments, it can feel like winning a jackpot sometimes.
#RheumatoidArthritis is an #autoimmune disease where the immune system attacks your body rather than viruses/infections (it's why we're considered immunocompromised). So it causes a ton of fatigue, chronic pain & brain fog.
Gotta take those wins where we can so, YAY SHOWER 🎊🎉
"Living in this time of “wellness” can also be challenging for those of us living with a chronic illness. This culture places a heavy focus on personal responsibility that can feel toxic when it is used to shame or blame a person for their chronic illness. How badly do you want to get better? is the message that is commonly used to sell diets, supplements, coaching, etc. I embrace all modalities of treatment for my RA, including holistic treatments, but I have found that I am the most at peace when I am seeking the acceptance stage of grief. When I accept that I am living with a chronic disease and try to make the best of the situation, rather than seeking ways to “heal” or “cure” my incurable disease. "