Just read Terry Pratchett: A life with footnotes.
Now I'm not the target audience for this, since I've never been a fan of biographies.
Still, if there was one I wanted to read it was this one.
As an aspiring writer of "Fantasy/Attempted Comedy", with a number of chronic illnesses, it felt relevant. ☺️
Hey my chronic pain, peeps. I managed to advocate for myself this month and finally have a path to see a neurologist and rheumatologist, but I'm pretty certain I'm not getting any medical advice or help for the POTS and anything other than LDN for the M.E..
A lot of the time I feel like I'm talking to a wall and I get so frustrated that I'm in tears halfway through my appointment.
Healthwise what should I be doing to help manage my POTS? I'm getting nothing from my doctor. Are there any supplements you find help it, or your M.E.? Any good online guides? I'm doing my best to maintain pacing to avoid P.E.M. but I really don't feel like I have a good handle on all of it.
is there an established phrase or term for the phenomenon where, if you do something when low on spoons/energy, it actually takes MORE spoons and energy than if you rested first?
like, one very able-bodied neurotypical strategy is "clean-as-you-go," for example. the idea is that if you put things away immediately after using them, there will be much less cleaning to do later on.
but for my neurodivergent and disabled brain/body, i can do twice as many chores for half the energy on a good day than i can "in the moment." there is a very high penalty for forcibly directing my ADHD attention to a task it won't naturally go to, or for pushing my tired body to rinse and wipe a bowl and put it in the dishwasher as opposed to putting it in the sink to wash another day.
i don't like having a sink full of dirty dishes, but it is completely true for me that it is in fact MUCH easier to do an entire sink full of dishes once a week than to wash each dish one at a time as i use it—especially given the implied effort of having chosen and prepared a meal just before.
but is there a shorthand phrase or term for this concept???
i don't think i'm referring to post-exertional malaise, which is a specific symptom of ME/CFS (and absolutely does adhere to this concept). burnout doesn't seem quite right, either. and it's not unique to illness or neurodivergence—ANYONE who doesn't get enough rest will ultimately be much less productive for much more effort.
if there is a photo with missing or inadequate #Alttext one can use #Alt4Me in the comments to get someone to add it. & if one adds an alttext to a post use #Alt4You
mine can be poor bc i am visually impaired & have great difficulty visualizing. but i do try.
so far i have not had any nitpicking or criticisms from a single fellow visually impaired person. all issues about it directed to me have come from fully sighted folk.
I am looking to hire a social worker or equivalent in Ontario for 5-10hrs/mo. Eastern ON area, but can likely do remote.
Need someone hip with the complex bureaucracy of supports. But more importantly someone innovative, wanting to explore and foster change and create new things - because existing supports are shite.
I completely understand why some #neurodivergent people, - #autistic people in particular - are uncomfortable with the word disabled. The medicalisation of minority neurotypes is hugely problematic & is used to fuel oppression.
But as someone who is neurodivergent and also #disabled by #ChronicIllness the “ew we’re 𝒏𝒐𝒕 disabled” rhetoric feels like a real slap in the face. Really feels like I’m not wanted anywhere.
I have a terrible time remembering which pills I've taken or if I already took my pills so I finally got frustrated and devised a random ADHD hack. I can't always remember if I've taken them, but I can remember if they were upside down or right side up for some reason. So I started flipping them over every time I take them. I can also make sure I took all of them because they should all be in the same direction. I'm perplexed, but it's working. #adhd#audhd#chronicIllness#adhdHacks
Six year ago, I returned to NIH in Bethesda, where I started my career as a science writer, to be a patient in an ambitious study to understand the patho-biology of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
The study included 30+ researchers & many substudies, and was essentially a fishing expedition to understand what goes wrong to make us so sick (like bedbound-for-years sick). 1/24
"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. "
Before and after of my drum sesh. Despite these #ChronicIllness issues (potentially, as we’re at around 5 months of still trying to figure out what’s going on), I still force myself to drum (almost) everyday. Supposed to only be 30 minutes but every time I’m ready to stop, the next track starts and I can’t quit. 😂 #music#drumming#hades#FinalFantasy#gaming
I’m so fucking angry. For the first time since diagnosis I have new lesions. Nearly eight years with nothing new on my #MRI and suddenly multiple new lesions. I’ve had a day to sit with it so I no longer feel like I’ve been punched in the gut. But even still. I’m so disappointed. I’d almost tricked myself into believing it was going away. Fuck you, MS. #fums#rrms#ms#multiplesclerosis#pwms#chronicillness#brainlesions
I have coped with so much this winter. So fucking much. And then of course something trivial tips the cake and I fall completely apart.
Oof.
Please send me all the utter bloody silliness!
My limbic system needs the discharge of some lolz, and my mind needs to think about something other than the shitshow that is human existence these days.
Hi friends, I have put a lot of stuff on sale at 50% off to clear space and make room for more new goodies!
I also have mystery bags/bargain bundles which are excellent value for money if you struggle to choose. I always send way more than I should, so you’ll def get A LOT of goodies 😊
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 🎊🎉
This is your periodic reminder that ambulatory wheelchair users exist. Many folks think wheelchairs are only for those who can't walk at all, or folks who can only take a couple steps.
Wheelchairs and electric scooters are used due to pain, weakness, balance issues, orthostatic intolerance, etc.
Made a couple of years ago but evergreen. Chronic illness bingo.
Someone commented on the original that if you tick most squares, at least you've tried 😄 And while that's true it's not as comforting as it should be!
The brilliant author Elle McNicoll has set up The Adrien Prize to champion the writing of authors who include positive depictions of #Disability and #ChronicIllness in their children's books following the closure of The Blue Peter Children’s Book Award earlier this year. The shortlist has just been announced, as follows:
The Secret of Haven Point by Lisette Auton, Puffin Books
Wilder Than Midnight by Cerrie Burnell, Puffin Books
A Flash of Fireflies by Aisha Bushby, Farshore Books
This is a brand-new prize to get behind and it’s great to see that The Book Trust have recently given away copies of the longlist to schools in a competition.
This article has a little more information about the prize > https://www.lovereading4kids.co.uk/blog/elle-mcnicoll-launches-new-childrens-book-prize-the-adrien-prize-6408
For anyone feeling beat down or worn out, a reminder just continuing to survive in a society that thinks you are disposable is pretty fucking punk rock.
Your messy (currently) miserable existence is an act of rebellion.