Umm... can someone who has the spoons handy log an issue that their latest release (non-beta) tarball is double-gzipped? (https://github.com/gwsw/less/issues)
#SpoonTheory -- I'm doing fine, but dealing with github REALLY DOES cost a couple extra spoons even when you're having a good day, lol. Stop using that MSFTy GPL-violating crap, my peeps! :P~
But it’s also about neurological processing time. It is a soul crushing experience to be engaged in the change – of the lifechanging kind – that somebody you deeply care about would like to see in you, only to be told “sorry, your time box has expired” when you come up for air.
I was just thinking about spoon theory, and I realized we talk a lot about having the spoons to do things, and spoons being taken away. But what activities give you spoons?
I cannot express how huge this is. Being able to get a diagnosis via blood test is so HUGE. For those lucky enough to have never experienced it, many of the conditions along with #MECFS that they hope this blood test could diagnose with over 90% certainty normally take YEARS to be diagnosed. #LongCovid#fibromyalgia#ms#LymeDisease
These are all life changing illnesses. The quicker you are diagnosed the quicker you can be treated.
I just want to add that treatment does not equal cured for many of us. Treatment can mean different things to different people. For me it was learning how to live in my new body. Learning what pacing means using #SpoonTheory for context. Making a pain management plan with my doctor. Relearning a bunch of dexterity based skills etc.
Just had one of my worst experiences since having #LongCovid - I felt so poorly this morning too after a bad night sleep, but dragged myself to an online video group chat with the NHS Long-Covid Hub. Basically the facilitators said a load of shit about how the symptoms aren't often based on anything actually being physically wrong and there is often no lasting damage (yeah, they said that with confidence) and that it is about "reframming" the brain and its response to symptoms when doing various activities. They tied this into Somatic tracking etc. I was the only one in the group that spoke out on this by saying that I was concerned they were suggesting the symptoms are in our mind rather than being the physical reality they are - for instance, they were citing that tests often say we are fine or the fact symptoms fluctuate as evidence for what they were saying. They responded by coopting terms like #PEM and #pacing but the message was for the majority of people with Long-Covid there is nothing to really worry about as it's not physically harmful and rather about retraining the brain.
I was so mad and angry and felt so isolated. Then the facilitators spent the rest of the session periodically saying things that seemed directly related to me challenging them, for instance this included: "[to the group] I am so glad you have taken it on board and seen it for what it is." "It is neuroscience" "Not going to resonate with everybody" "we are providing evidence based options". Sadly noone else spoke out and backed me up and actually people in the group backed them if anything about how useful it was (I know this will sadly include people that are new to this shit and won't know the history of this well documented by the ME/CFS community). It just added to the sense of isolation I felt. Horrible experience.
This is something I haven't experienced at the Long-Covid Hub before and seems to clearly tie into the government's agenda around Long-Covid and how they want people with Long-Covid to get back into work, as they argue being out of work for longer makes it worse etc. Retrain and reframe those symptoms at work to see the "benefits" of being a "productive" part of the system kind of BS. Oh and of course, the main facilitator has had Long-Covid and they said they used these techniques/approach to recover from it.
I am glad I said something but sad I was the only one. I also feel gaslighted. And the Hub is the main source of support I get as someone who has had Long-Covid for 3+ years. Thankfully, but also sadly, I know that there are a lot of people here on Mastodon that understand how I feel and why I feel this way.
At a recent outside (#CovidIsAirborne#CovidIsNotOver) family gathering, which despite pacing and restrictions regarding location and time I spent I still haven't recovered from, when my #LongCovid did come up (which doesn't happen often) the word "tired" was mostly used. "Oh, you get tired from things like this", " I hope you didn't feel too tired from it". After facing gaslighting from people close to me these last 3 years of having Long-Covid - especially when there wasn't even a term for it and how this relates to widespread, dangerous gaslighting and 'treatment' for people with ME/CFS - I felt agitated and angry, with my experiences and identity minimised/ignored. I do feel I need to do more to challenge when people close to me do this whilst not taking up too many spoons.
Relating to this, it felt cathartic and reaffirming to read this article (paywall bypassing link below) and be like, yes that's what it's like, that's how I have felt for so long now. Definitely recommend reading (as a note, the article is quite long - I needed several pacing breaks to finish it but it was worth it):
@audhd I got a surprise today! There are real people out there who have signed up for my Low-Spoonz Newsletter off of www.BZBrainz.com after my April release. I have not yet sent out a newsletter, but I will within Quarter 3. It's titled the "Low-Spoonz Newsletter" for a good reason! You won't hear from me often, only if I have something to share and as I have spoons to share them. #chronicallyill#actuallyautistic#adhd#spoons#spoontheory
Hello and welcome to my #introduction 👋I am a mid-thirties, late diagnosed #ADHDer, with an #autistic partner. Coming up to my diagnosis 1-year anniversary 🥳 and learning lots every day, having regular “aha” moments. I work PT #burnout in a library and spend my free time trying to coral my unruly curiosity fairly unsuccessfully.
If you see people on Mastodon talking about "spoons" in a way that doesn't seem to make sense, they are probably making a reference to "Spoon Theory," a great analogy for limited & unpredictable personal resources.
Here's the original Spoons essay that started it all, which is well worth a quick moment to read.
I wanted to post this for my #ADHDers and the #NeurodiverseSquad at large. These are low- to no-effort nutrition tips that I have accumulated over the years for "no spoons" days:
There are a ton of veggies you can eat with no preparation at all. Baby carrots, snap peas, cucumber, grape/snacking tomatoes, mini bell peppers (the red ones are sweet and you can bite into them like an apple), romaine/leafy green lettuce, spinach, mushrooms, canned bamboo shoots/menma, jalapeños, bean sprouts, and a bunch more.
Sardines. They are a great protein source and so damn nutrient-dense. All you have to do is pull the top off the can.
Sprouts can be added to sooo many things. They're barely noticeable and they pack in a lot of extra nutrients. I like alfalfa sprouts, but there are also clover sprouts, broccoli sprouts, and others--and they're all super good for you. I put them on sandwiches, mix them into salads, wtv.
Plain avocado oil is a fine salad dressing that's also a great source for healthy fat with Omega-3s. It's also good on rice, potatoes, or anything you'd put butter on.
Oatmeal is a great healthy carb. Just get some instant oats and add water. Microwave or use an electric kettle. You can add some fruit and honey to make it sweet, you can add chocolate protein powder and peanut butter to make it decadent, you can throw sautéed mushrooms and chives in it and put a fried egg on top to make it savory.
Peanut butter is my JAM, but almond butter is arguably better for you. Just find a nut butter with as few ingredients as possible on the label, but ideally one that is no stir. Eat it with a spoon, put it on bread, put it on apple slices, put it on put it on whatever. It can be high sodium, but if you're having trouble getting enough calories or enough protein: peanut butter.
Are you having lots of no spoons days? Depression slump? Chronic illness? Let me introduce you to Tray™. Just get a normal tray, ideally with hand-holdy bits. Reserve a shelf in your fridge for it, and load a variety of foods onto it. Maybe some lunch meat, cheese, a bit of dark chocolate, whatever you want. Just put a bunch of zero-effort foods, then when you are hungry, remove Tray™, eat stuff off of it, return Tray™ to fridge. Just make sure to restock it every week.
If you have the means, look into Instant Pots. Especially the ones with the air fryer. You can bake potatoes, make hardboiled eggs, rice, broth, and all kinds of basics really easily. There are also a bajillion hands-off, one-pot recipes that you can make with it. Dump some stuff in, put on the lid, press a couple buttons, wait a few minutes--dinner's ready. It takes so much time, thought, and energy out of cooking.
Easy portions: your plate = 50% veggie, 25% lean protein, 25% complex carb. Add a Tbsp or two worth of healthy fat onto that.
I hope this helps! Please feel free to comment any tips you've picked up.