i-the-spoonie

[i-the-spoonie]

Just because you genuinely care about something does not magically give you the energy for it

[i-the-spoonie]

[i-the-spoonie]

[i-the-spoonie]

[i-the-spoonie]

Having dreams crushed by disability is such a deeply traumatic experience, the realization that you’ll never be able to do the thing you want most in life because your body isn’t able to handle it. Waking up the day after you received the news and feeling that utter sense of heartbreak in your chest. Watching people go on and do those things while you sit on the sidelines, forced to watch bitterly. That feeling of being trapped, imprisoned by your inability to do what you love. The grief, the anger, the sadness. All because your body doesn’t allow you to.

[i-the-spoonie]

[i-the-spoonie]

"Disabled people can do everything abled people can!1!1!!" I'm gonna have to ask you what you think disabled means

[i-the-spoonie]

Dealing With Executive Dysfunction - A Masterpost

The “getting it done in an unconventional way” method.

The “it’s not cheating to do it the easy way” method.

The “fuck what you’re supposed to do” method.

The “get stuff done while you wait” method.

The “you don’t have to do everything at once” method.

The “it doesn’t have to be permanent to be helpful” method.

The “break the task into smaller steps” method.

The “treat yourself like a pet” method.

The “it doesn’t have to be all or nothing” method.

The “put on a persona” method.

The “act like you’re filming a tutorial” method.

The “you don’t have to do it perfectly” method.

The “wait for a trigger” method.

The “do it for your future self” method.

The “might as well” method.

The “when self discipline doesn’t cut it” method.

The “taking care of yourself to take care of your pet” method.

The “make it easy” method.

The “junebugging” method.

The “just show up” method.

The “accept when you need help” method.

The “make it into a game” method.

The “everything worth doing is worth doing poorly” method.

The “trick yourself” method.

The “break it into even smaller steps” method.

The “let go of should” method.

The “your body is an animal you have to take care of” method.

The “fork theory” method.

The “effectivity over aesthetics” method.

[i-the-spoonie]

they seriously need to invent a medication that has no side effects and no risks and that cures everything that is wrong with me instantly and forever. and is raspberry flavoured

[i-the-spoonie]

does anyone know how to stop the body from keeping score? i have shit to do

[i-the-spoonie]

I don’t understand how when a doctor runs a test for a symptom, and the test doesn’t explain the symptom, that doctor decides the only logical conclusion is that the symptom isn’t real rather than their test not being the right one. How does that make any sense???

[i-the-spoonie]

We need to recognize the collective trauma disabled people went through and are still going through with covid when everyone around us told us that our lives were less important than their convenience. That "only the sick and elderly will die so why should I do anything differently?"

I lost my faith in humanity at that point and I don't think I'll ever be able to get it back.

[i-the-spoonie]

Summary that was posted on social media:

1) Here it is, our overview of the most interesting ME/CFS studies of 2024. If you think we’re missing an important one, feel free to post it as a comment below

https://mecfsskeptic.com/2024-looking-back-on-a-year-of-me-cfs-research

2) A recent preprint used data from the UK Biobank and showed that there are many differences in the blood between ME/CFS patients and controls. Their analysis suggests that these differences are not due to inactivity or deconditioning.

3) The Intramural NIH study did the most extensive set of biological measurements ever conducted in ME/CFS patients but because of the low sample size (n = 17) and focus on ‘effort preference’ it has mostly led to disappointment.

4) The MCAM study recruited patients from 7 ME/CFS specialty clinics and assessed cognitive functioning in more than 200 patients. Accuracy was relatively normal but information processing speed was significantly lower in patients versus controls.

5) This year, the largest study on repeated cardiopulmonary exercise testing in ME/CFS was published. Although there were small to moderate effects, there was a large overlap between patients and controls. It is unclear if this procedure can be used as a diagnostic test.

6) 2024 also saw two big rehabilitation trials for children with ME/CFS: MAGENTA and FITNET-NHS. Both had null results suggesting that GET and online CBT (FITNET) are unlikely to be cost-effective.

7) We also had a new prevalence estimate using statistics data for NHS Hospitals in England. Extrapolating the highest rates to the entire UK would mean that 390.000 people (0.585%) get ME/CFS in their lifetime.

A Norwegian study showed how wages dropped dramatically and sickness benefits increased before and after an ME/CFS diagnosis.

9) Honourable mention: following the tragic death of Maeve Boothby O’Neill, Prof. Emeritus Jonathan Edwards wrote a paper on managing nutritional failure in people with severe ME/CFS, including suggestions that can supplement the NICE Guideline.

====== comment: Another excellent blog from this account. Note that the social media summary only highlights a few of the many studies that are discussed in the post. Saying that, I didn’t find it overly long either. Highly recommended.

[i-the-spoonie]

Let's talk about what I like to call ranch bottle inaccessibility (inspired by wrestling with a ranch bottle to get the seal off) (please tell me there's a real name for this) which is inaccessibility with packaging. Ten thousand rubber bands on toy packages, freshness seals that are impossible to get off, water bottle caps (fuck water bottle caps). They're so hard for disabled people (and children at that, why can't kids open their own toys without help?). It's pissing me off. Having to have help opening water bottles, using can openers, destroying my teeth since I was little to open toys and candy packages.

[i-the-spoonie]

[i-the-spoonie]

Hot take it’s not actually accessible if I have to ask an abled body person for help or assistance