@britt@mstdn.gamesWhen your body forced you into shutdown nap mode from 6-8pm but now you can’t go to normal sleep. 
I *almost* made it through the day.
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#mecfs
12 posts9 participants3 posts today
@britt@mstdn.games
“I don’t know how you do it! I could never be chronically ill!”
We didn’t get a choice. No one asked our permission. Disability just happens. It can happen to you too.
We cope because we have no choice. We can’t trade our bodies in for new ones. We can’t “try harder” our way out of it.
“Unfortunately most people can’t process the lack of choice in the matter. They genuinely believe that we either want to be this sick, or could get better if we really ‘tried’. They believe they wouldn’t be able to handle what we go through, because they’re convinced they will never NEED to handle it. They’re the exception. Chronic illness won’t happen to them”
https://www.disabledginger.com/p/why-are-chronically-ill-people-forced
The Disabled Ginger · Why Are Chronically Ill People Forced to Hide Their Pain?
When I started The Disabled Ginger I sent it to my friends and family … as most of us do.
I was proud that I was finally standing up for disability rights. That I was taking my pain and putting it on the page in an effort to help others. That I had found something that lit a spark inside me.
Unfortunately, many of my friends didn’t feel the same way.
My disabilities are invisible, and I had become very good at hiding them. Apparently that’s what people expected of me, as they didn’t like this “new” version of Kelly.
Almost none of my friends subscribed. What’s worse, many stopped talking to me. Or would only reply in brief texts.
It’s almost been a year since I launched, and my circle is noticeably smaller. Many people I thought I was close with haven’t reached out for nearly 6 months.
When you find your purpose and your passion, it’s an incredible feeling. Hopefully people support you.
Not everyone will. And that’s ok.
It’s painful seeing so many relationships fade away. It hurts knowing they don’t see the value in me now that I’m “officially” disabled.
As painful as it is, it’s also a perfect example of why I became an advocate. Ableism is a huge problem. Being disabled can be incredibly lonely. I wanted to give a voice to those who haven’t yet found theirs.
In the process I’ve met incredible people from all over the world who inspire me to keep going. Who give me a reason to write every day. Who remind me of the compassion, love and goodness that’s still out there.
Thank you to each and every one of you. I couldn’t do this alone.
My latest looks at the reasons we hide, and what would happen if we all decided to stop hiding and show the world the realities of chronic illness:
https://www.disabledginger.com/p/why-are-chronically-ill-people-forced
The Disabled Ginger · Why Are Chronically Ill People Forced to Hide Their Pain?
My significant other was diagnosed with breast cancer today.
It’s small. Hopefully the treatment will be easy and successful.
She’s my caregiver and the caregiver to her 88 year old mom. How is this possibly going to work? I feel so scared and helpless. If I didn’t have #MECFS, I could do all the things to help her. Right now I’m in a severe crash and can barely take care of myself. I’m so overwhelmed.
I have to believe she’s going to be ok. I have to.
Food, MECFS, Cooking Tips
Maybe the biggest cooking tip I've had to embrace these days is: Sit Down
Probably the most exhausting part about being a ship's cook was standing on a steel floor 12 hours a day. Now I'm lucky if I can manage half an hour on a fatigue mat at most.
I boiled some eggs for Korean mayak gyeran (drug eggs) this morning. I don't care that I'm a messy peeler these days and I'm sitting down and taking breaks between eggs. They will get peeled eventually. These eggs are addictive, as per the name, and keep in the fridge for a few days, so instant breakfast or lunch.
And I'm not doing everything at once. The peeled eggs can stay in the fridge for a couple of hours until I have some energy to make the marinade.
Do you have any cooking tips that help with mecfs?
Teekeatz · MAYAK GYERAN (SOY MARINATED EGGS) - TeekeatzEggs so addicting you can’t eat just one (I literally ate 4 in one sitting) Yes, the literal translation for […]
It's the 7th anniversary of this paper.
A lot of it was only possible due to Alem's heroic FOI victory, which the #PACETrial team fought so hard to stop.That surely wasn't because the real results weren't as flattering as they had presented them?
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Food, Equinox
Equinox strangolapreti chilling in the fridge. Took a bunch of little 5-10 minute steps to get there throughout the day and will probably get a hand from my partner with shaping them, but I'm so happy I made them.
One of the goals I've set for myself since getting a little better is to try to cook things I've wanted to cook for years or things I dreamed about trying to cook when I was in really rough shape last year.
These go by a bunch of regional Italian names, and variations, all of which translate to 'priest stranglers' which was a nod to the gluttony of the church, which I think is as good a reason as any to want to cook them.
The version I made is basically a big spinach bread dumpling, and I will either cook it in brown butter and sage or Parmesan cream, haven't quite decided just yet. I've got another recipe that is more of a giant potato dumpling which I will have to try too. I added a sauteed shallot to my mix, for a little more kick.
I'm a day late for the equinox, but it felt more celebratory on a Friday night.
Here's the recipe if you are interested:
Inside The Rustic Kitchen · Strangolapreti (Bread and Spinach Dumplings)Strangolapreti are delicious spinach and bread dumplings served in a simple sage and butter sauce they're so easy and comforting.
Tiny sprouts survived the torrential downpour last night, the lettuce being a little melodramatic as was expected. Turnips and beets seem happier already and the perpetual leeks were already pretty sturdy. Direct sowed some radish clusters and parsley, and did some more starts - A red kale and a lacinato, some holy basil which does far better here than the other basils, and which we also use a load of for Thai cooking and a bunch of cilantro.
15 mins of work does a huge amount for my mental health and sense of accomplishment in a day. It's not lost on me that I have the privilege of a supportive partner who also likes to garden and moves my bags of soil around for me among many other things, but gardening feels like something I can still do with mecfs and I'm so grateful for that.
8/
“I think it’s important for clinicians of all specialties to get educated on how to recognize, diagnose, & manage patients with ME/CFS, long COVID, and dysautonomia because there are simply not enough specialists to absorb a rising number of these patients. The first step is to understand & acknowledge that these disorders are not psychologically based & are not functional in etiology”
@mecfs @longcovid @dysautonomia #mecfs #longcovid #Dysautonomia
7/
“With this paper, we hope to highlight the wide gap in communication and attitudes among clinicians and other healthcare practitioners toward a patient population that has been largely neglected by the medical community, but that deserves equally effective and compassionate care as patients with diabetes or heart disease.”
6/
@spoonies @mecfs @longcovid @chronicillness
Another example is, “Good news. Your tests are all normal.” We explain that this might not be viewed as “good news” to a patient who still feels sick. An alternative is, “The tests we have run so far are not showing any abnormalities, and the good news is we have excluded certain conditions based on the results of those tests.”
4/
“We focus on common phrases that clinicians often tell patients, but which can be nonproductive, inappropriate, and frankly, damaging to the physician-patient relationship.”
3/
“Who is the target audience for the paper?
Physicians of all specialties and other healthcare practitioners, such as psychologists, physical therapists, social workers, nutritionists, and others.”
#MedEd #Mastodon #mecfs #longcovid
@mecfs @longcovid @dysautonomia
2/
“For people with complex chronic diseases such as long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and dysautonomia, a clinician’s inadvertently hurtful language can compound suffering and derail effective communication.”
#Dysautonomia #PwME #mecfs #longcovid
@mecfs @longcovid @dysautonomia
From Medscape (widely read by health professionals):
"What Not to Say to People With Complex Chronic Illness"
https://www.medscape.com/viewarticle/what-not-say-people-complex-chronic-illness-2025a10006ft
(may require free registration)
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
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One thing I am doing for my ME these days, is remembering to lie down. I was a human doing in my old life and it's sometimes hard to break that cycle. At a few points in the day, i just lie down and it lets me pay attention to my body. If my body says 'yes, this is where i need to be.' I stay there. No guilt. Just rest.
Good morning everyone 
I have just woken up after another day of very low spoons yesterday. I've made an effort to come downstairs as I was missing my parrots. I actually had a dream in which I had gone shopping with Ziggy, who was being so very cute, and we met up with another lady and her boyfriend who were doing parrot displays. Later I found them both on stretchers after some kind of accident and tried to find sticky notes so I could give them my number in case they needed my help. And all the time Zigs was being adorable...so I definitely had to come and see her after that 
Grant has been doing a good job of looking after me so he's on a well deserved birding walk this morning and a glorious day for it too. I do miss walking. With the river and the forest there are so many good walks around here. Today though, I will continue to take it very easy.
Have a lovely day, whatever you get up to 
@AncTreat5358@mindly.socialAre men’s “hot flashes” really a thing?
I’m 54. When I take a shower, or eat, or even think about anything physically active, I sweat like crazy within moments, usually on my back and neck plus the usual places. This is to the point where I often need to change t-shirts within about 5-10 minutes. I usually have to be in t-shirts without a jacket, unless it’s around freezing outside. Inside in my upstairs home office, I need the window open most of the time.
Been experiencing this most noticeable the last 2-3 years.
Not sure if it’s age, fibromyalgia, ME/CFS, something else, or a combination of things.
Accepting that today is just kind of a cruddy M.E. day where everything feels thick and buzzed out, including focus and enjoyment.
UK politics, social security / benefit payments, mh--, semi-suicide threat, but also stubborn enough to live just to spite the wannabe-tories
... ok so these fuckers really ARE trying to kill us.
relevant af https://www.youtube.com/watch?v=e9ROtVQt98s
I'm so close to the fucking edge this year.
I got a 1 kg bag of tapioca pearls for boba tea to make cheaper at home so I can still have a treat. Saw the price tag and was like "hmmm. *Do* I want / deserve an easy sweet treat I can add nutrient powder to as needed and sip for hydration?"
I got it in the end, but everyone deserves nice things. Yes, even the people you hate. Even the asshole down the street. Maybe if they got nice things and felt nicer, they might be kinder to people around them, idfk.
www.disabilityrightsuk.orgGreen Paper published – £5 billion cuts proposed by scrapping the WCA and changed PIP assessment | Disability Rights UK