Like fibro is a living hell.
I’m 5 years in of diagnosis. Got it October before covid hit in March. But my symptoms first started in April that year, after my brother died.
I can no longer Cook for a living.
I can barely cook for myself anymore.
I have a sitting stool in my kitchen.
I usually have to choose between a shower, doing an errand or going to the laundromat in any one day now, doing more would put me out the next day.
I haven’t ridden my bicycle in a long time because “maybe I’ll feel up to it another day” never arrives sigh.
I’m on baclofen to minimize my throat/hand/foot/leg craps I started suffering from too.
I’m actually legit afraid to ever yawn now, or stretch anything.
Be funny If I could weaponize it and share with people that actually deserve it 🙊🙉🙈.
Be funny If I could weaponize it and share with people that actually deserve it 🙊🙉🙈.
I feel the same way. I have ME/CFS. I’ve lost the ability to speak, I’m permanently bedridden, I’m tubefed, I’ve lost everything in life.
And still some c*nts have the audacity to say “you’re probably just anxious”, “I wish I could spend all day in bed like you”, “you need to start trying to get better” etc.
If I could send them just one day of living with my illness ahahha. They would cry. The shit I deal with on a daily basis would have sent me to the ER 5 times over before I became disabled.
Yeah I agree completely.
But also I had a humorous and unrealistic thought of one of these gits telling a doubled amputee to “try harder, you’ll beat it yet”
I knew someone without legs disability benefit was denied, because their condition might get better. They were laughing when they first told me of it, because it was so absurd. Fortunately when they appealed, it was cleared up fairly quickly, but it’s ridiculous it happened at all
It’s hilariously at first, but when you realise it’s not a “mistake” but a heavy bias to put out denies no matter the situation. Then those who actually do need it need to fight for it and most of them won’t see it through and never get it.
Like me. Burnout and seizures in 2016. No resin yet. Constantly doctors notes that I can’t work. But still no disability from kela even though I should be got it in 2017.
A decade lost. I could’ve killed a man, gone to prison and had a better social life for the past decade and still got out like 5 years ago at least. Weed would’ve been more expensive and I couldn’t have binged shows so O guess this is better.
Finland, of you’re wondering.
Sad to hear of it, especially coming out of one of the more civilised healthcare systems we have at the moment.
Ironically doesn’t Finland also rank high on the happiest citizens list?
Ugh I hate that myth.
It’s like those “a glass of red wine and a bar of chocolate are as good as going to the gym, science says” articles.
Like yes, they may have had a study showing chocolate may have some protective properties that reduce certain cancer rates at a similar rate as people who go to the gym, when those specific rates aren’t high to begin with.
It’s basically what has happened with this “Finland happy” thing.
I would we are one of the unhappiest countries, but I would also say that true misery which comes from absolutely having no options except dying or doing some serious crime or having to live on the streets is probably quite rare as well.
I know the study in question and it polled rates of contentedness. Meaning someone went around asking people “are you content?” and since there’s a Finnish culture thing where complaining about anything is strongly discouraged, everyone just answered “can’t complain” and the poller jots down “they’re happy”.
When the headline should really be along the lines of “Finnish people least likely to admit to unhappiness”.
It’s genuinely hard for me to even describe how avoidant Finnish people are. My brother hasn’t talked to me for a few months since I asked him to have an opinion on me not getting proper healthcare. Same with mom.
And our healthcare system, while being rather good, has it’s own issues. Like treating the admission of any amount of cannabis as tantamount to having admitted to shooting up heroin for 30 years while supporting said habit with felony crimes. Honestly. I’ve gotten near zero healthcare after I told a doctor I smoke weed. And we still don’t have UBI, so their views affect the view Kela, the institute which pays benefits has on me. So basically I got thrown out of society entirely because I didn’t feel like drinking myself silly every weekend and instead supported the legalisation of weed.
And not even in an annoyingly over the top weed bro way, but in a “if it comes up in conversation”.
Literally childhood friends — whom I had to carry out of parties rolled into a mat, covered in tequila vomit and drive them home — started avoiding me. Didn’t invite me to their weddings. People who had smoked weed with me.
I went a bit off topic but yeah no Finland is not a happy country despite the relatively good systems on paper.
Most Finnish people I know are literally, without any exaggeration, emotionally stunted when compared to the global norm.
I totally get what you mean. People have a similar obsession with where I live (Switzerland), being a paradise on earth.
Sure it might be if you’re upper middle class, but people still die in the streets, we still have massive inequality etc.
Well I don’t think we have lots of people dying on the streets to be honest.
Is homelessness really much of a thing in Switzerland? Not a relatively huge issue compared to other Western countries, according to a fast query from Google.
It’s so annoying though, because of being relatively well off, anytime you seek to improve anything about Finland, people go “you should be thankful you don’t live in Africa” or some shit. As a kid it was “theres hungry kids in Africa” when I felt nauseous eating and they practically forced me. And just now fucking 30 years later I figure out why I had such a hard time eating; I have a sensitivity to gluten.
But as not complaining belongs to Finnish culture, me complaining of a chronic issue was soon completely ignored and I was just considered a whiny kid. Mom even like threatened me with going to a doctor. As if she “knew” I was faking it. I WANTED to go. And then unfortunately they found a congenital kidney thing so my stomach issues got overlooked for another 15 years.
We have a word “hyvinvointivaltio”, which is “welfare state” in Finnish. Literally its “good feeling state”. “Voida hyvin” is literally “doing/feeling well/good” if you change the “hyvin” to its opposite “pahoin”, its the word for bad. And “voida pahoin” is “being nauseous” (lit ~“feeling bad”).
So you can change “hyvinvointivaltio” = welfare state, into “pahoinvointivaltio” as a ‘funny’ joke to make it “nausea state” or “a country in which everyone is feeling nauseous and/or doing bad”
I think I wasted a bit of time. If a joke dies when it’s explained then it extra dies when it’s explained while awkwardly translating it. And it really wasn’t much of a funny in the first place. More like an “acab” style slogan you can curse at the benefits office.
We have so much uncounted homelessness. The government throws homeless people in warehouses that are super dangerous and where people literally starve, but then they can hide the problem from the population and make the statistics look good.
It isn’t just disable people who are fed this narrative, it’s everyone, it’s all a part of ableism, and this is one way it manifests when we internalise it.
As well as how it impacts us personally, it’s also important to recognise that it is a systemic, but also artificial construct that is enforced on society, not something that naturally exists (I don’t have the spoons at the minute to source this, but there is a lot of evidence starting from early in pre history of humans taking care of their old, hurt, and or disabled). Not only because it’s important to understand the big picture, but because doing that helps alleviate some of the guilt it burdens us with when we don’t fit the narrative of “beating it”. It isn’t our failure, it isn’t our responsability to “inspire” others, or provide them with a feel good story they can cling on to to stave off their fear and disgust of disability.
(E: I feel like I could have made my point much better, but my brain is too tired to figure out how so I’m leaving it)
Reminds me of this:
In Cree, one does not say, “I am sick.” Instead, one says, “The sickness has come to me.” I love that and want to honor it.
The fact that the link to the source essay takes me the the anarchist library makes me happy. I’ll try and give it a proper look later/tomorrow, but bookmarking it for sure!
E: I’ve just skimmed the post you linked, and yeah, that’s a really healthy and important distinction to make!
