#M.E/CFS | Explore Tumblr Posts and Blogs

ladyvaderpixetc · 5 months

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When you'd rather strip the entirety of someone's disability benefits (and meds and access to dental care) rather than fairly tax the rich whilst referring to this as being the ethical and moral choice for the country, it does rather make me feel like my government would rather I be dead than existing as both a poor and disabled person.

#uk politics #disabled #disability #chronically ill #chronic pain #chronic fatigue #chronic illness #fibromyalgia #myalgic encephalomyelitis #m.e/cfs

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aureliacetinn · 10 months

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happy first #disability pride month post

its the pathfinder 2e and dnd backgrounds optional rules for my condition

m.e/c.f.s

inside other than info on my condition is info on background notes for gms

and 3 tables covering mild to severe m.e

and an optional variant where the tables only give you flavour instead of mechinal issues

the idea is to roll once every day or as much as you like after picking what version feels right for you

this was done for me awareness as well as a personal desire to see if my condition can work in these universe and it can

ofc!

its pay what you wants so enjoy!

#disabled representation #disability aids #disability inclusion #ttrpg stuff #dnd homebrew #pathfinder #delicious in dungeon #m.e/cfs

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chronicallyuniconic · 1 year

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I feel guilty because to them it's "only" chronic pain & fatigue.

It's not life threatening, even though it can get there.

It's not really treatable, just sit-withable.

It's not something like cancer, that can be cut or irradiated out of you.

It's not like I have to do anything other than sleep & try to cope with the pain levels.

I feel guilty because my illness isn't seen as valid as others.

I feel guilty because funding is so minimal and research so sparse, i am only able to lay in bed.

I feel guilty because my illness isn't seen as worth caring about and by extension, me.

I feel guilty about their positive outlook when I used to have that too, but they're getting treatment unlike me.

I feel guilty for having bad and worse-than-bad days, when I used to fully function like my friends and family.

I feel guilty because nobody gives a damn about M.E

#does this make sense

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mindfogandsleep · 3 months

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Sharing this with permission from @chaisorrowscfs on Instagram. I LOVE this idea and wanted to share it with more people.

#spoonie #chronic illness #cfs #m.e #myalgic encephalomyelitis

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fireflysdreams · 2 years

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Unfinished vent art about my struggle with chronic fatigue syndrome, it’s been rough.

#m.e.#cfs/me #CFS #my artwork #vent art #digital art #disability #invisible disability #disability pride month #chronic fаtiguе ѕуndrоmе #myalgic encephalomyelitis #vent post

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centrumlumina · 2 years

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If you live in the UK and you have ME/CFS (Chronic Fatigue Syndrome), please consider taking part in the DecodeME study!

They are planning to collect information from tens of thousands of people with ME/CFS and analyse DNA to see whether the disease is partly genetic and if so, help pinpoint what causes it – which is the path to finding treatments.

You can participate from home by completing a questionnaire, and you may also be asked to provide a saliva sample via post.

Visit decodeme. org. uk to find out more and take part!

#me/cfs #myalgic encephalomyelitis #chronic fatigue syndrome #chronic fatigue #m.e.#cfs #chronic illness #chronically ill #chronic pain #invisible illness #invisible disability #disability #disabled #spoonie #decodeme #decodemestudy #ability stuff #signal boost

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tiffanylamps · 1 year

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after three years, the 'vid finally got me

#covid19 #and on my birthday too? fucking rude as hell #psa: if you're unwell and have to go to work and if you're able to PLS WEAR A MASK!#it is a bad time to hear a horrible story of someone get m.e/cfs after contracting covid and now they're bed bound #like... bitch I already have m.e/cfs! i don't need it to be any worse. (sorry to that person. i really hope it doesn't happen to me #bc jfc that would suck)#chatty lamps #tmi tag #*got #*bedbound

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landoverwater · 1 month

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Here we are, in the year of Our Dolly of Parton 2024, and I have just been recommended Graded Exercise Therapy by a doc from occupational health at work. Un-fucking-believable. For info - GET is dangerous to people with M.E. and was removed from the NICE guidelines back in 2021, after years of campaigning by people with M.E. and doctors who were listening. The irony of having an energy limiting condition but having to spend your energy educating doctors. It's lucky I've still got a very healthy sense of humour.

#M.E.#cfs/me

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18thcenturythirsttrap · 3 months

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Phil Youngs, who has had ME for 20 years, said Boxer’s story and her ear seeds business could lead to more stigma for a condition that some people already consider psychosomatic or fake.

He said: “As a community, we are now being questioned as to why we aren’t getting better if such a simple solution exists – bearing in mind that we don’t even know what causes the disease, never mind how to cure it.

“Picture someone going on [TV] claiming they could cure cancer, or ALS, or Alzheimer’s. They would be questioned immediately, by everyone on the panel. There would be public outrage. We know there is no cure for any of these diseases, there are millions and billions of pounds being spent on research every year.”

I haven't been diagnosed with ME or CFS but I do have fibromyalgia and hypersomnia, and as someone who has had to fight against being characterised as 'lazy' or 'depressed' by everyone from my own family to health professionals, I can see why the ME and CFS community are fighting back against this nonsense - and I wish them the best of luck.

#m.e.#cfs #me cfs #chronic illness #disability #fibromyalgia #hypersomnia #health misinformation #ableism #tw ableism

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septembersghost · 1 year

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saved these a few days ago because they knocked the wind out of me, except they felt too pervaded by that grief to post right at the new year, like i didn't want to immediately crowd it with the heaviness of this...but considering the vaguely yearning sadness i've been feeling like a veil lately, yeah, this really does capture the unmoored and confusing feelings that come with every year of surviving with a chronic illness, but not really living in any kind of tangible way. always too much and never enough.

#chronic illness #cfs m.e.#about me #i ghostwrote this #the little girl who was always tired #bubble wrap around my heart

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sickntiredofbensickntired · 1 year

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I am one of the #MillionsMissing I have M.E. / Myalgic Encephalomyelitis

#MillionsMissing #ME #M.E.#myalgic encephalomyelitis #c.f.s.#cfs #fibrofighter #fibropain #fibro

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chronicallyuniconic · 1 year

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"You don't look sick"

I shouldn't have to display physical symptoms for you to believe I am sick. I shouldn't have to display physical symptoms for you to believe I need care/your help. I shouldn't have to be bleeding. Or fainting. Or vomiting. Or screaming (nobody hears me).

The words "I am exhausted" should be enough. Saying that I have chronic fatigue should be enough. Explaining how tired I am is not an invite for competition. I am just tired. To my fucking bones.

I can sleep for 21 hours 7 days a week & still feel like I've had no sleep at all. Because of chronic fatigue. Not out of choice. I'd love some restorative sleep. It never comes. It might never? (who knows, nobody seems to care enough about M.E/Fibromyalgia/CRPS/PoTS to help us)

I'm just so tired of this shit.

Uniconic

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mindfogandsleep · 3 months

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"I'm sorry you're still struggling with your health"

It's fucking chronic, Katherine

#josie's life #spoonie #chronic illness #cfs #myalgic encephalomyelitis #fibromyalgia #m.e

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hyperlexia-1 · 1 year

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This study suggests that COVID can reactivate latent viral infections in the body. It also is one of the few studies done on COVID in people with ME/CFS and yes, it can cause the disease to reactivate or worsen.

#cfs #M.E.#chronic fatigue syndrome #myalgic encephalomyelitis #COVID #viral reactivation

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