MOTHIE

20s • she/he • disabled • me/cfs

[weepymothie]

hello!!!

welcome to my blog where i share things i like, talk about living with me/cfs, and more

i consider myself to fall under moderate and am practically housebound

i am a cane user

i have been diagnosed with quite a few mental illnesses such as: bpd, cptsd, ocd, an-bp (recovered), gad, and mdd

i am very critical of psychiatry

───── ⋆⋅☆⋅⋆ ─────

random facts about me:

i am in a long term relationship with my amazing and beautiful gf

before me/cfs, i was in my senior year of undergrad and months away from getting a bachelor’s in psychology (since then, i have lost significant faith in the field due to the abuse i personally have faced and seen others face)

i LOVE visual novels!!! ace attorney and higurashi are some of my favorites

i also really like kpop!!!

───── ⋆⋅☆⋅⋆ ─────

former url: ccecropias

[phleb0tomist]

driven mad by how patients with severe ME are so rarely warned or protected from some of the most obvious consequences of ME bc doctors just don’t gaf about us. so here’s an awareness post. side effects of ME to look out for:

pressure sores from being in bed all day - to prevent these, change position minimum every 2hrs if possible, and use pillows to support your positions (find visual examples online). you’re especially at risk of pressure sores if you use continence products, so make sure to use a barrier cream and change as soon as possible when soiled.

contractures, especially in the ankles, from being immobile in bed - these can be minimised by doing ankle flexibility exercises, but ONLY if that would be within your energy envelope. otherwise just try to vary your ankle/foot positions. support with pillows if needed.

tinnitus and ear infections from having to wear earplugs so much - i have no advice for this

vitamin d deficiency from being indoors in the dark all the time - supplements and foods rich in vit d can help.

deep vein thrombosis aka blood clots in the legs from immobility - this is uncommon but it’s an emergency if it ever occurs. compression socks can reduce your risk if you can tolerate wearing them, and movement also helps lower the risk, but again, only within your energy envelope.

muscle atrophy - your legs and arms may start to look like sticks after becoming bedbound. unfortunately, as long as exercise is unsafe for you, this is impossible to fix, so it’s something we have to accept, as pushing ourselves is much more dangerous than deconditioning.

vit and mineral deficiencies from dietary restrictions - opt for a healthy diet, supplementation, and regular blood tests to stay on top of deficiencies

dehydration from being unable to sit up to drink - there are sporty contraptions meant for backpackers that let you drink lying down. some water bottles with sports caps also work, i use refilled lucozade bottles for all my water. if you’re too weak to swallow for longer than a day, it’s time to call a doc to see if they can give iv hydration.

dehydration from sleeping a very long time - if you sleep 16+ hours, especially if it happens regularly, you’re probably waking up dehydrated. try to drink water when you wake.

post over!

[memories]

#mecfs and Other Things That Ruined My Life: An Autobiography by weepymothie

[mermaidmagic715]

Take the pain I’m feeling right now, double it, NO TRIPLE IT! Then give it to JK Rowling.

[phleb0tomist]

it’s severe myalgic encephalomyelitis awareness day. 💗 i got ME when i was 9 after a flu. it turned severe when i was 15. ive spent the decade since then largely bedbound with debilitating symptoms. meanwhile ME is one of the least researched and funded conditions compared to its significant disease burden. there are 0 approved treatments. i rarely bother to see doctors because there’s nothing they can do for me. half of them have never even heard of severe ME.

ME is common and affects millions. you can get it from covid so cases are increasing. it can make anyone bedbound, you or your loved ones. you can’t hope or believe or exercise you way out of it. it crushes lives, and without funding there’s no way to stop it. we need funding.

ME association keeps doctors informed and supports patients. invest in ME finds, facilitates, and funds research. the open medicine foundation also does research and searches for treatments. if you can’t donate, please take a moment to reblog!

[weepymothie]

another day, another migraine

i need to see neurologist so fucking bad

[affectionatealbatross]

people need to understand more that some disabled people will never be “carbon neutral” or plastic free. A lot of people need plastic or other manufactured goods to STAY ALIVE. “oh we can bare to lose a few more humans on the earth” okay how about the leaders of countries who are responsible for killing millions and damaging the ecosystem beyond repair. How about you think about why you are targeting a minority already so very targeted for something they have very little effect on.

[amphibiousbug]

they should make a mobility aid that can go on stairs that actually provides enough support to do the stairs

[insidestory1]

One of the terrifying things about chronic illness is watching time slip away from you. You spend almost all of your time just surviving, and like that you watch days turn into months and months turn into years and the time you have in which to do things slip away from you. But the pain and fatigue and the shear difficulty of living won't let up enough for you to actually live your life, so you just have to keep watching it pass you by.

[evilwriter37]

They should invent a sleeping for people with chronic fatigue that actually works.

[phleb0tomist]

hey, it’s severe myalgic encephalomyelitis awareness day. i’m hopeful that things will change. i’m hopeful that people will learn about us.

infographic credit; see more here

please hold us in your heart. ME itself is not rare (it’s over 5x more common than MS), but it’s really rare to find someone who actually knows what severe ME is! ME has been misrepresented as a vague fatigue syndrome. it is not. it’s a complex multisystem illness with a predictable pattern of neuroimmune crashes that come 24-72 hrs after physical or sensory exertion. it can become progressive and fatal. millions of people with severe ME are isolated and neglected by doctors whose knowledge of ME is based on outdated research.

it seems as though long covid can sometimes progress into ME, so cases are increasing, but many of us have had it for decades already. it crushed my life when i was a kid. but i’m still hopeful.

[deerfreak]

she encephalo on myelitis until i'm chronically fatigued

[deerfreak]

she encephalo on myelitis until i'm myalgic

[deerfreak]

is anyone hearing my plea

[weepymothie]

i hate how forgetful i am now. i used to have such a good memory and now i’m forgetting things i did just 10 minutes ago 🫠

[deathgasmic]

who else is up permanently feeling like they did something Wrong

[heather-moss]

people with energy-limiting disabilities should be immune to greasy hair

[lemonpartii]

now that I’m thinking about it, it pisses me off so much that almost every single informational article or graphic for myalgic encephalomyelitis seems to include or focuses on statistics about work and the economy. How much has the condition cost the economy how much can people with the condition work how many people with the condition will be able to work again. Fuck off!!! I don’t care!!!! Capitalist hellscape!!! The lives of the people with this severely disabling condition. The real FLESH AND BLOOD living people. Are so much more important than how much they can work. I do not fucking care if I or my peers with ME will be able to work actually, we deserve comfortable and happy and loving lives regardless. I am going to explode

[creekfiend]

I've been trying to think of a way to lay this out for a while bc it is the #1 most common concern that I see expressed by people who are uncertain about antipsychiatry, like, by far, and it requires a sort of perspective reframe that can be hard for me to put words to. I've had like three ppl express some of these concerns in the last couple days alone, some of them good friends (hi Alex!) and I wanted to just make a public post about it, bc I think it trips a lot of people up.

People will ask me: how can I be antipsychiatry when I rely on the psychiatric system to obtain care? How can I oppose something on which I rely to stay alive? Which I think is really understandable, given the somewhat misleading name of the movement (and there's several names for it already, none of which really are illuminating to people outside those circles, which I think is a big communication problem. But I digress.)

When I say I am advocating for the abolition of psychiatry, I'm not saying I want to abolish access to care. What I am saying is that I want to abolish the institution of psychiatry as the gatekeeper of that care. Currently that's the only way you can access the care you need, and that's a huge part of the problem! It's like... of course it would be incoherent to say "you can't be anticapitalist if you rely on corporations to survive," because of course the system is designed so that we must rely on it.

So what I am advocating for is the replacement of psychiatry as the sole avenue of care with other models, models which prioritize autonomy and remove hierarchy and coercive control. Peer respite in place of involuntary institutionalization, informed consent models of acquiring medications rather than forcing people to go through medical gatekeepers who hold enormous power over them and largely do not see them as real people, etc. There are many, many forms that proposed alternative ways to access care can take.

I get it! I also take meds. I also have to rely on the systems that hurt me. For me, being antipsych is about saying "it is fucked up that we are forced to rely on these harmful, hierarchical systems to access care. We deserve something humane. We deserve to be the ones in control of our own treatment. We deserve to have our autonomy valued and protected and prioritized. Psychiatry does not offer us these things, and its structure at the core ultimately prevents it from doing so, due to its hierarchical nature & inherent power imbalances. This is broadly applicable to many of our current systems, and saying so is not the same as making an argument that we should simply not have any systems at all.