Bug’s Base

• Nonbinary • Sapphic • 23 • 🫧They/He/She/It🫧

[miinobobeano]

Hello !!

My name is Miino (pronounced Me-No)

I’m nonbinary, Hispanic, and in my early twenties struggling with mild to moderate ME/CFS and Fibromyalgia. I’m a part-time wheelchair user and use various other mobility aids to walk and function daily.

The aim for this blog is to create a safe space where I post/reblog about mine and others lived experiences, as well as things I enjoy (such as art for example.) I’d also love to gain and share advice/stories with others about similar challenges!

I value respect and understanding, and offer both with every new person I encounter. My one ask is that you offer the same, to myself and to anyone else that may interact with this blog.

Thank you in advance!

I’m so grateful to you if you’ve come this far, and I do so hope you stick around~

(Also any questions/asks are welcome!)

Thank you again for spending some time with me, I wish you nothing but safety, peace, and happiness~

[artistformerlyknownasbutttrumpet]

i bring a "technically i could do this tomorrow" energy to things that tomorrow me really resents

[mutationgirl]

it’s bullshit that being under this much stress has yet to awaken my latent psychic abilities

[stillfuckingtired]

Yeahhh, what’s that about? So far all it’s done is make me chronically ill

[insidestory1]

Stress has awakened my body's latent ability. It's latent ability to malfunction in ways no doctor can comprehend.

[miinobobeano]

Having a chronic illness means that no matter how badly you need or want a break, you can’t ever seem to catch one. It stays with you everywhere you go, and demands endless accommodations. It's so debilitating and exhausting and so many of us would do anything just for a minute, hour, or day of pain-free rest/peace.

[miinobobeano]

Been in a crash/PEM all week and having flu like symptoms on top of it all is actually killing me. I’m so tired. I want to rest and feel rested. I would like to be able to go to the bathroom and not get stuck on the first floor for an entire day because going back up two flights of stairs to my bedroom is physically impossible. I’m so tired.

[chronicillnesshumor-deactivated]

[asexual-amanita]

I feel like we’re not on the same page about wheelchair users, so let’s go over some basic facts:

- some wheelchair users can walk and/or stand, these people are called ambulatory wheelchair users

- some wheelchair users cannot walk or stand, these people are called non ambulatory wheelchair users

- some wheelchair users use their chair full time

- some wheelchair users use their chair part time

- some full time wheelchair users are ambulatory

- not all wheelchair users are paralyzed

- not all paralyzed people are wheelchair users, paralysis is a spectrum

- paralysis isn’t the only reason to be non ambulatory

- not all wheelchair users have problems with their legs

Thank you for coming to my Ted talk

[miinobobeano]

Having a chronic illness means that no matter how badly you need or want a break, you can’t ever seem to catch one. It stays with you everywhere you go, and demands endless accommodations. It's so debilitating and exhausting and so many of us would do anything just for a minute, hour, or day of pain-free rest/peace.

[lifeafterpsychiatry]

A lot of people genuinely believe that permanent disability isn't a thing that happens to good people who work hard and make responsible choices. A lot of people genuinely think that we get the life we work for and deserve. And this is definitely part of the explanation for why ableism is so prevalent

[miinobobeano]

chronic pain is waking up and your body’s screaming “i’m in pain” and you’re like “okay ???what’s wrong” and your body’s like *🦗🦗🦗*

[miinobobeano]

It bothers me so much that the healthcare system relies so much on the patient's ability to advocate for themselves, organize their history, and be so persistent against every medical “professional” who says there’s nothing wrong/they can do. But so many struggle with fatigue, brain fog, and face such ingrained systemic barriers, that the people who need and deserve help and support can’t access it.

I saw something recently that resonated with me: “Access shouldn't depend on who has the energy to fight for it.” And I’ve never agreed with anything more.

[countingonaverymerrychristmas]

Hot take but I think abled people shouldn't be allowed to decide what a disabled person needs and what are reasonable accommodations

[lifeafterpsychiatry]

Please trust disabled people to know the limits of our bodies and brains. Trust us when we say we can't do something. Trust us when we say we can do something. Trust us when we say we need help. Trust us when we say we don't need help. Trust us when we say something isn't worth the effort. Trust us when we say that something is. Don't start a debate every time we express a need or a boundary. Just trust us. We know ourselves better than you know us.

[1whistles-5x]

Doctors are professionals, not authorities, they are supposed to work with you not make choices for you, if your doctor does not listen to you, does not respect you, and will not compromise with you, then it's not unreasonable to want a different one.

[insidestory1]

This is such an important but difficult thing to remember. Especially so because many doctors phrase their opinions as statements of absolute fact. "You must follow this course of action." "This treatment will not be effective for you." As uninformed lay people faced with a professional opinion, it's very hard for us to step back and decide to disagree with or doubt what a doctor is saying when it's put in such absolute terms. However, the fact is that these often opinions aren't absolute at all. Sometimes doctors get it wrong, and it's very common for different doctors to have contradictory opinions on the best course of treatment for a given condition. So if you don't feel that a given doctor's assessment of your condition is right, or you're not happy with the treatment they're suggesting, it's always worth going to another doctor and getting a second opinion. It's far from a given that they'll just tell you the same thing.

Just to illustrate how important it can be to get a second opinion, I want to share one of my experiences. I have endometriosis, and because the medical profession is bad at picking up on these conditions it was very far advanced by the time I got it diagnosed. In particular, one ovary was absolutely riddled with endo. The gynecologist who did my diagnostic laproscopy said that the ovary was past saving. I'd no choice but to have it removed. I was upset because I really didn't want to lose my ovary, but I assumed that if the doctor said it had to gothen that was that. I was lucky though, because my mother had a friend who worked as an advocate for endometriosis sufferers. She told me about another doctor who she said had a very good reputation, and advised me to get a second opinion. So I sent an email to this second doctor, attaching the photos of my ovary, and he said, "No problem, I can save it." Which he did, even though the ovary had got much worse by the time I made it to surgery. So now I have two working ovaries, which I would not have had if I'd taken the first foctor's advice at face value.

[fibromyalgicaf]

Hey if you have chronic pain, you gotta remember that the cognitive load of dealing with that is exhausting. Just that alone. Never mind what else you've got going on.

You're not lazy or being dramatic; you're overloaded.

[chanafehs]

Palestinian Lesbians, happy pride to my Palesbians !

[karlovycross]

Summer Berry Mix 🍓🫐 ♡⊹˚₊

[chronicillnesshumor-deactivated]

"You won't be sick like this forever," someone says to me, as if I don't have a sick-like-this-forever disorder