monachopsis-11 - Tumblr blog

[monachopsis-11]

getting disabled over a period of time is so weird, because sometimes i’ll just see something, let’s say about running, and think “i should do that!” and then i slowly realise that i can’t run anymore. i can barely even walk. it’s weird because there wasn’t one event that happened that made me like it. there wasn’t a day where i woke up and couldn’t run anymore. it was slow and gradual. and sometimes i realise how much ive lost that i didn’t even realise because it all happened so gradually. sometimes it feels like yesterday i could run and today i can’t, and sometimes it feels like forever ago that i could.

[monachopsis-11]

This is unfortunately very true of my experience and exactly why diagnosis (self or professional) is so important.

[monachopsis-11]

Society talks too much about knowing what you can endure as a sign of strength and perseverance, like you’ve been through all this terrible trauma and you overcame it so you can do anything.

We don’t talk enough about the fear of knowing what you can endure, of having gone through the darkest moments of your life with a smile on your face, of pushing your body so far past the brink of collapse and somehow it still doesn’t give out, of how perseverance is it’s own trauma, of being completely isolated and alone.

It’s terrifying to know how bad things can get, to live with the knowledge for the rest of your life of just how cruel the world is.

[monachopsis-11]

When people say all the right things about supporting you and understanding disability then turn around and argue about how they’re tired too as soon as you do anything mildly inconvenient.

[monachopsis-11]

The embarrassing parts of a disability never stop being embarrassing. The visible parts don't become invisible. Some days you will notice the stares, the looks of confusion or disgust or intrigue, and you'll look inward and feel those same thoughts returning.

It's okay. You are allowed to be upset still, you can be upset and embarrassed for the rest of your life. You'll get used to it most days, but just cuz "it's been 20 years" or "i've been like this my whole life" doesn't make how you feel suddenly invalid.

You can mourn not being able to walk or run forever. You can mourn not being able to socially connect forever. You can mourn being pain-free, medication-free, disability-free. You don't have to "get used to it" or "get over it" so harshly. You can always cry a little, it's okay.

It's okay to be disabled, and it's okay to feel like it's not. You are loved no matter what ♡♡♡

[monachopsis-11]

Update on heartrate/OI issues after having the pulse oximeter a little longer.

My heartrate is normal while resting laying down (usually between 80-85bpm) when I stand from lying down it often rises (116bpm or higher) and I get lightheaded but it goes back down to like 95bpm if I’m standing still and around 90bpm sitting still.

However if I do anything other than literally stand in place it gets quite high like around 130bpm and I get dizzy. And I mean like walking upstairs to my room or unloading the dishwasher not doing exercise. I’ve never passed out in my life but I do sometimes feel unsteady or get dizzy and have blurred vision and feel like I’m going to fall.

I feel like it’s definitely not normal but I don’t really know what to do at this point because I’m still trying to get my rheumatology appointment scheduled and that was honestly just to discuss fibromyalgia but I’m going to at least ask about ME during the appointment as well.

Now I think I’m going to at look into POTS as well because I’m not sure what else to do. Anyway if anyone has advice/resources I’d appreciate it, otherwise I’ll keep updating.

[monachopsis-11]

First Time In Public In A Wheelchair 🦽

Overall it was actually pretty okay, I used my new chair today at the art museum with my family and I was a little uncomfortable with it but nothing over the top. I felt awkward which seems pretty normal and I felt like people were staring but I honestly think that was more in my head than anything. That was a pro of doing this at an art museum instead of the grocery store because I was generally the least interesting thing to look at.

Some things I learned and noticed for anyone else who’s really new to using a wheelchair or considering getting one or going in public for the first time.

1. People apologize more, if someone thought they were even slightly in my way they’d say sorry and move which was weird but idk it wasn’t super upsetting

2. More people talked to me, not about the wheelchair just random small talk. I’m not sure if it was because they were uncomfortable or not but I didn’t love that

3. Pushing in the rain is not fun and if you know it’s going to rain I’d recommend bringing a washcloth to dry your push rims once you get inside so you can move around easily.

4. Pushing on carpet is harder and it hurts my shoulders, definitely not fun

5. It was so much easier than walking as long as it was flat, I could move fast and I enjoyed myself more than I have at something like that in years. I’ll have to see how I feel tomorrow but I think any symptoms that show up will be significantly better than after walking.

Also friendly reminder that just because I’m not too anxious around strangers doesn’t mean anything, using it in front of my family was anxiety inducing and when I got home I made I post on my private Instagram figuring I’d have to tell people eventually. That was a mistake, as much as I wanted to post those pictures doing so without consequences isn’t a reality and as soon as one old friend asked what happened I deleted the post and didn’t answer which I’m now stressing about.

I guess this stuff just looks different for everyone and even though I want to be able to share pictures of myself with or without aids I have to remember that their are consequences to that because other people won’t see it the way I do and I don’t particularly want to explain it to people.

Basically my main takeaways are that if you think a mobility aid would help and are able to get one you should, it can be amazing and really helpful. Also it takes time to be brave and that’s okay.

This post was more for me than anything but if anyone ever is in a similar position I hope it helped!

[monachopsis-11]

ILY people who are continually wrong about their self diagnoses

being right about self diagnosis isn't what makes self diagnosis okay. it's a process, and you're learning. it takes time to find answers and just like doctors can be wrong in their suspicions so can you.

figuring out what condition you have is hard and I'm proud of you for taking steps towards finding the right answers. being wrong is okay and is even a valuable part of the process of ruling things out. sometimes it's not a horse, sometimes you're just a zebra, and you can't know you're a zebra without making sure you're not a horse first.

[monachopsis-11]

PSA About Demisexuality/Demiromanticism

Not everyone experiences being Demi the same way. Demisexuality just means you only feel sexually attracted to people after forming an emotional connection.

The majority of people I see talking about Demisexuality talk about knowing someone for months or years before building an attraction or never having celebrity crushes but that is not the only experience of being Demi.

I can have a crush on someone shortly after meeting them if we bonded quickly and I felt an emotional connection through a conversation or observation of them.

I can be attracted to characters in a tv show/movie/play/ book as the story unfolds and I feel an emotional bond with the characters.

I can have a celebrity crush from watching cast interviews and hearing someone talk about their life and aspirations in a way I connect to.

It’s still different than feeling attraction based on immediately observable characteristics. Sometimes it takes a long time for that connection to build and sometimes it doesn’t.

So if you’re someone who’s Demi/questioning but you don’t feel like the traditional experiences fit your life remember what constitutes an emotional connection is different for everyone.

[monachopsis-11]

This is my Roman Empire, children are so mistreated by society and I will never shut up about it or get over it. I am positive that if I had been listened to as a child and been given control and autonomy over my body and experiences I would not be as disabled as I am now and I would have so many more opportunities and options instead of just getting pressure put on me to go about my life like an abled person from the people responsible for my health declining in the first place.

you cant ever let yourself forget what it felt like to be 15. how adults treated you. being treated without a shred of respect because people think youre too young to have thoughts and feelings of your own. the lack of autonomy. you cant ever forget that because if you do you might become the kind of adult who treats kids like theyre not people

[monachopsis-11]

I just saw such a great disability term I personally haven’t ever seen before and I wanted to share it with everyone so here it is:

Usable hours, aka the amount of hours a day someone has where they can carry out tasks (school, work, showering, cooking, household tasks, being out of bed etc.)

I don’t know why but this feels so revolutionary to me 😂

If I’m honest it changes a lot for me but on average I can manage 4-5 whereas a healthy person might have 10-12 usable hours. Otherwise I’m sitting on the couch scrolling and watching YouTube or resting in bed.

Some days I can handle more and sometimes a lot less depending on how much I’ve done previously that week/month etc. It also depends a lot on the type of tasks, I manage mental tasks pretty well and typically write a decent amount but physical tasks exhaust me much more quickly.

I know this is a lot more than some people but instead of focusing on that I’m trying to focus on how much less it is than a healthy person. Having half as much time in a day I can be functional as the average person and during that time I’m still exhausted/in pain/having symptoms/struggling in ways an abled person wouldn’t.

[monachopsis-11]

Does anyone have any advice on how to make friends with someone? I met someone really cool at an LGBTQ+ event and ended up talking to him afterward which I never do. But long story short he does Service Dog training and is new enough to it that I can afford it so we met up again for an initial training session.

I just really like him, he’s super cool and I haven’t genuinely liked someone in a way I wanted to pursue in years. I just have no idea how to let him know I want to be friends and I’m worried it’s weird since I’m paying him for the dog training and generally I tend to come on a little strong because I just say what I’m thinking and nuance is lost on me.

Is it weird if I just invite him to go get coffee sometime? Or just flat out say I want to be friends/get to know him better? If he doesn’t think I’m cool will it be awkward and ruin the training or can we just move on?

I feel so awkward and out of my depth about the whole thing because I haven’t actually met someone I wanted to be friends with in years. And like he’s LGBTQ and disabled and has a service dog and besides the Internet I feel so alone in those things, especially because he’s my age. I think it would be incredible to have a friend like that and I think I would be a really good friend as well.

And he likes the aquarium which is my favorite place in the world!!! It totally feels meant to be and I think we’d get along really well. I’ve been wishing for a friend for such a long and I feel like it’s kind of meant to be but also that I’ll ruin it at the same time.

Should I give him a little pride dog paw print sticker or is that weird?

If anyone has any advice please send it, I’m way too traumatized and autistic for this.

[monachopsis-11]

Question for my internet friends with orthostatic intolerance (especially POTS) I got a blood pulse oximeter to see if I had heart rate changes when sitting and standing and I’ve only had it for a day but I get dizzy sometimes after sitting or standing too long and I think I have ME/CFS which can cause OI.

Anyway what I’m wondering is if it’s normal for your heart rate to spike a lot after standing but then return to somewhat normal. Like if I have a resting heart rate of 82bpm that jumps to like 119bpm (sometimes higher) when standing up but goes back to like 96-105bpm by the time I’ve been standing for a minute is that normal because it goes back down or still really unusual. I’ve also never passed out but I get dizzy and lightheaded when I originally stand up and sometimes while walking or sitting.

I’m fully aware you all aren’t medical experts and I’m not taking this as medical advice, just trying to figure out whether I should be worried enough to research/ask a doctor.

If this isn’t normal should I be looking into POTS as well as ME/CFS?

[monachopsis-11]

I have now had everyone in my family say they don’t understand me needing a wheelchair, some are trying to be supportive anyway but some are not. It’s just frustrating, I don’t want them to pretend to understand it when they don’t but at the same time I don’t think it’s a difficult concept to grasp. Pain and fatigue make walking hard the wheelchair helps. Why is this so difficult for abled people to understand? I don’t know how much is the lack of physical diagnosis but I’m exhausted, I just don’t have energy for this anymore.

[monachopsis-11]

More and more convinced I have ME which means not only is it not making me less disabled but it’s actively making me more disabled when I’m forced to do things I don’t have the spoons for and then I can’t shower or make myself food.

Dear parents

Pretending that your kid isn't disabled and getting mad at them for needing more help and support than your other kids and wanting them to "try harder" and also pretend that THEY aren't disabled by ignoring their OWN needs as well doesn't make them less disabled by the way

[monachopsis-11]

notes for my impostor syndrome:

• no, it's not painful to walk for abled-bodied people

• no, healthy people don't usually use every chance they get to lean against walls or sit down

• no, ableds don't dream about shower stool

• no, ableds don't celebrate days when they're not in pain. because usually they're not in pain

• no, ableds don't want to stop walking mid-way, lay down on the ground, curl up and cry and whine from pain

• no, ableds aren't exhausted by their own bodies 24/7

[monachopsis-11]

eveeyones got it wrong your mid 20s arent for going to the club or partying or picking up new crafts. your 20s are for discovering how much more autistic you are than you thought you were in high school