My Chronic Illness Life

 Call me Ash (they/them) | Born: 12.20.1985 Non-binary, Demi-Pan, Polyamorous, Switch Disabled, Artist, Parent, Nerd, Gamer C: $AutumnJLRowan V: @AutumnJLRowan

[unseenlibrarycardholder]

baubles, bangles, and beads

[chronicillnessbyash]

I know what this season is supposed to be. But anyways. Whatever this non-winter-season is…. I woke up before dawn to go to the bathroom and guess what I heard for the first time this year?

Crickets! 🦗

That oh so familiar rhythmic breathing of warmer weather. That’s the only part of warmer weather I like. The soft cadence of life happening in the background. I miss when I could actually enjoy the summer heat. Tho as I got older I did notice my intolerance for it grew too.

Anyways. They just stopped as I began to type this so that means the sun’s up enough for them to go to bed.

Seasons are changing!

[chronicillnessbyash]

Trust me. I’m very aware that physically (like features wise) and health wise, I peaked in high school. I’m 40. And I’m stuck looking like a hot mess cuz chronic illness ruined my looks and my life. Yay.

[chronicillnessbyash]

I love that drs are like “the normal amount of daily pain is zero, maybe one if you like knocked into something or trip by accident” but then also look at you like you’ve grown a second head when you tell them you’ve been forced to learn how to function at a baseline of 7 that has steadily been growing to that for years.

Idk how I do it. I just didn’t have a choice 🤷

[chronicillnessbyash]

It's my 10 year anniversary on Tumblr 🥳

[chronicillnessbyash]

One of the things I hated about what happened recently is that it made me question a lot of the trust I had in a lot of people. Even long standing people in my life. It will be a very long time before I feel I can confidently trust again. On the other hand. It also made me very aware of the bullshit some folks were actually pulling. Sadly it was long after others had already seen it. I’m thankful for those who have helped me become more aware of it tho.

Even the right stuff happening becuase of something bad doesn’t make the sting any less painful. Yes I learned something so the time wasn’t wasted. But the hurt from the betrayal will be fresh for a long time.

The loss of trust in my own judgement is what stings the most, though. I was so so good at reading people. But not this time. And some folks didn’t hit my radar at all until it was too late also. So I need to learn to cope with that too. It suck’s when you can’t even trust yourself anymore. My confidence has tanked significantly in some areas.

[chronicillnessbyash]

Being here more often feels so weird.

[chronicillnessbyash]

Switching out my day bed for a full size bed. Gonna miss that gorgeous frame. But hey. This is a step in the direction of sending a message to the universe.

The bed I am acquiring was one of lies. So it will be put into a zippered mattress protector before I put my own, never been touched by my ex, clean sheets on it. Even the pillow cases will be new lol

The bed was never actually his so I’m acquiring it because the damn thing is sinfully comfortable and lower to the ground than my current.

Making space in my bedroom little by little. I can’t wait to get started on really making my room my own. I know we are planning to move. But I hope I can make it into at least a little bit of a haven before we go and all my stuff has to be boxed back up so it can go to our next home.

Almost all my ex’s things are boxed away (just a little remains)… those boxes will be put into our shed at the front of our property and whatever happens to it happens to it 🤷 legally at this point we don’t even have to give it back. We’ve consulted many people who would know this law better than we would. (As in they are actual legal authority, not just some smart randoms lol) but it will be boxed up. And should he want to retrieve it, he can bear the burden of calling a peace officer and arranging a date and time to come get it.

A lot of this is soul cleansing and I’m looking forward to… well… moving forward. Slowly but surely I am healing. This has been harder on me than anyone ever realizes. For various reasons. And while a lot of things will never heal properly (sometimes there’s just no going back), most of it related specifically to my ex and our sham of a relationship is healing nicely and the scars will be barely noticeable with proper mourning and the passing of time.

[chronicillnessbyash]

So are we just moving back here or nah?

[chronicillnessbyash]

PCOS ain’t no joke. I’m so sick of this body. It’s so exhausting.

Below is period and meds talk, just fyi.

New meds are working too well. Period is too heavy and painful and lasting too many days. I had to write my dr about it.

I’m taking half a dose of the meds to lessen my flow to a more manageable level. This doesn’t fix the long term if this is gonna be a huge issue where my body just doesn’t make enough hormones to stop a period. I can’t bleed this heavy for two weeks straight waiting to start the new cycle (two weeks on two weeks off). I think what I’ll do next time is maybe do one week full dose and week two a half a dose. See if that helps.

This is in no way medical advice. I am relying on my own research, experience, and knowledge to do the best I can until the dr gets back to me. Otherwise I will end up in the ER needing a transfusion cuz I’m losing that much blood. I don’t want a repeat of that. Having a transfusion feels like fire in the veins. It made my whole body hurt. 0/10 want another repeat of that.

[universalneurodivergent]

I feel this so much every single day 😓

[chronicillnessbyash]

Period is killing me again. I haven’t had one for two years. Got on some meds from one of my drs. And it jumped started my period. But now I am afraid I don’t have enough hormones to stop the shed. And it’s just shedding. So that’s lovely.

How can an organ that’s only 9cm deep be so gd deadly 🥲

[lavender-wolfie94]

I hate it when abled people always say “Love your body and be grateful for all it does!”

Bitch, my body is constantly in pain and finding new ways to destroy itself, fuck off.

[chronicillnessbyash]

[chronicillnessbyash]

Our bonfire for Mabon celebrations the other night.

[girlish-in-pain]

I recently started using a cane everyday and so my previously invisible disability is suddenly visible. I also started medschool. It's been a while since I was properly social so I have questions...

People don't walk next to me. And if they accidentally do, they leave to walk next to someone else even if that means squeezing in three people on the sidewalk. No one talks to me if it's not to ask me "what's wrong". I have really tried to make an effort and talk to people but I don't know what to do.

Can it have something to do with my disability and my cane? Like they're scared to say the wrong thing? Or maybe it's because they've sensed the autism?;)

[chronicillnessbyash]

As a cane and ambulatory wheelchair user I get this a lot :/ people either glare or they avoid. Every once in a while i’ll encounter someone who’s nice… like the 6’4 lady who saw me lamenting about all the tiny notions in the sewing isle being on the top row way up high and offered to grab me what I needed. Her reply when I thanked her was “what’s the point of being 6’4 if you can’t be useful!” She was very cheerful.

Anyways. People are incredibly self absorbed and if others who are also in med school and they are the ones doing this… that doesn’t bode well for the future of the medical field.

Folks gotta get over seeing things and types of people they aren’t used to to or they are just gonna end up making really shitty doctors who won’t see the whole person and will hyperfocus on the wrong parts of the patient. :/

[graciefromspacie-deactivated201]

hi, there is no correlation between your weight & your worth