Endometriosis - Tumblr Posts

Disability services interactions be like

ds: we can offer a support person, or home help, or some level of assistance!

me: ...but i don't want a support person?

ds: we can offer a supportive person to help you live better

me: i just said i don't want a support person

ds: we can give you home help and someone to keep you company

me: are you completely ignoring me. i want to keep what freedom i have left.

ds: we can offer support person, you can pick them, we don't chose them for y--

me: i want to stay as independent as possible!!!!!! i've already lost most of my life to my disability! i was told you'd help me find ways to be independent. having a person to help me will ruin my mental health because i hate being seen as incapable.

ds: oh.

ds: we can offer a support person!

every time i think 'perhaps i was exaggerating my symptoms last time i went to hospital'

i get my period

bleed so heavily im dizzy

my arms and legs become so wobbly, my cellphone feels heavy

i take morphine because nothing else is working to ease the pain, find that doesn't work either

somehow vomit through my antiemetics.

...and then i remember it is that bad and im silly for thinking otherwise

...and then the cycle repeats.

Two ultrasounds later..

Confirmation we have PCO is on its way

Adenomyosis is still unclear but very likely.

Our doc hasn't seen the ultrasounds yet - radiologist commented on the number of cysts on our ovaries (15ish on one side and 23+ on the other), and that it's basically guaranteed that our gynaecologist will agree…

They looked like c h e e s e on the ultrasound.

Time to add another diagnosis to the list.

Funny to think in October 2021 our ovaries were complimented by our surgeon, as he laughed and said that they looked perfectly healthy despite PCO running in our family…. oh, what can happen in two years. Perfectly happy ovaries said 'hell no' and became swiss cheese.

everything hurts and im sick of being sick

I was reading about fibromyalgia yesterday... We fit ALL of the diagnostic criteria, however, ✨I cannot tell✨ if it's a diagnosis that's given if no other source for the pain can be found or whether you can have another pain source (ie. in our case, endometriosis, PCO and hEDS), that's causing the widespread pain, and a severe disassociative disorder that could be pinned as the origins of brain fog.

Being fair my doctor doesn't really know how my pain got as bad as it did...but like..

is it worth pursuing another diagnosis or is it just not worth it???

Anyone with fibro happy to tell me about their experiences with having a fibro diagnosis?

Wheel-talk

I'm flaring, severely. Everything hurts, the world is spinning, nausea is overwhelming, and I'm dizzy from blood loss, along with a myriad of other things: it's not fun. But I went to a museum with mum today, and instead of being stubborn and walking it on a cane, asked if they had a wheelchair that I could borrow.

It was amazing.

As embarrassing as it is to be a teen in a wheelchair (I got some stares and commentary from strangers), it was so freeing. Instead of hobbling around, leaning on things and trying not to faint, I could explore. Look at things. Read. Do wheelies (much to my mother's horror). Spin around and move at a speed I hadn't in years, as my body usually wouldn't let me, and I wasn't tied to leaning against walls and feeling sick.

and I had energy left over to complete chores.

I wouldn't be able to visit a museum, or for that matter.. anywhere, during a flare. But today? Because I had wheels? It was amazing.

It was nice having that freedom. So much so I talked to my mother and asked if we could discuss getting a wheelchair for when the pain is bad…

That went less well.

// slight ableist talk //

She doesn't want me relying on it to get around. She doesn't want me to rely on wheels to get around because she doesn't want me being bed bound, to lose muscle or something like that.

I understand where she's coming from, but… it's so frustrating when that was the first time I felt good in weeks… and having that option might actually give me more time to do things I enjoy.

but she doesn't want me being “that disabled”

a cane is bad enough in her eyes

(and don't get me started on how my father would react if he knew I'd used a wheelchair)

and I don't know what to do...

help?

we meet another specialist tomorrow

...he's the last option in our region before we've run out of clinicians who will help.

I have one appointment with him, and he made it very clear he doesn't want to see me afterwards because I already have input from a pain specialist...that pain specialist has been close to pointless.

Wish us luck!

Period tracking app: your next period is due in early August

Endo: AHAHAHAHAHAHHA FOOL

Endo: how about now, motherfucker

So many people need to hear this: plenty of disabled people will try their best to be sustainable but sometimes it's not possible.

I try my best to make sure my lifestyle is as sustainable as possible - hell, we were running the School Strike 4 Climate (SS4C) group in our area at 13.. it's not like we don't care.... but some things I need to live now are single use.

Pill packets, medicine bottles, syringes, TENS machine pads, certain safe foods, plasters, bandages, occasionally disposable pads when menstrual cups and period underwear aren't enough... If they came in a reusable and eco friendly option we'd be using it, but they don't.. a large portion of medical equipment requires disposable items.

Some people don’t want to hear this but sometimes accessibility is not sustainable or eco-friendly. Disabled people sometimes need straws, or pre-made meals in plastic containers, or single-use items. Just because you can work with your foods in their least processed and packaged form doesn’t mean everyone else can.

hey disabled friends and anyone who struggles with eating :)

when i'm not feeling well and i'm super nauseous, i'll make what we've affectionately coined a 'pick plate' it's just a mix of foods cut small that are easy to pick up..and that smell good.

often it's enough just to trigger my appetite that i can eat (or the smell makes me sick). they're easy enough to do that they can be made sitting in a wheelchair or sitting down :)

i hope this helps someone!

sending love,

lillia

Fun fact: the word 'chronic' means it's lifelong! and the phrase 'chronic illness' means I'm stuck with it until it takes me out, or I take me out. So, to the woman bothering me at a close family friend's funeral today about 'whether it goes away' can shut the hell up. Chronic means I'm stuck with it. Telling me I can think my way out of it when I have things physically wrong with my body will not do anything. No, it's not going away, and praying and trying to force me out of my wheelchair won't do jack-shit (except make me want to break your nose). Trust me, I have tried almost everything under the sun by now.

Besides, I've come to the conclusion if god/s exist, they decided I'm better used as a disability advocate than wasting their precious time on fixing the fact I'm in crippling pain constantly :DDD

disabled system asks: 1-4, 10!

1. Is your disability invisible, visible or both?

Both: invisible in the way that there appears to be nothing outwardly wrong with us (as doctors kindly keep reminding me) but visible in the way that we use mobility aids almost all the time. We wear a sunflower lanyard in public, and use a mixture of a cane, crutches and a wheelchair depending on the day.

I wish to add, as someone who has looked able bodied, and disabled in various fonts.. people don’t treat disabled people better if they’re in a wheelchair or visibly ill, and some are arguably worse to young wheelchair users.

2. Do you use mobility aids? If so, what for?

We do! As said above. We have a mixture of issues (ranging from endometriosis to POTS to hEDS to fibromyalgia) that create.. well, a mixture of issues XD. We’ll use the wheelchair on bad pain and fatigue days and carry the crutches.. or, on better days, just use the crutches to take some pressure off our knees, and aid as balance. As cool as our cane looks (photos later), we stopped using it as it was giving us pretty severe hip pain on one side from the way we had to lean to get support from it (still my fav visually though).

3. Is there a specific alter/part/headmate who fronts to deal with pain? How do they manage it?

Yes, that would be me. I split when we were very young to deal with injury, particularly blood. As our chronic pain increased, so did the amount of time I spent fronting, until I slowly became our most common fronter. Sucks though, cuz that was never meant to be my job, I was supposed to stay sitting on the sidelines only appearing to deal with first aid and other protector things. Instead, I’m here, and somehow I make it everyone else’s problem.

My appearance as most common fronter got us outed as a system because I’m so drastically different from the common fronters of the time. {its a little more complicated than that but you get the idea}

I manage it with a combo of pain killers (including medicinal CBD, THC, and flower, pregabalin, panadol, ibuprofen, codeine and morphine amongst other things… happy to answer questions about any of them if you’re curious), dissociation, weaponised tears and sheer fucking willpower… I wish I could say sheer fucking will was still working, but it is not very well anymore. There’s only so much one can deal with, and our pain has been getting steadily worse for the past few years with very little support (most of our illnesses have no cure, only management). We’ve reached the point where our doctors and specialists aren’t sure what to do with us and are wondering if there’s something they have missed…but uh, our tests, bloods and results are coming back clean. Looking into that at the moment lol.

4. Do you experience pain variety based on who’s fronting?

Oh hell, do we ever. Certain members of the system *cough* Kyle *cough* have dreadful pain tolerances - I always know when one of them is cocon because our pain skyrockets into impossible levels, even if I’m trying to keep it under control. Certain other members of our sys have average pain tolerances, some age regress to cope, others just curl up in a ball and sob.. depends on the alter - and the cyclical nature of parts of our pain make it difficult to manage, and to recognise how each alter is affected. Plus, it’s hard to compare pain tolerances when each of us have no other/barely any frame of reference.

10. Do you decorate your aids?

YES. We use a combination of spray paint, cheap nail polish, stickers and in the case of the wheelchair, holders designed for prams and bikes (water bottle holder, clips, bells, reflective stripes etc).. aids start out super boring and for us, decorating them and making them prettier is the only way to make them tolerable. And political - if the government is going to make our life into a political ‘issue’, we will turn right back around and make them aware of our existence ;)

the pic doesn’t grasp it very well, but we painted the chair’s spokes rainbow (and they look super cool when we’re driving it)

Thanks to @disabled-systems for the game <33

Sometimes accessibility is using an electric toothbrush

One of the best things I did for my chronic pain and ADHD was buy an electric toothbrush with a timer and an app.

This is gonna sound nuts but hear me out.

I've been repeatedly cracking jokes to my dentist, physio and therapist that that my life would be so much easier if I didn't have to stand up for two minutes while brushing twice a day (and end up skipping it because my body hurts too much - followed by getting anxious about not brushing), and my therapist had a stroke of genius (I wish I'd thought of this) and said "well, why don't you try an electric toothbrush?"

I have a crippling fear of the dentist (something about having vampire fangs and various impactions from 9-14 years, braces for 4 years, having eight might be more teeth pulled and ongoing jaw pain from early teens will do that to a bitch - also seriously? does anyone like the dentist? shout out if you do but I cannot relate) and he knows that I get overly anxious and obsessive about brushing my teeth well to avoid the dentist and fillings as much as possible. So, I listened and used my disability funding. It took a lot of back and forth to justify spending that much on a toothbrush, and I wouldn't had I not had the funding

But wowow, has it changed sm. It's easier to sit down to brush my teeth when I'm not having to put so much effort into it and my teeth feel cleaner. I'm doing a better job for the same amount of time and effort - anyone with chronic pain and fatigue understands how precious those things are... and the best bit? The app it turns the whole fiasco into a game (as long as sending notifications to remind to replace my toothbrush head and to brush). I look forward to cleaning my teeth to see if I can do better than I did yesterday. It's insane that something so simple as having a "brushing score" can hack the ADHD braincell into wanting to do it.

I dissed the app so much "why does a toothbrush ever need to be Bluetooth" I said, and now I laugh and smile to myself knowing it seriously helps.

...plus, my teeth got whiter? maybe that's the consistency from wanting to, or maybe it's the brushing, or some combination there of, but I'm not complaining!

I'm using the same amount of time and less effort, and getting a better outcome.

Sometimes accessibility doesn't look like ramps and mobility aids (though that's SO important too!), sometimes it's making things easier by finding routes that streamline your everyday routine, and being kind to yourself and allowing yourself the grace to let change, remembering that yesterday or last year's 100% may not be today's :)

Love you all 💕

My specialists keep saying I'm doing everything right

So how come am I getting worse? I hate being chronically ill.

Why can't I just turn it on and off again, or factory rest it please

Normalising certain things can be dangerous - especially around mental illness and physical illness. A good example of this is how period pain has been normalised.

People with periods often dismiss their pain on the basis of "everyone gets a little pain", doctors dismiss painful periods, specialists dismiss them too as it's so normalised to have painful periods where it can be a symptom of severe chronic illness; endometriosis, polycystic ovaries, adenomyosis, even kinds of gynecological cancers can present as "a painful period"

Destigmatising painful periods (and honestly, pelvic health for all people) helps to push societal acceptance and awareness of the fact that those issues exist, and allows for conversation when problems arise.

The sad thing about being chronically ill, especially as a teen: how many of your own boundaries you have to jump over to gain support.

I had my first invasive pelvic exam done by a gynecologist at the age of 13. Age of consent is 16 here. I wasn't old enough to consent to having sex but I had no choice but to accept the pelvic exam, including a transvaginal ultrasound, if I wanted any kind of further treatment - I didn't want to let a random stranger feel around inside my body but to for them to continue to testing, I had to. They gave me the illusion of free choice, but realistically, I only had one option if I wanted my pain to go away.

Don't get me wrong, I'm glad I had the exams when I did, and that they meant I got diagnosed with endometriosis in four years rather than the usual seven.. but that's not to say they haven't affected me in the long run.

Infertile Lands

My conscience is closed off

I need sleep

Sundew depletes the last glimmer of hope

I bound and adhere myself together like the endometriosis that infiltrates my shell

We are all Ignorant to the law of life blood

Watching the world go by as I am casted out to the edge of the sea

Somatic memories from menarche still linger

My body is like a parasite insidious like mistletoe

The cactus has been exsanguinated and what was the cost?

Only

Cordyceps

Feed off me

(The art I made inspired from my journey with highly suspected endometriosis. Too many people born assigned female at birth have this terrible disease. It can cause terrible periods, chronic pelvic pain, infertility, and many more complicated symptoms. I just want to make clear I am okay, endometriosis and/chronic pelvic pain is just a lot.

Art is made by me!✨🎨🖌️

Bandaid🩹

A tortured soul cries out unable to contain the agony

Static and moisture fill up the clouds, we can’t escape these cycles

Swallow

gripping tighter to the cliffs edge, praying for better weather

But the Cataclysmic storm rages on, the pills did not matter

Another visit needed but only a bandaid is given

smothering any hope or desire

Left in the Dark

Hold on to hope

With no help in sight

This is how they make us live

In this sad

Pitiful

Barely existent

“Life”