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It’s the second day of disability pride month and my mom has just told me that all my problems are solely mine to fix. Including the ones caused by being chronically ill and not being able to work at the same pace as other people (like. Chores. Not a job. I think).
I literally was just updating her for the first time in 18 months and asking if she’d be able to come help me get some extra laundry done. Or dishes. Or vacuuming. Because when I moved in here, she said to tell her if I needed anything. But anytime I ask, this is how she responds. And her response was not just the above, and that I’m just going to need more help again later, and that she thinks I’m bipolar.
I think I’m bipolar too, and my mania got used to be ableist to me at the last therapy office, and is part of why I’m not in therapy at all currently (my about needs updating). But she just wants me medicated so I’ll leave her alone. The same woman who told me being on medication forever wasn’t something she thought was a smart idea when I got my initial antidepressant.
Can she stop flipping on me like this and pick a single lane to attack me from? I’m so tired and confused. She doesn’t make any sense. I wish I could snap MY fingers and be the ‘daughter’ she wanted but I can’t. I need HELP. Or I’m going to die young.
Is anyone else starting to feel kind of wary about the increasingly common narrative that "women's bodies are so different to men's that modern scientific recommendations do not apply to them"?
Like. There is a significant gap between 'a lot of studies do not take into account variations caused by things like female hormone cycles, which can limit how generalisable they are' and 'medical science does not apply to women', and the latter just seems to create a situation rife for bad faith actors and snake oil salesmen to reassure you that actually, THEY have the answers, because THEY listen to women, and if you simply pay them for their online subscription service-
I think I have an ulcer. Which the anon nonsense on my main this weekend did not help with. (Like the anons didn’t give me the ulcer, I’ve just been so stressed out all the time for months and the newness of that whole situation and how it played out was just. Very draining.
It’s just extra shitty because the only other time I’ve had one was from taking ibuprofen for too many days in a row before I got my pain prescription. (Which didn’t even work by the way. I have figured out that all it did was make my depression worse.)
I don’t even know if I have insurance (#JustMedicaidThings) and it’s so hard to think when I’m desperately trying to not be sick. So trying to get my insurance figured out is even more difficult than it already was.
Figuring out how to incorporate exercises I can actually complete without hitting what might be PEM has been really difficult. My GP and OBGYN and psychiatrist recommended apps with free routines you can do at home, but these apps always seem to assume that one has far more basic ability and endurance than someone like me has.
Luckily, my city has a fantastic Parks and Rec department who installed a LifeTrails™ system in at least the park closest to where I live. Designed to help improve activity levels for elderly people, they are very inclusive exercise bars and machines that exist outdoors and are free to the public to use. Each station has signs with Basic, Intermediate, and Advanced exercises using that piece of equipment, showing you how to do the exercise, how many reps and sets to do, and what muscles you will be working out. A sign at the start of the trail explains basic exercise safety tips like not pushing too hard or far and to keep breathing as you expend effort.
(Mine don’t have the little roofs, I think it might be an older set)
On a short walk, I can get a quick full body exercise in before going to bed a few hours later and sleep like a baby. It’s been great for my IBS symptoms. And I’m not completely exhausting myself trying to do a “quick” spinal strengthening yoga session meant for an able-bodied adult without a ton of free time and not for someone trying to NOT use up all their available spoons (and often more than what’s available) on one activity for the day.
So, try and see if your local parks have these, or something similar! And maybe try and find out how to petition to get one added if you don’t!
Decide 10: A Relationship Tool I Found to be Helpful
A lot of internet advice says “don’t do things you don’t want to do” or “you don’t owe anyone anything.” Technically true, but real relationships are more complicated. Sometimes you’re tired but still willing, sometimes you’re excited, and sometimes you’re just… meh.
That’s why I love the Decide 10 system (from Prototype Thinking on Medium). It makes compromise clearer and more balanced. I saw this talked about on Instagram and looked it up.
Here’s how it works when it comes to activities (I used a different method for an emotional need, which I talk about in example 3).
Each person rates from 1–10 how much they want to do something.
You both reveal your numbers.
If the total is 10 or higher, you do it. If it’s lower, you renegotiate, postpone, or skip it.
Example 1: This is often used to decide whether to do a specific activity, but it can also be used to decide between two. You’re deciding between Taco Bell and Burger King for dinner.
Your partner rates Taco Bell 4. Burger King 8.
You rate Taco Bell 7, Burger King 5.
Totals:
Taco Bell = 12
Burger King = 12
Both hit the 10 threshold, so either works but you can see Burger King matters more to them than Taco Bell matters to you. So maybe a compromise is you go to Burger King that night and Taco Bell another.
Example 2: Compromise in Action
Let’s say someone rates something a 9 and you’re only a 3. The math adds up to 12, but beyond the numbers, it shows this thing is really important to them. In a close relationship, you might decide to stretch for them. Not because you owe it, but because you care. And often, they’ll stretch for you too.
The opposite can be true as well. Maybe you say something is a 1, but they rate it an 8. Seeing your low number might help them realize, “This isn’t worth draining you for. I can let it go this time.” That’s care, too.
Example 3: An Emotional Need
Today I was feeling sad. I told my friend I was a 6 on the “sad scale” and asked what her capacity was for calling. I clarified it wasn’t emergent. I was just sad.
She told me she was at about a 4 on capacity. She was tired and normally wouldn’t call tonight, but since I was at a 6, she wanted to support me. We agreed she’d call in two hours when she had privacy. She added that if I’d said it was emergent, she would have called right away, privacy or not.
That was me applying the concept in a different way. It was honesty about where we’re both at, balanced with flexibility.
The original Decide 10 article talks about adding numbers together for activities. With emotional needs, it worked a bit differently for me. My “6” was about how much support I needed, while my friend’s "4" was about her capacity to give support. Instead of adding the numbers, we compared them and found a compromise. She couldn’t call immediately, but she could call in two hours.
That’s the point of the scale. It is not rigid math, it’s a framework for honest communication.
Why this helps (especially if you have BPD):
No mind-reading. You don’t have to guess how much they care.
Saying “I’m a 3 on this” communicates low capacity without it sounding like rejection.
You can see when one person feels strongly and the other doesn’t. This makes compromise less painful.
It balances give-and-take instead of one person always “winning.”
Important to remember:
Use it for everyday decisions and non-emergency emotional check-ins. Don’t force it in crisis moments.
Numbers can change. A “2” today might be a “7” tomorrow.
The point isn’t the math. It's the honesty and balance it creates.
This is just one tool, but I think it’s a great way to practice boundaries, compromise, and clarity. Things that can be especially tricky when you live with BPD.
hey, we’ll be ok
Fuck it, I’m not going to the psych appointment, the refill won’t go through anyways and I want to switch providers again anyways, I’m so sick of getting completely ignored at this place and only being able to get appointments and stuff over the phone. No online chat for emergencies, no online booking options. Biggest practice I’ve ever been to. Fucking despicable. And they’re so unhelpful with me having legitimate disability issues around phone calls and doing any executive functioning in my life, despite literally being a place where adults with I/DD live and receive care.
I love having overlapping traumaversaries… 😑 right now, it’s apparently all my waking hours spent emotionally flashing back to the more recent event, and I just woke up from a nightmare about the older one that also had a quick cameo of the newer one.
My resolution last year was to do one thing before bed that would make my morning feel easier, and that’s become a daily habit that I’m carrying into this new year.
Some nights even filling up the kettle and setting an empty mug out for my morning tea felt hard. But I was always thankful for it in the morning.
Other nights, one thing would lead to another, and I’d wake up in a clean house with everything ready to go.
And, on a rare few nights, the one thing that I could do to make my morning easier was going straight to bed and allowing myself to rest.
What stayed the same each day is that I would take a moment to think of what I could do for my future self and do it, even after a hard day. And I would wake up knowing that I had done my best and any effort—no matter how small—was a kindness to myself.
I’ve been doing a lot of “a treat for future me” moments lately.
That’s a great way to look at it, and I love this artist! (Anna-Laura: instagram / website)
2026 I Will Not Obsessively Ruminate On Stupid Bullshit That Makes No Sense And Is Not Real
As awful as it is to be disabled there’s something beautiful and poetic about being in pain because you were having a good day. How lucky I am to love people so dearly that all the pain is worth it.
I think I have endometriosis but I don’t want to have diagnostic surgery.
But I’m more worried about it being places-not-my-uterus. Like my lumbar spine and digestive tract. And I haven’t been able to find anything about how one goes about being tested for endometrial tissue other places. But presumably you need the diagnosis from the uterine surgery first?
I also need to see my neurologist (see last post). And my dentist, had to cancel my cleaning where I was going to try to get another round of antibiotics for the cyst that won’t die over the spot they root canal’ed earlier this year, because it was when we sleep now.
And my insurance is due to be renewed for real by end of year.
And I still have to reschedule with the rheumatologist (canceled because I thought my insurance had lapsed already). And get into physical therapy.
I hate spending all my energy worrying about doctor’s appointments I don’t even want to go to.
So my nerve medication that I requested an increase in dosage on earlier this year?
It worked great! For two weeks.
And then I sank into a depression hole as bad as 2020 and couldn’t get out.
And then some stuff happened and I thought my insurance had lapsed again (it hadn’t) and canceled a neurology check-up and haven’t rescheduled yet and so I can’t get my refill. And guess what? Three days of bad withdrawal (no clue why it was so short other than I missed a day of doses cause of travel and poor planning before I actually ran out so maybe that kind of titrated me a bit) and suddenly I’ve snapped out of the depressive haze.
Depression is a side effect of the prescription.
Fuck.
I guess I have to live with pain forever.
(The fatigue is still way better with the sleep meds, but getting a bit worse as I am not sleeping as well without any of the nerve medication. So I will have to go back down again and the neurologist didn’t want to increase the dose and I insisted over 3 appointments across 18 months. My OCD says he will lecture me or get smug or something. He didn’t give me the sleep prescription that’s actually helping though, his just made me doze off faster, this one gets me all the way into the restful phases of sleep.)
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Everyone else is allowed to get angry except for me. I’m not allowed to even get angry about stupid nonsense that I’m calming myself down about already. But everything makes me angry currently, so what???? I’m not allowed to do anything? How is that fair???
And on top of that I got assigned a new therapist who can only see me every other week, and I messed up the date of my (second) appointment last week and missed it and now she’s sick and my appointment that was supposed to be in 6 hours got cancelled. And I’ll have to call to get another one cause I was asleep when they called to tell me.