vespertadpole replied to your post “I love that all of the things I do for self-care, survival, and doing...”
I feel like there's a certain commitment to wellness that everyone has difficulty with. But those who can't find their path end up projecting their insecurities onto folks who have found a way to manage their illness. It's the Pain Olympics through a "NT" scale. And it's definitely not okay for them to invalidate what you do every day just to survive >:(
Taking care of yourself is very, very hard with these kinds of illnesses. I can barely do it all most days, so I try to do the most important things. Even when I do my very best, I can still end up in horrible pain and very sick. Sometimes it’s simply out of my control. But just because yoga, herbs, journaling, schedules, etc, aren’t cures, doesn’t mean they’re not super valuable. Not all of these things are going to be for everyone. Everyone needs to find what works for them. Some people find it useful to use a mood tracker, but for me I have a hard time actually doing it aside from whargarbling in my journal when I’m losing my grip. Tingly oil self-massage may be my favorite time of each day, but for someone else that might just be too much for them and so they need a different approach. Everyone is different.
I feel like there’s this thing where everything becomes about preserving it as an identity, because if something won’t cure them, then it’s not worth it, but also because if it DOES give them relief, maybe they’re scared that their disabled card will be taken away from them or something and they’ll no longer have a voice because according to this mindset, the only people who do yoga are able-bodied neurotypical people (see: all the posts where someone suggests something and get accused of being NT, and it turns out they’ve got like 5 severe mental illnesses). This messes with me a lot because I still have a huge problem with questioning if I’m really sick or not or if I’m just “creating” my illnesses because I’m a selfish lazy weenie or something, even though this is obviously very untrue and it’s not anything I can control and I’ve been sick a looong time. Like, I end up feeling guilty for actually taking care of myself because my brain says “if you were REALLY sick you wouldn’t be doing yoga this morning, you would be crawling to the toilet to hurl, so you’re fake.” It’s a lot to manage my brain and its weird thoughts.
So in these communities where we talk about how important self-care is, so many different ways to care for ourselves get mocked, and we have memes about SC, unless of course it’s medication, which is very important, but there are those who medication doesn’t work for too and the medication isn’t the only part of recovery. It’s part of a balanced self-care routine. I’ve tried 3 or 4 different kinds of meds for fibromyalgia and depression, one for the fatigue/constant sleepiness from the narcolepsy, and I had bad reactions to all of them. So I said, “okay, it’s clear that I’m getting nowhere with my doctors who only know how to prescribe pills, so I need to take this into my own hands.” I’ve been doing so much research the past several years and I’m still constantly learning new ways to care for my body. It’s been a really rough road with lots of bumps and break downs. The time I was most suicidal was when I WAS stuck in that negative state where I was just like “well nothing is going to help so why even bother, I might as well just die if I’m going to have to be in this much pain every day for the rest of my life.” And during that time I was often so depressed that I wouldn’t even take supplements or do self massage or stay hydrated because I was like “why bother” and I felt strong resentful anger towards people who didn’t have these illnesses (I still feel this way a lot actually, it takes a lot of brain-wrangling to snap out of it).
It hurts that other people might be feeling that way too, but I wish they wouldn’t be so aggressive and shit all over other disabled people just because they’re still dealing with the intense hot anger that comes with illnesses. Like I’m pretty cranky most of the time, I’m very negative, I have very bad thoughts about myself and others, but... this is why it’s important for me personally to practice compassion, patience, positivity, etc. Because if I don’t, my natural angry negative state ends up becoming external and causing harm to others through passive aggression, explosive yelling, etc. And I don’t want to be that way anymore so I try really hard to manage my responses even when my brain is a bag of cats.
But then that makes me a gosh darn neurotypical according to people?? Because I try to be positive and kind even when my world is falling apart and I see no hope for my future and bitterly accept that I will probably die young. (shrug)
nickxalentine replied to your post “It’s weird to me when people scoff at aromatherapy as just being some...”
Yeah I got curious about aroma therapy when I was pregnant and I mentioned it off hand to my OB and she was like "WAIT there's some you shouldn't do right now", like it's real guys
hikidragon replied to your photo “redbilberryjelly: Nighttime snacking I am six years old I still do...”
at night??? but cheese at night causes nightmares doesn't it??
they-better-be-mysterious replied to your post “Our illnesses are invisible not only because of literally not being...”
Today I had a doctor say, "You can't have that. It's an old people disease." Ok but most young people don't get sudden debilitating pain from sprinting 5 yards and have to lie in the back seat of the car moaning all the way home.
