If you’ve got persistent/chronic illnesses and/or fatigue, you have permission to be tired. You have permission to not get all the things done right now. You have your own time you do things within, and it is perfectly okay to take that time and move at your pace and rest when needed.
Even when things are going well and exciting stuff is happening! Even when you feel that now that things are taking a turn for the better, your energy and spoons should be going up too! You don’t have to recover and be full of energy automatically, you’re not lazy if you have to rest. If your bones and muscles say “nope” then it is okay for you to decide that it’s time to stop, regardless of how nice a day it is, regardless if it seems like the perfect time to do a given chore. Don’t feel obligated to spend your time on work just because you feel like you should be busy.
Interstitial cystitis is a bladder and pelvic floor condition. It’s painful, exhausting, embarrassing, and complicated. It makes peeing painful. Makes sex painful. Even makes just sitting or laying down painful. You have frequent urination and utis, urinary retention, bladder spasms, and so many more horrible symptoms. I.C. patients are 90% women, 10% men.
Doctors can literally feel your pelvic muscles twitching and spasming all the time. Often the treatment is physical therapy where a therapist has to stick their fingers inside your vagina and press on the painful muscles until they release. The medicines prescribed for it are expensive and barely work.
Some women have it mild enough it barely affects their life once they make diet changes, for others nothing works and they have to insert catheters in them multiple times a day.
No one talks about interstitial cystitis. Many urologists don’t even know how to diagnose or treat it. I went to 4 urologists over 3 years and not one could diagnose it or spend more than 10 minutes on me. I was told to catheterize myself daily, to take pills constantly, I even was told that if I told my body to relax, it would fix my bladder spasms. Mind over matter. But it took a urogynocologist minutes to diagnose me by feeling the tense overly thickened muscles in my pelvic floor.
Even with a diagnosis, i.c. is still hard to live with and I struggle every day. Sex sets it into a flare. Not drinking enough sets it into a flare. Not peeing every three hours sets it into a flare. Sometimes nothing at all causes spasms and infections.
I just want people to be more aware how serious interstitial cystitis is in women’s health and to recognize the struggles we go through. I want doctors to be educated on the condition and take the scared women in pain that go to them for help. I want people to not be afraid to talk about it even though it involves “bathroom stuff.” It’s something many women suffer from and we need to treat them better.
Not sure if this is useful to anyone, but I had a big breakthroughs in my idea of self-care recently when I applied a phrase I use to combat negative self-talk – “Would you talk to a close friend that way?” – and reframed it as: “Would you care for a friend that way?”
Imagine my friend came to visit and she got hungry. Would I say, “Wait five hours until I’m done with this project and then you can eat a granola bar?” No, I would not. Would I say, “I’m don’t have time to go grocery shopping for you, so why don’t you spend three days straight eating this years-old Ramen I found in the basement that one of my old roommates left behind?” No, I would not. If her clothes got dirty, would I say, “I’m too lazy to scrounge up some quarters so why don’t you wear these ill-fitting clothes from Goodwill with holes in them?” No, I would not. If she had a day off, would I say, “I can’t be bothered to find something good for you to do; why don’t you just sit on the couch reading depressing internet articles all day?” No I would not. And if I were at a party, and she was tired and feeling uncomfortable and wanted to go home, would I say, “Stop being such an awkward loser, stay here and smile at people so they don’t think you’re rude?” No, I would not. A person I treated that way would be justified in wondering if she was my friend at all.
But, needless to say, I treat myself that way all the time. Once my friend has all her basic needs taken care of, sure, we can go for manicures and massages after. But that’s not the point. The point is making sure she’s fed and washed and clothed and comfortable; and I don’t think I’m the only one who has a whole lot of trouble even getting to that point.
pretentious illiterate (that’s their username, not an insult) on Metafilter (via gazztron)
I’m having serious difficulties on how to be a polytheist with disabilities, how to make offerings and include the gods in my daily life with my disabilities and problems.
I don’t do much of anything lately after a relapse and even in my best moments I have a hard time with everything.
The only thing I do is e-shrines.
I don’t have many ideas or know what to do about it. It’s an important part of my life but I feel like I’m ignoring it because of lack of options.
A low-spoons activity for one person may be more difficult for another depending on their disability and circumstances, but here are some things that I’ve done and seen others suggest:
Offer water. As awesome as alcohol can be, water
is still symbolic and necessary for life and all that.
Listen to
devotional music, or just music you associate with your gods.
Research mythology or subjects associated with particular gods
Watch/read/play media featuring your gods, if it exists. Or just media with themes they’d appreciate.
Set an image related to your gods or faith as your phone or desktop background so you’re reminded whenever you look at it.
Consider
dedicating a daily task you need to do anyway to a god, particularly something that you find
difficult to accomplish or something that helps you change your life for
the better: workouts, homework, cleaning, etc.Taking your medication could work too, if that applies.
Live by your gods’ values in everyday life.
Use apps like Stance, Resistbot, and 5calls to speak out about issues important to your beliefs with minimal effort and no human interaction required
Pray. It doesn’t have to
be anything elaborate, or recited out loud. Even a quick prayer while
doing something else will let the gods know they’re in your thoughts. If it helps, find or write prayers on a good day and just read them back on days that aren’t so good.
You feel like shit is a website set up to help you get out of that funk/improve things just enough to not feel horrible and miserable all the time. It’s amazing.
Whether you struggle with mental health problems all the time or whether this is a new/temporary state for you, this guide is an easy and judgement-free self-care tool.
PLEASE TRY IT OUT! Really! You just click through the questions to answer and follow simple instructions that in the end, ideally, will help you to feel more comfortable and stable on a daily basis.
Good luck! Have fun!
Wow this self-care took is incredible.
I’m feeling ok right now and am about to settle into bed (but this was scheduled hence the early morning post) but I flipped through it for awhile just to see what it is like and holy crap it’s like a choose-your-own-adventure of self-care activities that not only aims to engage you in positive feel good behaviors but also tries to match its suggestions to your level of energy/ability/can even.
I think I am going to use this definitely when I am having a bad time but maybe also try to incorporate it into my life on at least a weekly if not a daily or semi-daily basis.
Reblogging for my followers who might have trouble remembering whether or not they’ve taken their medicine!
OH MY GOD, THIS WILL HELP ME SO MUCH. I GET SO SCARED WHEN I DON’T KNOW IF I JUST TOOK MY MEDS TWICE.
THANK YOU, I’M ABOUT TO CRY.
Let me share with you guys a product that super helps me remember if I took my meds or not (because while the above is great, I still would manage to confuse myself):
They count as soon as you put the top back on. So if I don’t know if I’ve taken my medication for the day, I can check the cap to see how long ago I opened the container! It’s brilliant!
JFC THIS IS A GAME CHANGER.
I KNOW THIS IS MY ART BLOG BUT EVERYONE WHO TAKES MEDS SHOULD SEE THIS.
Too much excitement to comprehend. Reviews indicate that yes, this thing actually works! Great for folks who have trouble lifting jugs or can lose control of them.
The website says it’s not available in stores, but you can absolutely get it on Amazon 😏
Holding the Bowl 