#spoonie life

[squid-socks]

Controversial opinion: Tw political?? Period representation

I don’t think trans women should be the representation for period ads. I think trans men should be. Bcs by choosing a trans woman you are hyper-feminising periods. You make them into a gender specific thing - which they aren’t and shouldn’t be. It’s not a woman thing so you aren’t actually representing the people that have it. It can therefore; only lead to sexism and conflict down the line. Periods should not be girl coded or pink coded they should be represented by the huge variety of people that get them. Not just women. I feel like we take every opportunity to ignore trans men and it bothers me.

Sorry, rant over.

[disabled-bug]

I’m so proud of people living with chronic health conditions. That shit is HARD. Idk who needs to hear this, but if no one else has said it: I’m proud of you. You’re sticking it out through so much pain and grief. That’s no small feat.

Every small thing you do for yourself health adds up. The grief is heavy and it comes from a place of love. The grief knows the pain is wronging you.

I’m proud of you. I hope on the good days you can be proud of yourself.

Keep going.

[tumble-tv]

"You're always so chipper and excited even though you're in pain, I could never."

Bethany, if I wasn't chipper and excited about the most mundane things like bees and dice, then I would literally be bedrotting all day every day, sobbing because my entire life is falling apart because I have no answers or relief to pain that doctors think is fake. So I will take joy in my trinkets and rollerskating while my body allows because one day I won't be able to.

[somniphobicfox]

This month, shoutout to new mobility aid users. People who've just recently bought a cane or a wheelchair or a rollator or any other mobility aids and are just getting used to them. People who are still figuring out how to navigate in them. It's alright if the aid that you thought would help you actually turned out to be useless/more destructive. Its alright if on some days even your aid cannot give you support. You are still valid, your struggle still real, and I hope you find what's right for you really soon <3

[doresworld]

It is so fucked up that disabled people are terrified of going to the doctors

[lifewithchronicpain]

If you don't need a cane, but you get one to signal disability because sometimes you get faint and need to sit, or whatever, as a cane user for years, go ahead. Please, if it makes claiming accomodations easier for you, even if you don't need it to walk, I don't care. This is your permission if you needed it.

Can I suggest that you can get a foldable one at CVS (they're great) so it's there when you need it? Shits fucked up, do what you need to do. Just beware there are assholes that won't care about the cane. But overall, it does make things easier and is easily purchased. Go for it.

[slveepyscwrs]

If I had a dollar for every promise I broke due to chronic fatigue, illness, and disability, maybe I could actually afford healthcare.

[geometric-bs]

"Doing your best" (with chronic illness)

My doctor (bless him) straight up went "don't" when I said "I'll do my best"

Because what I think "my best" is, is completely draining myself for this One Thing and going above and beyond

I guess this goes for people w/o chronic illness as well, but "your best" shouldn't mean you end up hurting yourself in the long run. "Your best" is as much as you are willing to devote to something proportional to how much you care about it within the confines of what is healthy for you AND considering all the other stuff you have to do

Please just- holy heck we're already struggling so much please don't devote your precious energy to something that doesn't deserve it

don't do your best, do whats best for you

[spoonie-support]

[squid-socks]

Why is it always up to disabled people to look after other disabled people. Why do able-bodied people feel no obligation to assist? Why do they throw the additional responsibility on disabled individuals. Why is their whole system built on isolating groups??

[disabled-bug]

disabled people when their disability disables them

[hellyeahsickaf]

Low Spoons and Hygiene

Sometimes being disabled means struggling with hygiene and that can be embarrassing, even though it's not your fault or a reflection of you as a person. Nobody wants to be stinky or feel dirty, especially when a lot of illnesses and disabilities can entail symptoms like excessive sweating that can make the issue of struggling with hygiene a million times worse.

But smelling bad is the least of your worries, as poor hygiene can lead to things like skin infections. Bacteria and fungi like hanging around in stagnant, often damp areas that collect sweat. And most people have folds- even if just a little, which can be the ideal habitat for dangerous microorganisms. Not changing your underwear/bra or washing your body for an extended period can lead to things like jock itch, intertrigo, yeast infections, athlete's foot, UTIs (anyone can get one and they can spread to the kidneys within days or even hours- and you need those little guys!), all sorts of complications. The existence of foul or sometimes even a slightly "sweet" odor on your body or even in your urine tends to indicate the existence of bacteria (it's why armpits stink) or fungi like candida. Dental hygiene is equally important- an infected tooth or excessive cavities can be bad news. If you experience these things or struggle to regularly care for your body, it's not something to be ashamed of. All of those complications can and do happen to people who do everything right.

Note that issues like UTIs or dental infections don't tend to just go away on their own and need to be treated as urgently as possible.

However, I'll share some things that may prevent or remedy issues like infections and odor that's gotten out of hand and hopefully some may find this list helpful in some way. Any products I've listed may be found at other retailers or at different prices, they're just examples. Feel free to add on to it.

The bare minimum is always better than nothing. Brushing with just a dry toothbrush, using disposable body wipes or a washcloth/sponge instead of a shower, dry shampoo (the sprays are actually pretty bad for you, I'd stay away from those if possible), leave in conditioner, also whole body deodorant is a thing. If the most you can do is change your clothes- hell even just change your bra and/or underwear, it can be the one thing between you and an awful infection.

If infections are a concern, like if say you suffer from chronic UTIs or yeast infections it's advisable to wear breathable cotton underwear.

If you can't get up to brush your teeth or struggle to do so, it may be helpful to purchase disposable toothbrushes. These ones have floss picks attached.

Flossing is just as, if not more important than brushing. If you only have the energy to floss on some days, do that. If you need to keep floss picks and a place to dispose of them near your bed, then that's fine (just don't let it pile on without disposing of it and create a biohazard). it can help remove food particles that help create a breeding ground for bacteria. Also gently moving in and out between your teeth with slight movement if needed is ideal, don't roughly saw across your gums, ouch.

If you struggle with wiping say due to mobility issues, there are products for this. Wiping back to front as an alternative risks yeast infections and UTIs. It's a very common cause of these diseases due to bacteria like e-coli. We do not want that.

Crashing and can't wash your sheets? Out of shirts with no energy to do the laundry today? Antimicrobial fabric spray may help with the odor and bacteria that accumulates on fabric as a temporary fix until you can properly wash it. Try not to wear clothing or interact with fabrics like blankets and couches that are still wet from the spray, as that can irritate the skin.

Try to avoid "feminine wash" products if possible, you don't need the fancy Summer's Eve premium strawberry hibiscus blush scented whatever, it can fuck up your PH and kill good bacteria despite claims to do otherwise. Same with PH wipes. It's recommended not to use soap on your genitalia, especially scented and especially if you have a vagina. If you must use some sort of soap, dermatologists typically recommend the most basic, unscented wash. And do not put it in your body by any means.

Rinse free shower sponges have been a life saver for me, especially the ones that also work as shampoo (it's probably not color safe tho). You just add water, lather, and make sure you dry off well. If it helps you determine how much to buy, I normally find myself using maybe 3-5 sponges each time.

OTC jock itch cream can work for some fungal infections on the body not limited to jock itch but if you see no difference or worsening within a few days of using it, consult a dermatologist as you may need something different or stronger.

Unscented pads and tampons are best and should be changed every 4 hours or so ideally. Never leave a tampon in for over 8 hours. Despite common fears, 9 hours won't give you toxic shock syndrome, that normally takes a few days and is quite rare with tampons but that doesn't mean that 13 hours or something is good or safe. I've just heard some say that sex ed scared them away from tampons after being told stories of TSS. I hear that menstrual cups are also a great alternative that many don't consider.

Monistat and similar yeast infection products often come with different options like 3 day treatment, 5 day treatment, 7 day. I know you want to feel better ASAP, but just take into account that 3 day will be highly concentrated and can cause more burning than the 7 day. Longer treatment may also be more effective in some cases. Penile yeast infections exist as well. Just be aware that some products are more potent than others regardless of birth sex. Antifungals in general may cause itching and/or burning, which some are more sensitive to than others or may even find triggering in cases where it must be applied to the genitalia.

Hydrocortisone cream is your best friend if you're experiencing itchiness due to things like skin infections, contact dermatitis, yeast infections, etc. But please don't use it to mask the symptoms of an infection without treating it.

How frequently you need to wash your hair varies by hair type. This can vary between every 2 days for some and every 1-2 weeks for coily and textured hair. Make sure you look into what is ideal for your hair type. And again on days where you cannot wash, disposable sponges and dry shampoo can be a life saver.

If something is discolored, odorous, itchy, inflamed, bumpy, producing moisture, warm to the touch, oozy, weepy, splotchy, sticky, burning/painful, it may likely be an infection or in some cases an allergic reaction. Familiarize yourself with what different skin infections and diseases may look like on your skin tone. Ringworm and other fungal infections for instance may appear red or pink on fair or lighter brown skin, but on darker skin may appear gray or darker brown.

Fungal infections are also super fucking contagious. To other parts of your body, other people, even to pets. Wash your hands well with antibacterial soap, especially before and after applying any topical treatment or touching the area in any way. After a shower, PAT the infected area dry and do not reuse that towel or use on other parts of the body.

Invest in a shower chair if you feel it may help you, it's one of the best things I've ever bought. I didn't want to get one at first because it felt like I was "giving in" to my disability more and more but that's the internalized ableism talking. Get the shower chair.

A bar to help you stand from the toilet/tub/shower chair may also be helpful.

Again, feel free to add to the list if you want!

[tumble-tv]

*yawns*

*dislocates jaw*

*immediately sneezes*

*sneeze causes jaw to go back to normal*

[spoonful116]

"Have you considered that depression is causing your pain?"

"Have you considered that constant pain is depressing?"

[doresworld]

Favourite things about being disabled - part two

Closing your eyes whilst on the toilet because you’ve exhausted yourself to get there

Forgetting to take pain meds, even though you’ve been in pain for hours, but it might pass, so why take the pain meds

Sitting down and realising you forgot to do something important (get more water, or your phone charger) and realise that you’d rather suffer without than move again so soon

Thinking about doing something exhausts you, let alone doing it

No position is comfortable, so you just rotate constantly

[affixjoy]

Thinking today about how fucking BORING chronic pain is. In the last few months my endometriosis pain has been ramping up again, and I’ve been having more days with pain than without. Most of the time, like today, it’s just enough to be annoying, sap my energy, and distract me from whatever I want to actually be doing.

And yeah, it sucks to be in pain and be tired all the time. But it’s also so so boring. It’s boring for me and it’s boring for everyone around me. It makes me feel bored and it makes me a boring person to be around.