#chronic disease

[myalgicencephalomyelitiscfstom]

[i-say-stupid-things]

what is it with able bodied people saying “get well soon” after you say that you’re chronically ill?? like? i am not gonna? and i once literally responded with “i’m not gonna, it’s chronic, as in permanent.” and they went like “oh well, hope you get better!” like bro 💀

[tumble-tv]

"kill them with kindness" WRONG run them over in your wheelchair 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽

[blitzsicedcoffee]

The mind numbing anger of chronic fatigue is getting irritable because you're so fucking tired but you really feel like you SHOULDNT BE.

You SHOULD be able to sit at a desk and do work. You SHOULD be able to just watch a freaking YouTube video. You SHOULD be able to just eat fucking lunch.

But you can't. Because your eyes are closing and it's like temporary death is taking you.

[spoonie-support]

[chronicallyillandcoping]

Anyone else find it difficult to remember that abled bodied loved ones are gonna worry when we talk about new/concerning symptoms? Like in my mind its just another day,just a bit more pain, just a flare etc. but for them its different and sometimes i find it hard to be mindful of that.

[incognitopolls]

We ask your questions anonymously so you don’t have to! Submissions are open on the 1st and 15th of the month.

[houstonxbreed]

Disabled people get criticized and called lazy for being unemployed but nobody wants to discuss how employers won’t hire us because we’re considered a “liability”. Many companies also refuse to accommodate individuals with disabilities. Let’s not talk about how the government takes away our lifesaving healthcare benefits if we make more than $2000 a month and this the reason why most disabled people live in poverty!!!

[cakesexuality]

My personal record is 9, the person who drew it kept calling me "a rockstar" for having that much at once

Please reblog for sample size

[nightinghoul]

If you have a chronic illness, you may never get well:

A bulleted list, because I cannot process big blocks of words.

You may manage it better or worse than other people with the same chronic illness.

You may have days where you feel Iike giving up.

You may have days where you are at peace with your illness.

You might feel awkward when people tell you to "get well" or ask if you're "feeling better yet".

You might feel hurt when people tell you to just be more positive.

You might want it to just be okay to feel sad, angry, frustrated, or tired, and it is.

You might feel guilty sometimes, because you feel like a burden, or like you're letting everyone down.

You might not be able to work.

You might feel like a faker, because of what you CAN do.

You might need a mobility aid or medical device.

You might have no visible signs of illness or disability.

You might need different accommodations than other people.

You might feel hurt because people say, "I wish I had it so easy."

You may feel like you really need to talk about it, but people don't want to listen.

You may have a hard time convincing doctors to help you

You may need a lot of help and rely on another person or people.

You may have no one to rely on.

You may feel like you are all alone with this experience.

You are not alone.

You are not a faker.

You are not less than.

You don't owe the world your soul.

[serana666]

Getting on my soapbox about something I think is REALLY important for chronically ill ppl to think about.

Being undiagnosed and disabled is a terrible experience. You’re screaming into the medical void for ANYONE to please SEE YOU and help. You start thinking “is it just me? Could it just be in my head? What’s wrong with ME?”

And I’m here to tell you, it’s 👏🏻NOT YOU👏🏻 it’s THEM. (The doctors)

I have been through the grueling process of becoming totally disabled by chronic illness, without knowing what it could be. I picked up diagnosis’ along the way: RA, then lupus, then fibro. And I am LUCKY that my blood worked with me to show those things, not everyone is so lucky.

I kept thinking (foolishly buying into the narrative doctors try and sell you) that if I could just get a *serious* diagnosis I would finally be given access to the care I needed, that ALL disabled people need. That was never the case at any step in the process.

When I was diagnosed with RA and began having symptoms outside of it, that were completely debilitating my rheumatologist told me I just needed more exercise and activity. I told them specifically I had fatigue so strong that I was loosing the ability for basic functioning.

When I found a new rheumatologist and was diagnosed with lupus I thought my troubles were over. Then she started saying weird shit like “do you have a boyfriend? You’re so pretty!”

She found out I was a lesbian when I brought my girlfriend to my appointment to be my advocate. Her whole demeanor changed to me and I spent 6-8 months with her receiving no treatment. They kept saying “oh it’s the insurance” nope they sent me letters telling me this office was not following up.

So I moved to a blue state literally out of fear that I would die waiting on these bigoted doctors. I got a rhum in a blue state. I was diagnosed with secondary fibro. Again, I foolishly believed I would finally be in the clear. No, she still minimizes and blinks at me when I describe my pain.

Doctors are not our allies, even though they should be above all else. They find ANY excuse to minimize us. So if you are someone who is undiagnosed or with a diagnosis that is misunderstood/not taken seriously , they will milk that for all it’s worth. 👏🏻ITS NOT YOU👏🏻

I’ve seen people in disabled communities minimized for their race, their weight, their gender, their sexuality/queerness, their age, their diagnosis or the lack thereof, ITS NOT YOU!

You know your body, and the pain you feel BETTER than any doctor that has been trained to systemically ignore you!

Don’t let them tell you what your reality is. It’s such a knee jerk reaction for minorities to do this to themselves.

You deserve medical care that isn’t contingent on your doctors bias’. We NEED more empathy. Don’t let their disregard for your life leak into the love you NEED to give yourself. 💕

[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!

[i-say-stupid-things]

psa: you actually are worth it. you are worth the trouble. you are not too much to put up with. your disability doesn’t make you unlovable. you’re not too much of a burden to “put up with”.

you are amazing and lovely and the right person will come and see just how wonderful of a person you are. your disability changes nothing about that

[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.

[blitzsicedcoffee]

Reminder to myself: it takes a lot of fucking energy to be in pain

[spoonie-support]

This is your "oh shit it's getting hot again" reminder that SSRIs / antidepressants cause sun sensitivity and make you more prone to dehydration. Stay hydrated babes.