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#chronic illness tips
Reblog with your favorite chronic illness or disability tip
Mine is using an adjustable laptop table for bad pain days to use in bed
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hack-saw2004 · 3 months
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eds pals (or honestly anyone) with inflammation problems read this!!
i saw an absolutely incredible orthopedist today who suspects i have arthritis, and he recommended i try tart cherry or pineapple bc those apparently can help with inflammation! i got juice to start with but he also recommended pill forms. will def keep y'all posted if i notice any difference, but i honestly didn't even know i was inflamed to begin with so idrk what im looking for lmao. wanted to share this nugget of knowledge with y'all tho bc he was incredible for the whole appointment and i trust his word.
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shellsinadune · 1 year
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How I clean myself while chronically ill
For reference: My main disabilities related to hygiene are POTS, ME/CFS (moderate-severe), and cognitive/executive functioning disabilities (due to ME/CFS, autism, and a dissociative disorder). This is not universal, it's just how I do it. You might or might not find this helpful, I've just found that it is for me specifically.
So, you've recently found yourself unable to shower the way you usually do. You've just been finding yourself overwhelmed every time you think about getting in, even with a shower chair. That's rough, buddy. Fortunately, you're not the only one, and while I am by no means an expert, I have experience with this. So here's how I do it, free for you to adapt as you like.
Are you ready? OK, let's begin.
[TL;DR: Use shower wipes, micellar water, and a fine toothed comb to keep your body as clean as possible without needing to get out of bed or using water. This contains a list of what I use, steps for ordering things, and a completely opinion-based section on haircare. The most important point is to use different wipes for the following: (1) torso, (2) left arm, (3) right arm, (4) left leg, (5) right leg, (6) genitalia and butt - front to back.]
Editing to add something I forgot, but it's important enough to put above the read more: make sure to seal your wipes and put your caps back on. Just spilled the micellar water on my bed.
Step 1: The Supplies
Shower wipes. Getting specific ones for showering (brand doesn't matter) is preferred, but any body safe wipe will do. Make sure at least one type is antibacterial, though.
Deodorant. I recommend nuud because I don't do this whole thing every day and this one works for up to a week (depending on what I'm doing), but again, use whatever works.
Micellar water. Any kind, as long as your skin likes it.
Cotton pads. If you're more able to do things like laundry and don't have memory problems that might cause you to forget them in the washing machine and run out, use reusable ones, but I use disposable.
Moisturiser. Again, whichever you want. (At this point, add whatever other skincare items you like to use, I just want this to be over as quickly as possible.)
A fine toothed comb. Ideally a wooden louse/nit comb if you can find one. (Only applies if you want to follow Step 4.)
Any extras. For me, that's lip balm, lotion, wide nail clippers, and antibacterial hand wipes.
Bonus round for doing this in bed: a container to put all this in, a rubbish bin near your bed that you can reach while sitting in it.
Step 2: Cleansing
(It doesn't matter whether you do face or body first. I do body first, so that's the order I'm writing this in.)
Get the shower wipes out and open the container. If it helps to get them all out at the same time, take out 6. One is for your torso and neck, one is for each arm (do the actual arms first, then focus on the armpits), one is for each leg, and one is for your genitals and butt (in that order, wipe front to back). It's going to be a wipe-down, obviously, but try and be as thorough as possible. For me, the armpits are the biggest issue, so I hold the wipe on for up to a minute each before scrubbing until there's no smell.
I use two cotton pads for my face and neck, one for the left side and one for the right. Really, this one is just washing your face so it's up to you how you do it, but make sure to get behind the ears (I always forget with the shower wipes).
Step 3: The Leave-Ons
(For this one, order does matter, but only if you use the same deodorant as me.)
Do the rest of your facial skincare routine. For me, that's just moisturiser and lip balm, but if you want to use other stuff that's your prerogative.
I don't use lotion every time I do this because mine is really thick, but I always move my joints around with their full range of motion to see if anywhere feels tight and use it if I need to. This saves on energy.
Deodorant is always the last thing I put on because it's a finger-applied product. Ignore that if you use something else.
[Step 3.5: Get Dressed]
Step 4: Hair (or, the opinion piece)
This is probably the most out-there advice I have. If your hair is unrelaxed type 4, sorry, I can't help you.
So I'm describing a product-free method that was used in the middle ages to keep hair clean(er). If your hair is long, you might want to have hairbands, bobby pins if you want, and, if we're being really historically accurate, some kind of cap made out of cotton or linen. I don't use any of those, though, and it works, but mine is short so I have no idea how your hair will react. I don't do this often, only twice a week after at least two weeks have passed since washing my hair. Do this as often as your energy and comfort permit.
Take the comb and brush each piece of hair from directly at the scalp to the very ends in one motion. This takes the oils away from the scalp and gives moisture to the ends at the same time, so unless you have very dry hair, you won't have to use conditioner. It also exfoliates the scalp, if that's something you care about. Do this for 15 minutes or as long as you have the energy for it. (Fun fact: this practice is where the idea that 'brushing your hair with 100 strokes a day makes it silky and smooth' comes from.)
For long hair: braid/plait it to avoid tangling. If you want to put it up, pin it to your head in whatever configuration you want.
The cap lifts things like sweat off your head and makes sure dust and stuff doesn't get on your hair, which keeps it cleaner. A completely optional step, but it's nice so I thought I'd include it anyways.
My hair is type 3a, so I know this sounds very counterintuitive to a lot of type 3 people, but we aren't going for looks, we're going for feeling cleaner (for me, it kind of just goes wavy, not frizzy at all, but I do wait a while before doing it). This is based off a European practice (AKA designed for white people's hair), so if you know of a different way to keep hair clean that works better for your hair, do that instead.
I don't use dry shampoo because it's messy, and honestly unless I'm doing the above, I just wait until I'm well enough to shower.
The End
OK, so that's how I do hygiene. If you're going to take away anything from this post, please let it be the areas of the body each shower wipe should cover. Any less than that (at a stretch you could combine the leg ones) and you could be at risk of getting germs where they shouldn't be or just wiping them around without cleaning them.
Happy not-showering! I hope the rest of your day goes well.
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iamyouknow-yours · 2 years
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Hey so I didn't know about this tool and I think everyone who has POTS should because it's really useful!
You put in the amount of salt and it tells you how much sodium in mg that is. And then you can put how much you get from your diet and it tells you how much leftover in teaspoons you still need.
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mental-mona · 1 year
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I'd take her vitamin recommendations with a grain of salt, but she makes some good points.
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eclectic-ways · 1 year
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They should publish books in this format.
FYI: There are apps and plug-ins of this Bionic Reading for Google Play, Chrome, Microsoft Edge (Internet Explorer), Firefox, iOS (Apple) and on WEB
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theygender · 2 years
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August 11, 2022
I just wanted to give everyone a heads up that 30+ brands of nutrition drinks including but not limited to Ensure, Pediasure, Glucerna, Oatly, and Premier Protein just got recalled for possible contamination with the bacteria that causes botulism, a paralytic toxin with a lethal dose of 1.3 nanograms. If you've purchased one of the affected lot numbers please return it to the store to be properly disposed of as a biohazard but do not accept any compensatory gift cards because that can be counted as a settlement if you need to file a lawsuit for any potential damages caused by this later on. If you have any questions regarding the recall there's a phone number listed in the article above that you can call, but if you believe you may have ingested toxins then please call your local poison control hotline. Stay safe
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neuroticboyfriend · 1 year
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tip for people with chronic pain/fatigue: lay down occasionally. haven't laid down in the past 3-5 hours? do it (if you can) and see how you feel. i've found that i'll lay down in bed just to be in my room, but then i get hit with an instant wave of relief because just sitting on the couch was too much for my body, and i didn't realize it.
when you're in pain or fatigued for a long time, your awareness of your body may get wonky - especially if you already struggle w/interoception due to neurodivergency. so. test it, sometimes. you can apply it to other things too: sit if you're standing. stop doing a task if you've been doing it for a while. have a small snack to see if you're hungry. etc. etc.
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frankiensteinsmonster · 3 months
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❗CRIPPLE TIPS❗
✨ Able bodied friends edition ✨
If you are in a group that includes anybody who is using a mobility aid, if you are out and about and a Stairs Situation arises, either ask them which they'd prefer, or opt for the elevator (given your group is small enough. If not, have a couple friends use the elevator with your disabled friend, after asking if this is what they prefer (they may enjoy a moment alone, everybody is an individual with their own preferences). This means they don't lose the emotional "high" of being part of a group, conversation can continue so they won't suddenly feel lonely and excluded on the solo elevator ride, which can creep in and ruin their mood especially if they're new to their disability, and there's less of a chance of confusion once you're at your destination. Nobody likes being lost, but the inherent exhaustion and physical exertion that comes with using and mobility aid is incredibly... Unfun. And distressing! This can be easily avoided and you have the chance to be an Excellent friend! We notice these things!
This post is about being Physically Disabled, Able bodied people are encouraged to reblog, but Do Not Derail-- make your own post if you need to say something not related to being physically disabled.
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theramblingvoid · 1 year
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Low level/continuous pain tips for writing
Want to avoid the action movie effect and make your character's injuries have realistic lasting impacts? Have a sick character you're using as hurt/comfort fodder? Everyone has tips for how to write Dramatic Intense Agony, but the smaller human details of lasting or low-level discomfort are rarely written in. Here are a few pain mannerisms I like to use as reference:
General
Continuously gritted teeth (may cause headaches or additional jaw pain over time)
Irritability, increased sensitivity to lights, sounds, etc
Repetitive movements (fidgeting, unable to sit still, slight rocking or other habitual movement to self-soothe)
Soft groaning or whimpering, when pain increases or when others aren't around
Heavier breathing, panting, may be deeper or shallower than normal
Moving less quickly, resistant to unnecessary movement
Itching in the case of healing wounds
Subconsciously hunching around the pain (eg. slumped shoulders or bad posture for gut pain)
Using a hand to steady themself when walking past walls, counters, etc (also applies to illness)
Narration-wise: may not notice the pain was there until it's gone because they got so used to it, or may not realize how bad it was until it gets better
May stop mentioning it outright to other people unless they specifically ask or the pain increases
Limb pain
Subtly leaning on surfaces whenever possible to take weight off foot/leg pain
Rubbing sore spots while thinking or resting
Wincing and switching to using other limb frequently (new/forgettable pain) or developed habit of using non dominant limb for tasks (constant/long term pain)
Propping leg up when sitting to reduce inflammation
Holding arm closer to body/moving it less
Moving differently to avoid bending joints (eg. bending at the waist instead of the knees to pick something up)
Nausea/fever/non-pain discomfort
Many of the same things as above (groaning, leaning, differences in movement)
May avoid sudden movements or turning head for nausea
Urge to press up against cold surfaces for fever
Glazed eyes, fixed stare, may take longer to process words or get their attention
Shivering, shaking, loss of fine motor control
If you have any more details that you personally use to bring characters to life in these situations, I'd love to hear them! I'm always looking for ways to make my guys suffer more write people with more realism :)
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Crip Tip: “Rate your pain on a scale from 1-10”
Give your doctor a frame of reference!!!
For example: I say, “when I broke my elbow, that was about a 5. Right now my foot pain is at an 8”.
I’d suggest choosing a common experience as your reference, like a broken bone or first degree burn. Or, if you have an experience known for high levels of pain (for example, spinal fusion or kidney stone), you can say “that is my level [x] pain, I am at a level [y]”.
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butchtheworld · 3 months
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crip tips
i'm an experienced disabled person (EDS, CFS, POTS, chronic pain). here are some of the things that help me get by as a college student (note: i use a wheelchair and a cane most days. i also am fortunate enough to have decent medical care, meds, and my aforementioned mobility aids)
shower chair. i can't stand for long enough to shower, and especially not if it's a hot shower. i got a cheap one off of amazon that has three legs and a plastic seat. that plastic seat makes it super easy to keep clean. i know there's a weird sort of embarrassment about sitting in the shower, but PLEASE, it is so much better than sitting on the floor in the shower or falling. in my dorms, there are two (2) showers with fold-down seats. i put a small towel down on the seat so i'm not bare-ass on this dorm bathroom surface, then i wash it down after.
normal wheelchair gloves are fingerless, which suck for winter. BUT, winter cycling gloves have the same cushioning on the palms and grip material and fingers. they're not super warm, but throw on a pair of thin gloves underneath (or, if you're like me, propelling keeps your hands super hot anyways).
an ice pack on the back of your neck can help with migraines and dizziness. i keep a small one in my freezer at all times. i tuck it into a hairband so it can be hands-free.
PLEASE adjust your cane/crutch/crutches to the right height. it helps so much with shoulder/elbow pain and balance. if it doesn't feel right, it probably isn't. the handle of my cane hits around the height of my wrist if my arm is just hanging down.
if you have hyper mobility, try high-rise shoes. i wear only high-rise converse and doc martens, which i can lace tightly around my ankles to keep them from rolling or sliding out of place.
(MENTIONS FOOD AND CALORIES) keep an easy, high-in-calorie food around. for me, eating on high pain days is essentially impossible. so, i need something that i can get myself to eat (like ice cream or canned soup or chips) that won't take any effort. ice cream is a great one for me, since it's sweet and cold and dense. even if it's not healthy, nothing is more unhealthy than not eating.
please, please, please find a community of disabled people. most of my close friends are able-bodied and, as much as i love them, they just can't understand it like other disabled people do. i found two great communities on my college campus, but i've also heard that support groups are a great way to meet people within the community
if you have any other tips, reblog with them. i remember the beginning days of my illness and how daunting all of this was. this is how we support our community.
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labmousegirl · 2 years
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are you disabled or suffer from other chronic conditions that often leave you bed bound? do you often feel like you’re in the “damn bitch you live like this?” meme because cleaning is too exhausting?
my protip is get yourself one of THESE bad boys and hang it by your bed
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it’s an over the door shoe rack and the pockets are perfect for holding a lot of household objects.
you can use the pockets to store trash, snacks, meds, and water bottles. if you worry about hygiene, you can also keep some for dry shampoo, deodorant, body wipes, clean undergarments, or toothbrush materials. on good days, you can clean it out and restock it, or have someone else help you. on bad days, you won’t have to worry about getting food and you’ll be able to feel a little better about hygiene.
it’s also really great if you want to keep your hobbies close by!! i can often only work on my bed, and then i have to worry about putting everything away if i have to lay down. if it’s a hobby that has materials that can be stored in the pockets, it can feel more accessible to jump in and out of and take less spoons to set/clean up.
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phleb0tomist · 6 months
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did you grow up with chronic pain? did you get called sensitive as a kid/teen with chronic pain? were you bombarded with wisecracks from adults who said you won’t know real pain till you get older? join my initiative to ban this vile practice from planet earth!
i had chronic pain as a kid. (still do now.) my physical ability was best in childhood, like, i could do cartwheels then, meanwhile i can’t walk now. but istg my pain was regularly at this very same level back in childhood. ok i have extra symptoms now which make things harder, but if we’re JUST focusing on the pain part, it’s often the same. this blows my mind. the level of pain that i have now, bedbound and with opioids and a million accommodations, is the same level i had when i was 10 when i was just walkin around all day, asking my teachers nicely if i could sit indoors during playtime. (they said no btw.) back then, every time i tried to tell people how much everything hurt, adults said i was “sensitive”.
was i sensitive? is that what i was?
I think i must have been insanely powerful as a 10 year old to be out and about with a level of pain that makes me nonfunctional as an adult. I wonder how many kids and teens are in that amount of pain right now and are being dismissed because of their age. i think the way adults treat children with long term pain is evil. “you don’t know real pain! it only gets worse as you get older! wait till you grow up!!”
okay i waited.
i’m closer to 30 now than i am to 10, and the more hindsight i gain, the more i realise what a horrific violation it is that my pain was ignored when i was the most vulnerable to the trauma of unmanaged pain and had the least frame of reference for what level of agony is normal to experience while climbing stairs
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valeria-sage · 1 year
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Guys. I’m in love. These are some small, quick exercises for people who are bed-bound. It’s linked, but for anyone who doesn’t want to read it:
Hands, Shoulders, and Arms
Shrugging Shoulders
This exercise works best when it is done while sitting down. Shrug shoulders in a way that the shoulders reach the back of your head. It is best to repeat it 5 to 10 times a day.
Palm Stretching
To do this, open your palm and extend your fingers for a few seconds. Try to extend as much as you can until you feel a stretch. Now, touch your thumb with each finger individually. Repeat the same for both hands.
Arm Raises
A very simple exercise is to raise your left arm as high as you can above the head. After repeating it five times, repeat this five times with your right arm.
Now, raise your left arm again in front of you and then change your arm five times. These are called forward arm raises.
Now, for one of the best bed exercises for arms, raise your arm straight out to the side, this is called lateral arm raise. Do it one by one for each arm. If you have the strength, then do this for both arms at the same time.
Arm Crosses
For this, move your arms to the sides until you feel a minor stretch. Now, bring the arms closer to each other in a way that they pass each other in a cross.
Neck
Head Rotation
You can do this while sitting. You need to tilt your head to one side and then rotate it 360 degrees gradually. Repeat the exercise from one side and then repeat it in the reverse direction.
Head Turns
For this, you need to turn your head slowly from one extreme to another. Stretch your head in a way that you feel extreme tension on the side of the neck. Repeat this five times a day and increase the number of repetitions every few days.
Leg, Ankles, and Feet
Leg Rotation
To perform this, keep one of your legs still. Move the other leg to the outer side, a little away from the first leg. Bring it back again and repeat it for the same leg several times. Now, do the same for the other leg.
Ankle Rotation
For this one, extend your legs while sitting down or lying down. Now, raise your leg slightly above the surface. Rotate your ankles clockwise and anticlockwise. Do this at least five times each.
Toe Bends
While lying down, flex your toes when you point them. Stretch the toes outwards and then inwards, towards yourself.
Ankle Bends
Bend your toes in a way that they are pointing towards the ceiling and then backward.
Full Body
Hip Raises
To do this, you can lie down on your back and raise your lips slightly from the bed. You need to keep the hips in the air for a few seconds before you bring them down.
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thisthat-ortheother · 2 months
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…this is actually a bunch of friendly but important reminders standing on each others’ shoulders in a poll-shaped trench coat. btw
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