#life with ME/CFS

[compassionmattersmost]

A New Beginning: Living with Peace, Chronic Illness, and Self-Compassion

A Visualization and Aspiration for the Future: Creating a Sanctuary of Healing and Mindful Living in My New Apartment. As I imagine moving into my new apartment—a warm, inviting space filled with peace and promise—I picture each morning, sunlight streaming through the living room windows, where I’d sit with a cup of herbal tea and meditate, letting my heart rest in the stillness of the morning.…

[araekniarchive]

@mnvart // Kaveh Akbar, 'Calling A Wolf A Wolf' // @PinkRangerLB on Twitter // @kosmogrl // @devinsturk, '15 Proverbs for the Fellow Chronically Ill' // Jasmine Deporta // Anaïs Nin, House of Incest // the gentle wisdom uquiz by @inkskinned // Rora Blue, 'Sweet Dreams' // Hala Alyan, Dear Layal

[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

[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!

[externalmemorycomic]

Image description: a five page comic with messy writing and messy line drawings coloured with gouache. Each page has four panels and each panel has a caption and an image. Page one Caption: Mouse and Ruth go for drives a lot. Image: a red car drives down a country road. Caption: to stores and beaches and the dump where you can find cool things. Image: a white mouse looks up at a wall with doll’s heads nailed to it, labeled “wall of dolls”. Caption: I almost never join. Ruth asks, “isn’t My going stir crazy?” Image: a deer is driving a car, and the mouse sits on a pile of pillows on the passenger’s seat. Caption: but I’m so used to this I forget there’s anything to go crazy about Image: an orange cat lies in bed.

Page two Caption: When we lived in Malmö there were weeks I didn’t leave the apartment Image: the cat peeks out a window, looking at a pigeon that’s pooping on the window ledge. Caption: months I didn’t see anyone besides Mouse. I just couldn’t manage the stairs Image: the cat looks down an exaggerated, maze-like staircase. Caption: Mouse wasn’t much better off. I took up indoor “gardening” so we wouldn’t miss nature too much. Of course I often couldn’t water the plants. It felt bitter and symbolic when they died Image: the cat is in a different bed, looking at a house plant on a side table that’s beginning to wilt. Caption: here there’s no stairs and I have plants and bees right outside my window Image: the cat is in the first bed, drawing a comic. There’s a flower, a butterfly and a bee outside the window behind it.

Page three Caption: people tend to get frustrated with my acceptance Image: the cat takes down a half finished painting from an easel. Caption: even after we’ve talked a lot about my illness, they think I should plan ahead as if a cure is right around the corner Image: a rabbit is standing beside a table covered in unfinished canvases, looking at  one of them. The cat stands behind them, looking nervous. Caption: often it’s the same people who respond to tragedies you CAN fix by saying “life’s not fair” Image: the cat is rescuing bugs from drowning in a water barrel and the rabbit looks over its shoulder, looking annoyed. Caption: but when I let go of what I can’t have, they see it as defeat. Image: the cat is curled up and hiding in bed while the rabbit stands over them, frowning, holding the unfinished painting and waving two paintbrushes.

Page four Caption: I understand the impulse to say “maybe some day”. When it’s kindly meant, I value the intention. Image: The rabbit has its arm around the cat’s shoulder and waves towards a thought bubble. In the thought bubble the cat is floating and happy at the end of a rainbow with pink clouds, flowers and a smiling sky in the background. Caption: but few things are more dangerous to my soul than “maybe some day” Image: the cat huddles on the ground and hides its face. Right above the cat, as if pushing down, is a bigger thought bubble with images of the cat looking happy - dancing, being held, proudly painting, holding a baby. Caption: There is no greater wisdom in life than: fix what you can and accept what you can’t. Image: the thought bubble is breaking up and shrinking. The cat is sitting up, smiling at a dandelion beside it. Caption: some times, giving up isn’t just the only way to survive but to thrive, and leave room for joy. Image: The half finished canvases are burning on the ground and the cat walks away without looking back.

Page five Caption: today I’m sad because I’m in pain and I miss moving and doing Image: the cat is crying in bed. Caption: but when I thank God for giving me this life filled with blessings, it’s from the heart. Image: the cat wipes away some tears and looks a little happier. Caption: I am happy more often than not. I mostly cry from gratitude. There is no contradiction Image: the cat closes its eyes and is surrounded by a pink glow and red cartoon hearts. Caption: life will ask me to let go of much bigger things and maybe I can come with to the dump next time Image: the cat looks at the wall of dolls and says: “cool!” End ID. Here's some disability thoughts I had during my latest flare (hence the wobblier-than-usual lines and messy writing). I hope it makes sense even if I was pretty confused when I made it! I have POTS and ME/CFS, as well as ADHD and being autistic. Accepting the reality of being bed/housebound and hard-of-thinking often is going to be a life long effort but I'm getting there. Happy disability pride month!!! Reblogs are much appreciated! (if you wanna help me live and stuff and make more art and comics I have a Patreon. I post comic pages there on average once a day for the 3€ tier as well as other fun things! Link in my pinned post)

[unfilteredrealities]

Hey Google , how to not beat yourself up for being chronically ill and how to still be compassionate with yourself when it’s very hard to do so? 😭

[iplaywithstring]

Today I get to play a round of "I know I've been diagnosed with a chronic illness, but maybe I'm just lazy"

[slveepyscwrs]

The Fatigue Trio: CFS/ME, fibromyalgia, and narcolepsy

ID: An image of three kittens in a cage, each with a speech bubble above their head. The grey kitten's speech bubble reads, "I'm narcolepsy," the orange kitten's speech bubble reads, "I'm CFS/ME," and the black kitten's speech bubble reads, "I'm fibromyalgia." A text box at the bottom reads, "the fatigue brothers." End ID.

[violet-phoenix-nebula]

Reblog if the word psychosomatic or synonyms of it trigger instant, burning rage.

psy·cho·so·mat·ic adjective (of a physical illness or other condition) caused or aggravated by a mental factor such as internal conflict or stress.

[Basically, the fancy word for "it's all in your head"]

[crazycatsiren]

No, I simply cannot be positive all the time. I need to allow myself to be angry, because I have lost more than 50% of my life, and it sure as hell is something to be angry about. So I am so fucking angry!

[mrs-snape5984]

“There is no other love, it's only yours…”

“You're all I want, all I love…” (“You’re all I want” by Cigarettes after Sex)

Yesterday I had a really rough day. It didn’t just feel like one of my regular “PEM-Crash-Days” (PEM = post-exertional malaise = the worsening of symptoms after crossing the boundaries of my condition, due to my disease ME/CFS). The whole day was also coated in a thick layer of sadness and grief…an emotional turmoil, which I could only barely endure. Well…mixing these feelings with another wave of fever and pain, seasoned with the incapacity of tolerating screen time, adding the suffocating sensation of loneliness….et voilà! The perfect recipe for a day in hell was created! 🙄

In order to cope with my emotions, I found myself drowning in my fantasies of teenage Severus and my undeniably self-inserted OC Jules…rewriting one of their short fictional scenes. Again, Severus was tormented by his own insecurities, getting carried away in self-loathing. I don’t know, how many times I’ve already written scenes like these. Jules encourages Severus to stay resilient, praising him for all those traits, which he only identifies as his flaws and weaknesses. But for Jules, there’s so much beauty, so much strength in his imperfections. She’s making his blemishes look like the most loveable attributes of Severus’ personality with her passionate speech.

When I wrote this little scene, I recognised something: I already knew, that I’m identifying myself a lot with Severus…but Jules’ words of encouragement and consolation to her beloved friend Sevy…well, they’re are also things, I would crave to hear for myself (how pathetic, huh?!). But since I’m struggling immensely with the acceptance of my own insecurities and fears, I’m not able to reassure myself of my own worth. It’s just not on the table for me!

So…I’ll just keep on telling Severus in my stories, that he deserves nothing less than the whole world…and that Jules will always try to make him feel loved and cared for. She will never stop to compare his flaws with her own weaknesses by explaining to him, how perfectly they’re matching. Jules will never grow tired to assure Severus, that his cynicism is the perfect complement to her sense of sarcasm. For the Slytherin girl, it's a clear sign for Sevy’s extremely high intellect, which is also something, that she adores about her friend. In Jules’ eyes, his bitterness mirrors a form of hypersensitivity, a characteristic, which she knows so well from herself. That’s why she’s acting so empathetically with Severus, whenever he’s suffering with his life…and Jules is convinced, that sharing those feelings will make them less unbearable! The girl even praises Severus’ stubbornness by telling him, that she’s enjoying every good and intelligent argument with him to clear the air between them. All together, Severus’ imperfections are pure perfection to the hopelessly devoted (and obviously love-struck 😅) girl.

I’m aware of the overdramatic nature and the unnecessary fluffiness of my short stories, but that’s the reason, why I’m writing them for my eyes only. It’s my form of a coping mechanism…the only way of allowing myself some kind of self-assurance and comfort…through Severus!

Some time ago, I found an artist here on tumblr, who made me fall head over heels for her tender style of drawing my beloved dungeon bat. Especially an artwork of her interpretation of the younger Snape made my heart ache with longing for him, so of course, I just had to commission @pssherri for an illustration of Severus and my OC Jules in their teenage years.

Sonja, you did an amazing job with this project and I can’t express, how grateful I am for your kindness and the dedication to your profession! It was a pleasure to cooperate with you on this idea of mine and I hope, you’ll be open to work on more of my requests some day. Thank you for everything, my dear!

🖤Severus & Julia🖤

🖤Sevy & Jules🖤

[spoonie-on-wheels86]

[muriers]

@mcyt-femslash - Week 4: Snow/Cultivation

So I know the "cultivation" part of this prompt meant like, plant cultivation, but I'm taking any excuse to draw wuxia au gempearl

[hellyeahsickaf]

Cooking While Disabled

One of the things I miss most about being less disabled is cooking. It was one of my favorite things to do and something I've always been good at.

On good days there are things I can do that make it easier. It's not the same as before, but I hope that sharing what makes it possible for me to cook helps others who struggle with it.

Tips for cooking while disabled:

You can incorporate precooked food in your meals. For example, stir fry with precooked rice with the ingredients of your choice, or taking frozen pasta (like the ones with maybe sauce and a couple other things) or plain microwave pasta (I prefer these, but heat it first) and putting it in a pan adding other ingredients like vegetables, cheese, garlic, etc

If it comes frozen or canned that can really help. Frozen rice you can just microwave, frozen cut veggies and garlic and onions are good as well

Buy a chopper with different shaped blades, spiralizer, electric slicer/grater, food processor, or any appliance that will save you energy. Ideally machine washable. Stand mixers are also better than manual ones. Especially helpful if you have joint/wrist issues

You can always prepare ingredients ahead of time. I find that sometimes it helps to prep (chopping or mixing ingredients, etc) earlier in the day or even a day before. Then you can put it in the fridge or freezer until you're ready to cook the full meal

Look up easy recipes or recipes for elderly/seniors. With the latter you may find more nutritionally balanced food but an unbalanced easy meal is better than none

You can sit while you prepare ingredients.

You're allowed to take breaks. You can turn the stove off, maybe put a lid on it to retain the heat, sit down, maybe take something for your symptoms. Some things you may not be able to stop in the middle of like making pancakes or deep frying something, but if you're making soup or curry or chili or something, often you can turn it off for a bit and take care of yourself.

If you need help and can get it, please ask for help. I know many of us need to work on asking for help including myself. Even if it's just washing the pots and pans or chopping something. You are not a burden you hear me?

Stretch before and after cooking just as one would before a workout. It will likely lessen any joint pain or stiffness as you are still exerting yourself

Listen to your body. Just as you're allowed to take a break, you are allowed to decide you won't be able to finish what you're doing. You may put away your food before it's done (if this won't ruin the meal). You are allowed to leave a dirty pot in the sink and come back to it later (just make sure you or someone else does before it gets gross). You can wash them in the dishwasher. I know this is bad for the seasoning on pots and pans but you can reseason them to be nonstick again and use nonstick spray

You can buy seasoning mixes rather than using individual seasoning. Instead of parsley, oregano, basil, etc you can buy Italian seasoning. Instead of paprika, pepper, cumin, oregano, salt, etc, you can just get taco seasoning. This may sound obvious but it can save a lot of time and energy

An issue I have is buying perishable ingredients thinking I can use them, having a bad week or two, and the ingredients have gone bad. Try to plan out your meals before shopping and ask yourself if there's an easier alternative for any ingredients. Maybe pre chopped fresh onion instead of a whole one, sliced mushrooms instead of whole, frozen vegetable blends instead of individual, powdered ginger instead of the root, bullion instead of stock that you may not be able to use all at once. I know this is like one of the other points but these are what I find most helpful

Use supercook.com! You input the ingredients you have on hand and you'll get a list of recipes you can make with what you have. Often there's a wide range of complexity and difficulty

Make enough food to freeze or refrigerate leftovers. It helps if you can portion it into single servings in Tupperware or freezer bags. You can prepare frozen burritos for your next few lunches or dinners, separate portion sizes of spaghetti, portion salads, etc

Feel free to add any additions!

[suhnandmoon]

going back and desperately saving all my old saved edits and videos on tiktok. heres my favorite loser hee video ive seen on that app for the road 🫰

[iplaywithstring]

I've got people coming over today, so I was motivated to do some tidying. Nothing major. But I was having a hard time and feeling dizy so I checked and

Huh. That is not ideal.

This represents activity between my sympathetic (orange) and parasympathetic (blue) nervous systems, based on heart rate variability.

Note that I woke up at 7 am, spent most of the morning sitting. Activity is represented by the little grey lines under the main graph.

I need a nap. But as mentioned, people are coming by. And tomorrow I've got appointments in the morning and afternoon.

Friday is canceled.