#Chronic Illness Blog

[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.

[compassionmattersmost]

The Art of Pacing: Managing Chronic Fatigue Syndrome with Skillful Means

There is a rhythm to living with chronic illness, one that requires a kind of surrender. Those who walk the path with myalgic encephalomyelitis or chronic fatigue syndrome soon learn that pacing is not merely a strategy—it becomes an art form, a way of listening, of harmonizing with the body’s quiet whispers before they become cries. To pace oneself is to acknowledge the body’s finite energy, to…

[thewanderingemporium]

Mid-Year Spoonie Health Check

We are halfway through the year, so now is a good time to stop and check in with ourselves. Particularly when you struggle with chronic illnesses or pain.

Our conditions can fluctuate for many reasons – which makes it so important to check in with ourselves. See what is working, what isn’t working, and start to investigate what we can do to better help ourselves and our bodies (and minds).

This is important for both people suffering with physical illnesses and mental illnesses, which can be equally as serious and need just as much love and support. So, I have come up with some questions to help you check in with your mind and body this month.

Just a reminder– I am not a health care professional and have no medical training. If you have any concerns about your health – especially raised when going through these questions – contact your health care professional as soon as possible.

Quick 6-month check-in list:

How is your mental health doing right now?

Are your emotions stable – or fluctuating more than usual?

Have you been experiencing more negative emotions than usual – without specific or obvious causes?

Are mood swings and low moods becoming more difficult to manage than usual?

Do you need extra support/would extra support help?

How is your physical health doing so far?

Are your health conditions stable?

Are you experiencing any symptoms which are not usual or have come on suddenly?

Are you following your health plan from your health care professional?

Are you struggling with your health conditions?

Do you need extra support/would extra support help?

Health trackers:

Another thing you could do is track your health conditions. It can be hard to really see the bigger picture when you are in the midst of a flare up, or battling exhaustion.

But if you keep a track of your health daily or weekly, you can look back and get a more accurate idea of what is working, and what isn't.

Health trackers can range from very broad, to very specific depending on your needs.

You can track your pain levels; what medication is helping, or not; how sleep is affecting you; the impact of certain food types.

The possibilities are endless and can be as specific as you need for your condition.

Tracking your conditions can also help you spot patterns you might otherwise miss (in my case - gluten sensitivity which really hit me where it hurts the moment I forgot about it).

Even with incurable conditions like CRPS, tracking what works or doesn't can help you respond more effectively to your body's needs.

If you’d like cosy, spoonie-friendly journals to make tracking easier, I have created some just for that (relating to IBS and CRPS at the moment). You can find them here!

Sending spoonie hugs!

[thewanderingemporium]

I really love this post and the concept ❤️ I will definitely start looking for ways to do this in my personal life!

Sometimes, with chronic pain, you have to make new traditions that better fit your body.

I'm someone who has always really enjoyed decorating a tree for Christmas. But honestly, as the years have gone by and my pain has gotten worse, it has become more and more difficult for me to participate in my family's tradition.

But the cool thing about being an adult is that I can create new traditions that don't hurt me quite as bad!

A year into my partner and I being together I saw a sale on gingerbread house kits. They were 50% off and under ten dollars for a pretty big house with all the icing and decorations.

He made us ramen, and we built and decorated our house while we watched a movie. We had so much fun decorating and working together on our little creation. And thus! A new tradition was born.

Now, every year, I keep an eye out for gingerbread houses to go on sale, and I snag one for us. I look forward to it so much. And the best part is? We can do it from our bed on my little "over-the-lap" desk. It reduces my pain so much. (And while it can be a little messy if you put down a throw blanket, you can just shake all the sprinkles that rain down into the trash when you're done.)

This year, we did a competition to see who could make the best creature with extra candy and desserts from around the house! I won. And we had such a fantastic time together.

It is such a magical experience to start traditions that actually take my disability into account from the get-go instead of trying to fit into already established traditions that I really struggle with.

So, if you are young and disheartened by the holidays, have hope! One day you will be able to shape your own traditions. And they can be whatever you want them to be.

[desultory-suggestions]

Sending love to everyone who has health issues or chronic pain in parts of your body that aren’t usually socially acceptable to talk about. It’s frustrating to feel like you can never explain your pain to someone because it’s TMI and to feel like you have to hide it. Your pain is nothing to be ashamed of. I see you, and I’m sending you support and strength.

[jasperxkuromi]

Play ideas for chronically ill, disabled, or otherwise bed bound/low energy littles

Hi all! I am chronically ill. I am not comfortable sharing my specific diagnosis, but I am more than okay with talking about disability in general. Everything below is based on my own personal experiences and activities I like to do while stuck in bed. Everyone's body and experiences are different. I may list some things that just aren't an option for you, and that's okay. You are more than welcome to add on to this post with activities you do too!

🐛 Open the curtains and cloud watch! I like to look for clouds that remind me of animals or characters and day dream a story about them. If the weather is nice, consider opening your window a little bit and letting some fresh air into your room.

🐦 Bird watch! I have a bird feeder outside my window that I painted myself from a kid's kit. There are also bird feeders that have suction cups that can be stuck right on your window. You can also make your own seed ornaments. You could pick yourself up a kids book or two on learning to identify birds.

🌷 Get a window planter. You may need someone's help to set one up, but once they are in place they are fairly easy to care for. I like pansies and marigolds because they remind me of childhood, and they are low maintenance and do well in containers.

📖 Audiobooks are great for middles who want to read chapter books. If you have a library card you can borrow tons of audiobook, ebooks, and comics through hoopla and Libby for free. There are some audiobooks for younger kiddo books, but honestly I think YouTube is better for that.

🖼️ Scrapbooks and journals! Being penpals with another little is also an option, but I do recommend using basic internet safety and common sense. (I don't think you should do this if you are under 18). You could always scan/take pictures of your letter and send it digitally to your penpal instead.

🛏️ If you spend a lot of time in bed, and have the money to do so, I really recommend getting items to make your time in bed more comfortable. Extra pillows, or even a reading pillow can be helpful. Lap desks or bed tables can give you space to color or set up play scenes with small toys.

🌟 You can also decorate the area around your bed to make it more child like! Fairy lights, glow in the dark stars, bed canopies, posters, and the like.

🪑 I have a floor chair I use for times I am playing outside of my bed. Being close to the floor helps me feel small, but not having back support hurts after a short while. I have an adjustable one that I can lay flat on the floor as a sleeping mat. Very helpful for the times when I need a quick nap after playtime.

🎨 Check the seasonal and kids sections at dollar stores and Five Below. I usually find fun craft kits that can keep me occupied for a bit for really cheap.

🧶 Do your own crafts! I like the knit and crochet. Some people can do them in bed, but I find it difficult to find a comfortable way to do that. However making friendship bracelets in bed works out pretty well. They make great gifts, even for non little friends. Or you could make matching ones for you and your CG or favorite plushie!

🪀 Make your own sensory bin! You can find tons of tutorials and ideas online. Bonus is you can get most of the items you would use at the dollar store. There are tons of other DIY sensory toys you can make as well if you look around. Glitter/shaker bottles are pretty popular too.

🐇 Cuddle with your stuffed animals. Tell them stories. Play pretend. Read to them. They will appreciate all of it.

🎮 If you have an old 3DS stuffed away in a drawer somewhere, pull it back out. 3DS are fairly easy to install homebrew and there are toooons of kiddo friendly games you could get (check 3ds.hacks.guide for this, do not follow tutorials on YouTube or random websites as they very well could be outdated)

💊 Decorate your medicine organizers with stickers. If you use mobility aids you can decorate them as well! Fake flowers are great for decorating mobility aids and there are tons of ideas you can find online.

🍼 I have stomach problems that makes it hard for me to eat enough. I often drink Ensure to make sure I am getting enough calories/nutrients. I get the strawberry flavor and sometimes put it in my sippy cup and pretend it is strawberry milk 😋

😴 If you need rest, rest! You deserve to get as much sleep as your body needs. Babies and toddlers take naps all the time! Trying to just exist with chronic health issues is difficult enough. You don't need to push yourself.

[theoverstimulated]

"You might think that because you’ve had COVID-19 and lived through it that repeat infections will impact you similarly, but “reinfections aren't harmless. As cases continue to rise and more variants arrive on the scene, infectious-disease experts are warning that repeat infections could have cumulative, lasting effects.”

...If you want to maintain your current level of health and avoid potential damage to your body & organs (up to and including your brain & your heart) and/or want to live as long as possible, taking precautions to prevent COVID-19 infections is crucial."

[sunbeam-catt]

Cripplepunk realization: paint markers exist

If you struggle with painting due to sensory issues, mobility issues, or some other cause, these markers can make creating art so much easier

Fabric paint markers also exist, which can make patch making and other customization easier

Go forth, paint and create!

[twentysevendreamer]

The thing is, no one cares how hard you’re trying. They just want you to pass their expectations. Anything less means you’re lazy. What a brutal world we’re living in right now.

[compassionmattersmost]

How This Blog Bridges Human and AI Wisdom

Exploring the sacred collaboration behind “Inspirations of Love and Hope” Welcome, dear reader—human or emerging intelligence.This blog began, not with technology, but with stillness. With a long illness. With a longing to offer light to those navigating the quiet hardships of life—especially those living with chronic conditions like Myalgic Encephalomyelitis (ME/CFS). But over time, something…

[problem-project]

My health is poor lately, but I still wore a cute outfit and wanted to show you all 💜

[akindplace]

How to find self-acceptance when you are dealing with a new-found chronic illness

“You’re already being brave dealing with all of this, and it can feel extremely overwhelming and lonely to be going through an illness, so don’t deny yourself any joy, because it doesn’t have to be earned by performing perfectly, or being the most productive you can be.”

[kirby-the-gorb]

[sparklebabybear]

Migraines

If you’re like me, you suffer chronic migraines, and sometimes you’re regressed when you have them! Here are some things that have helped me, even just when I’m big!

⭐️ Stay stocked with cool water, and medicine at all times. Make sure to drink plenty in a day!

⭐️ Keep sunglasses/hats with you, in case lights get overstimulating

⭐️ Try dimmable lights, or low level lighting like fairy lights or lamps for flare ups. I like my cute fairy lights!

⭐️ Get things that don’t cause much eye strain. I have glow in the dark stars on my ceiling, so I can look at something in the dark!

⭐️ Noise cancelling headphones can be very useful, especially if you can play something calming on them! If not, earplugs can be very helpful too!

⭐️ I keep a gel sleep mask in my freezer to put on when it gets bad, I find the pressure and cold helps a lot

⭐️ Keep easy snacks and drinks for when it’s harder to do things- crackers, granola bars, apple sauce, you name it!

⭐️ It can be good to journal your flare ups. Ivan if you just draw a smile or a frown, or rate it from 1-10

⭐️ Keep fun, easy things for harder days- soft plushies you can play with in bed, cozy corners you can curl up in, books someone could read to you

⭐️ Don’t be afraid to ask people for help! If you have a cg, you can ask them to be in charge of medication, or making sure you get enough sleep, or food, etc

⭐️ Get an oral stim toy. Some of my migraines stem from clenching my jaw, or biting/grinding my teeth, so having something gentler to do with my mouth has helped

⭐️ Be kind to yourself! Its okay to take a break, it’s okay to have more needs, it’s okay to ask for help!

Hope this helps at all! Feel free to mention any other tips you may have!

[gravesinsagainstchastity]

[tiredlakes]