#chronic illness blogging

[clonerightsagenda]

"if I die will you write really mean Google reviews of all my doctors" and other chronic illness conversations to have with your family

[glowstick-knees]

Me: I’m probably just being dramatic with my swallowing issues. I do have anxiety, it’s probably just that. I know I’ve been diagnosed with dysphasia but it’s probably nothing

Also me: finally gets a barium swallow after 2 years of issues and it showed that I have acid reflux, a narrowed esophagus, and a vertebrae pressing into my esophagus.

[thegriefbutton]

Soooo... Everyone meet Pickle 😍 he's 3 days old and we're definitely not out of the woods, but we're doing quite well so far!

I'm exhausted from a long day, so just enjoy the kitten and we'll see what tomorrow brings!

...I'm not sure I'm ready for getting up every 3 hours to feed him 🤣

[woodfrogs]

the most fucked up thing about my problems disorder is that i can never have ibuprofen again

[enragedtiefling]

I just watched this video by Footless Jo, and wanted to share it because it was incredibly relatable to me.

I wake up exhausted and in pain every day. I have for over half my life, and most likely always will. Through medication, my fibromyalgia and mental health symptoms are controlled, in the sense that I no longer sleep half the day and am able to work full time, but they are not nonexistent. The pain is now a dull roar instead of a constant screaming in my ear.

If you are in pain, if you are suffering, if something is impacting your quality of life: I believe you. Someone will believe you. You are not alone.

And if you are a healthy, abled person, I would ask that next time someone tells you something is wrong, that you believe them, and extend them kindness and compassion. We are all the experts in our own bodies and our own lived experiences.

[regallibellbright]

Fasting bloodwork is always a joy and I am so grateful I rarely have to do it because MOTHERFUCKER is it unpleasant to drink as much water as I need for anyone to find my veins on an empty stomach.

[callings]

My cnp suggested that I maybe I have fibromyalgia, I'm not sure if my pain and fatigue fits that but there's research showing 30% or more of hashimotos patients develop it so it's not completely out of left field

[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.

[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.

[clonerightsagenda]

I'm so resigned to my endless medical bullshit that I forget how it sounds to other people. I told someone today that I was going to have a double jaw joint replacement and she gasped out loud and clapped her hands to her mouth in horror for a good 30 seconds.

[glowstick-knees]

Dude I hate drowsiness. I laid down for 2 seconds and then I woke up and it’s been 2 hours. What the hell I had shit to do 😭

[thegriefbutton]

I want to set myself a challenge. I want to use this page for what it was meant for: blogging my experience with CFS/ME and grief.

It will probably be nonsense. I'll probably procrastinate. I may just update with 'hi, today sucks' 🤣 I just want to try.

So, it's been an okay day today! The heat has been killer for me (28 degrees) but I cooked some food on the barbeque and had a relatively pleasant today.

Physically it's not been too bad. A bit of a headache, with some brain fog, and some pain in my back, but I can't complain.

I have been waiting for 10 days for a call from the doctor to talk about further pain medication - they said they'd call today despite me asking for contact sooner. Did it happen? No. Looks like I'll be contacting them Monday!

Anyway, this is my challenge: 30 days of posts. My initial thoughts for the page was to blog my grief and experience with chronic fatigue syndrome in an effort to help myself by not bottling up my emotions. Wish me luck!

[woodfrogs]

i stg if the hospital fucked up my last names spelling when referring me to a specialist and then my gp also referred me which means that im registered to see 2 different hematologists because the system didnt recognize me as the same person im gonna kill

[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.

[sweetteafrances]

My new years resolution is to ignore the porn spam bots. They were kind of freaking me out when they first appaared then they were pissing me off. But that is way more of my time and emotions than they deserve. So I'm going to ignore them and at the end of the year we can see how many more "followers" I have.

[regallibellbright]

Whatever the hell kind of dysautonomia this is, I’d like to have Words with it.

Words like “Yes, I KNOW you’re light-sensitive, too bad, we need UV for sanity more than we need to not upset you.”

And also, “what the hell is wrong with you.”

Sigh. I know I need to make a call to get on the wait list for the fancy POTS clinic but uuuugh, making a call to get on a like two-year waitlist.