#chronic illness community

[chronicsymptomsyndrome]

I know its kind of silly to say “don’t feel bad for canceling because of pain, fatigue, etc” because I know guilt is a reflex you can’t easily refrain from. But you can reason with yourself so instead I’ll say this:

Nobody can feel what you’re feeling but you. Nobody knows the severity of what you would be putting yourself through if you were to “tough it out.”

If you do “tough it out,” the purpose for you doing the thing will most likely not be fulfilled anyway. You probably will not be mentally present or engaged. You probably will not have a good time or get much out of it. Etc.

If people really have such a problem with it, thats a huge red flag. Being transparent about your needs and boundaries is a great way to weed people like that out of your life.

If you have any kind of chronic illness or disability, remember that you probably have a very warped judgement of what is “reasonable” to endure in terms of pain, fatigue, burnout, etc.

You didn’t ask for this, you don’t deserve this, there is no reason you should have to bear the weight of it alone. I bet if someone else was in your position, you wouldn’t mind helping accommodate for them?

Low energy days are truly sacred, take them seriously. Please respect your body’s signals. “If you do not choose times to rest, your body will choose for you” or however the saying goes

It is so much pressure to have to deliberate what sacrifices are necessary for proper self care. Give yourself extra credit for having to deal with that stress on top of whatever is putting you in that position in the first place. Thats a lot at once

You are leading by example and showing others that you would never expect them to hurt or overextend themselves for your benefit. Putting yourself first always inspires other to do the same.

Please be proud of yourself for even considering canceling and putting your needs first. That is so strong of you <3

[ontheoutside-lookingin]

Some chronic pain memes for extra hurty times

[matchakuracat]

Being asked to rate your pain on a scale as someone who has had chronic pain for several years is so difficult. Like how am I supposed to rate the pain I am experiencing from 1-10 when I have no idea what it feels like to not be in pain. Like what is 0? what is 1?? what is even 10???? What am I comparing it to???? My 5 can be someone else's 10 and their 10 can be someone else's 2, and how is a doctor or anyone else for that matter supposed to tell the difference? Maybe it's because I'm autistic and I'm just overthinking it but it literally makes no sense to me.

[calmmyfears]

hi, if you are struggling with not knowing who to be or what to do with your life this year just like me. i want you to know that it'll be alright, we will figure it out along the way. breathe deep and take my hand, we are going places you've never imagined. the world is waiting for us and we will get there in our own time, slow but steady. one foot in front of the other with kindness and patience in our hearts. we're not lost, we're on our way. 🤍

[mandana-the-service-pup]

Sometimes when my low blood pressure or low heart rate is flaring up I get this overwhelming urge to go on a ridiculous adventure.

Like I’m barely able to walk and yet it sounds like the most wonderful thing in the world to cook a feast from scratch, drive an hour to the aquarium or volunteer at an animal shelter for a day. Of course I’m not able to do any of this but it’s tricked me in the past and I’ve ended up in some sticky situations. Now I’m able to recognize when it happens by writing it out or texting Hubbins about it bc it really does sound absurd given my current state. Now when I get the sudden urge to do something that is a lot more intensive than my regular activities I immediately “hit the breaks” and evaluate why I feel that way (and it’s never bc I’m actually feeling better). I think my brain is just desperate for a dopamine hit when it’s not getting enough blood flow.

[sarcodyne]

I hate getting new symptoms or problems of my chronic illnesses.

Well I mean yea but like specifically other than feeling awful and stuff

I hate not knowing what the issue is or why it’s happening because then I don’t know what to search to find lil people in my phone reciprocating my agony!

[semiverbalmuppet]

[totally-sick-blogger]

Rating random fidget/stim toys out of 10

- tangles 5/10 - they’re fun but when they come apart I can never get them back together

- wacky tracks 10/10 - everything I love about tangles but without the things I hate

- large pop-its 7/10 - it depends on the shape tbh

- small pop-its 8.5/10 - they’re not my preferred fidget toy but I still really like them!! Especially the ones that only have 1 or 2 bubbles on them

- mochi animal thingies 7/10 - they’re very fun to play with and very easy to travel with but they make your hands smell weird and I don’t enjoy that.

- plastic rainbow wiggly slugs 8/10 - they’re kinda big which makes them harder to travel with but otherwise I have no notes.

- foam stress balls 5.5/10 - they’re always either fantastic or hard as a rock with no in between

- filled stress balls 2/10 - I have a love/hate relationship with these because they’re so fun to play with but they nearly always end up exploding.

- literally anything made out of that sticky rubber material 0/10 - I have no explanation I just hate these

- floam 10/10 - I am the number one floam fan

- play dough 7.5/10 - I like playing with it but I wish it didn’t smell as strong

- kinetic sand 5.5/10 - I have love/hate relationship with it and I can’t explain why

- bubble rap 7.5/10 - the og stim toy. But also it’s so loud and I don’t love that.

This was not nearly as helpful or well thought out as my usual posts but I hope you were at least entertained by it <3

Let me know your favourite stim toys in the comments !!!

[hannahcrazyhawk]

Please share & donate if you can to my friend Ty. We went to high school together. I’ve also come to know Ty’s family through the kindness & compassion they’ve shown me in difficult times. ❤️‍🩹

[chronicsymptomsyndrome]

“Winners don’t hit snooze” drop dead actually. Fucking die.

Winners don’t go around assuming everyone is just as privileged and healthy and well rested as them

Winners don’t shame others for whatever accommodations they might need to maintain a decent quality of life

Winners don’t act like pretentious ableist assholes in fact I’m pretty sure winners are perceptive open-minded kind and understanding. Idk

[ontheoutside-lookingin]

so many disability pride posts on my dash first few days of July :) Where did they all go :(

[matchakuracat]

has anyone else ever had an xray to see if you have arthritis or anything similar on your hands/feet or anywhere else on your body? i just got one today and i'm really nervous to get the results back (i don't have any idea of how long the wait will be either which certainly doesn't make it better).

i've had chronic joint pain for years which has gotten gradually worse over time, but recently i got these hard bony lumps on my finger joints which made me face my anxiety and go see a doctor for the first time in a while. he did look at my joints but not nearly as throughoutly enough because somehow he didn't even notice anything out of the ordinary, which is very strange since every single other person i've showed has clearly noticed it. some even thought it was broken, but everyone noticed there was something obviously wrong.

even though the doctor strangely didn't see anything wrong, he thankfully still sent a referral to get an xray done but he said that he didn't think they were going to find anything. so that's kind of what made me start to get so anxious about it in the first place (apart from me just being a very anxious person in general).

it would be nice if there was something that could help soothe my anxiety about it a bit but mostly im just curious to see if anyone else has had a similar experience and if so, how it went for you. so if you did and see this, i'd love to hear about it :)

[mandana-the-service-pup]

Denying a patient the right to a diagnosis just bc the disorder you suspect they have doesn’t have a cure is ableist and abuse of power.

Patients have the right to know what is going on with their body. If you aren’t prepared to help them, there is an entire community who can provide them with the knowledge & skills you lack (symptom management, clinical trials, latest research, emotional support, list of specialists and treatment options, etc).

The least you can do is give them the diagnosis.

[patchyourbrokenwings]

Just because you've gotten really good at ignoring the pain doesn't mean the pain has gone away. I know how much it hurts, but please allow yourself to feel (in a way that isn't harmful!). Your body sends you signals and it is important to remain aware of what these can mean. Even if your body has been sick for a long time, if something doesn't feel right it usually is.

[calmmyfears]

new year, still chronically ill 😴