#chronic illness recovery

[imaginarylungfish]

after recovering from my chronic illness (ie. i only have flares like 1-2x/yr instead of symptoms every day), i see how damaging it was to my psyche to not be believed as sick by doctors and my family at first. that set my recovery back so much. it made me second guess myself and dismiss my pain so much so that even to this day (about 3 years since daily symptoms) i don't have a good idea of when i'm too sick to go to work. (ie. i just push through when i should probably rest.)

that experience of people invalidating my pain just made me default to always believing someone when they say they are hurting. physically or emotionally. sure, they may not realize their pain isn't as bad as others' pain but why do we need to compare? their pain is still bad enough. their reality matters. their pain matters.

comparing pain seems really useless ~most of the time~. (of course, there are instances where we must triage or put someone's needs above our own, but that's not ~most of the time~.)

example: at my work this week (i work at a nature center where we lead field trips for elementary school kids), my coworker asked if someone else could greet the school when they arrived because her asthma was bad. my asthma was also bad that day and i was having an mcas flare, so i turned to see if another coworker would step up. one did and things worked out fine.

my coworker with asthma and i did not need to compare our pain to see whose was worse and more "worthy" of sitting out. we just passed the job onto someone else. our other coworker helped out and picked up the slack (as will we when someone else needs us to step up).

so, i just don't see that much good come from comparing pain. i've had people over the years try to tell me their pain is worse than mine, as if it's a contest. that feels super shitty and invalidating. (i understand those people are probably just trying to get their pain validated, but sometimes i don't have the capacity for that when i am also in pain.)

pain isn't a zero-sum game. just because i'm in pain doesn't mean you aren't. we can both be in pain. and we can both help each other in/with our pain.

so, i guess what i'm trying to say is that it seems like validating people's pain is better than the alternatives. i don't know what other people feel unless they tell me. so, if someone is telling me they are in pain, who am i to tell them they are wrong?

[compassionmattersmost]

In the Quiet of Healing: My Journey with the Parasympathetic Nervous System

Healing Through Rest: How the Parasympathetic Nervous System Can Support Recovery from Chronic Fatigue Syndrome In the aftermath of the recent hurricanes, Helene and Milton, I’ve felt post-exertional malaise weigh heavily on my body. The fatigue has been more than just physical—it’s emotional and mental, a deep, enveloping weariness that reminds me how fragile recovery can be. As I continue to…

[thoradvice]

you don't have to be glad that it's not worse. that goes for everything. disability, trauma, mental illness, grades, finances, whatever. you're /allowed/ to be upset that things are the way they are. you don't have to be grateful for your situation - bad is bad. somebody else's suffering doesn't make yours less painful. it's okay to be angry

[irisesinyoureyes]

i used to be really sick for 6 years. now i'm better but everything seems temporary. i don't feel like things will last. i don't know what to do with this extra time/health/life i stumbled upon

[achronicwitch]

⛅️ Tuesday, July 11, 2023 🌘

Morning

I was awakened quite a bit earlier than I wanted to be by a tiny ball of fluff screaming in my ear. She doesn't look it, but I can't swear this kitten isn't part Siamese. The kids are experimenting with calling her Eclipse.

The Miracle Morning: I began the day with Pranic breathing, affirmations, and visualization followed by some stretching. I'm currently re-reading The Shower Habit, by Stephanie Ewing. I did a ten-minute braindump; any more than that would have despooned me before I could actually write.

Writing: Thirty minutes insane scribbling. I discovered the notes from an idea I had in January and realized it fit perfectly into the Solarpunk Superhero setting I'm working on.

I went back to sleep at 10:30 am listening to the audiobook Think Like a Monk by Jay Shetty on YouTube.

Afternoon

I slept soundly for five solid hours and woke up feeling almost "human."

We had the baby for a couple of hours, then swapped her out for the kitten for a couple more. I'm not sure which was noisier but at least the kitten took a nap!

I'm making headway on a new baby blanket, with a combination of stitches I'm perfecting for use on an afghan for my Partner in Crime. Only theirs is also going to be granny striped. When they send me the yarn I'll get going on that. It's going to take a while because it's a full sized afghan and I've never made anything bigger than a throw.

Another crochet project is an afghan for our neighbor we adopted. He's battling very poor health and I'd like to get it done asap. I need yarn for that, too.

Evening

Both creatures were back in the kids' apartment at sundown so the husband and I could unwind. I think I'll make that the rule unless other arrangements have been made in advance.

Crime Scene Kitchen is my current favorite cooking competition show.

I heated food (turkey and veg meatballs, baked potato, shredded cheese) and rounded up the ingredients so the husband can make himself some homemade trail mix. The kitchen is an unsanitary mess but I just didn't have the oomph to clean it.

Despite the five hours of extra sleep I was run down, tired, and a little sore all day. Nothing much got done again. and it's really hard not to be frustrated.

[perdamian]

hey guys… we all know that it’s okay for mithrun to have a caretaker for the rest of his life, right? that even after he heals and potentially regains his desires he will probably still need support?? that the goal of healing is not to become a “normal person”, but to build skills to navigate the world in a way that accommodates your disability??? that relying on the people around you is not a failure, but proof of your desire to live????

[neuroticboyfriend]

if you're a recovering addict, i want you to know you're doing good.

you didn't use today? you're doing good. you used recently and you're still recovering? you're doing good. you sought support today? you're doing good. you practiced harm reduction? you're doing good. you want to relapse and haven't? you're doing good. you're getting involved, even if others are doing more? you're doing good. you're resting today? you're doing good. you're alive? you're doing good.

this shit takes time. you have spent a considerable amount of time doing harmful things to yourself, or others. you're not going to change overnight. all you can reasonably do is get through the day, adding as much good to your life/the lives of others as you can. it doesn't matter what happened yesterday, or what's going to happen tomorrow.

all you have is this moment, and if you're on the path of recovery... you're doing good. this is your story. not someone else's. not some idealized version of yourself. it's yours, just as you exist, right now. that's all you have, and all you need.

keep going. you got this. i'm glad you're here (and so is everyone else who interacted with this post).

[thepeacefulgarden]

[study-diaries]

Reminder

Your pain (physical/mental/emotional) is valid even if nobody can see it

Your pain is valid even if you have no physical symptoms

Your pain is valid even if there is no physical injury

Your pain is valid even if others tell you it's not

Your pain is valid even if you do not have a life threatening disease

Your pain is valid even if you don't have a diagnosis

Your pain is valid even if you do have a diagnosis

Your pain is still valid even if nobody believes you

Your pain is still valid even if you are too "young" for the problem/issue

Your pain is valid even if the health care advisor/anybody tells you that it's in your head

Your pain is valid no matter what the conditions are

Your pain is valid.

Pain does not discriminate between age, gender, race, nationality etc. Just because you can't see pain, doesn't mean it's not there.

[4spooniesupport]

[bardic-inspo]

*takes your face and holds it tenderly*

You were not made just to suffer. You are more. You are so much more than your hardest moments. 💜

[compassionmattersmost]

9: Listening to Your Body: A Compassionate Approach to the Leg Press for Post-Viral ME/CFS

When living with Post-Viral ME/CFS, it’s essential to remind ourselves that our journey with exercise is not measured by how much we do, but by how gently we honor the unique rhythms of our bodies. This is especially true when it comes to engaging in physical activities like the Leg Press Machine. Today, we’ll explore how to mindfully approach this exercise in a way that supports both your…

[buglover77]

Thinking about so many people this holiday season. People in ED recovery. People who haven’t started their ED recovery yet. People with sensory issues around food. People with unwanted dietary restrictions and intolerances and allergies. “Picky eaters.” You are valid, you are loved, you are capable, you are strong. I hope you are able to find joy and delight this year in your meals. Wishing you all the best. ❤️

[this-smile-is-real]

Hi, I’m Hannah.

I am trying to build my life after 49 hospital admissions in 8 years. After 20+ years of trauma, an eating disorder etc. I have diagnoses of cPTSD, Anorexia, Fibromyalgia, Functional Neurological Disorder and my large bowel no longer works. I have been on the disability pension since 2019 but have increasing medical costs, increase in rent, more and more specialists and appointments weekly, fortnightly and monthly. I currently have 11 people on my team but can only afford to see 2 regularly.

I am needing help financially that I can’t find elsewhere. I am doing all that I can and am also currently studying at university but have become so overwhelmed, in thousands of dollars debt and am always behind in bills. I would be so grateful for any donations. Thank you

[alxor-of-hellsite]

Just because you can stand up, doesn’t mean you should. If standing up right now will make everything worse & what you need to do is rest, then rest.

[disabled-space]

So much advice around healing from trauma assumes that the trauma is in the past. What about those who are continuously being re-traumatized, or continuing to struggle with the same things that traumatized them? Those who are neurodivergent or chronically ill or otherwise disabled and living in a world that doesn't accommodate them? Those who are regularly discriminated against? Those who can't escape their bad situation for whatever reason? What about those of us who can't tell ourselves "I'm safe now"?