#recovery from chronic illness

[helenwhiteart-blog]

Learning to slow down

Ironic to be writing on this topic given my last post but then not so given I am a person chock-full of dichotomy and because I’ve learned that a healthier way demands that it be a matter of choice to be fast or slow and either is ok, just so long as I am mindful of what I am doing. I’m learning that, in order to thrive, I need to be able to choose when I want to inject some busy-ness,…

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#articles #healthy environment #nature #nervous system recovery #neurodiversity #noise pollution #over-stimulation #pacing #peace and quiet #PTSD #recovery from chronic illness #retreat #slowing down #tension myositis syndrome #TMS #triggers

[daisyprayers]

“I’m so proud of you for going out today! I know it is a hard day as well as a happy one.”

“Thank you. I just hope some day doing happy things won’t be so tiring and painful.”

“Me too, me too. Me too. It was a brave picnic.”

#photos from a day out and a conversation with a friend #it was a brave picnic #i hope i have more brave picnics #recovery #chronic illness #chronic pain #crps #disabled #wheelchair user #cottagecore #naturecore #gardencore #meadowcore #farmcore #grandmacore #forestcore #fairycore #festival #picnic #spring #tulips #dandelion crown #dandelion #wildflowers #flower crown

[joellesolo]

Went to a mom's night out on the first and FINALLY got to rock my hobbit hole skirtall from HU, which I love and got months ago but haven't had a reason to wear (because, you know, when you're sick and bedridden you don't really get to wear fun stuff). And everyone loved it and I felt so cool and it was just super awesome seeing some friends and just relaxing and being out of my house and, yeah. Don't mind the tp and mess at my feet. I was feeling my vibe but not enough to clean up, okay? 😅😂 and no, I did not leave the house in slippers, but I don't wear shoes in the house and I didn't have the energy to go downstairs and put shoes on and then come upstairs to take a picture only to go downstairs again... something my mother gave me shit for 😒

#joelle's life #me #her universe #lord of the rings #hobbit hole #HU #mom's night out #dtmm #chronic illness #chronic pain #chronic fatigue #my hair for the archives #body dysmorphic disorder #recovery #my nails were still black from emo night tour LMFAO #cute #adorable #my face #nerd

[trans-axolotl]

having a lot of thoughts about eating disorders + how some of us end up developing chronic illnesses directly because of the physical effects of our eating disorders and how Cruel doctors can be about that and just trying to untangle so much shame and blame from that experience rn

#personal #vent #eating disorder tw #disability #idk. i don't quite have the words for this right now but #had another meeting with my doctor where they said yeah its your fault that you are now physically disabled for life #(literally i was chronically ill and physically disabled before i even developed an eating disorder because of CAH and comorbidities but #(they love to ignore that !) #which is like. i do not tie any morality to health and it should just be #a completely neutral statement. that my eating disorder caused other physical complications #they said i'm going to have orthostatic problems the rest of my life. #'since your gastroparesis was caused by your eating disorder that means there is no point in treating it' #which is so funny bc literally every time i see her my dietitan wants me to get a feeding tube! lmfao!!!! #i am actually doing pretty well in recovery in terms of meeting my energy needs through food. but i stopped being able to orally supplement #so my dietitan wants a tube for ARFID nutrient reasons. supplemental nutrition etc etc. and she thinks it will help gastroparesis symptoms #they also think i have osteoporosis and want to test me for that #when i had to use forearm crutches/ wheelchair because of physical ed complications doctors were SO fucking rude even though they were #the ones PRESCRIBING IT!!! like!!! you all are the ones telling me i HAVE to do this! #idk i also have a friend with permanent brain damage. from seizures in the refeeding process #and her doctors are so fucking rude to her all the time. #it makes me so mad

[fromthemouthofkings]

.

#i don't know how to say this without people jumping down my throat but like. #as a skinny person who is skinny because of a chronic illness that fucks up my body #and because of anxiety and disordered eating paterns caused by said illness #and who engages with ed recovery and fat-positive posts from that perspective #it's really difficult to constantly hear 'skinny people need to center fat people' 'skinny people need to stop spreading myths about dieting #like fatphobia and diet culture are a systemic problem of our culture not solely the responsibility of individuals of a certain weight #and the weird guilt tripping isn't helpful anyway #idk how to put it but it reminds me of how terfs treat trans men who are also suffering under the same system in a unique way #as inherently wrong/like they need to shut up about their issues even though they have so much in common

[sparky-cryptidcrafts]

Because I've spent my entire life homeless on and off or living in poverty I keep reaching this state of starvation where its been so long since I've had real food that chewing makes my jaw sore and digesting solid foods hurts and causes internal bleeding.

All the food bank has is moldy bread and frozen cheese. Two things I can't eat without more bleeding but I eat anyway because regardless of how happy it would make people to not have to look at me I want to live. I don't care how much it hurts. I don't care how uncomfortable it makes people when they see me walking on the side of the road bc i cant afford gas. I'm going to live.

I'm going to force feed myself whatever I can so I can live long enough to get to a point that I can afford to eat only the foods recommend to me by Dr's. But until then I refuse to starve or be invisible. Everyone deserves to be seen and everyone deserves to eat.

#refeeding syndrome #homeless #recovery #chronically ill #disabled #Unemployed but trying my best #i live out of spite #i refuse to die simply because it would make the karens too comfortable #chronic pain #stories from a homeless kid

[oldfangirl81]

Just got reminded of the time 11yr old me was being wheeled in for a major operation for a bad infection which meant a bunch of painful recovery things. So I tried pulling "It's a miracle. I'm cured. No more pain. Don't need surgery." Nobody bought it. Especially after the slightest touch made me wince.

#chronic illness #a internal stitch got infected during recovery from my first ostomy #leading to a revision three months later #ostomy had to switch sides and old spot had heal from the inside out #not fun or pain free

[andthebeanstalk]

furious that leaving my house to do things in places actually boosts my serotonin enormously this is like finding out all over again that walking really does help my chronic pain - I don't wanna do that shit but I did and now I'm home with these fuckin' unique and beautiful memories that I will treasure forever or some shit i mean i can't believe this this is fucking bullshit

#original #self-care #depression #recovery #ptsd #chronic illness #yeah so anyway i had an incredible evening and i am so glad i went out #literally the serotonin or dopamine or whatever from going out has helped my muscle pain

[clothlog]

After sickness

It's like my blood has turned to sap:

cloying crevices through my back

are sticky sweet, tacked together

where glue stretches between muscle—

congealed cords pull, tendons creak,

muddy fat and fractal blood streaks.

#might delete #i wrote this about a year into my recovery from long covid & what I've subsequently found out was probably a PE #this is me trying to make sense of the chronic pain after the lung burn eased off #tw illness #i do feel better now and you know #therapy

[demigodofhoolemere]

You know you’re chronically ill when you simply put a few pieces of clothing away and suddenly all of your energy is sapped

#@my body i barely did anything you don’t have to do this to me #i was going to shower but now i can’t yet because i have to recover from pairing a few loose garments together and sticking them in a drawer #this should not require recovery time 😵‍💫 #chronic illness

[helenwhiteart-blog]

Two ends of the see-saw: getting to see my ADHD brain in action

I haven’t written very much lately as I’ve been unusually busy. The fact I am writing this today tells you things have paused, at least for a moment. What Ive learned about the wiring of my ADHD brain across this period of time, given my uncharacteristic busyness (compared to recent years of chronic illness and having relatively little to “handle” in the day-to-day) is just starting to come home…

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#ADHD #ADHD link with chronic fatigue #ADHD link with pain #articles #doubting your own ADHD #Highly Sensitive Person #late diagnosed adhd #need for stimulation #neurodivergent social skills #recovery from chronic illness #sensory defensiveness #sensory processing disorder #sensory processing sensitivity #thriving under stress #women with ADHD

[icannotgetoverbirds]

.

#tw medical #re: my health #got a whole new factor getting thrown in there #im like 99% sure i have at least mild muscle atrophy from disuse #just because i haven't been able to move around hardly at all due to being constantly sick #i get winded from standing still for more than a few minutes #so. then comes the dilemma #im more than happy to accept a temporary disability and the recovery process involved #and more than happy to use a mobility aid to help that process #BUT #im worried my mom's gonna be all 'your only limits are yourself' which. no the fuck they aint! this shit'll take time! #and i also worry that she's gonna think im being overdramatic and don't need a mobility aid #or that im just making up excuses to not work which. i want a job! i just dk if i can physically handle it yet! #i just. *sigh* why doesn't she listen when i say i can't do something. why does she think that's the kind thing to do. #anyways. advice is welcome. idk if a diagnosis will help or not. idk if she'll even let me seek a diagnosis. #im tired. im v v tired. #disability #disabled #chronically ill #chronic illness #mobility aid #physically disabled #physical disability #disabilities

[hosticusnatura]

one fun thing that no one tells you about almost dying and having a long and terrible "recovery" time is how everyone ends up resenting you like sorry I was stuck in a hospital bed for the better part of the year lmao

#and like I'm not even fully recovered lmao i have a bunch of new fun chronic illnesses thanks to the permanent damage of the main illness #which means that im like this half crippled thing now a burden on everyone #and i can't even remove myself from this toxic environment because its all the mangled support system o have left #lololololove this #love when recovery means having a worse life than before

[aro-oak]

I only JUST realized that I was so into jmart season 1 fics for so long bc authors would write Jon with the same chronic illness things that I have. And have him be ace. Dear god it is the same pain and the whole time I was in such need of that tenderness

#at the time i didnt realize the extent or the specifics of said chronic illness #i dont even know much now but i certainly know wayyyyy more #and after i moved to a better household where care for chronic illness is highly valued i stopped reading so many tma fics #but my issues are getting worse and i think its time to dive back in #also if anyone had the safehouse one where they decide to run away and gauge out their eyes #and do martins first bc jon can See everything to make sure he does it just right #and then they wait like 2 weeks for recovery time before doing jons #and then it doesnt work and eyes start popping up on the entirety of jons body and he can still See everything except martin since martin #got cut off from the Eye #lmk bc i never got to finish it and its been on my mind for like two years #tma #ask to tag'

[rianhealthncare]

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[hellyeahsickaf]

Abled people don't fucking get it.

You don't get to imply I'm living some kind of "forever vacation". It's perpetual pain. If you see me doing something I enjoy, it's not because it's what I'd rather be doing than being "productive". I fucking miss the gym but things like video games are just a much more accessible activity these days. I'm not "lounging", I don't get a break from the pain just that sometimes I'm able to take my mind off of it

Unemployment isn't some kind of break or excuse to not participate in society (capitalism is garbage but being disabled=/=unemployed for the hell of it). For reasons, I fell behind in school, bad. But I got myself a diploma equivalent and finally felt I'd chosen the line of work I wanted. I had connections, opportunities. I had fibro and some fatigue (unknowingly CFS as that was manageable) but I was getting PT and managing it as best I could. All I needed was to take courses and I was ready for that even with the difficulty of my then undiagnosed ADHD.

And then I got sick, really sick. Worst mono infection my doctor had ever seen due to medical neglect, Shoutout to those shitty CVS minute clinics. It made my ME/CFS so much worse, I was stuck in bed all the time before getting put on Adderall for my then newly diagnosed ADHD. Then I thought the fatigue was finally healing and a side effect of Adderall was a huge crash and wave of fatigue. No it turns out when it wore off I just felt the fatigue again lmfao

I was told I'd be better within 6 months. Okay so I can opt for the Spring semester, no big deal. 8 months go by, a year, a year and a half. I waited and waited. Hoping that "when I get better" I could be caught up with everyone else I knew my age. That was over 7 years ago. Do people think I wanted that all taken from me? To get progressively worse and worse?

Do they think loss of agency is something I enjoy? Needing help, being unable to drive, to enjoy my old hobbies, cook for myself regularly? I've been accused of enjoying this and not wanting to get better as if this hasn't put my head in very dark places. Sometimes I feel like I see a way out of this and it isn't recovery. They don't get it. I don't enjoy being heavily medicated but I know I need to be. I don't enjoy having things purchased for me because I want more financial independence. I don't enjoy feeling like a leech, actually.

It's not a vacation, it's hell. You can go on about how much more exhausted you are because you work or whatever but the thing is I don't need a job to feel what you feel after working. I feel like I worked a 12 hour shift after taking a shower on some days, no exaggeration. You can't compare your able bodied exhaustion to the effects of a chronic illness that fucks you up without you needing to work a full time job. This is my full time job and it wasn't the one I was hoping for exactly

#chronic pain #disability #chronic illness #fibromyalgia #cfs #chronic fаtiguе ѕуndrоmе #actually disabled #spoonie #me/cfs #cfs/me #long covid