#chronic illness support | Explore Tumblr Posts and Blogs

sparkles-and-trash · 11 months

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Sometimes it feels like people kinda forget your pain when it’s chronic.

When someone healthy/able bodied gets sick or injured, people will pour out their support and understanding right away, which is good, obviously.

But after a while, people get tired of hearing about it.

They get tired of having to work around it, tired of having to be understanding.

But just because your empathy fades, doesn’t mean our pain and grief does.

I’m so, so tired of my pain. Of having to be understood. Of not having any chance to have a proper career, or dreams, or relationship.

I’m tired of my hands not working enough for me to write, draw and craft, which is what is normally keeping me going.

They just keep getting worse.

I’m tired of the pains related to my endometriosis and pcos making me unable to eat properly, get any exercise, and for making me bedridden more and more these days.

I’m tired of having to beg for support in what little buisniess I manage to make sure I survive during my rough recovery periods after surgeries and bad flare up’s.

I’m tired of knowing my life will not be a long one.

I’m tired of complaining, of being in pain, of grieving, of feeling like a burden.

There are no breaks for me.

That doesn’t mean I get used to it. I will never be used to it.

And I think I should be allowed to talk about all of this without feeling like a burden.

I probably won’t ever get to that point, but this is me trying to get there.

By being open and honest, and hoping that at least one person takes the time to read.

If you’re still here, still reading, thank you. It means the world.

Be kind to those around you who are like me.

We’re not happy about our situations, either, but having people willing to stick around and listen makes it a little easier to survive.

Thank you ❤️‍🩹

#chronic illness #chronic illness awareness #chronic illness psa #chronic illness support #disabilties #disability #lupus #lupusawareness #living with lupus #endometriosis #pcos #cfs #scoliosis #chronic migraine #chronic mental illness #mentalheathawareness #irl tag #personal

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neonarboretumart · 7 months

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Nobody gonna see this post but I’m at my wit’s end- THERE ARE NOT ENOUGH WORDS FOR SYMPTOMS THAT AREN’T PAIN.

For years now, but far worse in the last two or three, I’ve been getting a sensation in my spine, legs and left side predominantly that is worse and more frustrating and disruptive than any pain I’ve had bar severe migraines. It stops me sleeping, causes sensory meltdowns and is just pure hell. When I have it it’s hard to think of anything else. But I can’t adequately describe it.

The closest I’ve got is it’s sort of like how you feel when you need to pee or sneeze or when I have a twitch or spasm coming, but intensified by a thousand and in different parts of my body. Nothing relieves it. It’s like my nerves are burning, but, again, it’s not pain at all. Other than being in flare (MECFS, POTS, Behcets, widespread chronic pain disorder) there’s no definitive trigger. I get a similar sensation when I have a spasm/twitching flare but it’s rarely as intense as when it’s on its own.

And I can’t look it up. I can’t ask my doctors about it. I cant describe to my mum exactly why I’m so upset and frustrated because I don’t have any words for it.

It does concern me because of how it almost exclusively affects my left side and my spine, or at least to any great extent. If anyone else gets this please please let me know I’m not just going batty or something.

#chronic illness #chronic illness symptoms #chronic illness support #mystery symptoms #mecfs #severe mecfs #pots #nerve shit #like #is it to do with the whole buggered up brain thing?

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hell-is-a-teenage-girll · 2 years

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Chronic illness bunny

#chronic illness plushie #chronic illness support #chronically ill #ouchie plush #chronic illness bunny #mileyinthemirror #present from my baby

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randomruthness · 11 months

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Chronic Illness Support

I love you, the person who wants to learn how to be there for the invisible disabled in their lives. I love you, the people ranting at the apathy as they wonder whether or not to hope. I love you, folks who recognize when you don't have your health, you s

In my efforts to regain a baseline with MECFS, I’ve witnessed the ongoing carnage visited on the newcomers. Long Covid sufferers remain flummoxed by the landscape of medical neglect. Three decades into it myself, I’ve found it challenging to witness their outrage. I sporadically visit Twitter now for that very reason. I’m at once upset for their plight and gobsmacked by the shock they’re already…

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#Caretakers #Chronic Illness #Chronic Illness Support #Invisible Disability #Life #Long Covid #Love #MECFS #Medical Neglect #Radical Grace #Relationship

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neuroticboyfriend · 1 year

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it's never too late to start brushing your teeth again. i basically never brushed my teeth for a whole 10 years. a decade. A DECADE. i still struggle to brush my teeth once a week, but it all started with brushing my teeth once every few months. so i mean it when i say brushing your teeth once a week, a month, a year, or even a decade, is better than nothing.

and still, nothing is not shameful. it is not immoral to struggle with self care. and it is also not pointless to keep trying. anything you can do, even if its wiping plaque off with a towel, is enough. it is good to take care of yourself however you can, even if it's just trying to muster the will to. reading this post is good, too.

i believe in you and i am proud of you, even in the smallest of steps. it's okay. you can give yourself grace.

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gr8asholio · 9 months

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I promised to write every day and I immediately broke that promise. Not off to a great start. It's been a long day today. Started off arguing with my boyfriend over dumb stuff. We both have a lot on our shoulders right now and it just gets to us sometimes. We apologized pretty quickly, but it still takes a lot out of us both for different reasons.

I went to my appointment and met my new oncologist. My first impression is that I like him. He seems more open than my last one. More interested in getting my take on things. More personable too. I'm trusting him with my life so it makes me more comfortable when it's obvious he cares about me as a person.

One thing I'm still trying to keep in mind and learn to deal with is how this affects the people around me. I'm not the only one stressed out and afraid. I think my boyfriend is really going through it right now. He's the only one working. He feels he has to take care of me. That's a lot to put on someone. As afraid and overwhelmed as I am, I definitely need to take the time to be supportive of him as well.

#cancer #cancersupport #cancerculture #cancersucks #stage 4 cancer #lifeatstage4 #chronic illness #chronically ill #chronic illness support

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supernovasolace · 10 months

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Gratitude Journal Day 4:

Today I am grateful for technology and its ability to make our lives easier. I've been trying out a new app called Welltory for a couple days, and it's been really helpful. I'm using it to give me insights about my stress and energy levels. I'm not always the best about being in tune with my body and what it needs for the day, so it's been a really great tool to help me make pacing decisions. I really like the UI and it's giving me lots of ideas for systems I'd like to implement to help me achieve more balance and healthy choices!

#gratitude journal #technology #welltory #chronic illness support #resources

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study-diaries · 22 days

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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.

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starfishinthedistance · 1 year

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Friendly reminder that if you support reproductive rights and bodily autonomy but say that disabled people shouldn't have children because they'll pass down their genes which is "cruel" or "abusive", you do not support reproductive rights and bodily autonomy. Reproductive rights do not only concern abortion for cis white abled women.

#in a world where people are not ableist and people can get accomodations disability is not pure suffering #so if you want disabled children to have good lives advocate for disabled people #do not support eug*nics #disabled problems #disabled #actually disabled #disability rights #disability #ableism #mental illness #neurodivergent #physical disability #chronically ill #chronic illness #neurological disorder #reproductive autonomy #reproductive rights #feminism

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800-dick-pics · 2 months

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Help Us Take my Service Dog in Training to the Vet!

I am remaking a post for my service dog in training since the last one has stalled. He is growing like a weed! so we need to replace some of his gear already, get him into puppy classes and most important take him to the vet. We have enough for the vet but not enough to get there and back. The cost of an Uber Pet is almost as expensive as the vet visit ($75) so that expense is the most important for right now.

The goal is at $530!

CA: $sleepyhen

VN: wildwotko

Dm 4 P@ypal

#chronically ill #black history month #ehlers danlos syndrome #service dog #disability justice #remaking bc the last post got a lot of traction but not a lot of support #i love my baby boy look at how big he is getting!#he is big but he is only 13 weeks old!

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sparkles-and-trash · 2 years

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a friendly little autumn survival guide ~

I am in no way any type of health professional, I am however a chronically ill person who have survived all the autumns that have yet come my way, I even quite love them! But there is no denying this time of the year can be tough on those of us who already have a little extra to handle, so I figured I might as well share those little things I do to keep my head above water this season!

one. Starting your day ~

I know this advice is old as time itself, but it's not for no reason! How your day starts largely affects the rest of your day, so it's important to do what you can to make it enjoyable.

Personally I like to eat breakfast (I usually have pancake batter in the fridge that I make every three days, but anything from bread to cereal is great, as long as there is some nutrition. I like to have it with a cup of tea and watch a light and fun show, like Bob's Burgers or New Girl, whatever I'm currently watching!

Even if you don't have time for this type of morning, there are tons of little things you can do to get your mood up, like listening to music out loud while getting ready, plan outfits you're excited to wear the night before, or read a few pages of a book you're currently into!

two. Traditions

Autumn might not be the time you think of first when you hear traditions, but that's why it's important to make your own!

Small things like having designated fall movies (mine are LOL and Knives Out!), tea and snacks you only enjoy during these months, and even music you that resonates with the season!

three. Routine

Another old and overused advice, but I think people often make too much out of it!

It doesn't have to mean having your entire day planned out, but having a few things you do every day, at the same time, preferably something you enjoy, can do true wonders!

four. Games and TV

A force not to be underestimated.

Make yourself a list with shows and movies that bring out comfort, joy and nostalgia, and have them ready to be put on whenever you feel like you can really use it!

The same can be said for video games, story based ones can be great fora sense of accomplishment, chill ones are great to get time to roll on while just turning your brain off, or online multiplayer ones can do wonders if you're feeling isolated!

five. Use the outside

Nature in fall is amazing.

Going for walks is amazing, at all times of day, but if that's something you can't do, for any reason (all are valid), there are many other ways to enjoy nature and the outside.

Sitting outside, just for a few minutes can do wonders, like on your balcony or porch, or even sitting by the window, preferably with it open for a while so you truly get that fresh air on your face.

Trust me, it makes a real difference!

six. Journaling

This really changed things up for me.

Just putting some of my thoughts down on a page, writing by hand, and having something to look back on when things get chaotic.

I write down everything from how my day's been and why, to just little lists and memos, and it's amazing fo my adhd, and for my sense of time and productivity.

seven. Video Dairies

This is kinda weird, but hear me out!

Filming little clips trough the day, just a few seconds each, when you do something you enjoy, see something pretty, or do something that makes you feel accomplished in any way, and then put them together at the end of the day.

They don't have to look pretty, but they carry a big comfort for me, they help me keep track of my days when all of them seem to blend into one big blur, and they help me appreciate some of the mundane, but beautiful things in my life.

eight. Activities you've missed

Autumn is a time where we tend to spend a lot of time inside.

This can feel like a bummer to a lot of people, but there is silver linings. Picking up old hobbies and interests can be very rewarding, and can connect you to old feelings, goals and enjoyment!

If you need a refresher, there's tons of good, and free classes available online, especially on youtube!

nine. Keep in touch

Fall can be isolating, and for some of us, just going outside or talking to co-workers or other students isn't really an option.

Online communities can be wonderful for this, there are fandoms and communities for anyone and anything these days.

Connecting with people you already know is also important, and there are loads of ways to do that. Sometimes you have to take the initiative, sure, and that can feel draining, but if you're in a different position than your friends, they might be busier in their day-to-day life than they realize, and as long as these are friends that gets excited to hear from you and often say yes, taking initiative doesn't have to be a bad thing!

ten. Ending your day

Similar to the first point, how you're ending your day is more important than you think.

Winding down and letting yourself relax before bed is so important, as is sleeping in a healthy environment. Fresh air, sheets that get changed regularly, a dark room, and no loud videos or bright phone screens right before you close your eyes are great tips.

I also find a little skincare, some body lotion, and a good brushing of my hair helps me wind down and sleep better, but that's a personal thing, mostly!

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Like I said, I am no professional, and these tips are not for everyone. I just wanted to share some of the things that works for me, in hope that maybe one of them could make one person feel a little better!

Reblogs are okay <3

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neonarboretumart · 7 months

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Fourth day of suspected slipping rib syndrome and I think I’m losing it, guys. Anyone got any advice bc I’m currently propped up in a sitting position with my arms lifted (terrible for my POTS and fatigue) bc it’s the only position that kinda helps it click less. I feel sick every time I feel it shifting, it hurts like holy hell in the wrong position, and I’m constantly screamingly aware of it and I’m so close to sensory overload. Ice doesnt help, heat helps but I overheat too easily and I have tonnes of sensitive stretch marks. No more pain meds than I’m already on available. I’m sleeping maybe three or four hours a night (when I basically knock out from fatigue).

Plz help I’m losing it I’m so knackered

#chronic disability #chronic illness #disability #hypermobility #slipped rib syndrome #chronic illness support #plz #mabs mumbles

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crazycatsiren · 1 year

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There are disabled people who can't brush their teeth, wash their faces, brush their hair everyday. Who can't shower often. Who don't always have clean clothes to wear because they can't keep up with laundry. They deserve respect and support.

#disabled #spoonie #cripple punk #disability support #disabled community #chronic illness warrior

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4spooniesupport · 8 months

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A real, unbutchered pain scale.

Based on this, my base level of pain is a 7. Sounds pretty accurate

#chronic pain #spoonie #chronically ill #chronic illness #disability #disabled life #mental illness #invisible disability #disabled community #mental heath support #chronic disease #spoonie support #no spoons #spoon theory

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neuroticboyfriend · 2 months

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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).

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alex2xander · 2 months

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Shout out to all the tumblr users dealing with daily fatigue and severe depression.

Respect to those who have medium and high support needs who need assistance with bodily functions.

Love to those who cannot safely leave their bedrooms or home due to the pandemic and lack of societal support.

Care to those who spend the majority of their life online because this is the only way they can socialize with the outside world

There are so many of us trying to make it day to day. I love you and you're not alone in this.

I love you people who have to be carried, lifted, or escorted in mobility aids to do daily living tasks

I love you people who depend entirely on your cariers and personal aids for every function

I love you people who haven't been able to shower in over a week and therefore have tangled or matted hair and body odour

I love you people who have been wearing the same clothes for over a week

I love you people who dont have the energy to get out of bed to use the bathroom and need to use diapers or a bed pan

I love you people who havent been able to cook their own meal in months

I love you people who have piles of dirty clothes and trash scattered around their room

I love you people who uncontrollably drool on yourself and your property

I love you people who have slowly lost mobility and function over time and are adjusting to their new life

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