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Lew_Bear

Updated 10mo ago

Living with Chronic Illness: Seeking Support and Joy

Hi! I’m looking for people who understand how chronic illness affects every aspect of your life. I’m not entirely sure how this works so I’ll start with a question - what do you do every day that brings you joy?

Can you help? connect today

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nurospice

2y

Hi! I've found that movement helps with the chronic pain - short walks, frequent stretching, etc. As far as joy, a walk in the woods, watching wildlife, finding moss... basically I'm a nyph.
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wise

2y

as soon as my partner leaves for work I take ALL the pillows. I have an elite setup of Minecraft on his gaming laptop, 13 pillows, a weighted blanket, a fan blowing on my face, and a hoodie protecting my arms from the cool air of the fan because my brain is perpetually bad at sensory input
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ScientistInPain

2y

I have found that low impact exercise helps some of pain and definitely helps my mood. It can be challenging with pain and fatigue but it's definitely rewarding!
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misunderstood

2y

So it's kind of weird for me but please tell me I'm not the only one but weather seems to have a huge effect on my mood and pain. For instance if it's sunny I feel way better than I would if it was raining. What brings me joy is those sunny days because I feel slightly better.
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Lifesaver350

2y

oh hell yeah !! Any moisture & stress .... triggers Fibro, Osteoarthritis & RA..... Today is a very bad day. When I was first diagnosed with the fibro, Doc had me on all kinds of meds... before you knew it, "BAM" wrlcome opiate addiction. I beat it & now the only thing I take for pain in non narcotic.. I smoke pot, take RA meds, synthroid & Tylenol. Some days just really suck no matter what. I try to keep busy until I just physically can't. I'm here if ya need support
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AwesomeRed

2y

I feel better in summer and it actually helps to sit in the sun it eases my pain. My dr said it's because of the vitamin d from the sun. Cold days and rainy days I hurt so bad and have has to sometimes get pain shots because of the pain I get in winter.
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Lew_Bear

2y

you’re definitely not alone in that! My pain and brain fog are significantly worse when it rains
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LSneiderwine

2y

My body definitely knows when the weather is bad. Yoga helps me a lot. Nature walks are wonderful as long as the weather cooperates. I also find that crocheting is therapeutic. Keeping busy usually distracts from the pain. I have a lot of trouble sleeping; partly because without the distractions all I feel is pain.
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Lew_Bear

2y

I’ve been avoiding sleep lately because I can’t stand laying awake in pain! Lately I’ve been playing animal crossing into the wee hours of the morning to distract from it. I’m sorry you have to deal with that too!
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CatEyess

2y

I sing in my car on my way to work every day, then small things throughout the day. I like to write, doodle, and do something creative ✨️ otherwise I zone out & feel weak & lifeless
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Lew_Bear

2y

singing is one of the best pain relievers!
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MagickalRebel

2y

Before I work I always cuddle my dogs. It just brings me so much happiness for them to seek my attention. I pull out my workout mat do some stretches and cuddle with my dogs.
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Joycelynn777

2y

I read, talk to my mom and sister. I go to pray and listen to music. Oh also I have a guinea pig that brings me immense joy. She's so cute!
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SadMom95

2y

Hi! I've found that staying busy, hobbies, exersizes, etc, makes it feel better in the moment but afterwards I always regret so then it's an endless cycle of getting stuff done and then not finding the motivation because I know I will be in pain. I take anti inflammatory supplements and that does help a little bit as well as multivitamin
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Lew_Bear

2y

I know that horrible cycle all too well.. I’m sorry you get stuck in it too 😥
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Bluemoonlove626

2y

Listening to guided meditations and beginners yoga in the morning helps get me going
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krissymonkey

2y

I listen to music to help me relax into sleep. The nights my husband asks for silence, I lay awake until he has been snoring soundly for 15 minutes, then I turn on the music. I can't relax without the music.
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Lew_Bear

2y

I’ve been trying something similar with audiobooks! It helps so much to not have to lay awake in pain and silence
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Sonder0723

2y

Honestly I stay in bed as long as I possibly can every day. Everyone talks about how bad it is for your physical and mental health but I love it and I don’t care. I still do things in bed, like writing or watching videos etc. but I stay in bed because that’s where I’m most comfortable. Of course I get activity/exercise wherever I can but I refuse to feel bad about laying in my bed lol
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Lew_Bear

2y

if it brings you joy and helps you get through the days, there’s absolutely nothing wrong with that! I do that a lot of days too - I love watching movies, playing video games, reading, and singing in bed. It’s also a good way to rest and conserve the little energy I have
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CoffeeAndDogs

2y

I enjoy gardening, cooking, and spending time with my dog.
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Osnapitzkat

2y

My dog (who is currently in training to be my service dog) brings me joy. A lot of other things that bring me joy are increasing becoming harder to do even for short amounts of time but when I’m feeling well enough I attach my dog to my wheelchair and o roll around the neighborhood with him.
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HeyReese

2y

I have insomnia at night, because that’s usually how long it takes for my pain to subside or I notice I am fearful about how bad the pain is going to be the next day. So I found a few good TV shows (I noticed humorous ones help best) & watch those at night. During the day, I will snuggle with my big pup with all the pillows and try to make sure I eat or get up every so often (even if I don’t want to). I also like “riding” my walker around the house— I use my feet to scoot me & it reminds me of being a kid in a rolly chair. I used to journal, but my hands are getting worse, which makes writing hard. I also plan out my day and open all the blinds for the cat as soon as I get out of bed. I basically save all of my energy on the weekdays to spend with my kids after school. The weekends I go to a more traditional sleep schedule so I can spend time with them. I used to fight it, but I take ibuprofen a lot now
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Beeble

2y

I talk to my partner about my day every day and they remind me to take my meds and that always brings me joy
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HJA

2y

I have finally gotten the courage to start running again. It hurts to start and the fatigue really makes it difficult to get motivated, but I feel great a few miles in.
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Cinnawut

2y

Dude coloring is the best. I’m talking ten markers, and easy coloring books. Idk I don’t have the gusto for those adult coloring books, but the kiddy ones! Oh yeah sign me up, I can color a mf’n butterfly or a race car bb!!!’
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VJay

2y

I lay in bed and cuddle my kitties. Read, listen to podcasts or binge watch something. Lately finding joy is difficult. Moving at all is difficult. But not moving hurts too. I feel like an old crippled Granny... Im only 33.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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