#regional pain syndrome

[chronicallymistreated]

I find that it's so unnecessarily hard to explain that chronic illnesses and pain are... chronic. People seem to not understand the chronic part. Whilst I understand that some people recover, a lot of us never will and people seem unable to grasp that...

[cherryblossomforest]

[lady-of-the-lyre]

Oof me rn

[wishful-seeker]

One of the very worst parts of having a rare disease is telling people, including nurses and doctors, what disease you have and their response is "what's that?"

Not only do you never see people with the same disease as you, so you are completely alone and have no one to compare to, but you also have to explain and teach people, including professionals, how horrible and serious your disease is.

Because they don't know what it is, they don't understand how fucking bad it is, so you get no sympathy because they don't know what they're looking at. With notable diseases, people hear it and they instantly think "fuck. Thats bad." But with a rare disease no one thinks that until you explain it and its fucking exhausting.

There is no information about your rare illness anywhere, barely any studies or articles. You know no one else with the disease so you have no idea if you are doing good or bad with it, you have no idea what your future looks like with it because again, you know no one else with it and there is no research.

I don't know whats going to happen to me. 𝘐 𝘥𝘰𝘯'𝘵 𝘬𝘯𝘰𝘸 𝘸𝘩𝘢𝘵𝘴 𝘨𝘰𝘪𝘯𝘨 𝘵𝘰 𝘩𝘢𝘱𝘱𝘦𝘯 𝘵𝘰 𝘮𝘦. I know this is really fucking bad. No one else knows how bad it is. I have to teach doctors how to treat me. I am completely alone in this. There are barely any success stories because doctors aren't educated on how to treat it. This is what its like to have a rare illness.

[badxwolf]

“None of us know for sure what’s out there. That’s why we keep looking. Keep the faith. Travel hopefully. The universe will surprise you constantly.” - The Doctor

I don’t talk about it very often on this blog but I have a rare neuropathic condition called Complex Regional Pain Syndrome. It causes me constant, debilitating full-body pain along with a host of other symptoms that affect every aspect of my life.

I got sick when I was 9 years old. I am 25 now and over the years my condition has deteriorated. I’ve developed several comorbidities which in combination have become life threatening.

In 2021 I was admitted to hospice. I was only able to make it through with the support of my friends who found new treatment options and set up a fundraiser for me. I’m beginning another round of treatment soon and with your help I will be able to afford the care I need during this lengthy recovery process.

These last few years have been the hardest of my life, but also the most hopeful. This disease has taken so much from me but I refuse to give up. I know I have a future, I just need help getting there.

You can learn more about my story here:

TV Interview // Radio Interview

You can help by donating, reblogging this post and sharing my fundraiser. Every bit helps!!!

🌟 LINK TO MY FUNDRAISER! 🌟

[takemeawayintothatgoodnight]

Nothing like being disabled and bedridden on your birthday to learn that your friends dont actually give a shit

[benji-screem]

I got forearm crutches and went on a walk for the first time in like 3 years!!!! I feel so free and I am so happy, I was able to go outside and breathe!

[crps-chronicpain-ptsd]

Chronic pain problems •

[lalalychee]

did you know that i have a patreon you can subscribe to for as little as $2 a month?

⭐️ patreon.com/lalalychee ⭐️

you'll get to see work-in-progresses of all of my paintings that are posted nowhere else (such as the painting wip in this post), and you can ask for in-depth art advice to your heart's content ❤️ i also post makeup tutorials, vlogs, and anything else you feel inclined to request!

i am physically disabled with a very severe and rare disease called CRPS (aptly nicknamed the suicide disease because it is so horrific), and subscribing to my patreon helps me pay for my neverending medical bills. ideally i would one day no longer have to work a desk job at all and be able to rely solely on patreon and art so that i can operate on a schedule that works with my pain levels better, so this is a really important way to support me.

sharing this post to help get the word out is also so appreciated ❤️ thank you

⭐️ patreon.com/lalalychee ⭐️

[xremus-is-deadx]

Happy CRPS awareness day by the way!!!

I don't talk about my disability on here because, I don't know, this is the nerdy fandom place, but I've been living with CRPS (complex regional pain syndrome) for 6 years now, and it's massively impacted my life. I'm a wheelchair user, have been for years now, and I'm only just finding my place in the world of acting again (I know, I have dreams, even I'm shocked)

Jokes aside though, the condition isn't very well known, and it's something I don't talk about much because I feel like I still need to hide it sometimes, but today is paint it orange day, so cheers to that 🤎

[chronicallymistreated]

People only have so much patience for those of us with chronic illnesses, chronic pain, and or mental health difficulties.

At the beginning there is so much support (or at least more support) but when they realise you're not recovering as quickly as they'd like... you get avoided, isolated, told you're exaggerating, etc. They seldom think about how those of us with chronic issues feel. How overwhelming it is to deal with everything day in and day out. There is so much anxiety, depression, grief, etc when dealing with chronic issues regardless of what they are.

If you're even more isolated because people refuse to see how much you're struggling or you're not recovering "fast enough" for the people around you just know you're not alone! There are so many of us in the same boat too

[cherryblossomforest]

Why is there so much guilt...

[lady-of-the-lyre]

Felt bad that there weren't many custom designs on the portal in Animal Crossing for spoonies and disabled pride. So I made some myself! 🥹

[wishful-seeker]

Btw if your skin is really sensitive due to crps and most fabric FEELS LIKE BEING STABBED WITH NEEDLES i highly recommend satin and silk clothes they feel like a breath of fresh air on my painful areas.

[daisyprayers]

I just posted a fundraiser update for those who are interested in seeing how my recovery is going (hint: it's going really really well)!

Link: https://gofund.me/f562d4f9

[takemeawayintothatgoodnight]

I'm sick of going through the same cycle again and again and again and again and again and again and