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Princess in the Tower

@apainprincess.bsky.social

530 followers 1.2K following 200 posts

Healing Portal for everyone affected by severe #ChronicPain & #ChronicIllness~by a princess with full body #CRPS. Resources, community, awareness | www.princessinthetower.org #YouAreNotAlone ~ wishing you support, strength & hope for far kinder days.♥

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Princess in the Tower @apainprincess.bsky.social · Dec 8

“If opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.” ~ Carmen Ambrosia

#MentalHealthMatters #ChronicPain #ChronicIllness #RareDisease

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Princess in the Tower @apainprincess.bsky.social · 9h

Why Do I Pretend To Be Well? https://cme.sh/7kmCmu #chronicillness #chronicmigraine #migraines

Princess in the Tower @apainprincess.bsky.social · 9h

“I tend to put pressure on myself to ‘power through’ pain to prove that I am capable: But powering through pain can cause more harm than good, and it is okay to not ‘power through’!” Why Do I Pretend To Be Well? #ChronicPain #InvisibleIllness

Why Do I Pretend To Be Well?

cme.sh

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Princess in the Tower @apainprincess.bsky.social · 9h

“Just because I’m smiling or laughing doesn’t mean I’m pain-free. I think that’s one of the hardest things for those without #ChronicPain or #ChronicIllness to understand… it’s always there.” https://themighty.com/topic/migraine/shifting-perspective-chronic-pain-migraine/ #InvisibleIllness

Princess in the Tower @apainprincess.bsky.social · 2d

“Because people in #ChronicPain have to be good at ignoring their own pain, their maximum sneaks up on them and on you… The wall of pain will hit hard.” https://www.elephantjournal.com/2013/04/23-tips-for-supporting-a-partner-with-chronic-pain-pete-beisner/ #InvisibleIllness

Princess in the Tower @apainprincess.bsky.social · 2d

“#Disability is diverse and complex, and a large fraction of the #disabled community have invisible disabilities… Believe and support us as we try to live—amid our numerous obstacles and limitations. We too want meaningful lives, just like everyone else.” https://cme.sh/health-centered #Disabilities

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Princess in the Tower @apainprincess.bsky.social · 4d

“Have you ever been stuck in bed for a few days from a really bad infection or surgery? Think back… You could barely get out of bed and simple tasks were exhausting. Now consider feeling that way every day, all day, for months or years.” https://buff.ly/zp4j7pr #severefatigue #chronicpain #spoonie

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Princess in the Tower @apainprincess.bsky.social · 4d

“I spend everyday in excruciating #pain. I’m sensitive to light & noise, simple tasks are hard… My short term memory’s bad… #CRPS is a horrid disease… Don’t allow someone to minimize your journey… every warrior is a warrior.” https://rsds.org/dont-allow-someone-else-to-minimize-your-journey/ #RSD

Princess in the Tower @apainprincess.bsky.social · 5d

“While they know my illnesses are bad, I don’t often show just how bad they can get… When I’m able to hang out, that’s me on my absolutely best days.” https://themighty.com/topic/chronic-illness/what-sick-people-dont-tell-friends/ #ChronicIllness #ChronicPain #SpoonieSky

22 Things People With Chronic Illness Don't Admit to Their Healthy Friends

themighty.com

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Princess in the Tower @apainprincess.bsky.social · 5d

“I just love how #reading is gentle, restorative and a way to travel…when your body needs to stay still… Flares are never easy, and can be very frustrating, but finding cosy moments in a #fatigue flare makes all the difference.” https://buff.ly/2crqTdU @bloomingmindxx.bsky.social

Princess in the Tower @apainprincess.bsky.social · 6d

Thank you so much lovely, always so appreciated. 🥰 Also 🦦as I love your comedy emojis! 😻♥️ Gentle 🤗

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Princess in the Tower @apainprincess.bsky.social · 6d

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Princess in the Tower @apainprincess.bsky.social · 6d

“”You’re so lucky! I wish I had a vacation every single day!” I haven’t had a vacation in ages… And being home, sick and in pain—every single day—is not a vacation.” https://themighty.com/topic/chronic-illness/being-unable-to-work-with-chronic-illness-is-not-a-vacation #chronicillness #disability

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Princess in the Tower @apainprincess.bsky.social · 7d

“I have grieved many times for my life with regards to #chronicillness I grieved for the life I had before becoming ill and the life I had planned…for the loss of my career due to illness.” https://memysefandchronicillness.home.blog/2023/01/26/my-first-blog-in-four-months/ #chronicpain #spoonie

Princess in the Tower @apainprincess.bsky.social · 7d

“If you know someone with #chronicillness, I urge you to reassure them when they cancel plans—that you know it is not their fault… Guilt is our constant companion. We are trying our best, and we only want you to see and appreciate that.” https://cme.sh/self-worth #ChronicPain #Disability

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Princess in the Tower @apainprincess.bsky.social · 8d

“I hear you suggesting that I’m not trying hard enough to manage my #chronicillness… that I’ve not done enough research… that I’m not doing everything in my power… when that’s all I’m doing… I wasn’t looking for advice… I was looking for kindness/support.” https://buff.ly/5BYBH5n #chronicillness

Princess in the Tower @apainprincess.bsky.social · 9d

“I’m pretty stubborn, so I’ve managed to do a lot of things while in extreme pain. But when pain gets to this level, no amount of stubbornness can make it achievable… They don’t realize that it’s actually not a choice… It’s just impossible.” https://cme.sh/chronic-care #ChronicPain

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Princess in the Tower @apainprincess.bsky.social · 9d

“However difficult life may seem, there is always something you can do and succeed at. It matters that you don’t just give up.” ~ Stephen Hawking Why It Matters https://spoonieauthorsnetwork.com/2018/03/22/why-it-matters via @spoonieauthnet.bsky.social #ChronicIllness #Disabilities #ChronicPain

Princess in the Tower @apainprincess.bsky.social · 10d

“There’s no way to fully comprehend the utter devastation of #chronicillness — we’re left shakily holding on to the memory of who we once were, the friends and family we once had, the life… We grieve the potential we lost.” https://themighty.com/topic/chronic-illness/chronic-illness-sick-lonely

Princess in the Tower @apainprincess.bsky.social · 11d

“When I was first #diagnosed…I felt overwhelmed by fear and uncertainty… I learnt that giving myself permission to feel the full range of emotions was an essential part of adapting to life with #chronicillness.” https://www.thethrivingspoonie.com/how-to-navigate-the-emotional-maze-of-chronic-illness

Princess in the Tower @apainprincess.bsky.social · 11d

“#BeKind to yourself! Start small and listen to your mind and body, don’t push things that aren’t ready to be pushed, or if you do push and your body shouts no! then step back a little and reformulate.” https://themighty.com/topic/chronic-illness/chronic-illness-acceptance-importance #ChronicIllness

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Princess in the Tower @apainprincess.bsky.social · 12d

“People say, ‘Wait until you’re my age.’ They should be saying, ‘I’m sorry you already feel like you’re my age.’ I’m 21 and my nerve endings are gone… I’m so sick of people telling me I’m too young to be ill.” https://buff.ly/Os5L1xz #ChronicPain #ChronicIllness #Disabilities

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Princess in the Tower @apainprincess.bsky.social · 12d

“We in the #chronicillness community have tried many different ways to explain #fatigue… from batteries to spoons… Be patient [if your friend] doesn’t reply—with fatigue it can be hard to think straight to reply.” https://www.bloomingmindfulness.co.uk/tips-for-supporting-your-fatigued-friend/

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Princess in the Tower @apainprincess.bsky.social · 13d

“I’m astonished by the fact I look at my feet and there are no flames… Not only does light touch hurt but so do other things… vibrations from music hurt me… Mix that with the amplified effect—it’s very hard.” https://themighty.com/topic/reflex-sympathetic-dystrophy-syndrome/crps-flare-ups/ #CRPS

Princess in the Tower @apainprincess.bsky.social · 13d

“Those with #chronicillness often face suggestions that they're somehow responsible…"Have you tried…?" carries the implication that continued illness represents a failure of effort/willpower.” https://open.substack.com/pub/chrishutchinsjoss/p/when-get-well-soon-isnt-an-option?r=5nw6mf&utm_medium=ios

Princess in the Tower @apainprincess.bsky.social · 15d

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