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Princess in the Tower

@apainprincess.bsky.social

500 followers 1.2K following 190 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 · 3h

“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 · 15h

“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 · 1d

“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 · 2d

“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 · 2d

“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 · 3d

“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 · 4d

“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 · 4d

“#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 · 5d

“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 · 5d

“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 · 6d

“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 · 6d

“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 · 8d

🫶❤️‍🩹🥰

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

“Not being able to shower as often as I’d like. I used to shower twice a day, now…the water burns as it hits my skin. And just the movement of raising each leg…is enough to make me feel like I ran a marathon.” https://themighty.com/topic/chronic-illness/chronic-illness-flare-embarrassing #Disability

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

“There’s no shame in using whatever tools help you function… Medication is not failure. You’re not broken because you need support—you’re #resilient because you keep showing up… Give yourself the grace to rest.” https://vikkyleaney.substack.com/p/my-top-5-pain-management-tools-as #PainAwarenessMonth

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

“There‘s not one moment I‘m not in pain. The medication simply allows pain to be at a level where I don’t absolutely lose my mind… Sometimes my pain‘s so intense that [#opioids] don’t even touch it. Anyone with severe #ChronicPain will tell you the same.” https://buff.ly/JIxkVcV #PainAwarenessMonth

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

“On a regular day I’m in more pain than most people could ever imagine, but I’m very good at hiding it… The more I push myself the sicker I get.” 5 things not to say to people with #chronicillness https://www.chronicmom.com/2017/02/5-things-not-to-say-to-people-with-chronic-illness.html/ #PAM2025

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

“It’s silly. I know it is. But, I feel like a failure… Writing this isn’t going to offer me or you any help, other than to know #YouAreNotAlone. If you’re struggling and your health is taking all of your available energy, just know I’m sitting here too.” https://buff.ly/IqTbDvn #PainAwarenessMonth

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

“It’s tempting to pretend I’m as healthy as can be but when I ignore my limitations—I land in bed for days.” Denial Only Makes #ChronicPain and Illness Worse https://www.psychologytoday.com/us/blog/turning-straw-into-gold/201506/denial-only-makes-chronic-pain-and-illness-worse #PainAwarenessMonth

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

“It. Never. Ends. You go to bed tired and wake up tired. You feel like your bones are made of lead… And no matter how much sleep you get, it never goes away.” 24 Signs You're Not 'Just Tired,' You Have #ChronicFatigue https://themighty.com/topic/chronic-illness/signs-chronic-fatigue-not-just-tired/

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

“I lost so much of myself…losing my job and my ability to work, left me with a huge void… Speak to anyone with a #chronicillness who is unable to work, I guarantee you they would give almost anything to be well again and be able to work.” https://whatapain.co.uk/losing-your-job-to-chronic-illness

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

“I struggle a lot with accepting my life the way it is now. I had to give up lifelong dreams and accept the fact that my body is not capable of doing the things I love to do… I struggle with accepting the lack of control.” https://buff.ly/38xVMgh #PainAwarenessMonth #ChronicIllness #Disability

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

“Remember that moods are impermanent. Sometimes if I’m feeling down, it’s hard to remember this… hold a painful mood lightly, know it will pass. Doing this clears the way for self-compassion.” https://www.psychologytoday.com/gb/blog/turning-straw-into-gold/202206/21-tips-from-21-years-sick #spoonie

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

So glad it resonated with you, Clare (the words, not the reality!), and thank you for sharing too. ♥️ Gentle hugs 🤗

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

Thank you for all your shares, lovely 🥰 so appreciated. 💖🫶