Chronic Pain Healing Portal for everyone affected by severe #chronicpain & #chronicillness—by a princess with full body #CRPS #Fibromyalgia #PainSupport #CPP
Joined November 2012
- Tweets 33,276
- Following 27,591
- Followers 28,753
- Likes 10,664
1,827 Photos and videos
Pinned Tweet
26 May 2016
“Pain is soul destroying. No patient should have to endure intense pain unnecessarily." #chronicpain #spoonie
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“In my head I am still independent… then it hits me. I can’t even make it through a grocery trip without the burning #CRPS nerve pain… My body’s not the same… I didn’t want to accept this… I wanted to fight it.” #Compassion to a Body in #ChronicPain buff.ly/aypGMQ1
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“I constantly have to evaluate… to save spoons for activities I have to do later that day/week… This also makes unplanned things stressful. When you’re sick, spoons are scarce and every choice you make is also a choice to not do something else.” buff.ly/ZsQ2LIc #spoonie
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“The 90 MME threshold caused 100s of 1000s of #ChronicPain patients to be force-tapered… 2019 study by Oliva et al. found #cpp tapered off #opioids had a roughly 2-fold increase in overdose death & suicide compared to patients maintained on stable doses.” buff.ly/4T9YG0I
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“I’ve lost track of the number of times in my life that I’ve wanted to give up. The number of days, of moments, when I felt I could no longer tolerate the #pain… But I’m STILL here… Just like you can’t see my illness, you can’t see my strength.” buff.ly/2Q9W4vQ #spoonie
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“#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.” The Importance of Accepting Your #ChronicIllness buff.ly/jRYOGB3
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“When you’re #chronicallyill, pain becomes your constant partner. It’s always there. Our “baseline” is exhaustion, depletion and often tremendous suffering… We don’t know what it’s like to wake up #pain free, bursting with energy… We don’t know comfort.” buff.ly/2vdkdhu
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“I’m just so tired of being strong all the time. Of saying I’m fine, when really, I’m not. I’m tired, lonely, in #pain, and some days… just done. But to make someone else feel better, to not make others uncomfortable, I just say I’m fine.” buff.ly/0Lj3ejV #chronicillness
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“Simple pleasures can help alleviate suffering, whether it's watching a #comedy, using your favorite tea cup, being in #nature, with #animals or listening to #music… Whatever works for you.” Body Betrayal—How to Cope with #ChronicPain and Illness buff.ly/2By5a2i #spoonie
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“#Fatigue weighs heavy in my bones—often sucking the life out of me—but can I explain how that feels…? Words fail me… My struggle to remain even a little bit useful has cracked—and threatens to collapse—for a complete lack of adjectives.” buff.ly/3zMr5kK #pwME #pwLC
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“It’s important to try your best, but it’s more important to give yourself grace… It’s okay to push through, but it’s more important to not worry about things too much if at all possible. You are human.” #Organisation #Resources for #ChronicIllness buff.ly/UVTovzF
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“Intense, often indescribable #pain can have a profound effect on #QualityOfLife… It can be so hard to connect, find support and share what you’re going through… especially when you’re in constant, unbearable pain.” buff.ly/s0kGxQD #RareDisease #CRPS #CPS
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“My symptoms can flare daily and my pain can be off the charts. I can go from being able to walk with aids to being completely crippled. It’s scary at how quickly my physical symptoms worsen.” My #ChronicIllness Rule Book buff.ly/aPB6hAS @My_MedMusings #spoonie
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“I can be very sick one day, relatively fine the next, then sick again… Even those close to me can’t see how the weather one day put me in bed… then I was exposed to a strong scent and back in bed… To many I just look like I am ‘faking’.” buff.ly/W4yNWGy #spoonie
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“People who may not understand #chronicillness and pain may see you do something and think, you should be able to do it again, everyday… Don’t let other people’s assumptions weigh you down and most importantly steal your joy.” buff.ly/ih0qskT @CRPS_Warrior #chronicpain
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“Running out of spoons means there’s no energy left… The abled community may not understand how #chronicillness can limit energy or how limitations vary from day to day… It’s not that I’m not trying hard enough. I’m out of spoons, and it’s not my fault.” cme.sh/hyper-evolutioN
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“For every published essay I’ve written, it has taken me 6 months for my body to get back to baseline. That’s the price I pay for writing and publishing. That’s what you don’t see. What is your experience of #writing with a #chronicillness or #disability?” buff.ly/iQXa4jV
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“It can take years to get #diagnosed. Often #chronicillness patients have to go through a plethora of doctors… Many of us have had to fight […] for treatment… It’s exhausting, isolating. It makes a life—which is already #stressful—that much more so.” buff.ly/TPJo4Iy
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“It isn’t easy to love a body that holds you back. I had so many dreams and aspirations…being unable to…leaves me feeling incredibly unproductive and worthless. I feel trapped in the prison of my body.” buff.ly/42LluoY @serenebutterfly #chronicillness #chronicpain
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“I feel isolated all the time so when someone reaches out to me just to catch up, check in, or say hi, it can quite literally make my day. Text me, message me… anything to remind me that you’re thinking of me and I’m not forgotten.” buff.ly/8drl0Y1 #chronicillness
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“People with #ChronicPain can feel chronic invalidation… If someone had a broken arm you would not ask them to reach for a piece of paper on the floor, you would see the limitation and alter your request.” buff.ly/3Ue6Dkb @AChVoice #ChronicIllness #Disabilities
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