Saturday, 02 June 2018. Issue #112.
In this issue: Fatigue from chronic illness can’t be fixed by merely resting or sleeping, and exists on a whole new level. There is an important difference between pain tolerance and pain threshold. Putting medications and herbs aside, even regular foods can be dangerous for someone with Antiphospholipid Syndrome. There’s more to Ehlers Danlos Syndrome than just being super ‘bendy’. What it feels like to be ‘glutened’, and thoughts about how society processes and accepts the concept of pain. What it’s like to have needles and tubes shoved into every hole and through the skin of your body. The choice to use Dragon Naturally Speaking even without disability, for better access to ergonomic body postures. How snail mail can be uplifting when you’re bed bound, and some resources for spoonie card swaps! Having the courage to ask for accommodations from work, and the good that came out of it. How slowing down actually takes more discipline than speeding up, as it requires constant, conscious choice.
“Getting an early night doesn’t fix my problem. Doing less activity doesn’t fix my problem. Getting more #sleep at nighttime doesn’t fix my problem (and that’s if I can even get to sleep!)”: https://t.co/6m0RtCMc5o @TheMightySite #chronicillness #chronicfatigue #mecfs #tired
— A Chronic Voice (@AChVoice) May 29, 2018
“#Paintolerance is how much #pain you can handle while still functioning (for me, this means how much pain I can handle without taking medication). #Painthreshold is when your body actually starts to feel pain”: https://t.co/88G5SEckkm @TheMightySite #chronicpain #chronicillness
— A Chronic Voice (@AChVoice) May 29, 2018
[New Post] "Putting medicine and herbs aside, even regular fruits and vegetables can mess things up, and the effects take hold pretty fast as well": https://t.co/1UmNcvw1xg #antiphospholipid #spoonieproblems #nutrition #chronicillness #healthyeating
— A Chronic Voice (@AChVoice) May 27, 2018
“This severe lack of knowledge in the #medical community about what all forms of #EDS can do to the overall body. It isn’t just super #bendy”: https://t.co/BXNgd3GPnW @Nikki_Albert #chronicillness #awareness
— A Chronic Voice (@AChVoice) May 27, 2018
“Why is it that we live in a #society that can easily accept #sickness when they are #familiar with it but are so quick to disregard a sickness that doesn’t appear to be authentic just because of lack of #generalknowledge”: https://t.co/8rBSvODiC9 @ChronicallyGF #sicklessons
— A Chronic Voice (@AChVoice) May 30, 2018
[Archives] "Every investigation was exhausting as it was violating. Needles and tubes were stuck into and removed from my tiny veins, down my throat, up my ass, through my flesh": https://t.co/mjSh5rz3Id #chroniclife #chronicillness #lifechanging #spoonies #lifelessons
— A Chronic Voice (@AChVoice) May 26, 2018
[Archives] "Even if I were able to sit in a correct position, I would still prefer to use Dragon for most of my computer tasks. Using a keyboard and mouse limits you to a few #ergonomic positions": https://t.co/FIHASCCGih @rver0 #voiceassistants #spoonie #posture #healthyliving
— A Chronic Voice (@AChVoice) May 27, 2018
“When you are forced to spend a lot of time in bed due to your #chronicillnesses it is very cheering and uplifting to receive #snailmail” – going to check out the #spoonie card swaps for sure. Thanks for sharing, @graphic_organic! https://t.co/Sx4KqlPeAw #encouragement #letters
— A Chronic Voice (@AChVoice) May 31, 2018
“I’m so very glad that I faced my #fear. I’ve gone from someone terrified of being fired for being ‘too sick’ to someone that feels that even with #hEDS all things are possible”: https://t.co/ZFeTXWF0Xp @TheMightySite #career #workenvironment #chronicillness
— A Chronic Voice (@AChVoice) May 29, 2018
[New Post] "Thinking about it, slowing down requires more discipline than speeding up. The latter can be motivated by fear, but the former requires a constant, conscious choice": https://t.co/EPLQZas240 #selfcare #chronicillness #slowdown #juneprompts #amblogging
— A Chronic Voice (@AChVoice) June 1, 2018
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