Friday, 14 June 2019. Issue #165.
In this issue: The dread of summer when you can’t regulate your body temperature. When your supportive community turns hostile, because you’re in remission. The constant reminder from others about how prednisone makes you fat, when you’re just trying to stay alive. It would be nice to take a break from chronic illness every now and then, in whatever way possible! Would I, as a person with chronic illnesses, date or marry a healthy person? When sleep isn’t restorative and you feel worse with each passing night. A throwback of the “It’s in My Blood” series, where we celebrate the spoonie life. Prioritise the wellbeing of yourself and your loved ones; other things will probably not matter over time. Craving that elusive thing called sleep. Chronic pain and illness play by their own set of everchanging rules, ones that we have no choice but to follow.
“I can’t regulate my #bodytemperature, so when the sun begins to shine I’m often filled with more dread than happiness”: https://t.co/SJuxCvTVb4 #HotWeather #ChronicPain #ChronicLife #SelfCare
— A Chronic Voice (@AChVoice) June 13, 2019
“Imagine being part of a supportive #community for yrs..then either being rejected by that community because yr #health has improved, or being so scared of the backlash that u hv to keep yr good news a secret”: https://t.co/pfo0hdCRkx @JourneyFog #remission #mecfs #ChronicIllness
— A Chronic Voice (@AChVoice) June 7, 2019
“Everyone warns you that #prednisone will make you fat, and when it does make you fat, they remind you that prednisone made you #fat. Meanwhile, you’re just trying to stay alive”: https://t.co/4GuVO8VPb3 @HBMastCells #ChronicIllness #SpoonieProblems #ChronicPain
— A Chronic Voice (@AChVoice) June 10, 2019
“I’m not the type of person to be all ‘#whyme?’..I’m able to handle it, for the most part. I’d just like a break now and then…or a lottery win….or a free house keeper for life….I’m not picky”: https://t.co/xHpcgAPWpx @lolabellaquin #Spoonie #ChronicPain #PainFlare #ChronicLife
— A Chronic Voice (@AChVoice) June 12, 2019
[Archives] "This #question pops up..often: 'Would you date or marry a person with #chronicillness?' So I thought I’d address it once & for all, by first asking – would I, as someone with #chronicillnesses, date or marry a healthy person?": https://t.co/vSXtOn8LDi #dating #spoonie
— A Chronic Voice (@AChVoice) June 9, 2019
“My body is screaming. Nothing is functioning like it should be. Each morning when I awake from a night of broken #sleep, I feel worse than the day before. Nothing seems restorative”: https://t.co/0yqoMDcOKR @My_medmusings #ChronicIllness #ChronicPain #pacing #SelfCare
— A Chronic Voice (@AChVoice) June 10, 2019
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“What do people with #chronicillnesses do every day? Do they even get any enjoyment out of life?” – #Throwback to the “It’s in My Blood” series, where we showcase #spoonies w different #talents & interests! https://t.co/DUnaUpjCTV @TBR_TravelBlog #people
— A Chronic Voice (@AChVoice) June 8, 2019
“Prioritise the #wellbeing of yourself and your loved ones. Let the trolls feed upon themselves; there will always be more work to do; it probably will not matter in 10 years (or after a good night of sleep); etc ?”: https://t.co/3aB70JbV2r #priorities #peace #SelfCare #spoonies pic.twitter.com/nUcuoaidS8
— A Chronic Voice (@AChVoice) June 9, 2019
“One of the most elusive things in my life – #sleep! Even if I get it, it often has no restorative value. Yet I still crave it. Constantly”: https://t.co/HCAUEXcTQN @lisaalioto #meditation #MentalHealth #SelfAwareness #ChronicIllness
— A Chronic Voice (@AChVoice) June 7, 2019
“Pain & illness..play by their own set of rules. And when we thought we had learned their rules, they suddenly move the goalposts. And we have to learn a whole new set of rules”: https://t.co/T8yRFWAFJ8 @serenebutterfly #ChronicIllness #ChronicPain #linkup #spoonies #LifeLessons
— A Chronic Voice (@AChVoice) June 10, 2019
*Note: This article is meant for educational purposes, and is based on each person’s individual experiences and circumstances. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding new treatment protocols.
Read More: How Much Time Are You Wasting On Sleep?
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