Friday, 10 May 2019. Issue #160.
In this issue: Hundreds of people with chronic illnesses share their thoughts on what they find most challenging, besides the pain itself. Publication of a new book with proceeds going to the charity, “Invest in ME Research”. Friendship isn’t about changing people, but showing up for them when they are ready to do so for themselves. The fear that others think you are all better now, because you share some photos where you’re having fun. The challenges of taking care of yourself when you’re chronically ill, and the importance of trying just as hard to do so. Normalising mobility aids and pushing society forward, by using them as needed. The internal dilemma of advocating for your own needs when it might come across as ‘rude’. ME/CFS is actually twice as common as Multiple Sclerosis, and ways to show your support. Mothers are truly the superheroes of everyday life. The effects that medication can have on your mind, and your actions thereafter.
Which part of living with chronic illness – unrelated to the the pain itself – gets you down the most?
— A Chronic Voice (@AChVoice) May 7, 2019
“I'm pleased to announce the publication of my new #book of short #poems. It's entitled 31 days in #May…I have decided to #donate all proceeds from the sales of this book to the charity Invest in ME Research”: https://t.co/3JUfj1tLWJ #mecfs
— A Chronic Voice (@AChVoice) May 3, 2019
[Archives] "We’re not meant to change anyone who isn’t willing or ready to change. What we can do is #showup for them when they are ready to show up for themselves": https://t.co/UAiHuJYpso #quote #chroniclife #spoonie #friend
— A Chronic Voice (@AChVoice) May 9, 2019
“I felt the need to qualify what I was doing; to verify that I was still ill, and to remind everyone that there was more to the truth than what was visible in the photo”: https://t.co/oy66tWTHYd @TheMightySite #InvisibleIllness #ChronicPain #ChronicLife #awareness #spoonie
— A Chronic Voice (@AChVoice) May 7, 2019
“When you’re #chronicallyill it can be 100 times harder to eat well and #exercise, esp when you’re short on energy and physically restricted but it’s also 100 times more important that you try”: https://t.co/A1DEuhI33T @SLHurdles #selfcare #chroniclife #spoonies
— A Chronic Voice (@AChVoice) May 6, 2019
“If we hide away our #wheelchairs and our walkers and our tubes and drips and things because they make people uncomfortable, we’re never going to push #Society forwards. It’s up to us to pave the way”: https://t.co/jBsfY9AWxW @bloomingmindxx #spoonies #disability #ChronicIllness
— A Chronic Voice (@AChVoice) May 5, 2019
“when you have been raised to..treat others like you want to be treated…w the reputation of being a 'nice girl,'…#advocating for your #health in a way that might be construed as '#rude' can be..hard”: https://t.co/F9G2lXX1qt @CollegeCeliacKC #awareness
— A Chronic Voice (@AChVoice) May 6, 2019
“ME is not a #raredisease either. It is twice as common as MS and comparably disabling, even more so in the more severe cases where patients are paralysed and tube fed”: https://t.co/Fpp1U7Y939 @chronic_hopeful #mecfs #MyalgicE #ChronicIllness #awareness
— A Chronic Voice (@AChVoice) May 4, 2019
"There’s no need to state the obvious I suppose, but many #mothers are the ultimate #superheroes in everyday life. They’re the ones who #showup when things get rough, and showing up once is the easiest part" – #HappyMothersDay! https://t.co/6dS6X4c5eL #ChronicIllness
— A Chronic Voice (@AChVoice) May 5, 2019
“Mentally/psychologically I’m now fine, but I will never #persevere as long again if I have another similar reaction to a future #medication”: https://t.co/Qt0yu4ZhAa @limberation #methotrexate #MentalHealth #ChronicPain
— A Chronic Voice (@AChVoice) May 6, 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.
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