Friday, 01 February 2019. Issue #147.
In this issue: Living with invisible illness is torturous in many ways, but there you are living, despite it all. It’s heartbreaking when chronic pain becomes your new norm. The grief of knowing just how much potential you have, yet can never be realised because of chronic illness. Taking time to grieve who we thought we were, then becoming who we were meant to be. The difference between regular tiredness and chronic fatigue. The need for patients with all types of illnesses to band together as a single unit of strength, in order to change things. A hundred relatable things if you live the chronic illness life. Whilst there’s still much that we don’t know about our bodies and illnesses, we can clear up misconceptions in the meantime. Life with Ehlers Danlos Syndrome is hard, but there are a few things you can do to help yourself. The desire to live a normal life, but only being able to do it in small doses.
“Living with a #invisibleillness is #torture. No one knows the pain you feel, and judge you in comparison to their own expectations and assumptions. And yet here you are..Living..In spite of it all”: https://t.co/4q354zNEB9 @shawnbethea_ #spoonies #chronicpain #mentalhealth
— A Chronic Voice (@AChVoice) January 24, 2019
“When you start expecting to wake up with the #pain every day. That’s terrible. When you don’t even notice anymore, and when it becomes your #normal. That’s heartbreaking”: https://t.co/NSIlhNAKY1 via @TheMightySite #chronicpain #awareness #chronicillness
— A Chronic Voice (@AChVoice) January 27, 2019
“I know I am #capable of a lot if not for the #chronicpain & illnesses. And knowing that & knowing the #reality of the situation is a contrast my brain doesn’t like at all. The potential that can’t be realized. Ever”: https://t.co/TZjfj1s1vs @Nikki_Albert #chronicillness #career
— A Chronic Voice (@AChVoice) January 27, 2019
“But once we have grieved who we thought we were we can make room for the person we are supposed to become”: https://t.co/gyEuTxyZuO @jp_journals #selfidentity #spoonie #chronicpain #chronicillness #grief
— A Chronic Voice (@AChVoice) January 26, 2019
“So, how is #chronicillness tiredness different than ‘regular tiredness?’”: https://t.co/6m0RtCMc5o @TheMightySite #tired #chronicfatigue #chroniclife #chronicpain
— A Chronic Voice (@AChVoice) January 31, 2019
“#Patients, people with #chronicillnesses or #disabilities, should fight as a unit, and not as fragmented different diseases or illnesses. We are being conquered because we do not fight together”: https://t.co/fDGOswDU1U @A30MinuteLife #StrongerTogether #spoonies
— A Chronic Voice (@AChVoice) January 25, 2019
“The list steadily grew – to over 100 – until I finally felt ready to share it with the world. Some are funny, some are sad, and some are a bit specific to #lupus or #autoimmunediseases”: https://t.co/osWXVhfbzK @MyMeenaLife #chroniclife #spoonieproblems #chronicillness
— A Chronic Voice (@AChVoice) January 25, 2019
[Archives] "There’s still so much that science doesn’t understand about our #bodies, and still so much pain that #medicine can’t fix. But in the meantime, we can work on clearing misunderstandings & #misconceptions": https://t.co/uiOBtQQNFH #ChronicPain #StrongerTogether
— A Chronic Voice (@AChVoice) January 30, 2019
“‘What makes your life easier managing #EhlersDanlosSyndrome?’ I had to think, I mean really think as I watched the seconds tick on the clock in the medical room”: https://t.co/G7FbbJvBhC @Morgan141993 #EDS #spoonies #painmanagement #chroniclife
— A Chronic Voice (@AChVoice) January 29, 2019
“I just want to live a #normal life
But I can only do it in small doses”:https://t.co/6d9ZHCpYMM #fakingit #spoonie #chroniclife #poem— A Chronic Voice (@AChVoice) January 25, 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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