Living well and chronic pain – the MyCuppaJo monthlyish museletter
Here’s an excerpt from the November newsletter from a person with chronic pain whose blog is devoted to physical movement and therpy. Jo includes some of her own and others’ posts emphasizing the same point of view.
Another post that’s been in the works for some time (and was incredibly hard to hit ‘publish’ on) is one about the shame I’ve experienced alongside my pain. It’s been something I’ve wanted to write about for a long time. I want to break down this barrier, not just for myself but for all of us who’ve been ashamed of our pain.
Does pain change the way we move? Does the way we move contribute to our pain? Here’s great write-up on movement and pain from the Conversation, who’ve done a bang-up job of pain and health reporting, imo. Continue reading
Chronic Confessions Blog Shares Secrets of Chronic Illness | The Mighty
Would you share your deepest, darkest secret about life with a chronic illness online? Over 1,000 people have on a Tumblr blog, “Chronic Confessions.” The blog – which was founded in July, 2015 – anonymously shares user-submitted posts about the ups and downs of living with a chronic condition.
According to the blog’s frequently asked questions, the blog welcomes posts from anyone who identifies as being chronically ill, including those living with a mental illness.
“Chronic Confessions” is run by an anonymous chronically ill 19-year-old who goes by the Tumblr username “tintinnabulary.” The blog is meant to be a safe space for people to “rant and reveal” their emotions.
Contributors range in age with posts featuring a wide variety of life experiences from high school to parenting, and even managing a condition for decades.
Here’s a humorous, yet true, take on how to live when you can’t just live like everyone else:
Written by a fellow “EDS-er”
EDS Patient’s Bill of Rights | An Angel with Wings – written by one of the people that created the International EDS Registry.
The full version of this document is well-worth reading – this is only an outline:
The purpose of this Bill of Rights is not to be combative or argumentative. I have experienced all of these things during the time that my EDS was undiagnosed. My experiences don’t seem to be unique. Many members of the support groups I participate in have had talked about similar experiences with new doctors. Because of these issues, I have a very hard time trusting doctors. This is common in patients with Ehlers Danlos Syndrome. The sole purpose of this Bill of Rights is to ensure that my needs are communicated up front, and to discuss them with you so that we can build a great doctor-patient relationship.
1. I have a right to be treated by medical professionals that believe that Ehlers Danlos Syndrome exists.
2. I have a right to be treated by medical professionals that believe that I have Ehlers Danlos Syndrome.
From KeeliKaye at http://shieldmaid.com/2013/05/14/to-those-who-cant-heal-even-with-paleo/
My body will not heal. It will not get better. It will get worse. I only have so much control.
So when I read things like this:
“We just have to believe [healing is possible]. We have no other option so far as I can tell. If I don’t believe it’s going to get better, I may as well pack my bags, say farewell to my dreams, and shrivel up in a corner of my mother’s sofa”
by a woman whose writing and messages I really like, my stomach drops and I feel a torrent of sadness, rage, and heart-wrenching envy.
I have been experiencing severe physical symptoms for the past decade, since I was 16. These symptoms were only recently diagnosed as Ehlers-Danlos Syndrome, bordering the hypermobility and classical types. Over the years, my symptoms have come to match a relatively “textbook” understanding of connective tissue disorders. In earlier stages, however, my chronic global pain was largely dismissed and my extreme hypermobility was deemed an irrelevance. I arrived at my EDS diagnosis through my own research, and then had my diagnosis confirmed by every subsequent medical expert.