by Nicole from Hi there! I’m Nicole - a movement educator and Pilates teacher. I work with hypermobile humans to improve quality of life through better movement. I have Thoracic Outlet Syndrome and my sweetheart has Ehlers-Danlos Syndrome, so I’m intimately familiar with a number of symptoms of hypermobility - oh, the variety and complexity!…
Well, HAVE You Tried Yoga? (Libby Hinsley Book Review)
When I first sat down to write this review of Libby Hinsley's book: Yoga for Bendy People, I was overwhelmed. I had written so many notes during my late night, COVID-insomnia fueled reading sessions. I knew this article threatened to be way too long, but how could I possibly shorten it!? Libby had so many…
Fullabilities: The Fearless Disability Advocacy Project Run Entirely by High School Students
CW: descriptions of medical symptoms, fainting, medical gaslighting. Today's blog post is an interview with Hanna Pacula, one of the founding members of Fullabilities; a fearless disability advocacy program run by disabled and chronically ill students from Poland. Hanna has an incredible story. She has been bed-bound and unable to achieve a seated position without…
Living with a Chronic Illness? Consider These Things Next Time You’re Preparing For a New Doctor
(A collaboration with DiverseMedEd) If you live with a chronic illness, preparing for a new doctor for the first time can feel overwhelming. Where do you start? Will you have enough time to tell them about your complex medical history? Will they even be familiar with your condition? If you find the lead up to…
Stop Being An Ableist A**: Your Friendly How-To Guide
One of DLP's first ever blog-posts was a guide on how to respond to every chronically ill person's favourite comment: "You don't look sick." While it is important for people living with disabilities and long-term illnesses to have techniques for combatting unwanted and ableist comments, it is equally important for our loved ones, allies, and…
An (Updated) Week in My Life
If you’ve been hanging out here for a while, you may remember that last year I made a post about what it’s really like to be in full-time rehabilitation. I wanted to make a follow up to this, as a few things in my life have changed, and I’m not sure if I would consider…
The Hidden Costs of Chronic Illness and Disability
The costs of chronic illness and disability are many, and coupled with the overall lower income and higher unemployment rates of the people who fall into these categories, they take a huge toll on many lives. Some of them are more well-known, such as the high cost of a specialist appointment or surgery. However, there…
CBD: Separating Fact From Fiction
CBD or Cannabidiol has been gaining a lot of traction recently. Everywhere you look there seems to be someone offering it in a new form, accompanied by a new claim as to how it will benefit your well-being. Some of these claims are supported by solid evidence, but some are often exaggerated, and many even…
I Spent My Saturday Translating This Life-Changing Article About EDS and MCAS Into English
My doctor recently handed me a copy of a journal article on the relationship between Ehlers-Danlos’ Syndrome and Mast Cell Activation Syndrome (EDS and MCAS). It was co-written by Dr Stéphane Daens and Dr Daniel Grossin; the President and Vice-President of GERSED (Belgium’s Francophone society for EDS research). I am actually eagerly awaiting an appointment with…
The F Word
IMPORTANT UPDATE (please read) Since writing this post I have become more aware of the huge amount of symptomatic cross-over between Fibromyalgia and ME/CFS. While it is possible to have both of these illnesses, some treatments for Fibromyalgia are contraindicated for ME/CFS. This issue becomes even more complicated when you consider the high rate of…