(A collaboration with DiverseMedEd) If you live with a chronic illness, preparing to see 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…
Should You Spend 5 Bucks a Month on the Corra Health Tracking App?
Content warning: descriptions of medical symptoms, blood, weight and food tracking. Corra is a personal health app that is currently available in the Apple and Google Play stores. It can track a variety of health factors such as sleep, nutrition, and symptoms, which the app can then analyse to offer each user individual health insights…
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 comments, it is equally important for our loved ones, allies, and even random…
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…
It’s the Most Flare Inducing Time of the Year! (Coping With the Physical Strain of the Holiday Season)
The holidays can be a challenging time of the year, especially if you live with a disability. In the November newsletter, I asked you what the most helpful thing would be for us to discuss in the lead up the Christmas. The most popular answer was: coping with the physical strain of the holidays. My…
Transdermal CBD Patches: Dream Come True or Too Good to Be True?
For the past year I have been using CBD products to help with pain, nausea and muscle spasms. I have found it to be an incredibly helpful tool as part of a multi-prong approach to managing several chronic conditions including Hypermobility Spectrum Disorder, Fibromyalgia, and pelvic pain. I have primarily been using sub-lingual oils and…
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. 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 Doctor Daens in…
A Cautionary Tanka and Other Poetic Thoughts
(AKA a short selection of my grievances, organised by syllable.) A Tanka is a form of short poetry that originated in Japan and is often likened to an extended Haiku (a three line poem with a syllable pattern of 5,7,5). When it comes to life with chronic illness, we often experience both beautiful and devastating…