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…
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 (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…
A Comprehensive Review of the CycleSoother
Content Warning: descriptions of medical symptoms, blood. ATTENTION Do you have a uterus? Do you sometimes wish that you didn’t!? Well then, this is the article for you my friend! (If you do NOT have a uterus, I suggest you pause for a small moment of gratitude, then keep reading anyway so you can potentially…
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…
I Spent Three Days in Hospital Covered in Electrodes
I recently completed a three day study at my local hospital. This involved a spirometry, ECG, ENT exam, overnight sleep monitoring and a Multiple Sleep Latency Test (MSLT). There were multiple reasons for this, the primary one being that I have been having frightening episodes of partial paralysis, accompanied by some other odd symptoms, and…