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…
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…
Freedom
Freedom Walking’s never something that I thought that I would lack,I’m sick of spending so much time just flat upon my back. Freedom comes in many forms, can’t always choose our own.These limbs are unreliable, so I’ll be rolling home. Freedom comes in many forms, and sometimes it’s a choice,Today I chose to hop on…
The F Word
Content warning: suicidal ideation, medical negligence, medical gaslighting, trauma, grief, depression, depictions of medical symptoms. Please note: This post will make reference to the pros and cons of certain treatments for Fibromyalgia. However, this is not medical advice. Please speak to your doctor. Why do so many of us refer to Fibromyalgia as "The F…
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…