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…
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…
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…
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…
PMDD – The Insatiable Monster That Won’t Stop Chasing Me
Content warning: suicidal ideation, self-harm, violence, dissociative episodes, intrusive thoughts, trauma. Please note: In today’s post I will be sharing my personal experience with Pre-Menstrual Dysphoric Disorder or PMDD. Part of me has been dreading sharing the details of some of my pre-treatment thoughts and behaviours, but I believe it is important to talk about…
The ER Veteran’s Guide to an “Efficient Emergency”
I have been to the emergency room more times than I can count. Appendicitis, abdominal tear, fainting, partial paralysis, abnormal migraine, undetectable cortisol levels, multiple bouts of anaphylaxis, and that time my eye swelled closed for no apparent reason. There has been a recent uptick in these visits for me over the past year (hurray!)…
What It’s Really Like to Be in “Full-Time” Rehabilitation
I am sick. To a certain extent, I have always been sick, but over the past 3 years my health has detiorated considerably. I went from balancing work, study, training for my first 12km run and learning German in my spare time, to bed bound and unable to make my own breakfast. This was (obviously)…
Adora – My Accidental Migraine and Paralysis “Support Kitten”
Content Warning: potentially distressing descriptions of medical symptoms, death anxiety. Six months ago I had the absolute fright of my life. I awoke abruptly in the middle of the night, extremely dizzy and in need of one of those pesky, middle-of-the-night bathroom trips. As I stood up I felt all the blood rushing away from…
I’m Proud to be Rocking Mobility Aids at 27 Years old
I sit, staring across the desk at my doctor. We’ve already finished discussing all my other concerns for the day and I can’t delay any longer. I take a deep breath. “I’ve been talking to my physio about using elbow crutches…” I start nervously. “I’ve been using a cane on and off for some time…