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…
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!)…
PSA: Hypermobility and Flexibility Are NOT the Same Thing
Content warning: chronic pain, medical negligence I limp down to my regular spot by the school canteen as my friend Michelle comes bounding over to me. "You missed P.E. AGAIN today!" She exclaimed. "Everything ok?" "Yeah, I just rolled my ankle again." I say, with a defeated sigh. "Again!? Wow, you’ve been so unlucky this…
Misconceptions About Cortisol That Keep Me up at Night
Content warning: potentially distressing descriptions of medical procedures and symptoms, medical negligence. You may or may not have already read that I used to suffer from a condition called "Hypoadrenalism," an illness which prevents your adrenal glands from properly producing the hormone cortisol. This can have many different causes which we will discuss in greater…