I thought it might be a good idea to write a basic FAQ blogpost before writing more here. Just to let you know who I am and why I’m writing this blog.
My name is Mei-Lu McGonigle. I’ve been disabled by CFS/ME since May 2008. Before my collapse, I was struggling with a milder form of undiagnosed CFS/ME for about 8 years. I grew up in suburbs of Chicago, Los Angeles and London. I am a first generation American – my father is Scottish and my mother is Chinese (though she grew up in the Philippines). I did a year at the University of Illinois, Urbana-Champaign before transferring to University of Southern California, where I received a BFA in screenwriting. While trying to break into the business as a film and television writer I had a lot of different jobs – temping, restaurant work, and various industry and non-industry assistant jobs. Eventually I segued into public relations, which was what I was doing when I became disabled.
YRMV is my blog about living with chronic illness. I have another blog, Daily Krill, about fun random stuff (pop culture, history, fashion, makeup… basically anything that strikes my fancy). I’m writing YRMV for many reasons. The main one is that I’m a writer and writing is how I process. But also my understanding of my disability and various symptoms improved dramatically when I started connecting with other chronically ill people. So I hope that by being open and honest here I’ll help other chronically ill patients (or friends & family of the chronically ill) in the way that they’ve helped me. I want emphasize that this is NOT a “how to” live with chronic illness blog because I think most chronically ill people are drowning in a sea of well-intended but mostly unproductive advice. Just because I’ve decided a course of action is the best for me & my constellation of symptoms doesn’t mean that I think everyone should do it. This is why I’ve called the blog YRMV (for “your results may vary”).
I’ll be using the term spoonie a lot in this blog. Spoonie is the term many of us in the chronically ill community have adopted to describe ourselves. It comes from this blog post by Christine Miserandino. I like the term spoonie because it doesn’t have the emotional weight that terms such as disabled can have. (Although I have embraced the term disabled, a lot of fellow spoonies feel that it doesn’t accurately apply to their circumstances.) Also, using the hashtag spoonie allows us to interact with other people who are suffering in a similar way but who we may not otherwise interact with if we stayed siloed in one specific diagnosis.
Speaking of diagnoses, CFS/ME isn’t the *only* thing wrong with me. Like many other spoonies, I have multiple chronic health problems. It’s interesting how many spoonies have a constellation of symptoms and diagnoses rather than just one thing. It’s almost as if once the body is under pressure, it starts fracturing along its fault lines, its weaknesses. Along with CFS/ME, I also suffer from myalgia (though not fibromyalgia), endometriosis, asthma, allergies, a compromised immune system (which means I have a lower resistance to viral illnesses & take a long time to recover from illnesses that are minor inconveniences to healthy people), a tendency towards digestive symptoms (in the last 12 months I’ve had four episodes of acute digestive distress similar to food poisoning, one requiring an emergency room visit) and insomnia. In the past I’ve had cardiac symptoms stemming from orthostatic intolerance. I’m happy to report that since I’ve learned how to pace my activities, I haven’t suffered from this particular symptom (fingers crossed that continues). I endure daily sore throats and headaches. I suspect that I have some form of dysautonomia and will be seeing a neurologist later this month for testing. I’ll go into my symptoms and diagnoses in more detail in later blog posts. This paragraph is just meant to be an overview.
I hope this blog becomes a vehicle for greater understanding between the community who support me and myself. Thank you very much for reading it, and for the messages of support you’ve given me. I appreciate you so much.