My name is Whitney Fox. I have myalgic encephalomyelitis and I want to talk about it.
It’s a big word. It’s difficult to understand, whether I’m trying to pronounce it or manage it. I just think, myalgic enceph≈≈≈≈≈≈≈≈≈itis. It’s myalgic encephƣƪƱɯˠɝɭȋʧϨ.
For now, we’ll call it ME.
That’s “em – ee,” the first letter of each word. Not ME like I’m really excited to talk about myself. Sidebar: I guess since I’m starting a blog, that means I actually am excited to talk about ME!
The defining symptom of ME is post-exertional malaise. This means that after minimal activity, I am often left bed-bound and sleeping for hours. No matter how long I sleep, I never wake up feeling refreshed and often feel worse than I did before falling asleep.
It’s more than just being tired. It’s the kind of exhaustion that doesn’t get better with rest and sleep. Where you wake up with no idea where you are or what time it is. Like jet lag after an overnight flight and a time change. Or like the crashing feeling after you finished pulling an all-nighter to study, finished your exams, and finished your shift at work. It’s a new kind of tired that makes it so that I can’t function they way I did before – mentally, physically, and emotionally.
There is an easier name for ME. It’s also referred to as chronic fatigue syndrome. Chronic – it is constantly recurring. Fatigue – it is extreme tiredness. But that name has a bit of a stigma, doesn’t it? That’s why I prefer to call it ME or ME/CFS.
I want you to take me seriously, believe me when I share my symptoms, and respect this diagnosis. According to the patient advocacy group #MEAction, 75% of those affected are unable to work and 25% are homebound and bedridden. It is very serious and debilitating illness that does not receive the funding and research that patients deserve.
My goal with this blog is to connect with others who have chronic illness so that we can celebrate and commiserate. I also want to spread knowledge of my chronic illnesses to those of you that don’t have them, so that you might understand what we go through on a daily basis.
As I learn to adjust to my illness, I hope that you’ll be understanding. I will complain, so if you want to listen, thanks for letting me vent. I will also find things to improve and I hope you’ll celebrate with me and share my happiness. I am a highly-motivated, Type-A perfectionist, so adjusting to my illness and managing my symptoms is difficult.
The first step is taking myself seriously. As of today, September 17, 2019, I have been experiencing these symptoms for more than 8 years. I received a diagnosis in late-2018. Months later, I have finally stopped googling symptoms trying to find anything else that might be causing my symptoms – something that’s easier to treat, with a known cause, and less stigma. Something that isn’t chronic and won’t be lifelong. Now, I have accepted my diagnosis. I’m going to treat myself with kindness. I’m not going to blame myself because I am not my illness.
I hope you will treat me this way too. It’s going to be hard for me to maintain, so I understand that it might be difficult for you too. I hope I can just ramble through a bunch of metaphors, get it off my chest, and know that somebody understands and thinks it sucks and is on my side.
In this blog, I’ll talk about my symptoms and ways I am treating them. I’ll try new things and complain when I fail and celebrate when I succeed. I’ll talk about my journey with ME/CFS and my other diagnoses – hypothyroidism, autoimmune thyroiditis, irritable bowel syndrome (yeah, we’re going there), fibromyalgia, and POTS.
Thank you for joining me!