Just Give Me a Name
I'm about to repeat a sentence I have read on nearly every single other spoonie blog I follow, so apologies for the lack of originality. The truth is I'm writing this post from my bed. I have an ice pack on my neck and shoulders, a heating pad on my lower back, the lights turned off and here I am... typing away to distract from the nausea vibrating through my nerves. I had a pretty good week last week, enough of a good week to forget how sick I can be. Well enough to forget this feeling that, whenever it returns, feels like it has always been lurking over my shoulder. Then Monday something kind of shocking happened: I got a diagnosis. This isn't to say that this diagnosis set off my current laying in the dark icing up like an aging football player scenario; that was going to happen anyway because as I have learned - flare ups just happen with very little rhyme or reason. However, this one is different because now I have a name for it, and its a long one. Myalgic Encephalomyelitis (I will always have to copy and paste that) aka M.E. aka Chronic Fatigue Syndrome. The diagnosis itself isn't shocking, I have assumed for months that this is what I have. I was shocked that my GP actually said the words to me.
I had planned on keeping my symptoms, the details of my chronic illness, more hidden until I knew more. I was afraid to broadcast my experience, opening myself up to criticism. The critic in my head is always overpowering and all it takes is one person taking their side for it to overwhelm me. However, I want to write about this in the moment and really capture how this feels in this first week of diagnosis. To do that, I need to start from the beginning.
Six months ago I was establishing myself in my dream job, working as a production coordinator as well as doing programming and outreach work for a small museum. I had moved back to the city I went to college in, along with my best friend, after graduating from my masters program. I was really seeing the outcome of many years of sacrifice and hard work - both emotional and physical. Moving back, I very quickly met and fell in love with my partner and at that six month mark I was going out to California to meet his family and spend New Years with them. That trip was the last time I have been well, but I think there is much more to it than that. I got sick on that trip with a virus, took a red eye back to North Carolina and immediately got back to work. Very soon after, I started experiencing debilitating migraines which soon evolved into episodes where I would lose control of my body, white out and nearly faint (I have now learned this is called pre-syncope). My heart rate would race, my limbs would go numb and I would lose vision and my ability to control my body - having tremors and hyperventilating. In one particularly bad episode, my partner made the call that we needed to go to the ER where SVT as well as POTS were speculating about but in the end, they just sent me home and told me to relax. Unfortunately, that was the night before a massive arts event that I had been planning for months. I was the ER most of the night strategizing how I could maneuver a wheelchair around a camp in the mountains, desperately not wanting to leave my team in the lurch. In the end, I woke up the next morning barely capable of walking, let alone working, and with the help of my partner and co-worker/friend, I did the bare minimum before crawling back into bed. I was completely defeated.
Things have progressed like that since and I have had to make difficult calls along the way, the hardest of which being to cut down my hours at work in order to get the rest I need to function in my position and also hold a coherent conversation with my partner when work is over. It quickly became clear that I couldn't power through these episodes and that as much as I wanted to control this, it wasn't my choice to make. I am still working out the logistics of this and hoped that a diagnosis would help me navigate my work/life/side hustle of being sick balance. That remains to be seen, though I am lucky enough to have a flexible job with supportive bosses. Since that massive episode in March, I have had literally countless tests - my doctor asked me the other day if we had run autoimmune tests and we both had to consult a stack of papers as thick as my masters thesis for the answer. These tests have including an MRI, EEG (fuck that test, fuck that test... that's its own post), and a wearable heart monitor that made me feel like a robot. We got some information but my GP, as well as my neurologist, seemed stumped. I kept getting calls telling me that my results were normal which, if you haven't been through it yourself, you wouldn't expect to be as infuriating as it was.
Over the weekend, I was questioning my next steps. I now knew I wasn't getting better any time soon and that I didn't have anything super scary wrong with me (of which I am very grateful but I also never though I'd be angry with a nurse for telling me I don't have epilepsy). I also had two more doctors appointments on the books for the week ahead and made the decision that if nothing came of it, I wouldn't pursue any more until something changed. So, when I saw my GP on Monday and she very quickly told me she thought I had M.E., I was overjoyed, relieved, and completely shocked. I had read about ME hundreds of time over the last six months but resisted bringing it up, wanting my doctors to come to the conclusion on their own. The fact that I didn't even have to push for this diagnosis was the greatest relief. In the scheme of things, a six month period of testing is truly remarkable compared to many others' experiences. I have gotten very lucky.
Now I'm facing my first flare up with a definitive diagnosis and I do have to say that I feel less scared and much more empowered. I had come to terms with the fact that I was dealing with a disabling condition, it has just been such a relief to know what to call it and to stop doubting myself. I know that this cycle of self doubt won't stop, particularly with a controversial diagnosis like M.E. but that will be part of the process. I've been diagnosed for two days and have already had a neighbor tell me that its "bullshit." Thankfully, I feel prepared.
I hope to do a blog post soon about some of the revelations I've had along the diagnostic process, but for now I wanted to get my thoughts onto the page. This is a life milestone you can't prepare for but it feels comparable to moving into my first apartment alone or finishing grad school - I'm daunted but I also know that I will learn a lot about myself and the world. Thanks for listening and thank you to everyone who pushed me to keep digging. I'll keep you posted in this new world order.
Image: Photograph of a dresser with neon light, a feminine medical models and cosmetics via ladyscout.tumblr.com