A Mysterious Illness Took Me Offline for a Month, and I Found a Blessing in that Curse
About a month ago I began having some mysterious symptoms of an illness that my doctors have still not been able to diagnose. At first I merely off, like I was coming down with a cold perhaps. Within a day, though, half of the inside of my mouth was numb and I had vertigo so severe that even the smallest movement of my eyes triggered intense nausea and made me feel like Alice falling through the looking glass. I went to my primary care doctor, and she assumed my symptoms were due to a viral infection. Not wanting to give me a generic anti-viral that would probably have no effect, she wrote me a prescription for anti-nausea meds and sent me on my way. I'd been drinking multiple cups of ginger tea a day, but they had only a minimal effect on the nausea, so this was one instance where I turned to allopathic medicine.
After a couple days the anti-nausea meds did rid me of the nausea, but the vertigo was still so intense I could barely move, and the numbness in my mouth had spread to the outside of my face as well. I could no longer feel my tongue, teeth, gums, jaw, lips, or cheek on the right side. About two weeks into this ordeal I also developed neuropathy on the left side of my face. It was different than the numbness, which was (and still is) more of a dull, tingling numbness. Instead, the neuropathy was (and also still is) a feeling of coldness and extreme sensitivity to touch. The neuropathy also appeared occasionally in my left foot and leg as well as my left hand, arm, neck, and scalp. Needless to say, I went back to my doctor, and she was stumped.
After talking over my symptoms with my primary doctor, she drew blood to run labs and sent me for an immediate CT scan of my head and brain. My labs came back completely normal. My CT came back showing some abnormal white matter on one side of my brain, which probably explains why my symptoms are only showing up on one side of my body (although not why both sides of my body are affected by different symptoms).
All of this is to say that for the past four weeks or so I've been dealing with some weird, annoying, exhausting, and at times frightening, symptoms that are still unexplained. And throughout these four weeks I've been focusing all my energy on trying to find out what's happening with my body and attempting to stay sane as I do so. This whole process has been exhausting, both physically and mentally, so I made a decision, or, more accurately, my mind and body made the decision for me, to retreat into my shell, my home, my comfort zone, and channel some serious Hermit energy as I moved through this illness.
My retreat occurred in the real world and the virtual one. Due to the vertigo, I found it incredibly difficult to drive and only did so when absolutely necessary. I took about two and a half weeks off work and stopped going out to do anything social with friends. Physically, it was just too difficult to move. Mentally, it was just too exhausting. So I stayed in. But I also stayed off social media. I was on Facebook for a bit, but I only opened Instagram maybe two or three times in the past four weeks. And I have to say, it was kind of exhilarating. I stopped feeling like if I didn't scroll through every post on my phone every few hours I'd miss out on something. I stopped worrying that if I didn't post at least once a week I'd lose followers and potentially clients and customers. You know what I did instead? I read about herbs and medicine-making. I updated my website. I thought about the direction I wanted to take Mystic Sister. And I did all of this without being influenced by all the people who have similar businesses on Instagram.
I follow people on Instagram because I care about their work and am interested in learning from then and seeing what they create, but I admit that I often get so caught up in what everyone else is doing that I lose sight of what I actually want to create and end up, consciously and unconsciously, trying to look like everyone else. Instagram is a powerful tool and an amazing source for new friendships, but it's also an addictive platform that I sometimes lose myself in, and that's not healthy for anyone. So I'm trying to do things differently.
Now, four weeks into this mysterious illness, the vertigo is almost gone, and the neuropathy is not showing up in my foot at all and only in my arm at night when I sleep on that side. But my face is still uncomfortable. (Feel free to make a "your face makes me uncomfortable too" joke here.) The left side still has constant neuropathy, and the right side is still numb. It's so numb that I've only eaten on the left side of my mouth for a month because I can't taste anything on the other side and I can't feel if there's food there or not. The two times I've tried to eat normally, I've ended up choking because I can't tell where the food is or how much it's been chewed. Also, because I've only been chewing on one side of my mouth, I've exacerbated my TMJ to the point where my jaw is so misaligned that when I bite down my teeth don't even meet on the right side of my mouth. I'm currently trying to find a neurologist who can see me this month, but the four I've called so far cannot get me in before August. For now, this is my new normal.
I'm feeling well enough now to go out and to get back on social media, but I'm trying to cut down on my time online. Even though this illness, whatever it is, has worn me down to an exhausted shell, I feel like I'm beginning to fill that shell back up with what's important. I'm getting back on Instagram, but I'm going to unfollow a bunch of people so that those who are left are the ones I really care about. Inversely, I'm going to try to post more often, but I'm going to post things that further the growth of Mystic Sister. I'm going to make my time online meaningful and conscious rather than rote and obligatory. I'm going to grow Mystic Sister into what I want it to be instead of what I think will be popular and will sell products.
I don't know where this illness will lead, but I feel hopeful that all will be well. In the meantime, I'm going to make Mystic Sister the magical haven I initially envisioned it to be.