I haven’t been sleeping well, or at all it feels like, for the past couple of months. Pain still wakes me up occasionally, but it’s not the problem it used to be since I have a guy who takes care of that now. I’m awake until 4 or 5 am most mornings, exhausted way before then, but my brain won’t let my body sleep. When I finally do sleep, I wake up shortly after in a state of panic and I’m completely disoriented, like I had a vivid nightmare, but I don’t remember dreaming at all. I’ll do this about three times before I get up to start my day, usually around 8 am, giving me a grand total of 3 hours of seriously interrupted sleep. Sometimes I can sneak a nap in later in the day, but the same thing happens. It’s weird, but I guess shit happens.
I’m not sure at what point “shit happens” became my philosophy on life, though I have a sneaking suspicion that it happened some time after my disease was given its first name. When I was inducted into the wild world of neurological disorders, the hows and whys were and still are elusive. There are plenty of theories, but nothing solid. So, again, “shit happens”.
The more I learn about the nervous system, the more unlikely it seems that anything can actually be done (I forgot where I read “If there’s one doctor you definitely don’t want to receive a diagnosis from, it’s a neurologist”, totally true) , other than managing the symptoms and trying to make modifications around the house so I don’t kill myself. My primary care doctor has taken charge of symptom management, yet I’m still asked to see my neurologist. I’ve emailed him, I’ve had tests done, but haven’t had an actual appointment since summer, despite being told to schedule an appointment at least a half dozen times since then.
The new version of dysphagia started a new chapter, in what has to be the worst Choose Your Own Adventure book ever written. And, of course there’s something else. Uncontrollable crying. I’m not talking about being sad, angry, frustrated, and then crying uncontrollably. I start crying when I feel perfectly content, with no trigger, no warning, and for absolutely no reason.
Today I was playing Devilian (think Diablo 3 meets Tera online), and just like a switch had been flipped, I started crying like someone had killed my puppy. The first time it happened was at the grocery store before NYE. I was standing by the yogurt and bam!, my eyes were flooding and my face was spazing. About the only thing I could say was, what the fuck? I told my husband I was fine, made a b-line for the b-room, and after less than 5 minutes it was over. I felt fine, although majorly confused. Crying in public is more embarrassing than passing out in public. But hey, shit happens.
I made a query about this with super doctor, since he’s the only one who won’t say “you’re crying, so you’re obviously depressed”, and he told me there’s this condition called pseudobulbar affect, or pathological crying, and to talk to my neurologist who will say “you’re crying, so you’re obviously depressed.”
I just updated my symptoms list not too long ago, then my diagnoses to date. You know what was thinking? Im-fucking-possible. There’s no way one person can have this many diseases. I should’ve bought a powerball ticket, the odds of winning were about the same as the odds of being diagnosed with a billion unrelated things.