I’m having a really hard time and for once, it’s not really about my brain. Or it is, but not in the usual way.
This past spring, I was travelling a lot for my state level work. My state capitol is about 5 hours drive at the rate at which I normally travel. (For those that don’t know, Pennsylvania is a huge state.) For a large chunk of the Spring I was going down every week, and when I wasn’t it was every other week. By the time June hit, I started having some really strange symptoms. I was having random fatigue, cognitive fuzzy episodes that weren’t affiliated with fibro flares, and confusion. At first I thought that maybe I was having seizures, but it wasn’t QUITE matching up with seizures and I’d had an EEG in the past year or so.
And then the symptoms got worse. I was falling asleep at random times. The episodes I had been worried about were escalating. I had never been able t o just “go to sleep” at night, but now it felt like I had no control over when I was awake or asleep, and sometimes I felt like I was asleep while awake. This was something I recognized. My mother has them if she isn’t obscenely strict about her diet and exercise.
I don’t know for sure that I have the same thing she does. But I do know that the drug that treats it almost completely is something that my MCO covers, I have a family history, and it fits. We’ve started the process. I’ve had the first sleep study and have a heart monitor test being scheduled. Unfortunately it is a long diagnostic process with a lot of things to rule out. And that’s the problem.
The symptoms have eaten into my quality of life, and knowing that something could help but that I’m looking at 6 months to a year of tests is making me miserable. And really, there’s nothing that I can do to change it. I just need to hang on and pray that it doesn’t tank the opportunities I have right now.
There’s a concept in the disability community called “new normal.” It basically means that, if you acquire a disability, you are going to have a new baseline in life. Human beings are amazingly adaptable creatures. It’s one of several advantages of our species. Once given a chance to adjust, we live. Eventually it’s more than survival, it becomes life. Morning cup of coffee normal. Taking the dog out to pee normal. Eventually, rolling in a chair becomes normal. Using a cane becomes normal. Taking medication every day becomes normal. You learn new ways of doing things. You adapt. It can take a while, but eventually, it becomes normal.
It’s really hard when you’ve adjusted to your own normal, and then you get another new one. And this one is harder than when the fibro and the joint damage from the hypermobility hit. I really missed dancing and I missed that I used to be able to push myself without hyper extending and hurting myself. I missed that at one point in time I could walk from Foggy Bottom station to the Capitol via the reflecting pool when visiting DC, but now I can’t walk around my small town for an hour without injuring myself enough to be out of commission for the next couple of days.
But adjusting to not being able to have confidence in my schedule is a lot worse. I slept from 5am until 9:30pm yesterday, and was still in a fog. I’m frequently sleeping between 12 and 18 hours a day, but not always. Some days I can’t get my self to sleep all the way, just to that stage between being awake and actually sleeping. And then some days I end up with a normal sleep schedule. Some days I’m on the ball, and there’s no real fog beyond the fibro fog that I’ve gotten used to. It’s the uncertainty that is making me feel defeated, more than I ever felt with my other acquired impairments.
It’s hard to change and to adapt when you have no clue, and when the things that let you still engage with life won’t cut it. When I’ve been having fibro episodes or GI episodes, I could always participate in the world online. It’s one of the advantages of some of the work that I do- being a social media specialist means I can work from bed if I need to. I can even work from a bathtub filled with epsom salts if it’s bad. But that doesn’t work here.
Thankfully I’m a workaholic and catch up easily, but that doesn’t help the missed phone meetings, and it doesn’t help if I fall asleep in a meeting when I travel. Thankfully I know enough ahead of time to get out of dangerous situations- it’s not at all like the movies thank goodness. I usually have a half hour warning when I start to feel an episode coming on, I’m not going to leave the oven on or drive off the road or anything like that. Additionally, my service dog knows enough to warn me if I’m not in a safe position well before I even know. And the times where I’ve fallen asleep in public- for example, I missed the chronic pain session at SDS because I couldn’t wake up from my “quick nap” after lunch on the couch in the vendor area, which I attributed at the time to chronic pain- she’s stayed right by my side to keep me safe.
But I can’t always count on people understanding that this is out of my control until we finish the diagnostic process. Even people who are 100% understanding about my trauma stuff, or my pain stuff, or even my being autistic stuff won’t necessarily get these particular symptoms. It’s difficult to look professional and engaged when you have no control over if you are alert or not. It’s difficult for people to get that I can be passionate about things and still end up sleeping and drooling (and not wiping it up before people can notice like I normally do) on the power point print out. Usually I can get around that in the moment- I’ve done it, pushing an episode off an hour or two- but it has consequences that aren’t ones I can do full time.
Thankfully my travel schedule is less hectic right now. Thankfully I’m IN the diagnostic process. Thankfully we have some idea (thanks family history!) of what it is. Just… pray with me, if you do that sort of thing, or send out good energy/thoughts, that it is indeed narcolepsy and not something less manageable under modern medicine. Because otherwise the adaptation might mean changes that I won’t be able to be supported through, and that could derail this already adapted course I’m on.