So, imagine you’re out to dinner. You’ve been there before and everything was good. But this time, your dinner was awful. The service was Olympic record-breaking slow. The waiter was rude. The restaurant was dirty. But then, management comes to your table, apologizes for everything and brings the most delicious dessert you’ve ever had.
That’s kind of what the last month has been like for me.
In mid-June, I had four seizures very close together. Three were pretty much back-to-back (three days in a row). They were all in my sleep so I don’t remember anything about them. I just woke up incredibly sore, progressively more-so each day. There was also a lot of accompanying anxiety that I always feel when seizures are clustered in this way. Anxiety that stems from not knowing when they will stop and the effect they will have. In this case, the effects were quite far-reaching.
When my seizures happen in my sleep, which is most of the time, I have a rather strange prescription to help stop them: I stop sleeping. It actually stems from fear more than anything else, but it is still odd to me. Lack of sleep is very dangerous in my situation. However, I still seem to get sleep deprived after having multiple seizures. This last month was certainly no exception.
Over time, this led to a complete reversal in my sleep patterns. I was sleeping all day and up all night. Long after the seizures stopped, long after I was somewhat assured that there was no longer a problem in that area, I now felt like I was living in an alternate reality from everyone around me. There were only a few hours each day where I was awake at the same time as everyone else. And because I wasn’t getting out or communicating with others much at all, it was a stressful situation that could have easily compounded and led to more seizures.
That is why I call my no sleep prescription “strange” (and dangerous).
In order to get my life back, I decided it necessary to have one simple goal. I had a lot of (really good) advice coming my way at this time, but my exhausted brain could only handle one task. So my only goal for the last week or two has been to fix my sleep schedule so that I could get back to work. That was it. I didn’t care about my lousy diet, which was purely based on convenient stores that were open 24 hours, or not getting any sun, or not taking care of my skin. I knew I could do all of those things when I was rested. But in that moment, I was laser-focused on sleep and sleep alone. The rest could wait.
And it worked. While I still have a lot of sleep to catch up on, I’m back to sleeping at night. And, most importantly to me, I’m back to work.
A few days ago, I had a neurologist appointment. And I walked out with more hope regarding my diagnosis than I have in many years. We discussed the possibility of surgical treatments, given the dramatic advancements that have been made since the last time I was tested nearly a decade ago. After I finish with school in January, I will go in for EEG monitoring. I honestly cannot tell who is more excited, myself or my family.
This whole experience has been very surreal. There’s a very stark contrast between what my life has been for the last month (nothing to do, no one is awake) and then waking up this week and having responsibilities again. Living in the real world again. It has been a bit jarring, but in a good way. A VERY good way.