Well, big (to me) news: tomorrow I’m being transferred to the epilepsy monitoring unit at a nearby hospital. I’ll stay for a week, two at the very most, and then be transferred back to this bed, which will be held for me in the meantime.
With the hope that information can be gathered that will refine my epilepsy and my anorexia treatment, my neurology team there and my team here have been laying the groundwork for this EMU visit for a while now. However, my recent ICU stay threw my preparation and practice for it off course since focus had to shift to getting the basics back on track. This EMU bed, in terms both of its timing and the short notice (I found out on Friday), thus took me by surprise—I’d only just started talking to my team about the EMU again, and I don’t feel at all ready to go. To be fair, though, I probably never will, given how I continue to be impacted by my past experiences there.
I do see some benefits, and not just that I’ll finally have a long-fought-for change of scenery; I’m just not fully convinced that the potential good that could come of it will outweigh the costs of putting myself in a position that I swore I never again would. Without going into too much detail, I’ll just say that the EMU has historically been a, uh, very difficult environment for me, and it’s hard to imagine being there when I’m only now getting a handle on issues that have posed extreme challenges for me in that unit even when I’ve been admitted to it from a starting point of pretty good health. All I can do, I guess, is be self-aware that this likely won’t be an easy stay and control what I can, such as by doing everything possible to keep myself comfortable and distracted. (If you have ideas as to how I can accomplish these feats, which currently seem near-impossible, please let me know!)
I’ve felt a bit more at ease since talking to my epileptologist on Friday afternoon. He has a clear hypothesis that there’s a “seizure generator” in my frontal lobe and seems confident that good information can be captured using both vEEG and a new test that he explained to me in significant detail and that wasn’t available to me during my last EMU stay and that I can’t, for the life of me, remember the name of. He promised that he won’t taper medications—a big fear of mine because med withdrawal led to my having seizures that caused pretty traumatic episodes of postictal psychosis during previous EMU visits. I’ll have a little more support this time since I’ll still be connected to the team at this hospital, and it’s comforting to know that my bed will be here for me when I’m ready for/need it.
So, yes. Tomorrow a nurse will accompany me to the EMU hospital via ambulance sometime between ten and eleven in the morning. Keep your fingers crossed that it’s a smooth ride.