I can hardly fathom what a difference a month can make.
The cognitively debilitated, anxious girl who wrote December’s monthly resilience report is closing January feeling like a markedly different person. Thanks to some milestone moments that included receiving plasmapheresis, IV steroids, and tocilizumab (Actemra)…
I started these reports thinking that they’d be a low pressure, fun way to document progress. That by the end of 2020, they’d help me warmly reflect on how far I’ve come from my spring AE relapse.
But the scary thing is that we’ve now arrived at the last day of the year, and the so-called “recovery” remains an elusive, faraway dream. I’m well aware that there are no guarantees when it comes to how well one recovers from AE; still, I had one promising, personal data point to draw from. I weighted that one highest.
Good news! Bad news! Good news!
…and repeat!
Every week brought some different health surprises, the details of which matter much less than how I’m closing out this month (more on that later). Let’s just say that when there are multiple professionals on your healthcare team, the strain in coordinating communications and getting them on the same page becomes bloated.
The world that doctors live in…
The classic story arc of autoimmune encephalitis goes something like this: a patient presents to the hospital emergency room with an abrupt onset of psychotic features that include hallucinations, paranoia, anxiety, and strange behavioural changes.
Eat, make some calls, attend appointments, peruse medical journals, sleep, repeat.
Most days were an exhausting barrage of monotony, all in the name of attempting to move my medical recovery forward. It’s mind-boggling how much time can be consumed just coordinating medical logistics, not to mention the cognitive fatigue that arises from keeping tabs on multiple moving parts.
Sometimes it isn’t so obvious what we mean by the term brain fog. It gets tossed around in circles ranging from those sick with the common cold, to people who are aging, to those that are overworked and without their morning cup of joe. So what do we really mean by it?