This last week has been a hard one. I haven’t broken any of the rules; I have managed my rest, medication, self care, calendar and I have even been very good at asking for help when needed. In many ways, this past week has been the poster child of what a good chronic illness week should look like. …..Except for one thing: I have been plagued with an unusually high level of lethargy, brain fog and general (both physical an emotional) fragility. My body is far from it’s best despite the care, and my soul feels more than a little battered and bruised.
But worse than all of that is that I have been struggling to write, struggled to be with people without being completely wiped out, struggling with motivation during the day and sleeping like a log at night (which is unusual for me). For much of the past few days I have felt somewhat unsafe on all kinds of levels, and basically I just want to curl up in a ball and sleep for a week. To hide under a rock and never come out…
It isn’t depression exactly. I know what that feels like and how it tries to creep into my life and why. This is close to that but somehow a little different and I couldn’t quite put my finger on it.
But then today as I look back I realize a few things. The new specialist appointment this week was a new one. It required quite a long drive to a town that I have never been to before. That meant a lot more pre planning and leaving much earlier than I would need to if I knew where I was going. But that is OK, I planned for all of that in the schedule and my self care plan. (“pat myself on the back here”).
A new doctor also meant a much longer consultation, filling in loads of forms, answering nearly an hour of vital and valuable questions. But that too is OK, because I planned for this as well. I had my file, my list of medications, my medical history, everything that would be needed so that it was easier on them, and easier on me. (“well done Jenn!”)
Then it involved a physical examination as well. This was the “least bad” one that I have ever had. She could not have been more kind, more gentle, more helpful or more respectful. It was also both thorough and quick, she didn’t waste time checking anything that she wasn’t specifically looking for. I came home form this appointment feeling more positive than I have for a long time. It was a good one.
So why do I feel like this? Why do I want to hide from the world and why do small things like writing exhaust me? Only last week I wrote nearly fifty thousand words for my book and it empowered and energized me, but this week I felt exhausted by the end of the second paragraph here. I feel thoroughly depleted on so many levels.
So what is different? What is the new ingredient this week? What has wiped out all my emotional and physical resources? I realized this morning that I am suffering from what I call vulnerability exhaustion. Many people think of medical forms as purely factual and inanimate. But they aren’t at all. Every tick, every answer, every label, every diagnosis, …is a story, a journey. Each one was a failure, a triumph, a win, a loss, a fight or a battle.
Each and every small tick on the paper could represent a myriad of tests, a fortune that I didn’t have, ….weeks, months or often years of agony, denial, fear, outrage or even a journey to acceptance. Each single tick could include a number of life threatening experiences that we could easily have lost.
Over the years my body has been exposed, touched, poked, prodded, tested, analyzed, traumatized and worse… by hundreds and hundreds of individuals, most of whom would not even remember my name, ..or worse, never even knew it in the first place. And amazingly, each new doctor or specialist has the power to override every tick, to belittle every story, to brush aside every diagnosis, and with the strike of a pen to turn everything on it’s head. Which would be great if that was a good thing … but it rarely is.
It takes a tremendous amount of vulnerability to open up my body and soul, to expose myself to a complete stranger, to invite them in, to ask for their opinion, to let them have a say …yet again. For the potential gain of perhaps the smallest amount of life saving or life changing help, I need to take the risk, to give them my all, to expose the deepest, most painful parts of me, to condense them to a few paper forms and a handful of sentences, is mindblowingly scary.
I had never really thought that through before but this week I guess it was all amplified by a number of other vulnerable experiences like a particularly eye opening Psychologist session in the week and a couple of quite intense conversations with people who I don’t really know very well.
Everything about the week was carefully planned, but I think in the future I need to allow more for the effect of vulnerability exhaustion in all kinds of obvious situations.