So I haven’t really been around for the last year. On this blog, I mean. But also kind of in the rest of my life? I guess I just haven’t really felt like myself? I couldn’t make heads or tails of anything going on so how was I even going to write about it?
I think maybe I’ll stop ending every thought as a question now?
Okay. So I haven’t really been around for the last year. Because it’s been a mess of a year. The last twelve months have been challenging, to say the least. Life has thrown a lot of punches my way, and after a few punches I just didn’t have it in me to stand my ground anymore and so I let myself get beat up. I’ve been a bruised version of myself. Defeated, I guess.
Medically speaking, it started with a doctor poorly interpreting some test results and completely misleading me, and then it kind of spiraled from there. I was hot potatoed around between doctors, some of who didn’t exactly have great bedside manners, and so even though it wasn’t my idea or decision to be referred to them, I ended up feeling a lot of guilt about wasting their time and resources. Also I didn’t really have a diagnosis anymore. And when no one really knows what’s wrong with you or how to help you, not only do your hopes get crushed each time, but you start to doubt yourself and your experiences. You wonder if maybe everything is your fault. Maybe you’re the one to blame. I did finally end up in the office of the right doctor, except neither of us were our best selves that day and so it was honestly a bit of a traumatic appointment. And while she did have ideas about treatment, miscommunications led to major delays so nothing actually came from that appointment for another seven or eight months.
Medically, it’s been a mess. And that’s not even the half of it.
It’s also been a tough year for me in my personal life. Nothing big or dramatic. Mostly just the normal angst that comes from watching everyone around you moving on with their lives while you’re still sick. Still stuck. And there have just been a lot of big changes for a lot of people close to me, and those changes have left holes in my life. It’s the natural order of things, and I don’t want it any other way for them, it’s just really hard being the one left behind.
Oh. And then. In the middle of all of that other medical mess I ended up essentially on bed rest for about four months due to some pretty life interrupting pain. After a number of tests and invasive procedures I actually ended up in the hospital for about a week. We weren’t able to totally resolve things, but we were able to finally start that majorly delayed treatment. Except then that was its own disaster because of some intense side effects that could have been prevented had there not been more miscommunications and a long weekend.
Just another big mess. Another round of punches thrown my way. Another set of bruises. Another serving of defeat.
But then. Finally. Various new medications and treatments we’ve been trying have started doing what they are supposed to do and I’m starting to feel like myself again. My sick self, but still. Ever so slowly, I’m starting to get my life back. My sick life, but my life nonetheless.
It has been like waking up.
Waking up from a horrible nightmare. A horrible nightmare that I thought I was going to have to become resigned to indefinitely. One of those nightmares where you know you’re dreaming and you’re struggling to wake yourself up but your eyes just won’t open.
It has been like waking up from one of those nightmares.
Waking up is not as simple and straightforward as it sounds, however. Being awake is its own struggle. Because some days, even though I’ve woken up from the nightmare, I’m still living in a bad dream. A lot of days, actually. Some days are even a terrible dream.
But other days it’s a boring dream, and I mean that in a good way. And then some days it’s even a good dream. Or some parts of some days, anyway. And those days, those parts of days, are like a breath of the freshest of fresh air.
Those days are also the trippiest because as soon as I feel not terrible for even part of a day my head does this thing where it jumps ahead about one thousand steps and starts making big plans. For example, I start thinking about how I should probably be looking for a job. When the reality of severe illness inevitably catches up with me one hour…two hour…six hours later, it’s a mix of “wow I’m so silly what was I thinking” and “this isn’t fair.”
This “jumping ahead one thousand steps as soon as I feel okay for even just part of a day” thing is not new. It’s something that I’ve done every once in a while as long as I’ve been sick. It just happens to be happening a lot more often right now because after waking up from that drawn out nightmare my brain and I are kind of fumbling around trying to find our footing in New Normal.
The thing is, though, as disappointing as it is when I come back down to reality from that “wow I feel okay at this exact moment so I think I’m just all better now and let’s start making big plans” place, it’s been so long since I even went to that unrealistic place that just going there feels like a win.
And so I laugh at myself. Because what was I thinking? And I furrow my brow. Because it’s not fair. And I smile, because oh well. And then I continue finding my footing in New Normal because I’m going to stand my ground when the next punch comes along.
So that’s where I’ve been for the last year. The last messy year.
And here’s where I am now. Awake.
I feel sick every day. I’m in constant pain. Nothing about any of this is easy or straightforward.