3 Months after the ICU: A Surreal Normal

Every time I wash my hands or brush my teeth I see it in my washroom mirror. The line at the base of my throat, a barely-there horizontal divot that is the only visual reminder of my medical adventure. It jolts me every time, bringing back a moment of memory so intense that for a split second my core is shaken. It feels like a speeded-up movie reel of hospital highlights plays within me, plucking at all the senses involved in the memory. Everything I felt — fear, curiosity, helplessness, frustration, to name a few — overwhelms me. And then I get the soap or toothpaste and life continues.

You might wonder why I get that surprise so many times a day. After all, it’s only been three months since I got home from the hospital. Surely I still remember? And yes, all of that is true, yet there it is.

 April 16, celebrating with the Tinks, 
only a few hours away from being discharged 
from the hospital
(Photo by Janne)

Life has in many ways returned to normal. I’m back in my routine, puttering through my life more or less as always. There are groceries to buy, bills to pay, errands to run, doctors’ appointments to go to, work to do, a cat to cuddle, The Boy to love, friends and family to talk to.

In other words, normal. And it makes it so easy to forget — i.e., repress — everything that happened just a few months ago. Most of the time.

Much as I try to focus on the normal, there are still things that remind me that my life is not normal quite yet.

Although my hands are better, the swelling having subsided enough that I can wear my ring again (which makes me very happy), my little fingers still buzz and more so when I use the computer.

My pain levels go a bit wiggy at the slightest provocation and I have to be careful with how much I do. Although I went back to work, I am nowhere near my previous capacity. Although I might do things during the day, the evenings are a wash. Three months in, I still need an extra lie-down in the evening and when I do, a mere three hours after getting up from my daily nap, my body whimpers in relief.

The biggest reminder, though, is the fatigue. And it drives me crazy.

April 16. Sisters. 
(Photo by David)

I am tired all the time. It doesn’t help that I spent June having tag teaming illnesses — first a cold, then a sinus infection, and then a massive case of laryngitis. That tends to sap your energy, but they also sent a message loud and clear. Namely that I went back to work too soon.

As of July 1, I took a leave from work, regardless of how nervous it’s making me about the state of my bank account. It’s taken me two weeks to feel more like myself. Still tired, but not completely exhausted.

Did I mention it’s driving me crazy? My wonderful friends keep reminding me that I had a really significant medical crisis and it is only to be expected that it will take a while to recover. I have no issues with that. What I take issue with is how long that ‘while’ is taking.

It reminds me of when I was recovering from the Big Flare eleven years ago. When I first started Enbrel, every day was a new discovery as I regained strength and ability. Every day, I could do another thing again that I hadn’t been able to do before. And then it became more subtle and felt as if there was no progress. Only when I would do something that required significantly more strength or which I didn’t do often, did I realize I was still improving.

April 16. The Boy and I
(Photo by Janne) 
It is like that all over again. I have regained the immediate and more obvious abilities, and now it feels as if I have plateaued and the frustration nags at me daily. And then I’ll realize that I can now lift a whole cup of tea, and it is easy to put it in the microwave without spilling. And so on. It is a moment of joy, of realizing that there is progress. I need to focus on this, because that is the way to being happy.

But it is really hard. The fatigue overwhelms me so often. When I spend days recovering from seeing a friend, taking a walk on the Islands, writing a blog post or article, or simply puttering through the day without doing much, the frustration and disappointment bubble to the surface. I’m beginning to realize that the strength I had in February has not been lurking underneath, waiting to burst forth and snap me back to normal.

I’m grateful that I am alive. This goes without saying. But the whole experience feels so far away and as foggy as a November day by the sea. It makes it difficult to understand that I mostly feel like myself, yet still have a long road back before I am truly myself again.

Then I go to wash my hands or brush my teeth and for a moment, it all makes sense. 

And then life goes on.




Oh, my heart.

Moment by moment, day by day, week by week ... you are only getting stronger. Sending you love, patience, comfort, and joy, sweet, courageous Lene. Breathe. :o)