Being chronically ill is hard. Beyond the physical frustrations and limitations, there’s this sort of self-imposed isolation. Slowly, you stop showing up to social gatherings. Your body doesn’t allow you to keep going from the work week into the weekend. Hiding out under a blanket with a heating pad and the entire series of Parks and Recreation is much more appealing than riding in a car somewhere or trying to cope with unknown venues. Even sitting in a theater for a movie or music performance takes planning and more energy than it ever should.
I found that when I hurt my back the friends I’d helped suddenly vanished and never even inquired about how I was doing. (Luckily, Tesco and the local farms delivered. Healthy food delivery is one of my favorite things of this interconnected world…) My fatigue and pain-addled brain didn’t care for texting back-and-forth, and I was in no position to host anyone if they’d cared to pop by.
The past year or more I’ve lost touch with people who were my closest friends. My back acts up at the most inconvenient times, and without adequate pain control I have to resort to taking Tylenol and a muscle relaxant which makes me loopy. I’ve missed a couple of girls’ nights, a pumpkin carving party, dinners out, and picnics. It’s depressing and difficult to think about all that I wanted to join.
A few weeks ago I went to a wonderful theater performance. I’d planned it all out–my husband would drive, I’d make sure to walk during the intermission, and then the next morning I’d recover a bit with Pilates. When my husband got home we would do some shopping (which generally helps since I’m moving the whole time). Then, I would be good to go for a movie night. Of course, when we got there it turned out that the seats restricted my knees more than expected, making my back bend for the duration in an uncomfortable way. The next morning, my instructor was ill and canceled about an hour before class. Despite all my careful planning, I couldn’t make it to the movie night when my back gave out while grocery shopping. In the moment I can’t think, I don’t care about time, and all social graces go out the window because I unconsciously have to prioritize the pain above all else.
I tend to do better when we’re hosting or when meeting out somewhere, as then my husband can drive and take away a little of the pain for me, but obviously that doesn’t always work. As illustrated above, I can plan as much as I can, it still can go horribly wrong.
It’s also incredibly difficult to schedule anything during the week. Mondays are my late nights at work, so I get off at 7:00 PM. The rest of the week, I have acupuncture or Pilates, and my early mornings mean I need to start making my way to bed around 9:00 PM. I almost always feel like I’m running on empty, and so of course my social calendar is the first sacrifice.
There’s no way around it: this isolating feeling SUCKS. It’s hard, and it does little to help a chronically ill person recover or be in higher spirits. It’s one more frustration in one never-ending, ginormous ball of anger and exasperation. I suppose all I can do is do what I do best: plan and keep going no matter if those plans work out or not.