Pacing my Illness

‘OK, I need you to do these five tests, and I’m referring you to another specialist,’ declared my GP. 

I winced. I already had a full week planned. Where was I going to find the time for all these tests? ‘I need a PA!’ I replied half-jokingly. But in my mind, I was overwhelmed. How was I going to fit everything in? 

Such is the life of those who live with chronic illnesses. Problems can flare up at any time. Doctors, tests, medication pick-ups and hospital visits can make an already-full calendar look like a neglected garage where you put things ‘until I have time to sort that out’. 

It happened to me this week. So I wrote down all the new tests I needed to take. Some were easy, like a blood test. But some of those tests were not straightforward. Some of them required regular collections over the course of 24 hours. Some of them required specialist referrals. 

Who has an entire day set aside just in case they need to do a string of tests all day?!

Don’t panic! I whispered to myself. 

Don’t panic!

I reminded my brain there are things I can do to avoid becoming overwhelmed by my medical schedule. Here are my three top tips for not letting an illness become *completely* all-consuming. My all-time favourite is up first. 

  1. Write a list. I love lists. I love writing them and ticking things off. They give me a twisted sense of satisfaction. They also help me triage and prioritise my tasks. Exactly how urgent is this? Can it wait? Which item needs to happen first? From there, I can come up with a plan. 
  2. Get a grip. On the road trip of chronic illness, there are going to be times when I am driving and times when the illness is behind the wheel. But even when the illness seems to be in charge, some things are still within my control. I find it helpful to remind myself of those things. Then I get a firm grip on them. I can’t do everything—so I choose to focus on those things I can actually do something about.
  3. Pace yourself. In our culture of over-busyness and over-scheduling, it’s easy to get swept away by the apparent urgency of medical ‘have-to’s. Especially when a doctor reinforces it. But not everything ‘medical’ is urgent. Some stuff can wait without compromising our health. In the example of my blood test, it didn’t need to happen that same day. So guess what? I decided it could wait until the end of the week. And that is healthy. It is healthy for us decide how much insanity we allow into our brains and calendars. It is healthy for us to do just a little bit at a time. It is healthy for us to choose whether that small, controllable part of chronic illness consumes our lives or not. That’s pacing. 

I used to feel like my chronic illness was spiralling out of control. Yes, my illness was flaring and making life difficult. Yes, I had no answers. And yes, chronic illness burnout is a thing. 

Chronic illness burnout is a thing.

But it was the administration around the illness, the chasing of results, the referrals for specialists, the rushing from work to radiology or pathology for yet another test before they shut, that was making me go from illness-crazy to all-out-crazy. 

The good news is we have *some* measure of control over *some* of our illnesses. So let’s exercise that control. (It’s the only kind of exercise I actually endorse.)  

We do have *some* measure of control over *some* of our illnesses.

The more we can do to pace that stuff—the stuff that lies within our control—the better. 

Do you have any tips for surviving chronic illness? How do you manage the relentlessness of medical appointments? What advice would you give to a friend in your shoes? Share your story. Let’s have a countercultural conversation. 

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