How do you create a habit when you have zero concept of how you’ll feel the following day? How can you set a goal of running Mon, Wed, Fri when you can easily wake up one of those mornings and feel as if you already ran a marathon that day? Or perhaps you try rolling out of bed but as soon as you put weight on your feet, your knees scream out in pain? What if you end up with an emergency deadline at work that stresses your mind so much your body reacts and insists you have a 3 hour afternoon nap instead of going for ride?

The realities of chronic illness: you never know how you’ll feel that afternoon…the next morning…or if you’ll be sufficiently recovered in 2 days time. I’m obviously speaking from a lupus perspective but anyone with a chronic illness will be able to relate.

For those of you lucky enough to have sidestepped these terrible illnesses, perhaps I can ask you to read through in order to provide you with a slightly better understanding – an increased empathy – of what a friend or family member is experiencing. Autoimmune diseases are ridiculously common and even if you don’t think you know someone with one, you probably do and they just haven’t told you. Because that’s the thing with these “invisible diseases”: you can’t really know just from looking. Not all of us require mobility assistance and I can almost guarantee that anyone experiencing chronic pain or illness will downgrade how they’re feeling if you ask. Do you remember how you felt last time you had the flu? That’s how many people feel every, single day and (here’s the kicker): those are considered “good” days. Hungover recently? That is what people mean when they experience brain-fog and are tired.

In a group I’m a part of, a post recently stated that “Physical activity is important but the thought that everyone with chronic pain can exercise is harmful.” Very true. What has been working for me does not simply transfer over to another. I’ve struggled with this, even having doctors telling me I need to move more. Last April, when I was unable to walk 100 m, one of my specialists was encouraging me to amp up my activity, to do ‘something’ that would get my heart rate up. I would push myself, through the pain and exhaustion, to try running or getting on my bike. In hindsight, this was horrendous advice and likely resulted in a more difficult recovery. Eventually, I broke my shoulder and that was an end to my physical activity for quite some time. It was at this point where I finally allowed my body the time it needed to heal.

Upon my recovery, I began to incorporate additional activity into my life. Alas, in my excitement, I would be “encouraged” to engage in activity that was still “too much” by well-meaning friends. I was cognizant of my weight gain and my medical team was gently (truly, very gently) suggesting I should start focusing on limiting – and reversing – that gain. I made myself a schedule, one that was not too ambitious or aggressive, and that manage. I still find myself seemingly feeling fine one day, attempt some type of exercise, and discover my body is not willing to cooperate. It’s hard explaining to friends, once we’re out, that “sorry, I have to turn around”.

With so much turmoil, how do you create healthy habits? How do you commit to an exercise regime? What can be done to lose the inevitable weight you’ve gained due to a combination of meds (I’m looking at you, prednisone!) and inactivity?

I actually have found the answer: do what you can.

Four words. It can’t be that hard to figure out, can it? Alas; yes, yes it is! It comes down to self-analysis and, quite frankly, most of us suck at it. You have to truly listen to and understand your body. You have to recognize when you’re body actually needs to rest versus when you’re just using it as an excuse. Furthermore; you can’t allow anyone else’s expectations (yours included!) to define your levels of activity.

When I could only walk 100 m, I reminded myself that a few days earlier I couldn’t manage 25 m.

Now that I can only handle a 15 km hike, I have to shake my head and remember that, at one point, I was unsure if I would ever walk again.

I have had to learn to accept that even though I may manage a 15 km hike one day, the following week I may have to accept I need to turn around after 2 km. Sometimes there is no rationale. Planning our weekend getaways this summer, I made sure I had enough books to read “just in case” I needed the down time.

Do. What. You. Can.

Don’t listen to others’ standards or expectations.

Getting to the end of the block is an accomplishment and worthy of celebration (just as much as completing an Ultra is!).

Do you have a chronic illness? What do you think? Any other ideas or suggestions on finding that balance between exercise and rest?