My Non-Negotiable Chronic Illness Rule

I love life’s little challenges. I love problem solving and turning obstacles into opportunities.

I love putting positive spins on what would otherwise be a very negative situation. I’ve done that all my life, both in my personal life and my working life.

So, chronic illness really wasn’t going to change that about me. It’s just another of life’s challenges. Right?

Well, sort of right! It’s probably one of the more difficult challenges life has thrown at me, and it often requires strategies I wouldn’t normally employ.

When I can stick to what I call my Chronic Illness Management Plan, life has a stable flow, despite the unpredictable nature of my disease.

The flow consists of routine daily activities, rest, activities, rest. Pretty simple. It works for me. It’s very limited physically, and it’s a home-bound routine, but as I’ve written about many times, I’m at peace with it and I’ve accepted this new way of life.

Sometimes it doesn’t matter how much we try and pace activity and rest, there will be periods of time when circumstances are outside of our control.

I’ve had a fortnight of one thing after another coming my way. These things weren’t planned and couldn’t be avoided.

It was like looking at an avalanche moving with full force towards me, knowing I needed to run in the opposite direction but being stuck with legs that wouldn’t move fast enough.

So when things are really outside of your control you have to deal with them as best you can. You have to face it and try to move through it while constantly hoping and praying a crisis doesn’t eventuate. A crisis that could quite likely land you in hospital.

My avalanche included extra necessary medical appointments which resulted in extra tests and scans over a number of days. All were taxing on me physically and all greatly impacted my “normal” daily schedule I need to follow to cope with my pain levels and disease symptoms.

The problem with chronic disease is you often can’t just catchup after a glitch in your routine. Believe me I’ve tried. I’ve often thought that one day of complete rest will make all the difference.

One day of rest when chronically ill doesn’t really do much at all.

At some point, once the avalanche of unplanned and unavoidable activities are over, you have to fully assess the damage.

I’m my own worst enemy when it comes to doing this. I’ve accepted my daily rest periods are now part of my life, but I hate having to stop completely.

So my initial plan was to reinstate my “Chronic Illness Management Plan” and return to my normal daily routine.

Ha… well, that clearly wasn’t going to work.

So my next step was to try increasing the length of my rest periods for a couple of days.

No, that didn’t work either.

It was time to draw the line in the sand. Time to wave the white flag and retreat.

I had some other appointments looming as a new week approached, and I could feel my avalanche crisis beginning to gain further momentum.

I began juggling my daily schedule to wake up later, go to bed earlier, increase pain medication, put all household tasks on hold.

All were Band-aid solutions and not the strategy I needed to employ to rectify my situation and get back to my base disease level of operandi.

Out of the blue I received two phone calls advising that appointments needed to be re-scheduled for various reasons.

What a relief. I’m sure I sounded way too happy on the phone when one caller told me she needed to cancel due to a migraine. I felt so bad about that afterwards. Oops!

As I sat in my armchair, letting the fact that I now had the gift of time waft over me, it became clear what I needed to do.

I needed to cancel the day. Do nothing, plan nothing, just withdraw.

There is always the temptation when appointments are cancelled to fill the time with other tasks. I couldn’t afford to do that even though my head was full of great ideas. My body was screaming at me. I had to listen to it.

Once I committed to cancelling the day and resting, really resting, I realized this was going to be a longer term strategy. I needed more than one day. Two weeks of damage could not be undone in one day.

I had four days ahead with no medical appointments. My window of opportunity was there. I could ignore it or be sensible.

I chose to be sensible. Well, I like to think I chose, but in actual fact I really had no choice.

Chronic Illness has one non negotiable rule: look after yourself.

So if life has gotten too busy and your disease is flaring out of control, when all else fails — and if it’s possible — cancel the day. Cancel a few days. Take the time you need to recover and get back on track.

Most importantly, please don’t feel guilty about cancelling the day. It’s not your fault. You are absolutely doing the right thing.