The Non Negotiable Chronic Illness Rule

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

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

So, chronic disease really wasn’t going to change my approach to finding a way to overcome an obstacle. It’s just another challenge. 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.

One Thing After Another

When I can stick to what I call my “Chronic Disease 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 and couldn’t move fast enough.

Facing The Avalanche

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

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

On top of medical appointments, my husband and I needed to make a few important changes to personal administration items. This required long phone calls, savvy negotiation on my part and outings to get documents signed etc.

I also needed to re negotiate our Government care packages, NDIS for me and My Aged Care for my husband. Again more long phone calls, emails, paperwork etc.

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

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

Drawing A Line In The Sand

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 Disease 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, this didn’t work either.

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

I’m Sorry, Today Is Cancelled

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 bandaid 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 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 their organisation had been victims of a cyber attack and their appointment schedules were affected. I felt so bad about my obvious happy reaction afterwards. Oops!

As I sat in my armchair, letting the fact 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.

Come to Me, all who are weary and heavy-laden, and I will give you rest.

Matthew 11:28

There is always the temptation, when appointments are cancelled, to fill the time with other tasks. I knew I couldn’t, 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 4 days ahead with no medical appointments. My window of opportunity was there. I could ignore it or be sensible.

In peace I will both lie down and sleep, For You alone, O LORD, make me to dwell in safety.

Psalm 4 v 8

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

Chronic Disease has one non negotiable rule……look after yourself. To do otherwise is pure folly.

So if life has got too crazy, too busy and your disease is flaring out of control, it’s really simple….

When all else fails, 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.

It’s the “Chronic Illness Non Negotiable Rule”…..Look After Yourself!!

Take care

Sam xx

If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.

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Australian Aspire Awards 2020 Nominee – Awarded Medal of Recognition for Individual Best Achievement Community Advocacy.
Thank you to Arthritis Queensland for the nomination!