Determining what’s worth it

Life with a chronic illness is extremely difficult physically, mentally and emotionally (spiritually). One of the biggest issues I’ve found that can fall under all three of these categories is determining which activities to undertake and which to avoid. In other words, determining what’s worth it!

What activities are worth causing an increase in symptoms?

How do we know if an activity will be OK or if it will cause a crash?

These types of questions are part of a constant mental struggle I have on a daily basis, and I’m sure many of you who also suffer from chronic conditions have the same struggle.

For example, over the weekend my husband participated in a rogaine. Before becoming ill I had participated in a few of these events with him (and even participated in one during the first few weeks of my condition – which probably was one of those ‘wrong’ decisions). Since becoming ill I have come along to the camp site once and stayed at the camp site reading and resting while he participated in the rogaine with our friends.

There have been other times I’d planned to go up but the weather had been so horrible I’d decided it wasn’t worth it and stayed home while he was there.

This time we planned again for me to come up and stay at camp but the weather on the few days leading up to the weekend were horrible with lots of rain and the day we were meant to leave it was forecast for thunderstorms. So, once again I had to think about the impact going up with them would have on me versus the impact of staying home alone.

After much deliberation (and discussion with both E and my mum) I decided the benefit of getting away from home and having a change of scenery would be worth the impact of travelling and camping.

The location of the rogaine was over 3 hours drive from home so travel did have a major impact on my pain and fatigue levels. We stopped part way there for dinner but didn’t arrive and set up camp until around 11 pm, way after my bed time.

During the day while the others were out rogaining I spent the day reading, drawing, resting and meditating. Yes, I had crashed as a result of the travel but the time I spent meditating and reading has once again had an impact on how I look at my life. The benefits I’ve got from the practices I read about in How to be Sick by Toni Bernhard will be long lasting. If I had stayed home I may have finished the book but I wouldn’t have spent as much time practicing the techniques and resting.

(c) Megan S, May 2014
(c) Megan S, May 2014

We drove home yesterday morning, getting home around lunch time. I fell asleep shortly after lunch and slept most of the afternoon. Unfortunately, I fell asleep before doing some of the tasks E had asked me to complete (put dishwasher and load of washing on) so he was upset with me for not getting my priorities right but I think the sleep is what I needed.

Today I’m struggling with very low energy levels but my pain levels have remained at about 3/10 (what seems to be my baseline in cold/wet weather) and mentally I’m feeling calm and content.

For me, this weekend away was worth the increased pain and fatigue but I still feel that the mental struggle of determining what is worth doing when you are living with a chronic illness is a burden that I still have to face on a daily basis.

Thanks to what I read and practiced over the weekend I feel that I can face this burden a little more calmly and accepting of where I am at this stage in my illness.

How do you deal with this mental struggle?

What techniques or guidelines do you have in place to help you determine these limits?