Friday 19 January 2018


Pacing is a key part of life with chronic illness and it's easier said than done. You can set out at the start of you day a nicely planned out pace day but as usual things like fatigue and pain have other ideas. Pacing is particularly important when you have an illness which involves chronic fatigue or persistent pain to try to prevent getting to a 'crash point' where functioning becomes difficult and to try and lesson station like Post Exertion Malaise (PEM) and levels of pain and flare-up of symptoms.

This was today's nicely planed out day. I used my Stickman Communications © Pacing Pack as a handy tool to pacing my day out. Green are easy tasks, orange are okay tasks and red are challenging tasks.The idea is that following a red or orange task you take a rest or green task. The visuality of my day laid out like this helps me plan out my energy and spoon count so I don't get to 'crash point'.

However, like I said, chronic illness has other ideas and its okay to change your nicely planned out day. I didn't do my email sorting today as phone calls to the Pain Clinic, Patient Transport and more excitingly booking my tickets for Harry Potter Studios took up more energy than I imaged and time had flown by and I hadn't yet had lunch so I got myself a snack and to do some physio exercises and then forced myself get to the sofa and put the TV on the get a rest. After a couple of programmes I was nodding off so took a nap on the sofa. The next thing Dad and Mandy was coming home and I'd been asleep for a few hours - maybe I should have scheduled in a nap? So the afternoon's plan went out the window and no tidying got done. My body just simply needed to sleep and rest, and that's okay.

It's strange as for most people making phone calls is an everyday mundane task yet for me, like today and I'm sure other out there living with a chronic illness it can be very tiring thing. And I think I' having some PEM still from Tuesday's seizures and A&E visit still?

I do feel a little bit annoyed with myself as I wanted to get some tidying up done but like with chronic illness is unpredictable and far too often your mind and body develop other ideas. But I think a learning opportunity today is to plan naps into my schedule and maybe move my magnets around more to meet my body's changing needs as the day goes on and also to not be disappointed when I don't get everything done that I want to get done.

Learning to pace oneself is hard and an evolving process and takes a lot of skill. I'd recommend using the traffic light system, even if its using a red, orange and green pen on your to-do list as I do. I'd also personally recommend the Pacing Pack fro Stickman Communication © in it you get a magnetic board kit, pacing stick-it notes and a pacing guide 'Getting the Best out of Life'.

Handy Links: