Notes from the Neuro Café on 9th June 2021.
Pacing is an important issue and we should all know how to pace ourselves.
Conor likened the brain to a battery. It is easy to run the battery down and get caught in a boom-bust cycle. Even a simple thing like thinking can cause mental fatigue; also we should be careful not to push ourselves too hard physically. Please pay attention to rest and recovery as well as exercise!
Boom-bust cycle vs good fatigue management
It is possible to maximise your energy by spreading out your activities and by alternating activity with rest. Thinking about the 3 Ps can be helpful;
Plan - in advance
Prioritise - tasks for the day, do they have to be done today or can they wait?
Pace - break activities down into components, do things little and often.
Do not over-reach and under-recover. Just like the tortoise and the hare, slow and steady wins the race!
Invest in rest - it might be helpful to document your activities in a journal to find out what works for you. Good quality rest is essential; read a book, close your eyes and have a nap, meditate. Rest is different for everyone. There is no right or wrong way to do it.
4-7-8 breathing is a technique some people find useful to relax. We tried with Conor: breathe in for 4 counts, hold for 7, breathe out for 8. Repeat 4 times.
Pay attention to what you are eating; a reminder that things like Coke and chocolate, coffee and tea may contribute to a peak and crash cycle. Aim to consume slow-release carbohydrates such as oats, wholewheat pasta and rice, and drink plenty of water.
How do we pace ourselves at LEGS?
Here are some tips:
To help with washing and dressing, set out the clothes for the day. Before you wash, have the shampoo and body wash at the ready.
A bath board, shower stool or perching stool may be useful.
Some LEGS participants like to have a cold shower to start the day, some emphatically do not!
Allow yourself some restful activities even when you start to feel better.
Start small and build activities - 5 or 10 minutes of activity and build to 20.
Some people like to iron their clothes, others recommend putting smalls under the mattress to flatten!
Allow time for rest and recovery. Many people do rest during the day or take a restorative nap. People commented they struggled in early days but found gradual improvements over time.
Some had to sleep for 2-3 house every afternoon when they came out of hospital.
Everyone agreed on the importance of listening to your body and lying down or napping when tired.
Eat a balanced diet with the right foods at the right time.
Try peppermint or chamomile tea or decaffeinated coffee before going to be bed. Some people said they enjoy an espresso before retiring, others commentated that an espresso would have them dancing off the walls!
There was some banter to conclude the session about flies and mushrooms and whether we should be afraid of them. One participant who lived in the mountains said you knew the cows had been put into the field next door by the clouds of swarming flies that mysteriously appeared!