‘Isn’t recovering from a brain injury hard enough without feeling so tired all the time?’ Penny Weekes Occupational Therapist Acquired Brain Injury penny@pennyweekes.com Bristol July 2017

Chill Out Learning from ‘ The Experts’ Chill Out programme Understanding and managing fatigue The effects of fatigue are very common post ABI and often go unrecognised

Challenge Ahead ! ABI out door activity group to assist children and young people to identify and manage the symptoms of fatigue in physical, social and cognitive activity. Parent Group – to recognise and manage fatigue, pace, prioritise and share information

Challenge ahead !

Definition ‘the awareness of a decreased capacity for physical and or mental activity due to an imbalance in the availability, utilization and or restoration of resources needed to perform a chosen activity’ Aaronson et al 1999

Yp definition Being knackered all the time…..

Fatigue post ABI Primary fatigue – damage to the brain regions and systems that regulate arousal, alertness, attention and sleep Changes in the production and release of hormones and neuro transmitters Damage in the CNS may adversely effect function in the PNS

Fatigue post ABI Psychological fatigue ‘a state of weariness related to reduced motivation, prolonged mental activity or boredom that occurs in situations such as chronic stress, anxiety or depression’ Lee et al 1991

Yp definition Can’t be arsed….

Fatigue post ABI Secondary fatigue – due to the additional compensatory effort needed to manage all the difficulties post ABI Leading to difficulties with sustained performance

Fatigue post ABI Overwhelming physical and mental exhaustion – not relieved by a nights sleep Difficulties with self control, emotions, behaviour Lowered tolerance to life’s stressors Feeling sleepy Headache Pallor, changes in the eyes

Fatigue post ABI Blurring and slurring Dull, monotonous voice or expression Foggy thinking Slowed performance Safety compromised Feeling sad Life is going on around them

Yp identify Top of the list – School Learning, class, canteen, keeping up, teaching staff not understanding, noise, overload, stress, homework, exams, school bus Second – Social Banter, gossip, social media, real life, unspoken rules, stress

YP identify Third – Family Arguments, chores, siblings, shopping, well meaning neighbours or grandparents who take up all your energy if you don’t avoid them in time..

Yp most likely to experience fatigue - Impaired attention & processing speed Memory difficulties Communication difficulties Executive dysfunction Motor defecits Pain Low mood / PTSD

6 week fatigue management ‘chill out’ ABI awareness session – what is fatigue & how it can affect you after ABI. Lets look at your symptoms…physical, cognitive, communication skills, behavioural &emotional What are your early warning signs? Does fatigue matter to you? Why?

‘chill out’ How do you sleep? What do you eat? What exercise do you do? What after school activities do you do? How does your weekend go ? What difficulties do you have at school? Do your friends & family understand?

‘Chill out’ How does your fatigue affect you in daily life? lets make a chart …..

Activity How tired does this make you? 1 -10 What is the hardest part of this activity? 1-10 How important is this activity to you? school learning journey personal physical leisure social

Daily fatigue record Daily routine Fatigue levels 7.00 wake up 0---------------------------10 8.00 leave to catch bus 9.00 First lesson 11.00 break time 1.00 lunch 2.00 lessons 3.30 go home get bus 4.00 get home 5.00 homework

‘chill out’ What could we change to make life better? What is pacing? Good days, bad days What is prioritising? What takes most of your energy, is it worth it?

‘chill out’ What do you do to relax? What do you love doing? What is rest? Let’s be creative…

‘chill out’ How do you explain it to your friends? How do you explain it to your family? How do you explain it to your teacher? What is our plan? We will need to review it regularly as you move up through the school.. What are you going to do… What is Penny going to do..

jack Every day I have to make choices…there is a cost to going to school and I have to decide everyday whether it will be worth it Make each day count..

Learning from the experts : thankyou penny@pennyweekes.com Learning from the experts : managing fatigue ‘chill out’