Jason Parry Extended Scope Practitioner Clinical Specialist Physiotherapist Hypermobility

Practical Pacing and Fatigue Management

Spoons! Why does hEDS/HSD make you SO tired?

§  Pain §  Poor sleep §  Medication §  Deconditioning §  Poor patterns of behaviour

Overactivity and Underactivity Cycle

“Boom and Bust” §  Symptoms or pain are in control

§  Good day = overactivity §  Bad day = underactivity

§  Peaks of activity reduce, periods of rest become longer

§  Contributes to cycle of deconditioning and feeds vicious cycle of pain and fatigue

§  Helpful in short term but not in the long term

POOR CONTROL OF PAIN AND FATIGUE

Underactivity Cycle

Pacing

§ Stopping BEFORE pain or fatigue increases § Breaking activities into smaller chunks

§ Evening out levels of activity - consistency

§ Frequent changes of position § Planning and prioritising

How do I pace?

§  Work out your baselines

§  BASELINE = the amount you can manage most of the time without increasing your symptoms

§  Use a timer

§  For example: if you know that standing for 20 minutes flares-up your pain and tires you out, then 10 minutes should be your standing baseline J

How do I pace?

§  Time is not always the measure

§  Could use repetitions for exercises

§  A baseline should be set according to a ‘bad’ day (when you can still manage to do a bit of activity)

Structuring Your Day

§  Retrospective activity diary

Traffic Light System

§  Red = most demanding §  Amber = moderate §  Green = lightest/relaxing

Mon Tues Wed Thurs Fri Sat Sun

7-8am

Breakfast Breakfast Breakfast Breakfast Sleep Sleep Sleep

8-9am

Ge.ngready Ge.ngready Ge.ngready Ge.ngready Sleep Sleep Sleep

9-10am

Work Work Work Shopping Sleep Sleep Sleep

10-11am

Work Work Work Shopping Sleep Sleep Breakfast

11-12am

Work Work Work Shopping Sleep Sleep TV

12-1pm

Lunch Lunch Lunch Lunch Breakfast Breakfast Lunch

1-2pm

Work Work Work Cleaning TV TV Family

2-3pm

Work Work Work Cleaning Lunch Lunch Family

3-4pm

Work Work Work Cleaning TV TV Family

4-5pm

TV TV TV TV TV TV Family

5-6pm

Cooks Cooks Cooks Cooks Cooks Cooks Cooks

6-7pm

Speakstosister Speakstosister Speakstosister Speakstosister Speakstosister Speakstosister Speakstosister

7-8pm

Emails Emails Bills,etc TV TV TV TV

8-9pm

TV TV TV TV TV TV TV

9-10pm

Bed Bed Bed Bed Bed Bed Bed

Plan your week §  Consider how to break up the long periods of

red activity with some green

§  Insert some red or amber activities into long stretches of green

§  Certain tasks must be done at certain times – place appropriate colours around them

§  Think priorities – does it HAVE to be done?

Mon Tues Wed Thurs Fri Sat Sun

7-8am

Breakfast Breakfast Breakfast Breakfast Breakfast Sleep Sleep

8-9am

Ge.ngready Ge.ngready Ge.ngready Ge.ngready Ge.ngready Sleep Sleep

9-10am

Work Outdoorwalk Work Outdoorwalk Work Stretches Stretches

Breakfast Breakfast

10-11am

Work Cleaning Work Cleaning Work Family Cleaning

Break Break Break

11-12am

Work RelaxaEon Work RelaxaEon Work Family RelaxaEon

12-1pm

Preparefood Preparefood Relax Computerwork

Lunch Lunch Lunch Lunch Lunch Prepfood

1-2pm

Work Clearingup Work Shopping Lunch Lunch

Rest

2-3pm

Work Vacuuming Work Reading Work Shopping Family

Break Rest Break Break

3-4pm

Work Exercises Work Exercises Work TV Family

4-5pm

Exercises TV Exercises TV TV TV Family

5-6pm

TV Cooks TV Cooks Getreadytogoout Cooks Relax

6-7pm

Putkidstobed Speaktosister Putkidstobed Speaktosister Socialising Speaktosister Putkidstobed

7-8pm

Dinner TV/Dinner Bills,etc TV/Dinner Socialising TV/Dinner TV/Dinner

Washup

8-9pm

TV Emails TV Emails TV TV TV

Stretches Stretches Stretches Stretches Stretches Stretches Stretches

9-10pm

Bed Bed Bed Bed Bed Bed Bed

Pacing Up §  Once your routine is stabilised §  Decide on a realistic build up rate for your

baselines (usually 10-20%) §  Give your body time to adapt at each level

before increasing §  Increases should be routine, slow and steady

Pacing Tools § Timers

§ For computers: “Workrave” software (Windows), “Time Out” (Macs)

§ Visual cues (ad breaks, text msg, post-it notes)

§ Friends, family, colleagues

§ Equipment – (“Flip Stick” seat, food processor)

ME/CFS Diary App

•  Helps calculate baselines •  Produces graphs and reports

Yeah, yeah, I know I should be pacing!

§  I’m too busy to pace §  How can I pace with kids to look after? §  I can’t pace at work

§  Nobody said it was easy!!

§  Pacing can work for most people…but of course you won’t all be convinced!

Difficulties with Pacing internal

§ Frustration § Expectations of yourself § Lack of assertiveness § Getting engrossed

external

§ Environment § Work § Other people’s expectations

§ Requirements of the task

Relaxation and sleep

§  But how can I pace up my activity when I’m so tired?? §  “I can sleep for 12 hours but I still feel exhausted”

§  Relaxation/Mindfulness can be a way of re-energising

§  Good “sleep hygiene” is important

§  Recognise the different types of stressors

Remember

§  Pacing takes lots of self-discipline

§  Stop before pain comes on!

§  Should still feel like you could do more – but DON’T!

§  Doesn’t take longer to do jobs – it’s just being smarter

§  Pacing does help to manage pain and fatigue more effectively