Practical Pacing and Fatigue Management · PDF fileJason Parry Extended Scope Practitioner Clinical Specialist Physiotherapist Hypermobility Practical Pacing and Fatigue Management

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