Practical Pacing and Fatigue Management. Jason Parry Extended Scope Practitioner Clinical Specialist Physiotherapist Hypermobility

Transcription

1 Practical Pacing and Fatigue Management Jason Parry Extended Scope Practitioner Clinical Specialist Physiotherapist Hypermobility

2 Spoons! Why does heds/hsd make you SO tired? Pain Poor sleep Medication Deconditioning Poor patterns of behaviour

3 Overactivity and Underactivity Cycle

4 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

5 Underactivity Cycle

6 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

7 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

8 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)

9 Structuring Your Day Retrospective activity diary Traffic Light System Red = most demanding Amber = moderate Green = lightest/relaxing

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11 Mon Tues Wed Thurs Fri Sat Sun 7-8am Breakfast Breakfast Breakfast Breakfast Sleep Sleep Sleep 8-9am Ge.ng ready Ge.ng ready Ge.ng ready Ge.ng ready 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 Speaks to sister Speaks to sister Speaks to sister Speaks to sister Speaks to sister Speaks to sister Speaks to sister 7-8pm s s Bills, etc TV TV TV TV 8-9pm TV TV TV TV TV TV TV 9-10pm Bed Bed Bed Bed Bed Bed Bed

12 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?

13 Mon Tues Wed Thurs Fri Sat Sun 7-8am Breakfast Breakfast Breakfast Breakfast Breakfast Sleep Sleep 8-9am Ge.ng ready Ge.ng ready Ge.ng ready Ge.ng ready Ge.ng ready Sleep Sleep 9-10am Work Outdoor walk Work Outdoor walk 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 Prepare food Prepare food Relax Computer work Lunch Lunch Lunch Lunch Lunch Prep food 1-2pm Work Clearing up 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 Get ready to go out Cooks Relax 6-7pm Put kids to bed Speak to sister Put kids to bed Speak to sister Socialising Speak to sister Put kids to bed 7-8pm Dinner TV/Dinner Bills, etc TV/Dinner Socialising TV/Dinner TV/Dinner Wash up 8-9pm TV s TV s TV TV TV Stretches Stretches Stretches Stretches Stretches Stretches Stretches 9-10pm Bed Bed Bed Bed Bed Bed Bed

14 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

15 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)

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18 ME/CFS Diary App Helps calculate baselines Produces graphs and reports

19 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!

20 Difficulties with Pacing internal Frustration Expectations of yourself Lack of assertiveness Getting engrossed external Environment Work Other people s expectations Requirements of the task

21 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

22 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

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