Lucy Swift Occupational Therapist RNOH

Transcription

1 Lucy Swift Occupational Therapist RNOH

2 Why does EDS make you SO tired? Pain Getting your body to do what you want it to do is hard. Medication. Poor sleep. It s an invisible condition.

3 Stopping BEFORE pain or fatigue increases Frequent changes of position Breaking activities into smaller chunks Planning and prioritising

4 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

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7 This talk will therefore mainly focus on HOW to pace We won t convince everyone! Most people will find that they are successful at pacing some activities and not others There will be times when you don t pace, even if you re really good at it generally

8 INTERNAL EXTERNAL Frustration Expectations of yourself Lack of assertiveness Low self esteem Getting engrossed Environment Work Other people s expectations Requirements of the task

9 Work out your baselines BASELINE = the amount you can manage most of the time without increasing your symptoms Use a timer For example: if I can play Mortal Kombat for 20 minutes before my thumbs ache, my baseline is 10 minutes

10 Time is not always the measure For example, when pacing exercises, the measure could be number of repetitions

11 Retrospective Red most demanding Amber moderate Green - relaxing Planning

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13 Mon Tues Wed Thurs Fri Sat Sun 7-8am Breakfast Breakfast Breakfast Breakfast Sleep Sleep Sleep 8-9am Getting ready Getting ready Getting ready Getting 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

14 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

15 Mon Tues Wed Thurs Fri Sat Sun 7-8am Breakfast Breakfast Breakfast Breakfast Breakfast Sleep Sleep 8-9am Getting ready Getting ready Getting ready Getting ready Getting 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 Relaxation Work Relaxation Work Family Relaxation 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

16 Only once your routine is stabilised Aim to gradually increase your activities or add in new activities you may have been avoiding previously Can help to reverse the downward spiral of deconditioning and break the vicious cycle of pain

17 Decide on a realistic build up rate Usually 10-20% Give your body time to adapt at each level before increasing Increases should be routine, slow and steady

18 Timers Visual cues For computers: Work Rave software (Windows), Time Out (Macs) For walking: Flip Stick seat Friends, family, colleagues Equipment

19 Limited apps for pacing per se However, goal tracking apps can be very helpful Examples include Wunderlist and Evernote

20 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 can be a way of re-energising Sleep hygiene is important Recognise the different types of stressors

21 E.g. art/craft, cooking, gardening Using baselines in a real activity Use of timers encouraged Pacing is not just about changing from sitting to standing Graded postural improvements Increasing awareness of habits Collaborative problem solving

22 Pacing does help to manage pain and fatigue more effectively It is a simple concept but needs persistence and perseverance Stop before pain comes on! Reward yourself

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