Lucy Swift

Occupational Therapist
RNOH

Why does EDS make you

SO tired?
Pain
Getting your body to do what you want
it to do is hard.
Medication.
Poor sleep.
Its an invisible condition.

Stopping

BEFORE pain or fatigue

Frequent

changes of position

Breaking

activities into smaller

Planning

and prioritising

increases

chunks

 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

 This

talk will therefore mainly focus on

HOW to pace
We wont convince everyone!
Most people will find that they are
successful at pacing some activities and
not others
There will be times when you dont pace,
even if youre really good at it generally

INTERNAL

EXTERNAL

Frustration
Expectations

Environment

of

yourself
Lack of assertiveness
Low self esteem
Getting engrossed

Work
Other

peoples
expectations
Requirements of the
task

 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

Time
For

is not always the measure

example, when pacing exercises,

the measure could be number of
repetitions

Retrospective
Red

most demanding
Amber moderate
Green - relaxing
Planning

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

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

 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

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

Family

Cleaning

Family

Relaxation

Relax

Computer work

10-11am

Work

Cleaning

Break
11-12am

Work

12-1pm

1-2pm

Work

Cleaning

Break
Relaxation

Work

Prepare food

Work
Break

Relaxation

Work

Prepare food

Lunch

Lunch

Lunch

Lunch

Work

Clearing up

Work

Shopping

Reading

Lunch

Prep food
Lunch

Lunch

Shopping

Family

Rest
2-3pm

Work

Vacuuming

Work

Work

Break

Rest

Break

3-4pm

Work

Exercises

Work

Exercises

Break
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

TV

Emails

TV

Emails

TV

TV

TV

Stretches

Stretches

Stretches

Stretches

Stretches

Stretches

Stretches

Bed

Bed

Bed

Bed

Bed

Bed

Bed

Wash up
8-9pm

9-10pm

 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

 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

Timers
Visual

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

 Limited

apps for pacing per se

However, goal

tracking apps can be very

helpful
Examples

include Wunderlist and

Evernote

 But

how can I pace up my activity when

Im 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

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

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