Important Lifestyle Changes: Managing fatigue

Keeping an activity diary is a great place to start, as it will allow you to record your activity and rest. Over time, this can help you to recognise patterns in your day and also what is making your fatigue worse.

The following is a real life example of a ‘good day’:

6.30am        Shower/get dressed/dry hair
7am             Get the kids ready for school and have breakfast
8.30am        School run
10am           Work emails/presentation preparation ****
11am           Walk the dog
12pm           Lunch
1pm             Housework 
2pm             Cup of tea/rest
3pm             School run
4pm             Prepare dinner 
5pm             Dinner time ****                      
6pm             Bath kids
8pm             Put kids to bed
9pm             Check emails/watch TV
10.30pm      Bed
11pm-7am  Sleep

RED – high energy demand
ORANGE – medium energy demand
GREEN – low energy demand
BLUE – rest
PURPLE – sleep
**** – fatigue spike

We are able to see that this person has engaged in nine red activities, two orange (one of which is screen time, less than two hours before bed and sleep) and two green activities. Interestingly, there are only two periods of rest over a 16.5 hour time period. While this person has only experienced two ‘fatigue peaks’, they may go on to do less the next day, but experience more fatigue. This is known as a ‘boom or bust’ cycle, which will be talked about further down the page.

This person could…

• Continue their normal activities over a two week period to get a true picture.

They could then…

• Balance their colours more evenly.
• Schedule double the amount of rest blocks.
• Aim for a balance of physical, mental, emotional and social activities.

Top tip for keeping an activity diary

It is important to remember that your colours may differ, as for one person a red activity may be walking the dog, but for another it may be having a bath. Have a think about which activities will take which colours. Do not forget to include mental and emotional activity on there too! 

Once you have your activity diary, you can go on to pace. Pacing is all about balancing activity and rest to bring about improvements in your fatigue levels. It offers you the chance to control the effects of PoTS and in time can lead you to be able to do more.

It is important to remember that activity includes both mental and emotional tasks as well as the more obvious physical ones. It can be tempting to do too much on a good day in order to make the most of your energy; however, this can often leave you with nothing in reserve over the following days. This is known as a ‘boom or bust’ cycle mentioned above.

Top tip for pacing- do a little less on ‘good’ days to enable you to achieve more on ‘not so good’ days.

Many people with PoTS adapt their activities of daily living to make them easier and do a great job of this. But it is important to note that changing the ways we do things can be very difficult, as we get into habits and routines over a period of time.

• For example, the person in the activity diary got straight out of the shower, got dressed, dried their hair and then got the children ready for school. Maybe this is how their morning routine has looked for 2-3 years. However, this could be tweaked so that ten minutes of rest takes place between getting dressed and drying her hair, or perhaps the children could take on one or two more responsibilities to help with the morning routine.
• Another example could be washing or bathing. Many people stand in the shower. Surely that is what everyone does!? For some people with PoTS, the heat of the shower combined with standing in one place can trigger heart palpitations and dizziness, which is unpleasant and often frightening. The resolution to this could be to open the windows, turn the heat of the shower down, or to consider equipment such as a shower stool to sit on. This could be self-purchased relatively cheaply, or an occupational therapist could carry out an equipment assessment.

Occupational therapists consider all needs – physical, psychological, social and environmental – and aim to increase function and quality of life. They use a number of techniques to do this, including equipment provision (grab rails, wheelchairs, perching stools, bath boards), graded rehabilitation, fatigue management and improving community access.

If you do not feel you are managing your activities of daily living and this is impacting on your quality of life, your GP might be able to process a referral to your local community occupational therapy team.

Top tip for adapting activity – think hard about how you can make each activity a little easier and try it out for a minimum of two weeks.

• Diet and exercise are important for people living with PoTS. Combining sensible exercise with a balanced diet can help you to maintain a healthy weight and gain the energy you need for activity. Weight loss or weight gain can make coping with fatigue more difficult and if you are struggling with this, you can ask your GP for a referral to a dietician. What you eat can also make a difference. For example, large, hot meals can make fatigue worse, while caffeinated drinks and sugar may give a quick boost of energy, but can leave you feeling more tired later in the day.
• Often, the worry of feeling more fatigued can put people off exercise, but it is important to keep the body working as efficiently as possible – and physical activity is a very good way of doing this. It is best to find a level of exercise that you can manage on a daily basis, that you enjoy doing, and that will not put you at risk of harm. Remember to wear loose fitting, cool clothes and to drink plenty of water before, during and after. Your GP, specialist or a physiotherapist will be able to advise you on exercise if you are unsure.