There are very useful steps that you can take yourself whilst waiting to be seen in the ME/CFS service. These steps will be helpful whether the fatigue turns out to be due to ME/CFS or another cause.
Work and education
- If you are in work or education, speak to your employer or education provider. Let them know that you are struggling. It is better to make adjustments early than to need extended periods of sick leave.
- If you work or study full-time, ask about a temporary reduction in your hours. If you work shifts, ask about being temporarily taken off night shifts.
- Your GP can help with temporary changes to your work through a ‘fit note’.
Daily routine
Daily routine and ‘pacing’ are critically important. Most patients find that, initially, they are in a cycle of ‘boom-and-bust’, where they end up overdoing things on a good day and then ‘crashing’ the next day.
- Make a detailed symptom and activity diary for a period of two weeks. (See ‘self-management tools’ section to download a diary and for help with ‘pacing’.)
- Get in a really regular daily routine and try to stick to it strictly.
- Eat regular balanced meals at the same time each day.
- Avoid doing too much physical or mental activity in a single day. Spread things out. Rest more. Split activities into smaller chunks with regular short breaks.
- But do not stop all activity. Find a level of activity that you can manage every day without pushing yourself ‘into the red’, then try to stick to it.
- Ask for help – do you have family or friends that you can turn to for short-term help?
Sleep
- Good ‘sleep hygiene’ can make a major difference to fatigue.
- Go to bed and get up at the same time every day, regardless of what you have on that day.
- Try to avoid daytime naps. Find ways to rest and relax quietly without sleeping. If you find that you really cannot manage without a daytime nap, make sure that this is at the same time and for the same duration every day (e.g. 20 minutes at 2pm).
- Try to get some fresh air and daylight every day. This could be as simple as sitting outside for 15 to 20 minutes in the middle of the day.
