Getting back on track
Just when you thought you were getting better it hits you like a punch in the stomach... you land in a dreaded relapse.
The word 'relapse' is used to describe a time when your symptoms get worse for a while. A relapse can be brought on by a stressful event or catching a cold or bug. Trying to do too much when your body isn't up to it can bring about a relapse so it is important to stop and listen to any warning signs. Pushing yourself too much is an easy mistake to make, especially when there's so much you want to be doing and you want to catch up with healthy friends.
Sometimes there's no particular explanation - periods of relapse are a part of the M.E. rollercoaster.
At times symptoms can get bad, sometimes worse than ever before. On top of which you may feel frustrated and angry as all your hard work to get better seems wasted. It's frightening to feel that you're not in control of your body but don't be ashamed about feeling depressed or being fed up to the point of tears. See feeling low for more info.
Below you will find a handy 4 'P' plan for preventing and coping with relapses. Each step begins with a 'P' making them easy to keep in mind.
1. Prevention
To minimise the chance of having a relapse, learn to listen to your body. Remember that every cell in your body sends information to the brain, so try to 'tune in' to the low frequencies and catch the vibes.
Keep a diary of your activities and symptoms to work out how much you can safely do without worsening symptoms. This will also help you should you get a sudden relapse - you may be able to do some detective work based on your diary to see what might have triggered it. Sometimes though it's not possible to prevent a relapse - they can just happen with no warning or can be due to things you've got no control over.
2. Planning
With plan A being prevention, plan B is 'be prepared for the worst'. Collect together a relapse survival pack and keep it near to hand. Here are some ideas on what to include:
Relaxing music or talking books
Key phone numbers in case you want to ring a friend or relative or need to cancel a lesson
Comfortable clothes, extra pillows and blankets
Hot water bottle
Photos and cards that cheer you up
A selection of favourite videos/DVDs
Good books, magazines and puzzle books
Paper and pencils, odour-free paints or pens
Talk to your parents and get them to help fit some kit to your room such as dimmer switches and thick blackout curtains if you suffer from light sensitivity.
3. Patience
It is normal to worry and get upset and frustrated when you go through a relapse. It is important to remember that everyone who has M.E. goes through this. Make sure to talk (or write) to someone about what you are going through as this helps to keep things in perspective. It can sometimes be hard to see any improvement and so writing down how you are can help you to see improvements that may otherwise be missed. Even though it's very frustrating to just wait for your body to pick up, remember to take one day at a time.
4. Pacing
Pacing is about making activity (physical and mental) and rest more consistent and staying within your energy limits. Pacing is important not only as prevention but also when you are trying to get back on track. It takes time and good support to learn how to manage your energy levels efficiently and stop the 'boom and bust' cycle. For more detailed information look at the Pacing section.
Don't give yourself a hard time if you do too much one day and suffer as a consequence. The important thing is to learn from your experiences and hopefully manage the situation better next time.
Find out what other young people have to say about relapses in Reality Bytes.
Information produced July 2003
Updated June 2004
