Hampshire and Isle of Wight CFS/ME Service

Transcription

1 Week 1 Week 2 Week 3 Week 4 Week 5 Sleep Relax Clinic Hampshire and Isle of Wight CFS/ME Service Clinic Hampshire and Isle of Wight Chronic Fatigue Syndrome/ME Service. The material contained in this and subsequent s must not be copied or reproduced in any way.

2 The aim of this is to help you make a start with managing your CFS/ ME or fatigue symptoms. There are three key things we would recommend and you will have been given advice in clinic about which tasks would be most suitable for you to start with: Patterns of the illness (Boom or Bust) Rest Sleep. The Boom and Bust cycle Most people have a period in the day when they have more energy than at other times. In CFS there is more of a contrast in energy levels. There is a tendency to do as much as possible when energy levels are higher, which then leads to periods of fatigue and enforced rest The cycle is illustrated below and shows peaks and troughs of fluctuating energy. If rests are taken only when you are exhausted it takes a long time to recharge However if rests are part of a daily routine it is possible to manage your energy more effectively. The key point is to rest routinely and consistently before you become exhausted. REST is a key tool in managing CFS/ ME 101

3 Sleep/ Wake times Identify a time that you will go to bed each night. It must be realistic for you so choose a time that you go to bed most nights now. Now take 30 minutes back from this. This will be your wind down time: a time to gradually cease activity and do routine, low level tasks only. Identify a time to wake up. Again make this realistic don t try to change how long you sleep for yet. You may need to set an alarm to keep consistent. Add 30 minutes to this time. This is your wind up period. Use it to gradually start to become active, again doing low level routine things such as looking at a magazine or drinking a cup of tea. Rests Identify three or four times in the day that you can rest for 30 minutes. Remember that rest means little or no stimulation, away from disturbance. The rests should be spaced throughout the day, not lumped together. Most people find that they need to rest quite early in the day, again around lunch time, late afternoon and mid-evening. The rests are a crucial part of managing your symptoms. Try to prioritise them and plan around them, rather than fitting them into your activities. It will be helpful to discuss with your family or friends that you will need to take these rests so that they can support you and will know not to disturb you. Planning You need to aim for 3 rests a day, but you could start with one if you wished. Learning to use a relaxation technique is a complex skill, rather like learning to drive, so give yourself some time to get the hang of it and feel the benefit. You need to find a type of relaxation and music that works for you and have several types, as you will probably get bored if you continually use the same script/music. You can download relaxation music from Amazon, itunes. Perhaps you could borrow some from the library or raid your friends and families CD collection. Use the attached planner (back page) to pencil in your rest times and let your friends and family know and stick to it. 102

4 Rest We recommend you have three to four 30 minute rest times throughout your day. This will top up your energy battery. Why? Rest is the means by which the body recovers from activity, whether physical or mental. It is important to get the right amount of rest for your needs. Too much will cause lethargy and deconditioning. Too little will result in fatigue and an increase in other CFS symptoms due to over-exertion. People with CFS often find it difficult to switch off, even when they are very fatigued the brain remains active, turning thoughts and anxieties over and over. This can be called the washing machine head and it makes it difficult to relax and unwind. The type of rest we would like you to get is similar to the feeling before you go to sleep. Where you are aware of things going on around you, but you are not distracted by them. This type of rest is most often achieved by using Relaxation Techniques. Good relaxation is a learned skill that becomes easier with practice. There are several different techniques to help you relax which will be discussed in the session. To get the maximum benefit from rest you need to create an environment with little or no stimulation. As you know, mental or cognitive activities such as talking, reading or watching TV can be as exhausting as some physical tasks. These should not be used as rest. The rests during the day support the re-programming of the HPA axis. Your body may well complain about the rests at the beginning, but many clients report that their body will naturally wind-down in preparation for their set rest time once it is established and a routine time. 103

5 Sleep Sleep problems can be very typical for clients with CFS/ME. This might be getting off to sleep, waking in the night, sleeping too much or too little and waking feeling unrefreshed. This is typically because your body is not getting to the deep stages of sleep which is restorative. Clients will often have vivid dreams which can be an indicator of this (though not always). Clients can also develop a poor sleep pattern for example being awake until early hours and getting up late morning. These patterns are not helpful long term and we advise clients to have a realistic getting up time and bedtime. Napping We do not recommend day time sleeping and suggest using relaxation as a tool to top up. If you are regularly sleeping in the day you are advised to gradually reduce this. If you are coming to group you will be given further advice on this in the group sessions. Good news! As the rests begin to top up your energy battery we generally find that sleep becomes more refreshing and it is easier to stick to a more normal sleep routine. and finally... We have attached a Rest and Activity Planner for you to use to plan your rest and wind up/down times. 104

6 Rest and activity programme Time Activity Wake up and wind up Get up Rest 1 Rest 2 Rest 3 Rest 4 Wind down Go to bed 105