National Hospital for Neurology & Neurosurgery. Managing fatigue after Subarachnoid haemorrhage (SAH) Neurovascular Team

Transcription

1 National Hospital for Neurology & Neurosurgery Managing fatigue after Subarachnoid haemorrhage (SAH) Neurovascular Team

2 If you would like this document in another language or format, or require the services of an interpreter, contact the Clinical Nurse Specialists directly. We will try our best to meet your needs. Contents What is Fatigue 3 What causes fatigue following a SAH? 3-5 Fatigue management principles 5-10 Relaxation and fatigue Top tips for relaxation Lifestyle analysis Conclusion 16 Where can I get more information? 17 How to contact us 18 Where to find us 19 2

3 This booklet has been written by the Neurovascular Multidisciplinary Team at the National Hospital for Neurology and Neurosurgery. The aim of the booklet is to help you, your family, friends and colleagues understand fatigue following a subarachnoid haemorrhage (SAH). It also aims to identify ways in which you can manage your fatigue. Fatigue both mental and physical, is a frequently reported problem following a SAH. What is fatigue? It is difficult to define fatigue as it is very different for each individual. It may cause overwhelming tiredness and make dealing with everyday activities more difficult. Fatigue can also affect concentration, memory and mobility. Patients often feel very frustrated because they become tired after carrying out simple everyday tasks and feel that this affects their recovery or rehabilitation. It is often difficult for others around you to understand how fatigue affects you and you may feel that this affects relationships. Fatigue levels usually improve as you recover, but his can take several months. What causes fatigue following SAH? It is not clear what causes fatigue after an SAH. It is thought that it may be due to the combined effects of the haemorrhage, the body recovering from the SAH and psychological stress associated with this sudden event. Fatigue can also be due to factors that are not directly related to your SAH and include: 3

4 Sleep disturbance: A change in sleep pattern can cause significant effects on your ability to manage everyday tasks. It can be due to symptoms that can be alleviated or lessened such as pain, urinary frequency and urgency, depression or anxiety. These symptoms are treatable through your GP or your medical team. Infection: Cold, flu and other infectious illnesses may cause or exacerbate fatigue. Exertion: If your mobility or co-ordination is affected, the increased effort required by your body can cause fatigue. Reduced activity can also lead to de-conditioning of both the cardiovascular system and the muscles themselves. This can result in a less efficient use of energy and therefore greater fatigue is experienced. Incorporating exercise into your daily routine is essential for recovery. Medication: Some medications may cause tiredness. If your medications are changed and you notice a change in your fatigue levels you may need to discuss this with your GP or your medical team. Anxiety and Depression: Anxiety and low mood are common after SAH. This can be due to adjusting to what has happened. Low mood can affect motivation and cause you to feel lethargic. There is support available, please speak to your GP or your Clinical Nurse Specialist about what is available in your area. 4

5 Environment: It is important to consider your environment as certain environmental factors can exacerbate fatigue. These may include the number of stairs you have to negotiate or the distance that you have to walk each day. Poor lighting increases visual effort and therefore may increase fatigue. External stimuli in noisy restaurants or shopping centres may intensify fatigue. Many secondary contributing factors that contribute to fatigue can be controlled. By considering the changes you could make to your own routine you will feel better equipped to manage your daily life within the limitations caused by fatigue during your recovery period. Fatigue management principles These aim to help you to manage your fatigue whilst you recover. The six identified principles of fatigue management are: 1. Take frequent rests 2. Lead a healthy lifestyle 3. Prioritise your activities 4. Plan ahead 5. Organise your tools, materials and work area 6. Adopt a good posture 7. Ensure good sleep hygiene It is also important for your relatives, friends and employers to understand your fatigue patterns and the principles you are following to manage your fatigue. This will enable them to help 5

6 you make adjustments to your lifestyle whilst you are recovering. 1. Take frequent rests Rest means doing nothing at all. Balance activities with rests. Allow time to rest when planning a day s activity. Take frequent short rests rather than one long one. Rest before feeling tired. Listening to music or using relaxation CDs may help you to relax while resting. It is important to reduce your rest times as you recover. 2. Lead a healthy lifestyle General fitness is linked to lowering fatigue levels. Try to keep generally fit. Sensible exercises are important, but remember to balance with rests. If you are having specific difficulties doing exercise, your Clinical Nurse Specialist is happy to advise you. In the early stages we advise gentle exercise such as walking. You can then increase your exercise tolerance as you recover. Eat a well-balanced diet. Advice is available from dieticians and your Clinical Nurse Specialist. Excess weight, alcohol and smoking can all increase fatigue. 3. Prioritise your activities Think about all the jobs you do during a typical day or week. You may find it helpful to cut out jobs that can be done by other 6

7 people, such as vacuuming or ironing. Gradually reintroduce these into your day as your fatigue levels improve. Consider getting outside help, for example from agencies. Consider which jobs could be cut out of your daily routine or done less often, such as ironing linen. Think about how you do everyday activities. Could you do these with greater ease? For example, where possible sitting when dressing rather than standing. 4. Plan ahead You may find carrying out a simple task will cause fatigue. This will improve over time and it is important that you try to increase your activities as you recover. Try to put activities in order of priority, so that those that must be done are done before you run out of energy. Make a daily or weekly timetable of activities that need to be done; you may contact your Clinical Nurse Specialist for an example of a timetable. This may be helpful as you can review the activities that you have been able to do and increase these as you recover. Spread heavy and light tasks throughout your day. Set yourself realistic targets. Breakdown large complicated tasks into smaller stages that can be spread throughout the day, for example peel potatoes in the morning to cook in the evening. 7

8 Try to avoid tasks which cannot be stopped at any time should you feel tired. 5. Organise your tools, materials and work area These principles may help: Area A: Shoulder to extended arm height store objects that are lightweight and used less often for example food packages rarely used. Area B: Between hip and shoulder store tools and objects that are in continual use for example tea, coffee and crockery. Area C: From the hip to the floor store heavy and less used items for example casserole dishes, large pots or pans. Area D: From your body to your fingertips with elbows bent your immediate workspace place items in current use. Area E: From end of area D to your fingertips with your arm extended items used less often for example telephone, notepads. Good lighting is essential to limit eyestrain. Good ventilation is important especially in a kitchen when the oven is on. Have a specific area for each job and store essential equipment there for immediate use; for example a tea making area with tea, sugar and kettle in place, washing powder next to the washing machine. Keep your work areas as uncluttered as possible. The larger the grip the easier the task will be. 8

9 6. Adopt good posture Activities should be carried out in a relaxed and efficient way minimising stress on your body which will in turn save energy. Try to maintain an upright and symmetrical posture during all tasks. Rest on a perching stool while carrying out tasks if necessary. Rest in order to reduce strain on your joints and soft tissue, for example sit in a high back chair which supports you whilst doing a task, such as eating or using a computer. Avoid excessive twisting or bending. 7. Ensure good sleep hygiene Try and reduce the time you actually sleep during the day, so that your night-time sleep is not affected too much. Resting is often enough to reduce fatigue. Avoid stimulants such as caffeine, nicotine and alcohol too close to bedtime. While alcohol speeds up the onset of sleep, it disrupts it later in the night. Exercise can promote good sleep. Even gentle exercise (as soon as you feel able) can help with this, but avoid it in the evening before bedtime. Food can be disruptive before sleep. Stay away from large meals close to bedtime and do not use this time to change your dietary habits. 9

10 Ensure adequate exposure to natural light. This will help maintain a healthy sleep-wake cycle. Establish a regular relaxing bedtime routine. Do the same things, in the same order, at the same time every night. Associate your bed with sleep. It s not a great idea to use your bed to watch TV, use electronic devices, read or listen to the radio. Relaxation and fatigue Relaxation can help you to achieve a deeper level of rest than simply sitting down. It can also help to reduce stress and anxiety, which can increase fatigue. Relaxation can also help you to get to sleep at night and allow you to sleep more deeply this will help you to feel more refreshed the next day. What is relaxation? Relaxation refers to consciously allowing the body and mind to let go, release tension and be comfortable. There are several methods which can help. How does relaxation help with fatigue? Initially rests between periods of activity are recommended for people recovering from a SAH when fatigue is a problem. However, many people find it difficult to sit and do nothing or in other words, allow their minds to reset. Relaxation can give a focus to your rest and involves both mind and body. 10

11 How can I achieve relaxation? There are many methods to help you relax including tapes and music. You may decide to use a CD which guides you through the relaxation process. What are the benefits of relaxation? Improves energy levels Leaves you feeling refreshed Mentally more alert Rests the nervous system Top Tips for relaxation Wait approximately two hours after a meal as the digestive process can interfere with relaxation. Choose a quiet place free from distraction. Your body temperature drops during relaxation, so ensure the room is warm enough or cover yourself with a light blanket. Clothing may need to be loosened and glasses or jewellery removed. Find a comfortable position, either sitting or lying. If sitting, have your head supported. Close your eyes to avoid distraction. 11

12 Most benefit is achieved by doing relaxation for at least 20 minutes every day. Practice your chosen technique. Like anything new, it may take few sessions to achieve the desired result. Lifestyle Analysis The following provides advice on personal activities which you may find helpful. Occupational Therapists are experts in assessing and modifying the way people carry out their daily activities. Your Clinical Nurse Specialist can refer you to an Occupational Therapist if you feel this may be of benefit. Remember that change takes time and requires practice and planning. Dressing Try laying out your clothes for the next day before going to bed. Sit whilst dressing whenever possible. Ask someone to help you dress to prevent struggling and using up all your energy. Casual clothes are often easier to put on. Use assistive equipment, such as a long handled shoehorn. Domestic Activities If domestic tasks are difficult or are not a priority for you, ask someone to help or seek help from your local social services. 12

13 Meal preparation Line baking trays with foil to minimise cleaning. Soak pots and pans to eliminate scrubbing. Sit or perch whilst working. Prepare double recipes and freeze half to use later. Use cooking baskets inside saucepans to avoid lifting heavy pans containing hot water. Use good lighting and ventilation in the cooking area. Use electrical equipment such as food processors if possible. A microwave oven can cut down cooking time and cleaning up Shopping Plan menus before going to the supermarket and take a shopping list with you. Use the same shop on a regular basis and learn where frequently bought items are located. Avoid carrying heavy bags. Some supermarkets provide assistance such as people to pack your groceries and carry them to your car, or provide home delivery and wheelchairs. Consider shopping online or ask someone to do this for you. Cleaning Spread tasks out over a period of time. Do one main job each day rather than an entire week s cleaning at one time. Alternate heavy cleaning tasks with light ones. 13

14 Get help or reduce bigger cleaning tasks into several steps. Use a basket or trolley to transport cleaning equipment to save on journeys. Use adaptive equipment such as extended handles for dustpan and brush to avoid bending. Try using fitted sheets and quilts on your bed. Use lightweight storage boxes. Work Following a SAH you may return to work whenever you feel ready, however we would generally advise you to take around three months off. Some people may require a much longer period off work, whilst others may feel able to return to work before this time. It is advisable to reduce your hours when you return to work, gradually increasing when able. The following may be helpful when initially returning to work: Arrange your office so that equipment such as filing cabinets and computer are easily accessible. Use a small Lazy Susan device or similar on your desk for items such as pens, paperclips and tape. Consider labour saving devices; try using a telephone support for long conversations or assistive computer software or a dictaphone. As much as possible, try to reduce the travelling involved in getting to and from work and during the course of your working day. 14

15 A fixed parking space near to the entrance may initially be helpful. Try to find a place to go for rest periods. Use a trolley to move materials from A to B. Delegate run around jobs to others whenever possible. Leisure Try and lead as full a life as possible, spending some part of each day doing something you really enjoy. Plan your social events and late nights so that they do not occur in a row. Choose quieter times to go to restaurants/cafes/bars to reduce noise overstimulation. Consider sitting facing away from the busiest areas. Be mindful of time spent using computers, tablets and smart phones as these can increase fatigue. If a job takes a long time to complete in one session, break it up into smaller sessions. 15

16 Conclusion The principles discussed in this booklet are aimed to help you develop an understanding of fatigue and factors which cause fatigue for you as an individual. As you recover from your SAH you can begin returning to your normal activities. Reflecting on your diary will help you to demonstrate that you have perhaps been able to increase your activities and that the fatigue is improving. It is important for your relatives, friends and employers to understand your fatigue whilst you recover. This understanding will enable them to help you make adjustments in your lifestyle. 16

17 Where can I get more information? The Brain & Spine Foundation Telephone: Helpline: helpline@brainandspine.org.uk The Stroke Association Helpline: info@stroke.org.uk Website: Headway Helpline: helpline@headway.org.uk Website: The Disabled Living Foundation Helpline: helpline@dlf.org.uk Website: UCL Hospitals cannot accept responsibility for information provided by other organisations. 17

18 How to contact us Neurovascular Clinical Nurse Specialists The National Hospital for Neurology and Neurosurgery Queen Square London WC1N 3BG Direct line: Switchboard: Extension: Website: 18

19 Where to find us 19

20 Space for notes and questions Publication date: June 2005 Date last reviewed: April 2018 Date next review due: April 2020 Leaflet code: UCLH/NHNN/NVASC/FAT/PIL02 University College London Hospitals NHS Foundation Trust