Healthfulness encompasses many strands including diet, sleep, exercise and management of stress levels. A number of PNH patients report that stress makes their symptoms worse.
There are many lifestyle factors that could enhance your quality of life and assist with management of energy levels. A few suggestions are set out below.
When you are not sleeping well and tired as a result or just tired, eating properly or eating enough is hard as you may not want to cook a meal, especially if you live by yourself. It is important to get enough nutrients and energy to live a full and active life in the daytime which helps the mind and body to feel tired (in a good way) at night.
Iron is a mineral found in some foods. It is crucial to good health and to our mental and physical wellbeing. It helps to carry oxygen to the brain and muscles. if we don’t have enough iron in our blood, we feel tired, have difficulty concentrating, feel cold and are less able to fight infection. Iron is found in many foods. There are two types of iron: Haem iron (well absorbed) Non -heam iron (poorly absorbed)
Foods high in heam iron include:
Meat – all kinds especially red meat, liver and kidney. Chicken and pork contain smaller amounts. All kinds of meat products especially liver sausages, liver pate, corned beef and black pudding.
Tinned Fish especially sardines, salmon, pilchards and tuna.
Other – Bovril
Foods high in non-haem iron include:
Breakfast cereals especially wholemeal types and those fortified with iron
Wholemeal products such as biscuits, bread and flour
Dried fruit such as sultanas, raisins, apricots and prunes.
Vegetables – dark green leafy vegetables such as broccoli, spinach and watercress.
Beans such as blackeye, kidney, mung, baked and haricot.
Peas including chickpeas, split peas and dried peas
Other – liquorice, chocolate, cocoa and curry powder.
In order for the iron in food to be well absorbed, you also need to consume plenty of Vitamin C. Vitamin C is only found in fruits and vegetables.These foods are high in Vitamin C: green, red and yellow peppers, citrus fruits such as oranges, grapefruit, lemons and satsumas, fruit juices (most types), kiwifruit, blackcurrants and strawberries.
Exercise Evidence shows that a regular moderate amount of exercise is the best way to help fatigue and get a good nights sleep. There is also evidence to show that the natural environment can ease anxiety and boost every level. Brief walks are a good idea but don’t overdo it. You want to feel the benefit of fresh air and nature and build up muscle tone. You do not need a gym membership.
Sleep Hygiene Sleeping through the day can result in loss of conditioning and muscle debulking and can make fatigue worse. Experts recommend a maximum of 45 minutes of proper sleep i.e. in the dark, in bed, not dozing in front of the TV. Sleeping through the day is said to ‘steal’ from the night’s sleep. It is not uncommon to wake at night and not be able to get back to sleep – learning relaxation techniques are helpful.
Low Mood and Stress Both low mood and stress can be caused by fatigue. Seek psychological support and don’t be afraid to share burdens. You can ask your clinician or GP to refer you or there is a counsellor and occupational therapist service available at Kings College Hospital if this is local to you.
Balance There will always be good and bad days where you are more or less tired or sleep more or less well. Try not to do too much, for example, plan three or four things to do a day and make one of them something that is enjoyable or meaningful for you – this will hopefully lift your mood.
Pain It is tiring to be in pain and pain itself causes fatigue. Seek help.
Mindfulness Mindfulness is a form of meditation which can be traced back to ancient Hindu and Buddhist teachings. It is increasingly used in the West as a form of positive psychological practice to ease or alleviate different forms of mental and/or physical conditions including pain, stress and fatigue. See www.mindfulnet.org for more information.
Spoon Theory This is a theory that a person’s energy supply can be measured in spoonfuls. Imagine you have a finite amount of spoons and decide how you will spend them during the day. Founder of the theory, Christina Miserandino explains that when living with fatigue, you live with the knowledge that you have fewer spoons than others and you must make choices to spend them wisely i.e. one spoon might be expended to cook dinner but there might not be enough to wash up afterwards. See www.butyoudontlooksick.com for more information.
Qi Gong Qi Gong is a healing discipline for the body, mind and spirit. There are many types of Qi Gong – standing, walking, seated meditations as well as active Qi Gong exercises. The word “Qi" means breath, basic energy for movement, life force. The more we safeguard and build our energy, the more we have at our disposal. Building up the energy starts with healthy eating. Both meditative and active Qi Gong put emphasis on abdominal breathing and posture. It is vital to maintaining natural, relaxed and harmonious posture at all times. Our energy follows our intention. One practice with intention of rooting to earth, feeding our bodies with energies from nature and focusing on healing oneself.
Tai Chi Tai chi is derived from an ancient Chinese martial art and is characterised by gentle, low impact movements which can help with reducing stress, improving balance and increasing energy levels.
Yoga Yoga is an Indian physical, mental and spiritual discipline. There are a variety of schools, practices and goals. Apart from the spiritual goals, the physical postures of yoga are used to alleviate health problems, reduce stress and make the spine supple. Yoga is used as a complete exercise programme and physical therapy routine. There is evidence to suggest that regular yoga practice increases brain GABA levels. Gaba is the chief inhibitory neurotransmitter in the mammalian central nervous system and in humans, is directly responsible for the regulation of muscle tone. Yoga has been shown to improve mood and anxiety more than some other metabolically matched exercises, such as walking. It plays the principal role in reducing neuronal excitability throughout the nervous system. Some practices of yoga incorporate more mediation, breathing and relaxation exercises than others.