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LIVING WITH NMO

From Fatigue To Energy

INTRODUCTIONIs Fatigue part of your life in living with NMO?This booklet has been written for those people with NMO who experience fatigue in their daily lives.

Currently, no specific research has been conducted to explain the reasons for fatigue in NMO; however it is a symptom that is widely reported by patients attending NMO national clinics in Oxford and Liverpool. At the annual UK 2013 NMO Patient Study Day 100% of attendees opted to attend a workshop on the subject. Thoughts, tips and personal experiences were gathered and have been included with the kind permission of those people.

As with all NMO symptoms no two people are alike. Some people report fatigue has a significant effect on daily life whilst others find they notice little change to their energy levels.

It is known that by implementing fatigue management strategies greater control can be achieved leading to a greatly increased quality of life.

It is hoped the booklet will provide you with explanations, reassurance and ideas to maximise your energy levels and tips to use your energy levels effectively.

Thank you to all those who have shared their personal experiences.

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FOREwORD

Kay Day

Kay qualified as an Occupational Therapist in 1991 and has since worked extensively for the National Health Service and charitable organisations.

She developed a specialist interest in information provision whilst working at the Oxford Independent Living Centre.

Kay now specialises in working with people with neurological conditions at the Oxford NMO Clinic and the Neurosciences Occupational Therapy Department at the John Radcliffe Hospital, Oxford.

ThaNk yOU

Thank you to:

•All the people living with NMO, family and friends who teach us what it really means to live with NMO.

•All those who have shared their personal experiences for this booklet

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CONTENTs

PART ONEFatigue experiences 6

What is fatigue 7

Living with fatigue 7

The link between fatigue and 8 other neurological conditions

The causes of fatigue in NMO 10

PART TWOManaging fatigue - The principals 11

Maximise your energy supply 12

Using energy effectively 20

PART THREEFatigue to energy action plan 25

What is depleting my energy supply? 25

What tips should I try to help? 25

Using my energy more effectively 26

Glossary of terms 52

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PART ONE

FaTIGUE EXPERIENCEs“Sleepiness, muscle weakness, lethargy, low levels of concentration, forgetfulness,I fall asleep whilst drinking tea and its cold when I wake up!” Parveen

“It’s not just the actual fatigue that is a challenge it’s the emotional baggage that comes with it, feeling guilty e.g: I should be able to work full time, feeling lazy, unable to move. Should be able to wash up, feeling like you have to put on a show. Not being able to think straight and sometimes string a sentence together . She’s milking it, making it up” Lily

“So fed up of working, my body gives in, mind switches off, it needs a reboot. By Friday my brain is experiencing system failure – please restart!” Anon

“I could wake up and not have the strength or energy to get out of my nightdress, I would literally spend the day falling in and out of sleep. If I get up full of beans and I go out shopping etc when I get back I sink into my sofa and I am out like a light. Later on I didn’t let this stop me from going to the gym, pursuing a counselling course and going to weight watchers” Murna

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whaT Is FaTIGUE?“Lack of energy, everything seems like hard work” Anon

• An overwhelming feeling of tiredness• A subjective experience• A lack of mental/physical energy that interferes with usual activity• A “hidden symptom” which can be misunderstood by family, friends, colleagues and health professionals• Difficulty initiating and sustaining mental/physical effort

LIVING wITh FaTIGUE“I can’t do as much as I used to do in a day, I have to pace myself. I sometimes feel so tired I don’t know what to do with myself, it makes me feel so unwell” Anon

“ Want to lie down all the time, lack of energy, don’t eat properly, lack of motivation, every day chores seem like hard work” Anon

“My memory loss seems to be a result of fatigue, although I sometimes feel too tired to remember why! Absolute exhaustion, the only cure is sleep. Feel like a Duracell Bunny whose batteries have finally run out!” Althea

“My biggest problem is that I get really tired by the afternoon and fall asleep but then have trouble sleeping at night. I’ve been so tired that I can fall asleep anywhere, anytime. I have actually fallen asleep standing in the supermarket holding onto my trolley whilst shopping. When I get tired my blind eye starts to wander as it can’t concentrate and follow the other eye like it normally does” Anon

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“Yawning all day long, even just after waking up. Fall asleep when sat down in a comfortable chair, especially in the evening...Can get bad tempered and snappy when I am overly tired. I wake up a number of times in the night and don’t seem to get a refreshing sleep, is this contributing to my fatigue?” Sandra

ThE LINk BETwEEN FaTIGUE aND OThER NEUROLOGICaL CONDITIONsMany people with a neurological condition experience fatigue at different times, why is this the case?

1. The Healing Process – extra energy is required by the body after an event such as an NMO relapse, the body will be working hard to compensate for the changes that have occurred. With time the fatigue is likely to improve or go completely.

2. Lifestyle Factors – living with a long term neurological condition is not easy, learning to do things differently, adapting to a different pace or way of life and coping with the psychological impact can all effect energy levels.

“Fatigue is part of my life and plans have to be made beforehand for every trip or appointment to deal with it. After going from 12 hour shifts to not being able to cope with so much fatigue it is so frustrating. Feeling guilty for my wife and family” Anon

“Lack of energy, everything seems like hard work” Anon

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“What happened at the end of the film..I must have missed the end! I am having a slow day today, can you fill up the coffee jar please?” Gail

“I only realise how tired I am after doing things such as gardening. My brain doesn’t process it straight away, this often causes me to overdo it” Ann

“Going back to bed for a sleep doesn’t take the fatigue away. My brain is tired, too weary even to sleep” Bill

“ As a family member I think it is vital to know how I can help to understand the effect fatigue has on daily life. How can I make things easier for her...?” Nerys, relative

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ThE CaUsEs OF FaTIGUE IN NMOUnlike conditions such as Multiple Sclerosis for which there is an understanding of fatigue through research, fatigue in NMO is currently based on “anecdotal accounts” (i.e. we rely on descriptions from people suffering the symptom) from clinics.

It is thought the causes of NMO reported fatigue could be two fold:

1. Primary Fatigue – Caused by the process of the NMO attack on the central nervous system. A short circuiting of nerve messages occurs to muscles, the messages do not flow as smoothly resulting in over or under activity. This in turn results in fatigue. The effect of this can be short term or longer term dependending on the severity of the attack, resulting recovery and response to treatment.2. Secondary Fatigue – Common to millions of people worldwide living with a long term condition. Caused by one or several triggers:

• Poor sleep • Heat sensitivity • Low mood • Stress and anxiety • Lowfitnesslevels • Medications • Infections and relapses • Pain • Continence issues

Many of the above triggers can be have an effect on each other.

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PART TWO

1. MANAGING FATIGUE – THE PRINCIPLESIt is possible with a greater understanding of your own fatigue to more effectively manage and control it.

It can be helpful to think of your energy supply as a given amount for each day, some people think of it in the form of a battery, a fuel tank or a bucket of water. This supply has to be carefully managed for you to participate in the activities you wish to do. You do not have a finite amount

The techniques require time, an acceptance that trial and error will be necessary and a willingness to take a careful look at your current coping mechanisms.

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Management can be approached from two directions:

1. Maximise your energy supply2. Use your energy effectively

2. MaXIMIsE yOUR ENERGy sUPPLyThis approach is all about working out what factors may be depleting your daily energy supply, this will be different for each person at different times. Causes could include one or some of the following: poor sleep, heat sensitivity, low mood, stress andanxiety,poornutrition,lowfitnesslevels,medications,infections and relapses, pain, continence issues. Many factors are linked to each other and so time will be needed to work out the causes for you.

POOR SLEEP

“My biggest problem is that I get really tired by the afternoon and fall asleep but then I have trouble sleeping at night...” Anon

“I feel a power nap does the trick ...” Anon

To help:• Try to find ways of reducing the impact of continence problems, pain or spasms• Keep the bed a place for sleeping (exception your love life!)• Make lists of things that need to be done the next day before bed so that they don’t play on your mind

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• Cut down on stimulants, including caffeine loaded drinks and nicotine• Try to keep regular hours for going to bed and waking up• Have a warm, milky drink• Ensure bedroom is not too light• Keep a pad and paper handy to write down any thoughts that may be keeping you awake • If you are not asleep by twenty minutes get out of bed and do a mundane activity until you feel sleepy again• Try relaxation techniques or deep breathing techniques• Practice mind games such as recalling all places beginning with a certain letter• Some people will find benefits from a change of mattress and possibly an electric profiling bed – care should be taken and impartial advice sought to avoid a costly mistake via your local Independent Living Centre. Hiring initially can help you establish any benefits for you.

Find your nearest Independent Living Centre by visiting www.assist-uk.org

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HEAT SENSITIVITy

To help:• It is possible to feel more tired when hot due to the effect on transmission of nerve messages within your body. Try cooling techniques such as a cool bath, sucking on ice cubes, electric fans.

LOW MOOD

“Remaining motivated when you are experiencing tiredness and fatigue with an active young family takes a lot of determination. Often you have to go through the motions and the energy sometimes comes” Anon

To help:• Low mood is linked to low energy levels and low energy can result in low mood. It is completely understandable for a person’s mood to be effected by a diagnosis of NMO. IMPORTANT ADVICE If you are concerned that your mood is low or that you may be depressed seek help as many strategies can help including talking therapies, medication and exercise. Contact your GP or NMO team who can refer you to specialists locally.• A high percentage of people living with a long term condition experience low mood at different times – help is available. • You can help to break the cycle by attempting to be more active, prioritising enjoyable activities, attending a local self management course or having contact with positive people.

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STRESS AND ANxIETy

“...stress eats up my energy faster than physical work...” Mr Pacman

“Frustration at not being able to do what I want to do. Fatigue makes me tired mentally and physically, because people can’t see it they don’t understand” Anon

To help:• If left unchecked stress can directly effect energy levels. It is not possible to remove all sources of stress however it is possible to more effectively manage it. Try to recognise the causes for you, take charge of your emotions, thoughts and actions, keep things in perspective and try to focus on the good things that are happening now.• Relaxation techniques are activities that generate a feeling of complete calm, it is an active skill that requires practice, requiring mental and physical rest. The techniques can also help to promote good sleep.• Types of relaxation techniques: deep breathing, muscular relaxation, massage, aromatherapy, visualisation techniques, yoga, pilates, tai-chi.

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POOR NUTRITION

“It is not that tea doesn’t help, I don’t have the energy to make it....” E.S

To help:• A healthy and well balanced diet is required to provide optimum energy levels• The rate at which sugars are released from foods is called the glycaemic index (GI). Meals and snacks rich in complex carbohydrates such as milk, fresh fruit, yogurt, oat cakes and wholemeal bread have a low GI giving a slower more sustained energy release• Insufficient fluids especially water can lead to dehydration leading to feeling of tiredness. Ensure you drink regularly before you feel thirsty. A tip to help can be to fill a jug or bottles of water for the day so that you can see how much you are drinking. If you feel hydration impacts on continence issues try to seek help to resolve these.• Tips for reducing fatigue in food preparation: 1. Cook at times of the day when energy levels are higher, 2. Make use of labour saving devices 3. Use some healthy ready prepared foods e.g grated cheese 4. Try a wire basket placed in a pan to help reduce the weight when draining, available from hardware stores, on line or Independent Living mail order catalogues 5. Steaming food and using a microwave all help to reduce weight.

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6. Sit down to prepare food, batch cook and prepare meals in stages if you are at home for the day. 7. Frozen fruit and vegetables all provide excellent nutrition 8. Try to eat main meals when energy levels are higher, 9. Consider a meal delivery service such as www.wiltshirefarmfoods.com

Take a look at NMO booklet “Living with NMO” for more ideas.

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LOW FITNESS LEVELS

“...when I am in the garden I overdo it and my legs give out...I go to the gym regularly and work hard, when I get home I feel tired but not whilst doing gym...” Ann

“My fatigue is physical, my legs get tired. I read a quote that it is like walking through a muddy field and that is what it is like for me. The further I walk the deeper the mud is until I am stuck in the mud. I have to sit down, after a few minutes I can go on again. If I am at home I rest with my legs up. Mornings are good ......” Anon

To help:• Daily activity and exercise is essential for a healthy lifestyle.• Low activity levels = de-conditioned and underused muscles = lower stamina = activities become more demanding = person requires more energy > FATIGUE• Activity improves sleep, provides psychological benefits from the release of endorphins and assists in the control of weight (especially helpful to those taking steroid medication).• Any activity above the energy expenditure of resting is of benefit, any activity from dusting to gardening to swimming• Take a look at NMO booklet “Staying Active With NMO” for further ideas or seek the support of your NMO physiotherapist who can direct you to local sources of support.

MEDICATIONS

“Everytime I sit down I go to sleep, medication makes me tired, unable to do things I used to do such as housework. I played Crown Green Bowling which is now very difficult and I am now unable to drive because of falling asleep. I have lost confidence in going out alone” Pauline

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To help:• Some medication can increase drowsiness and worsen fatigue. Discuss with your GP or NMO service. Remember NMO medication is a vitally important part of your NMO management, fatigue is likely to be for a number of reasons, detective work will be required first to clearly identify your triggers.

INFECTIONS AND RELAPSES

Infection can increase body temperature e.g urinary infections and cold viruses this increase in heat can result in interrupted nerve messages requiring more energy.

An NMO relapse is likely to increase fatigue as the body attempts to repair itself and the person adapts to a possible change in function.

To help:• Contact your NMO Service immediately if you suspect an NMO relapse.

CONTINENCE ISSUES

Continence issues both for bladder and bowel can be common for people who have experienced an NMO attack on their spinal cord. These issues can directly effect energy levels.The issues can effect sleep, lead to feelings of low mood and anxiety, result in inadequate hydration, and reduce ability to be active to name a few.

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To help:Help is available, your NMO specialist nurse can provide advice related to better management and make local referrals to your continence advisory service. Valuable information is available from 1. www.bladderandbowelfoundation.org Helpline: 0800 011 46232. www.promoconshop.co.uk Helpline: 0161 607 8219

PAIN

Many people with NMO will confirm that pain issues can significantly impact on energy levels.

To help:• Discussion with your NMO service is important to match the correct medication to your particular pain. Other pain management strategies can also be taught to help alleviate symptoms.• Valuable information can be viewed at www.painsupport.co.uk

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3. USING ENERGY EFFECTIVELYIt is vital to use your daily energy quota in the most effective way. By trying to incorporate some of the ideas below into your daily life you will regain more control over fatigue.

Many analogies can be used:Think of a project manager on a building site – planning, prioritising, delegating, using energy efficient strategies (why use a spade when the digger can do it in a flash?) and pacing techniques – all to get the job done as easily as possible. You can manage your fatigue in the same way.

Effective use of these techniques will require a learned awareness of your own triggers for fatigue, this will take time and require carefully identifying what increases your fatigue in different situations.

1. PLAN

Ideas• Use a diary, notebook ,your mobile or computer• Take time to stop and think what needs to be done – make lists• Are you realistic in what can be achieved?• What is essential, desirable and what does not need to be done?• Carefulplanningwillleadtolesshalffinishedjobs• Planning allows you to carefully allocate energy to tasks, try to limit tasks which require a lot of energy, plan in less tiring tasks and breaks.

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2. PRIORITISE

Ideas• Prioritise from your lists, this will help you feel more in control and that you are achieving• Try to prioritise your most important tasks when your energy levels are higher• Doing things differently – practice breaking tasks down into “bite sized chunks”. If you are at home and wish to cook the evening meal do not do it all in one go at the end of the day when energy may be running low. Why not prepare vegetables in the morning, make the sauce in the afternoon.......• Make sure to try to prioritise energy for fun and enjoyable activities for you, if it is a toss up between energy for the hoovering or meeting a friend make sure the hoovering waits for another day!• Refer to “The Spoon Theory” – Living with NMO booklet – “Movement, Mobility and Travel”, p.17 www.nmouk.nhs.uk

3. DELEGATE

Ideas• Remember the analogy of the project manager on the building site – the most effective managers are those that successfully delegate tasks. You can more effectively manage your fatigue by delegating to family, friends and colleagues• Delegating tasks can feel scary and create a sense of loss of independence. With time and practice you may be surprised how willing others are to help once they clearly know how best to help you.

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4. USING ENERGy EFFICIENT STRATEGIES

Doing activities in the most energy efficient way will make the most of your daily energy supply.

Ideas will take time to incorporate into your daily life but can be implemented in all aspects of your life – have a go, you will be surprised how much energy you can save.

Ideas• Make use of technology and labour saving equipment• Keep wire baskets in pans to reduce weight when lifting, steam food, microwave.• Organise your kitchen/office so that everying you need is close at hand• Sit rather than stand to carry out some activities e.g ironing• Consider keeping a selection of frozen meals in your freezer• Batch cook to have nutritious meals available for other days• Think about how many times you go up and down stairs if they are a trigger for you, bring all that you need down with you in the morning• Consider different walking aids at different times – a wheelchair may mean the difference between going out with a friend to something enjoyable or not having the energy to.• Incorporate ideas into your workplace to conserve energy.• Under the Equality Act employers are required to make reasonable adjustments. Your local disability advisor at jobcentre plus can provide further advice , also www.disabilityalliance.co.uk produce workbook “Doing Careers Differently”

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5. PACING TECHNIQUES

This technique can feel unfamiliar to a person who is used to going “full steam ahead” until a task is completed. It is simply taking planned breaks or rests within or between activities – simple but effective!

Ideas• Doing tasks more slowly or taking regular breaks can help fatigue from building up. Use a timer to prompt you, a pop up message on your computer or a sticky reminder note on the fridge.• By using pacing techniques you will be able to achieve more and feel more positive.

Contact your NMO Occupational Therapist to discuss ideas and strategies further – good luck

Further helpful reading

Living With NMO series available www.nmouk.nhs.uk

Living With Fatigue – fatigue management for people with MS www.mstrust.org.uk Tel: 01462 476700

www.brainandspine.org.uk/fatigue and neurological conditions

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PART THREE

FaTIGUE TO ENERGy aCTION PLaNUse this section to begin to create your own personal action plan. Persevere, it will take time and trial and error.

1. WHAT IS DEPLETING My ENERGy SUPPLy?

Poor sleep

Heat sensitivity

Low mood

Strees and anxiety

Poor nutrition

Infections

Relapse

Continence issues

Pain

2. WHAT TIPS SHOULD I TRy TO HELP?

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3. USING My ENERGy MORE EFFECTIVELy

Remember! PLAN, PRIORITISE, DELEGATE, BE ENERGY EFFICEINT.

Write down your ideas below.

• PLAN

• PRIORITISE

• DELEGATE

• BE ENERGy EFFICENT