A Self-Help Guide to Myalgic Encephalomyelitis 

by Louise Sargent

 

 

Introduction    Balance    Wellbeing    Lifestyle    Final Thoughts


Introduction

I have had Myalgic Encephalomyelitis of varying degrees for the majority of my life, including periods of being housebound and bedridden. Conventional medicine offers us few options, and we’re faced with conflicting advice on living with M.E.; therefore, it’s difficult to know which way to turn. One thing that has struck me is how ‘simple’ management really is, although that doesn't mean it’s easy! Coming to terms with your restrictions and making sensible lifestyle changes are important aspects of self-help. It is imperative that you learn to listen to your body and respond accordingly in order to manage M.E. In addition, it’s important to look after your mental wellbeing just as much as your physical health.

It is difficult to adjust, regardless of your age or circumstances, and of course no two days are ever the same; therefore, you’ll be constantly learning – and making mistakes! I understand that each day is a struggle, but you need to take charge and help yourself through this life changing condition. M.E. doesn't define you, although you do need to accept that it’s a part of who you are. That doesn't mean giving up or losing hope; this is the way it is right now though, and you need to find ways of improving your life. It is important to focus on one day at a time, along with having the confidence to trust your own instincts. Little things will make a huge difference, especially during your most challenging times; therefore, it’s wise to look at every aspect of daily life.

I hope this article gives you the tools to find your own way through this complex world of ours. You will find links to articles on M.E. Support, along with other useful references, but it’s advisable not to give up on the medical profession. The National Health Service is a vast healthcare system, and although many of us struggle to get the help we need, it’s vital that we explore these avenues. Self-help is a vast topic to summarise and I regularly update this page to meet my readers’ needs. However, if there’s a particular area you’d like more guidance on, or the subject you’re looking for hasn’t been covered, please don’t hesitate to Contact Me.


Balance

Pacing

This might sound a little old-fashioned, but it’s important to have a period of convalescence during the early stages of M.E. Unfortunately the outcome of this differs, although, regardless of your subsequent abilities, pacing is paramount. This is often confused with Graded Exercise Therapy, which has been widely criticised, as described in Myalgic Encephalomyelitis Diagnosis, Treatment & Prognosis. Pacing quite simply means finding the right balance between rest and activity. Some people use Pacing & Graded Activity, in which tasks are classified and gradually presented according to the patient's level of function. However, it’s important to remember that your body will tell you what it does and doesn't need. Learning to understand how M.E. affects your body and respecting its limitations is difficult, but I can vouch that this will be your greatest lesson.

Rest & Relaxation

Although rest will bring physical relief, it also causes frustration about being unable to live a normal life. However, as we all know, doing too much leads to Post-Exertional Malaise, which brings a whole new meaning to feeling shattered! I can easily rest my body whilst occupying my mind, such as reading or watching television, but it’s important to relax mentally too. This can be more challenging, especially if you’re under stress, although try to allocate time to switch off each day. The most basic way to do this is mindful breathing in a comfortable, quiet area: close your eyes and concentrate on your breath as you inhale and exhale. Try not to worry about the time of day and just focus on your needs; if you’re struggling to function, consider going back to bed for a while and then try again. What you can’t do one day might be easier the next. Spread out chores over the course of a week. Conserve energy wherever you can, such as doing home shopping, or arranging lifts to and from appointments. Bear in mind that inactivity can be just as bad as overdoing it; after all, even a healthy person can groan from sitting in one position too long!

Activity & Exercise

This leads us nicely onto activity and exercise, but first we need to understand fatigue. When I wake up in the morning I’m tired, unrefreshed and groggy. If something requires mental concentration, my cognitive skills will gradually diminish, I’ll become drowsy and develop a headache. If I do physical activity or exercise, my muscles will tire, pain and stiffness will increase and I’ll crave rest. This will get worse if I push beyond that point, and I’ll eventually need to collapse in a heap (similar to how someone feels after a busy day). Fighting on past this point leads to exhaustion; I won't be taking in information, it will be difficult to form a sentence, and my body feels like a lead weight. My body shuts down when it reaches its limit; I can hear things going on around me, although I’m unable to speak or move.
We are used to living with that morning tiredness. We can manage mental and physical activity, maybe even exercising, by balancing it with adequate rest. However, if you push on without that rest, you’ll need significant time to recover. By taking yourself to exhaustion, you’ll require days or even weeks of recovery time. Reaching your limits is disastrous and you’ll inevitably relapse; maybe not straight away, but if you do it regularly your body will need to recuperate for weeks or months.

You will have no doubt read a lot about managing activity and exercise. However, we’re affected in different degrees and have various demands on our lives, therefore we need to find our own personal limitations. My own tolerance levels vary widely; sometimes physiotherapy and aided walks to the bathroom are all I can manage, while other times I can carry out errands with relative ease, take short circular walks or have a gentle swim in a warm pool. To add to the confusion, what I can cope with during one good period might not be possible in the next! My level of functioning can improve up to 30% on the M.E. Disability Scale, although regardless of how ‘well’ I feel, my body is unable to make further progress – this is often described as hitting the glass ceiling.

Although it’s hard to plan ahead, have a clear view of the coming days and weeks, so that you can balance your rest and activity. For example, if I have an appointment scheduled, I’ll have a clear day’s rest either side of it. Managing time each day needs to be tackled in a similar light; if there are certain things you need to do, allocate sufficient time between them to rest. You can even pace yourself carrying out basic needs; I find bathing surprisingly tiring, so I’ll wrap up in my dressing gown and rest a while before getting dressed. This is when being in tune with your body’s needs really comes into play. Balancing the life of an parent is particularly challenging; you can connect with other families at Mumsnet and ME/CFS Parents, and you’ll find some inspiration in Coping with M.E., a Young Family and Twins! If you’d like some guidance on working with M.E., please refer to Myalgic Encephalomyelitis in the Workplace or Working from Home with Myalgic Encephalomyelitis.

If you’re confined to your bed, you must maintain some movement to reduce stiffness and muscle wasting. With the assistance of your carer, change position regularly and carry out some mild exercises, such as lifting and bending your legs and arms. These types of exercises can also be done from a chair or in the bath: a physiotherapist will be able to give you some guidance. For those able to do some low-impact exercises, I’d recommend trying hydrotherapy, swimming or gentle yoga. Take it slowly and stop when you feel the first warning signs. You should be able to gradually build it up until you find a comfortable level.

Relapses

Relapses are inevitable with M.E., but there are a number of things you can do to minimise the risk, and you can also take measures to help your body recover quicker. Relapses can be caused by overexertion or contributing factors such as infections and stress, although there isn’t always a clear trigger. The frequency and length of relapses varies widely, depending on the severity of M.E. and a sufferer’s lifestyle.

Many M.E. sufferers have an alcohol intolerance; therefore, avoiding or minimising alcohol consumption is vital. Smoking is of course bad for everyone, although M.E. sufferers can feel the effects of environmental pollutants, so keep your home free from smoke, aerosols and spray-on chemicals. M.E. sufferers seem to have an increased sensitivity to a wide range of drugs, which is why prescribed and over-the-counter medications should be taken with caution. I find antibiotics particularly troublesome, but it’s crucial to get medical attention if you’ve got concerns about an infection. Our low immune system makes us prone to catching viruses, so don’t forget to wash your hands, along with avoiding close contact with people who are ill. Most healthcare providers have measures in place for patients with special needs, so try to maintain your health checks, such as regular dental examinations. Mental stress can exacerbate symptoms and ultimately lead to a relapse, therefore it’s important that your stress levels don't become excessive. One of the major sources of stress is finances; you’ll find some useful links in Money Matters, including information about claiming benefits. Physical stress, such as a trauma or surgery, is most likely to have an effect on your health. If you’re having an operation, rest as much as possible leading up to your admission, before ensuring your consultant, anaesthetist and nursing sister are aware of your condition. You will need extra time to recover, so ensure there are measures in place at home for your convalescence. Vaccinations are believed to have triggered some cases of M.E. (you can read about my own experience in M.E. My Story) and they pose a risk of exacerbating symptoms; therefore, it’s wise to consider non-compulsory inoculations carefully. The ME Association provides useful literature on this subject, including advice on Flu vaccinations.

As time goes on, you’ll be more aware of relapse warning signs, and on some occasions, you might be able to stop it developing further. Ideally you need to get some bedrest for a few days; I often hear from people who say their lifestyle won’t allow for this, but your body is crying out for rest, and if you push on you’ll be faced with an even greater impact on your life. It is easy to neglect your health or develop bad habits, so use this time to get back on track, and don’t be uncomfortable about asking family or friends for help when you’re struggling. Although challenging, it’s important to try and keep positive during a relapse as you will improve. You can’t predict how long it will take, which is such a difficult aspect of M.E., so just try to focus on allowing your body to recover. Even when you do feel ‘better’, it’s wise to be extra cautious and not overexert yourself too soon. I have made this mistake many times and had setbacks, although you’ll get a feel for it over time. I occasionally hear from people who have returned to a near-normal lifestyle (which they usually regard as recovered), only to relapse months or years later. Our bodies really do know better than us, so we mustn't ignore the signals, or forget the things we've learnt from living with M.E.


Wellbeing

Diet

Everyone should try to lead a healthy life, although it’s even more important when you’re dealing with ill health. People often clean up their diet when they've got a virus – packing in more vitamins or having a good dose of garlic! That mindset is vital when you’re living with M.E., as you must do everything possible to help your body function. A balanced diet means consuming from the five main food groups in the right quantities: whole grains, fruit and vegetables, protein, dairy, fat and sugar. It is quite common for M.E. sufferers to have Irritable Bowel Syndrome, Candida, and food allergies or intolerances, so it’s essential to get guidance on adapting your diet. People often lose weight during the early stages of M.E., although this should be investigated to rule out other causes. Others notice the pounds pilling on, but simple calorie counting and adapting portions to your activity levels will help maintain a healthy weight. Vitamin supplements are quite popular amongst M.E. sufferers, although it’s advisable to seek medical guidance, as megadosing can cause harmful effects.

Healthcare

It goes without saying that you should get help managing your M.E., paying attention to your most troublesome areas, along with investigating new or changing symptoms. Remember that you are in control of your health. Medical guidance provides us with information and advice, although healthcare choices are ultimately in our own hands. If you see a doctor and you’re unhappy with the advice or care they’ve provided, calmly express your views and ask for further assistance or a second opinion. If you’re looking into alternative measures, ask other M.E. sufferers about their experiences; you can get in touch with people via M.E. Organisations or the M.E. Support Facebook Page. Although I’d recommend keeping an open mind, remember that each case is very different; therefore, what helps one person may not necessarily work for you.

Brain Health

It is difficult to concentrate sometimes, but you must give your brain a workout whenever you're able. There are a lot of brain training games out there, such as Lumosity, which is designed by neuroscientists. I always have a word search book to hand, and most newspapers have a daily selection of puzzles. Although I prefer flicking through magazines, I slowly work my way through books, as reading is one of the best ways to exercise your brain. You can even work your brain with Listening Books or a radio play; close your eyes and visualise the words, immersing yourself in the story. You could write to a friend or watch an educational programme – anything that needs concentration is good for your brain.

Normality

I know it’s easier said than done, but keep some sort of normality in your life. The simple pleasure of pottering about can be especially fulfilling after a bad few days! Maintain some hobbies or interests, as most things can be adapted to suit your abilities; you’ll find inspiring articles by talented people in the Articles Index. I enjoy photography and although my mobility limits me, I can still photograph my view, or watch documentaries about photographers I admire. If there are particular places that you like to visit, or you enjoy going to occasional shows, look into what facilities and concessions they offer people with disabilities. Pets are a real pleasure, and even though you might not be well enough to take care of a dog or cat, a small furry animal or even fish can brighten your day! It can be difficult to socialise, so value whatever time you have with your loved ones, and keep in touch with them through modern technology. Many of us rely on the internet to stay connected with the world, although the glare from electronic devices can be troublesome; Just Get Flux is a useful program which makes the colour of your display screen adapt to the time of day.


Lifestyle

Around the Home

Look at your lifestyle and think about how you can make changes in order to improve it. By this I mean running through what you do from the moment you wake up in the morning, to the time you go to sleep at night.

The best place to start is organise and declutter your home, as it makes such a difference having things easy to find and within comfortable reach. This is obviously a tiring task, so target one area at a time, or ask someone to help you. It is really therapeutic and you’ll feel motivated to look at other aspects of your life.

If you’re having trouble tending to your personal needs, what things could help you manage better? For instance, I’ve adapted my bathroom with a toilet frame, bath board and grab rails. You don’t always need disability aids though, as everyday items can make a significant difference; I’ve got a perching stool to use at the basin (also useful in the kitchen), along with a lightweight hairdryer (look at travel models).

The kitchen can also be a challenging area for M.E. sufferers. There are a variety of useful products out there, from kettle tippers to chopping machines. I have Good Grips® weighted cutlery, which are easy to hold and reduce tremors, although my choice of kitchen basics serves me well. I have lightweight saucepans, along with a selection of crockery in various sizes and weights: I can control food better on a pasta bowl, porcelain cups are ideal when my arms ache, and large mugs help reduce tremors. I am always on the lookout for discounted glassware, thanks to my clumsiness, but plastic versions are readily available. If you struggle to access your kitchen, adapt other areas with some essentials, such as a water carafe or bottle on your side table, or a teasmaid in your bedroom.

Which room do you spend the most time in and how can you make it more comfortable? A reclining chair in the living room could be your new favourite place to relax. I spend a lot of time in the bedroom, which has been adapted with a variety of things to meet my changing needs, such as an adjustable backrest, bed grab rail and overbed table. My electric mattress cover has the added benefit of easing pains, and I wouldn’t be without a good selection of cushions: my leg raiser reduces pain and aids circulation, the ‘v’ cushion supports my neck and back, whilst scatter cushions can support my knees or fit in the small of my back. I have a chair and footstool in my room, so that I can break up bedrest, and visitors can spend a little time with me.

Do not forget that there are many forms of support out there to address your needs at home. For example, occupational therapists will normally visit you to gain an understanding of how your home creates barriers and make appropriate recommendations on the solutions. A social worker can assess you for help at home with simple tasks like shopping, laundry and cleaning, along with intensive home care, such as washing, dressing and preparing meals. Please consult your general practitioner for further details.

Out & About

It is easy to hire wheelchairs and scooters; I initially borrowed one from the Red Cross, along with using Shop Mobility at malls and local events. You can apply to the National Health Service for help hiring or purchasing mobility equipment. However, I’ve purchased two wheelchairs privately with VAT Relief; I was initially wheelchair bound and my Enigma proved to be incredibly comfortable, but I now have a compact Elite Care Fly-Light Transport Chair for occasional use. I have used crutches in the past, which my hospital provided, although I now have a convenient folding walking stick (readily available from chemists). You can buy secondhand wheelchairs and other equipment through local charity shops and classifieds. Try not to feel uncomfortable about using mobility aids; they serve people with a wide variety of needs, and they make a huge difference to your life.

Travelling with M.E. is of course incredibly draining, although you can do a variety of things to make it less taxing. If you’re able to drive, you don’t need to tell the Driver and Vehicle Licensing Agency about your M.E. (please refer to Driving with medical conditions), although you might be able to claim a Blue Badge. I recommend looking into community transport, which can be particularly useful for attending medical appointments. Plan public transport with Travelline and consider applying for help with the costs; I have a Disabled Persons Bus Pass and Disabled Persons Rail Card. If you are taking a trip abroad, don’t forget to make use of passenger assistance, as it will make a significant difference to your journey.

It is wise to have measures in place in case your health takes a turn for the worse whilst you’re out. Everyone, regardless of their health, should have an In Case of Emergency number on their mobile phone. I recommend having something to back this up, such as a medical ID card, mobile app or subscription service. If, however, you’re bed or housebound, consider having a key safe by your front door, or ask a neighbour to look after your spare key. The emergency services are aware of Lions Message in a Bottle scheme; put essential information inside and store it in your fridge, whilst displaying the accompanying sticker on or near your front door to alert them.


Final Thoughts

I recommend keeping notes about daily life and your health, as this will help you identify any patterns, along with assisting doctors in monitoring your condition. I jot down a summary of my diet, sleep and activity, along with prominent symptoms. I keep the diary in a Filofax with various other sections to organise my M.E. brain! There are some great alternatives to standard diaries, such as the Daily Greatness Journal, which will inspire and organise you. You will find a number of health apps suitable for our needs; the M.E. Diary is a versatile tool for managing symptoms.

I regularly hear from people whose family and friends are struggling to accept their illness. However, it’s difficult for everyone involved to understand this condition. Pass on useful websites, books or leaflets, and allow them time to absorb the information. If they approach you with questions, don't be cross with their naivety, as they need to learn just as we did. Unfortunately, some people don’t know how to deal with illness, although that doesn't mean they don't care about your wellbeing.

It is important to live for the now; try not to think of what has been or might be. Comparing your health with better times or worrying about the future is understandable, although it won't change anything! Make the most of stable periods by enjoying life within your boundaries. When a relapse strikes, focus on rest and relaxation, allowing your body the time it needs to heal. If you’re a severe M.E. sufferer, never give up hope and remember that you aren’t alone. I know how desperate life feels; however, your experiences provide you with a profound knowledge and strength, and they’re your building blocks to a more stable future.

Having had M.E. for over twenty-five years, I’ve seen a gradual change in how the illness affects me, both mentally and physically. I find myself coping with certain aspect of the illness better, whereas I need more medical assistance to recover from relapses. I do still get angry and upset about having to live like this, and although it’s taught me a lot, I couldn't manage without help and support. It is completely normal to have questions and concerns, no matter what stage you’re at, and M.E. Support is here to guide you all the way.

 
 

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My brother Stuart and I went to our local screening of Unrest recently, an award-winning documentary film about Myalgic Encephalomyelitis.

Jennifer Brea is about to marry the love of her life when she’s struck down by a fever that leaves her bedridden. When doctors tell her “it’s all in her head”, she turns her camera on herself and her community as she looks for answers and fights for a cure.

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