A Self-Help Guide to Managing Myalgic Encephalomyelitis
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. You can read an extract of my article, A Self-Help Guide to Managing Myalgic Encephalomyelitis, in this month’s blog post.
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.
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 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.
Please continue to A Self-Help Guide to Managing Myalgic Encephalomyelitis
for part two of this article.