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Coping with CMT

Most information on CMT describes the physical effects of the condition or focuses on how to get practical help, such as benefits or aids to daily life. While these are important, it is easy to overlook your need for emotional and psychological support.

Looking after your psychological (mental) health is just as important as looking after your physical health. Doctors are increasingly aware of the way that one affects the other. Just as ongoing poor physical health can put you under emotional pressure, so ongoing psychological ill health, such as stress, can directly undermine your physical health.

The good news is that CMT has no direct effect on mental health and there is no reason why you should ever suffer from mental illness. However, like many conditions, CMT may affect the way you feel about yourself and the way you interact with other people. From time to time, you may feel a range of different emotions. This is perfectly normal and most people experience these feelings at some stage.

Because CMT changes and develops over time, you may have to adapt the way you manage and cope with the condition. You will need to be flexible in the way you deal, not only with the changes in the condition itself, but also with the resultant changes in your life, including work, family and home. Many people experience a wide range of feelings, and it’s worth developing strategies to deal with both physical and emotional challenges.

Stress

Stress is the mental or emotional strain that we feel when, for whatever reason, the demands upon us are greater than our ability to cope. The impact of chronic illness or disability can produce challenges at work, home or in social settings and these situations can contribute to stress or anxiety.

A little stress now and then is probably a good thing. It helps us keep sharp and respond to danger (stress is part of our ‘flight and fight’ response to danger). However, persistent stress has been shown to be bad for both our mental and physical health – dampening our body’s natural defences. Ongoing negative stress is a contributing factor to depression and should, be tackled early.

Common causes of stress include:

  • long-term illness
  • uncertainty about the future
  • the unpredictability of CMT or other condition
  • disability
  • lack of control
  • financial difficulties
Measures to deal with stress

The important thing is to recognise stress and work out a way to deal with it – the longer you leave it the harder it is to solve the problem and the more damage it can do to you. Here are some suggestions:

  • Change the factors that you can control in your life for the better. Most importantly learn to delegate and say ‘No’
  • Exercise regularly – the natural decrease in adrenaline after exercise may counteract the stress response.
  • Exercise will also help make you fitter and healthier and so better able to deal with the problems of stress
  • Relax – use techniques such as guided imagery, meditation, muscle relaxation and relaxed breathing (a type of meditation)
  • Find a friend – social support can help reduce stress and prolong life. Even virtual friends whom you find on social media can help immensely, especially if they share your problems. Find CMT United Kingdom on Facebook
  • Recognise when you need help – talk to your doctor or social worker, to help you gain control over your symptoms
  • Avoid nicotine, alcohol and caffeine – tobacco, alcohol and drinks like coffee, tea and cola are all stimulants.
  • Rather than calming you down, they tend to add to your anxiety or stress. They also dehydrate you, which can make you feel more tired and less able to cope
  • Sleep – make sure you are getting enough. Too little sleep, or interrupted sleep, makes us less able to deal with stressful events. Too much sleep is not good for us, either. Try to keep to a regular pattern, going to sleep at the same time each night. Avoid caffeine and alcohol in the afternoon and evening and do not watch TV just before bedtime.
  • Rest – if you are ill, do not carry on regardless
  • Listen to your body – if you are feeling tired or thirsty, do something about it.
  • Stress diary – keep a note of when you feel most stressed and why. It may help you identify and deal with the root cause of the stress
  • Manage your time – plan ahead and take things one at a time. It can be helpful to plan time ‘buffers’ so that you have space to deal with unexpected events
  • Be realistic – in the words of the Serenity Prayer, learn “serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference”
Depression

While CMT itself does not cause depression, if the problems caused by the condition are not successfully managed, the ongoing strain and stress may make you more susceptible to mental illness, including depression.

It’s not uncommon to feel ‘down’ at times or to experience dips in motivation and energy levels. This shouldn’t be confused with more serious symptoms of clinical depression or anxiety. Depression is a recognised illness and treatment is available.

In the words of the Depression Alliance, if you are depressed you have an illness which means that “intense feelings of persistent sadness, helplessness and hopelessness are accompanied by physical effects such as sleeplessness, a loss of energy, or physical aches and pains.”

Common symptoms of depression may include (with thanks to the Depression Alliance):

  • feeling tired and loss of energy – bear in mind that CMT will already make you feel more tired than ‘normal’
  • persistent sadness
  • loss of self-confidence and self-esteem
  • difficulty concentrating
  • not being able to enjoy things that are usually pleasurable or interesting
  • undue feelings of guilt or worthlessness
  • feelings of helplessness and hopelessness
  • sleep problems – difficulties in getting off to sleep or waking up much earlier than usual
  • avoiding other people, sometimes even your close friends
  • finding it hard to function at work/college/school
  • loss of appetite
  • loss of sex drive and/ or sexual problems
  • physical aches and pains
  • thinking about suicide and death
  • self-harm

If you think you are depressed you should seek professional help from your GP.

Self-help

Acceptance
Accepting the fact that you have CMT and that it is likely to have an impact on your life can be challenging but it is an essential step to developing your physical and emotional wellbeing. Only through acceptance can you start to take responsibility for your health and put everything into perspective.

Taking control
Although it may seem that you’ve lost control of some parts of your life, it is important to take control of others. The following are examples of how you may want to take more control.

  • Knowledge – generally, the more understanding you have of a condition, the better you feel and respond to treatment. Do be aware, however, that there are huge variations among people with CMT (even within the same family) when it comes to symptoms. There is still no way to predict how CMT may progress or impact your life so don’t make assumptions based on the experience of others.
  • Planning – CMT may diminish your energy levels or restrict your mobility so planning ahead becomes more vital. Taking control can involve thinking about logistical issues such as physical access to buildings and transport, and allowing more time to do things and get about.
  • Perspective – there’s no denying the difficulties associated with CMT, but focusing on limitations only contributes to frustration and stress. Rather than dwelling on what you CAN’T do, try to focus on what you CAN. Positive thinking can make a surprising difference.
  • Problem solving – By getting proper support and by breaking a task down into its individual components you may be able to find a way to do things you thought were impossible.

Contact with others
Talking to others at home, work or leisure is a valuable way to enlist support, explore solutions and boost your morale. Share any concerns you have with:

  • your healthcare team (doctor, physiotherapist, OT). Although your CMT cannot be cured and the root cause of the condition cannot be treated, your healthcare team will be able to advise you on ways to manage it.
  • CMT United Kingdom – talk to others like you on our Facebook page, visit one of our local groups or call us for a chat. You will be able to share experiences and learn methods of overcoming any difficulties you may face.
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