Scleroderma - Newly Diagnosed
New to scleroderma? Here’s where to start
Living with scleroderma may mean that you have some complex medical issues. With the immediate focus on your physical health, it can be easy to overlook the psychological impact of your condition and the wider repercussions this can have on your life.
Many people have found mindfulness and relaxation techniques to be very useful in managing the impact of scleroderma on daily life. Whether it is the effects of fatigue or stress on normal day-to-day activities, or the impact upon your ability to work; recognising the importance of these aspects is vital in maintaining a sense of control.
What is mindfulness?
Mindfulness is all about staying focused on the present moment: on your own thoughts and feelings and the world around you. This can improve mental wellbeing, by helping us to enjoy life more and understand ourselves better. Since most of us spend time and energy worrying about the past or the future, we can help to manage levels of anxiety or stress by trying to live more in the present.
How does mindfulness work?
Mindfulness helps you to accept a situation, whatever this may be. It also enables you to maintain a sense of perspective and deal with things more constructively.
How does it help with pain?
Mindfulness has been shown to reduce stress and lower anxiety levels. It improves the clarity of the mind which in turn increases creativity in solving problems. It can help you to see beyond the pain, develop resilience, and generally feel happier. It also improves self control, so that you feel more in charge of the situation. Always remember that you can practice mindfulness anywhere.
Using mindfulness techniques can also help with relationships, by developing problem-solving techniques. It also improves communication through understanding how you feel, and helps to streamline the way you think.
The following video shows the presentation by Sarah Leggett and Dr. Oliver Wilkinson, who spoke about mindfulness at one of our recent conferences. If you would like more information on practising mindfulness, please visit the NHS website, here.
Fatigue is a common feature of many autoimmune diseases, including scleroderma. People often describe 'hitting a wall' of fatigue that really makes it difficult to carry on without a rest.
After a proper period of rest, the fatigue may improve, so this is a potential way of reducing its impact. Often there is no other specific cause apart from scleroderma, but other medical conditions, such as anaemia, should be ruled out.
Gently increasing exercise can improve the symptoms of fatigue and this may be a useful strategy, although you should discuss this with your doctor and start slowly.
It is important to maintain good nutrition, establish good sleep habits, stay active, rest and try to conserve energy if you possibly can. Try to rest before becoming fatigued and take short, frequent rests; not just to sleep, but to sit down and read a book or listen to music.
Tips on avoiding fatigue:
Scleroderma can be an isolating and overwhelming condition to cope with. It is important to find all the emotional support you can, so please contact us and we will put you in touch with local groups and other individuals who have the condition. You can also chat with other people with scleroderma, their partners and families through our online community.
If you feel you need more help with maintaining good mental health, do not hesitate to speak to your GP about a referral to psychological support services.
Practical support is important too. If scleroderma is limiting your ability to work and live a normal life, it is important to receive the benefits that you are entitled to and avoid any additional financial stress. Visit our UK benefits page to find out more about government schemes, and our other resources page for more information on private and charity grants and support.