New to scleroderma? Here’s where to start
Scleroderma and Raynaud's bring with them a complicated array of clinical and medical issues.
The immediate focus has to be on your physical health, but what is often overlooked is the psychological impact of scleroderma and the wider repercussions that it can have on your life.
Whether it is the effect of fatigue or stress on day-to-day activities or the impact of scleroderma on your ability to work, it is vital to recognise this side of living with the condition.
It is paying more attention to the present moment – to your own thoughts and feelings, and to the world around you. It can improve your mental wellbeing.
Some people call this awareness "mindfulness". Mindfulness can help us enjoy life more and understand ourselves better. You can take steps to develop it in your own life. It can help manage levels of anxiety or stress by spending time thinking about the present, as most spend time worrying about the past or future.
It helps you accept the situation, and pain maybe caused by Scleroderma or Raynaud's, it allows you to deal with the situation, rather than panicking.
You can practice mindfulness anywhere. Mindfulness has been shown reduce stress and lowers levels of anxiety. It improves the clarity of the mind which in turn increases creativity to help solve problems, see beyond the pain, develop resilience to pain, and be happier. It helps develop self control to make you feel more in charge of the situation.
The techniques of mindfulness also help with relationships by developing methods to solving problems, and improves communication through knowing how you feel. It streamlines the way you think.
Play the video below to listen to Sarah Leggett and Dr. Oliver Wilkinson who spoke about mindfulness at our recent conference.
Fatigue is a common feature of many autoimmune diseases, including scleroderma. Scleroderma patients 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 than scleroderma, but other medical conditions, such as anaemia, should be tested for.
Gently increasing exercise can improve symptoms of fatigue and this may be a useful strategy.
It is important to maintain good nutrition, establish good sleep habits, stay active, rest and try to spend less energy.
Try to rest before becoming fatigued – 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's 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, don't 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's important to get the benefits 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.