Being diagnosed with scleroderma can be devastating, and as the disease progresses, your life is bound to change. However, this doesn’t mean that you have to let scleroderma take over — you can regain control and live a happy and productive life.
According to hopkinsscleroderma.org, there are three main areas that you can take control of:
1. Being physically active
Exercise has been proven to help scleroderma patients. The type of physical activity you do is completely up to you and may be dictated by how scleroderma affects you physically. Choosing a physical activity that you enjoy will mean that you are more likely to do it on a regular basis.
Exercise can help with pain, joint stiffness, muscle strength, depression, and sleep — all areas deeply affected by scleroderma. If physical exercise is out of the question because of pain, think about other activities you could do that would help you to relax and take your mind off scleroderma. Find a hobby you enjoy such as painting, spending time with grandchildren, gardening, or socializing with friends.
Exercise doesn’t have to be strenuous — walking or gentle swimming can help improve overall fitness, and stretching exercises like Tai Chi or yoga can help with muscle strength and flexibility. If you have trouble sitting down, chair yoga is a great option. Try to do something each day that will get you out of the house or break up your usual routine.
2. Being sexually active
As scleroderma can affect the whole body, it’s no wonder many find their sex life dwindles. Pain, fatigue and depression are often reasons why a person may not want to get intimate with their partner. But having scleroderma doesn’t mean you can’t have a sexual relationship, it just may take a little extra planning.
Vaginal dryness can affect many women living with scleroderma but this can be remedied with readily available lubricants. Stiff joints and pain may mean that you need to rethink your sexual positions to find one that feels more comfortable. Some medications may cause erectile dysfunction in men, so it’s important to discuss any side effects of medications with your doctor. Don’t feel embarrassed, there may be alternatives that can be prescribed.
Being open and honest with your partner will help you both to come up with workable solutions.
3. Living with uncertainty
Not knowing what the future has in store and how the progression of scleroderma will affect you can take an emotional toll. Everyone’s journey with scleroderma is different and there is no way to accurately predict how yours will go. If you’re finding it difficult to deal with the emotional side of having a chronic illness, then you should seek professional help. Counselling and depression treatment can help you cope. Staying informed about all the latest news and research will help you gain some perspective and see that science and medicine are constantly evolving — producing better medications and treatments for scleroderma.
Joining a local or online support group will help you to find people who are going through the same experiences. You’ll be able to draw strength from each other and offer and receive both emotional and practical advice.
Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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