“You’ll never find rainbows if you’re looking down.” -Charlie Chaplin
People choose different moments to reflect on their life with vasculitis. On the eve of my Swiss doctor’s retirement, I felt like it was my turn to write. I have been fighting and adapting to my particular bedmate, Wegener’s granulomatosis / GPA, for nearly 15 years.
I am a 62-year-old Scottish physiotherapist, and I have been living in Switzerland since 1980. Wegener’s struck in 2002, and I have successively suffered from lung, kidney, sinus and multiple joint problems, so I know what many of you are going through because of this disease.
Currently, I am being treated for neurological symptoms in my lower legs related to Wegener’s. Luckily, thanks to research and funding, treatment is available, but a lot of us have to deal with the side effects of medication which can be debilitating. However, my feeling is that anything that keeps us alive and kicking is definitely worth taking!
The things that have helped to keep me on track over the years are my optimism, my ability to adapt to my changing circumstances, my faith, and my sense of humour. My background as a physiotherapist helps me to know the value of exercise. I used to ski, play tennis, ride and run. Now, I can do basic yoga, nordic walking and cycling on a stationary bike.
My advice is to give anything you want to try a go, but always be patient and kind to your body, learn good postural control and don’t exhaust yourself. Learn and use correct breathing techniques to keep your body oxygenated and take advice from professionals to avoid accidents. Try to exercise for pleasure and to give yourself a sense of achievement and satisfaction. Remember that you don’t need to compete when you are in a group or feel that you have to win!
I think that maintaining strong mental well-being is very important and I have used all available help to problem solve along the way. I went to an alternative therapist in the beginning; she helped me to relax, to cry, and to feel less afraid of my body.
At crucial times, a few sessions with our gentle, caring psychiatrist have helped my husband and me to deal with Wegener’s and to fear it less. My attitude is that there is no stigma attached to trying something which may improve your quality of life, especially if it makes your life easier.
I would like to end by thanking the many people who have helped and encouraged me along the way: Dr. A.J. Simpson, who fortuitously diagnosed my illness in Edinburgh and my wonderful, Swiss doctor, Annette Leimgruber, in Lausanne, who has held my hand, orchestrated appointments with other excellent medical specialists and directed my treatment since 2002.
My family in Scotland has always been there for me, as have friends, both here and all over the world.
My biggest thank you goes to my wonderful husband, Peter, who is living this roller coaster ride of alternating hope and disappointment with me. He has never once complained, despite all that I have put him through, and I thank him from the bottom of my heart.