Living with Polymyositis - Peh Xiujuan
"Everything happens for a reason."
I am Xiujuan, a mother of a 9 years old boy. Currently, I’m working part time in banking operations.
I developed my autoimmune condition a few months after I delivered my boy in 2012. Initially, I just felt fatigued and lost weight. I thought it was unusual to be losing weight so quickly but I didn't think I could be sick. Soon, I became lighter than my pre-pregnancy weight. Everyone told me I don't look good. Again, I attributed it to the night feedings and not having adequate rest.
What really struck an alarm in me was how weak I quickly became. I noticed I was unable to get out of bed easily. I had to hold to the side of bed and push myself up. I had difficulty opening an umbrella when I had to. It was difficult to raise my arm up or even put on my bra myself. I told my close friend and her sister-in-law, who is a nurse, advised me to go A&E to have a check.
When I was in A&E, the aircon was blowing so hard that my finger joints turned white. The doctor told me this is Raynaud's syndrome. They decided to have me warded to find out what was wrong with me. I believed they ran all the possible checks on me from head to toe and of course plenty of blood tests daily. Eventually they narrowed it down to possibly polymyositis. One of the markers for this condition is creatine kinase (CK), the enzyme produced when muscles break down. A normal person will normally be in the 100-200 range. Doctor told me my CK was 9000. If I delayed further in seeking treatment, I could have ended up in wheelchair or even losing my life. They also did electromyography (EMG) in which needles are poked into your muscles to detect electrical activity as you contract and relax the muscles. Oh, I really hated that. I also did a biopsy on my left arm to extract some muscles for them to check under the electron microscope in order to confirm the diagnosis. The final diagnosis came as MCTD (mixed connective tissue disorder) - main condition as polymyositis (multiple inflammation of the muscles) and scleroderma. During the hospitalisation, I was feeling quite ok physically. Suddenly, I didn't have to breastfeed my baby and I can sleep through with no night feeding. I could get the rest that I badly needed. However, I was not coping very well mentally and emotionally. My baby was only 6 months old, so my husband had to take over the duty of looking after him. I understand that but because he seldom comes to visit me, I felt really lonely sitting in the ward. Many negative thoughts ran through my mind like "What if I don't live long enough to see my baby grow up?" Even though my family and my friends came visiting, I felt like I have to put on a brave front so as to not worry them. I was so overwhelmed by these feelings that one night I just burst out crying in the room. A nurse happened to come in and she gave me a really tight hug and allowed me to cry my heart out. I could still remember how gently she patted me on my back telling me, I am going to be ok.
I am thankful for my husband who has been very supportive and allowed me to switch to part time work and my baby who is already 9 years old and bringing so much joy to my life. I am also blessed in a way that my disease doesn't really affect my work as I am mostly desk bound. My finger joints were swollen so I could not hold a pen properly but thankfully it didn't affect my typing. Personally, I feel my disease has changed the way I view my life. I learnt to take things slowly and prioritise my health.
Medication and going for regular check-ups are a must to cope with our autoimmune conditions. I also take supplements and try my best to exercise and go on regular hikes to keep healthy.
I used to ask myself the same question "why me?" over and over again. Through this almost 10 years journey, I learnt not to fight against my autoimmune condition but to listen to my body and think "What do I need to make it feel better?" Deep inside, I wish for a remission. But it is ok if it doesn't happen as I have learnt my way to cope and continue to lead and enjoy my life. I hope you can too.