It was in 1991 when I began to notice problems with my right shoulder, the only conclusion by any of the medical professionals I saw was that my symptoms were being put down to having had a virus of some sort in the muscle or shoulder of my right arm. Not long after this I had discovered that a friend of the extended church family had been diagnosed with MS. This is when God gave me a piece of my life’s puzzle; while in the car with my mother and Nan, God told me that the problem I had begun with ‘M’. Not knowing what to do with this information and feeling as though I was going crazy, I let it be and occasionally would be reminded by it and wonder why I was given this piece of the puzzle.
Over the years I had experienced times of complete pain and physical limitations of what I could do, walking became difficult at times and the problems had spread from it just being one shoulder to now being both, any testing that was carried out at the time could never identify the cause of it all, which only leads to one thing, to me and I am sure to the doctors and specialists that it seemed it was all in my imagination. When things flared up again with my shoulders and arms in September of 2013, I went to my GP, fearing that he would only end up telling me what so many doctors had told me before. He began a battery of tests that he was able to do that extended over two months.
In August of 2013, I was four subjects away from completing a teacher aids certificate, for each of the subjects I had to finish it with a project, one where I had to choose a disability and describe how this would impact upon a child and their learning and what strategies that could be used to assist the child in learning. For my final subject I decided to research a physical disability instead. This is when God gave me another piece of my life’s puzzle, although at the time I thought that it was a spur of the moment choosing of my own accord, I now know God led me to research the disorder Muscular Dystrophy…a disease starting with M. The piece of puzzle given to me many years before was placed before me again.
As I was reading the information about Facioscapulohumeral Muscular Dystrophy, I began recognising the similarities between what has happened to my body over the years: the limitations of what my body are faced with day to day and the descriptions of the symptoms of FSHD. I immediately rang mum and told her of my thoughts and suspicions. However, with no one else as yet having been identified in any of my immediate or extended family as being diagnosed with this disease, it was a mystery as to the origin of the muscular dystrophy.
The road to medically discovering the answers was long. I had been referred to a Specialist who treats problems with shoulders and arms in early January 2014, he took one look at my posture, maneuvered my arms here and there, sat down and said “I think you have….” At which time we both said together ‘MD’. From here testing began with a Neurologist. Although I had been living with the effects of this condition for the last 24 years, the time it was taking for the results of each test, to me, seemed to be equivalent to 24 years it had taken to get to this point.
For 10 months from February of 2014 I was in complete pain and discomfort, day in and day out and the full dosages of medications were not enough to ease any of it. There are times when my legs just wanted to collapse from under me, and didn’t want to do what my mind wanted them to do. I am constantly reaching out to grasp things like as door handles and such, only to miss grasping the desired object and having to try and try again until my arm has finally made contact with what I am reaching for. I experience pain and discomfort while driving and difficulties getting out of the car. I can’t style my hair into a simple pony tail in front of the mirror, instead I have to lay down on the couch, with my head hanging over the arm rest, or if out and about, I have to bend down and rest my forehead on the bonnet of the car and throw my unwilling arms behind my head and the difficulties shopping, and dealing with trolleys that refuse to operate properly became more frequent.
I had begun drooling at the mouth, my facial muscles began to droop more than they ever had and my speech had become somewhat slurred as the facial muscles further weakened. I had to bend down towards the floor just to get a shirt off my body, as I cannot lift it and my arms up to take it off over my head. I struggled to open things or get those little round covers that are on some of the milk bottles under the lid. My arms began slip from the steering wheel as I would be driving, or I would miss grasping the wheel after changing the gears. I go to bed often in pain, and I would wake up to pain within two or three hours. I was in constant pain from neck to toe despite medication, and while I got some relief from the massage chair, this was only temporary.
Of all the hurdles I have encountered over my life, the diagnosis of Facioscapulohumeral muscular dystrophy has been the only thing that I have not questioned and cried to God “Why me!” I just need to discover a way, with God’s guidance, and turn this disability into an ability in which best serves Him.