Thursday, 18 August 2011
Caroline's Early childhood.
I was walking at 10 months old and then one day my knees were hot and swollen and as a usually happy baby I just couldn't be comforted. I had fevers and rashes and stopped walking. My parents obviously knew something was up but back in the late 70s, little was really known about Juvenile arthritis or it certainly wasn't a natural diagnoses for a doctor to make so they spent a very scary year in and out of hospital with me whilst they did tests.
Many blood tests later, seemingly in and out of conciousness through high fevers, my parents remember standing in the Bath RUH in a daze, they remember standing outside Bath Abbey with me, so scared that they just weren't aware of anyone or anything. No one knew what was up. They were relieved when I got the diagnoses of Juvenile Chronic Arthritis months later because they knew you could not die from it, they felt at least it wasn't any terminal illness.
My parents read and read and read, they never just listened to the doctor. They read every book they could lay their hands on on Juvenile arthritis! They researched the centres of excellence for JCA, they researched the medication given. I was kitted with splints from head to toe by the doctors, leg splints, hand splints, neck splints etc. I was promptly put on steroids to try and reduce the illness activity, given anti inflammatory that I used to constantly spit out so they had to hide it in jam! My parents had an argument with a doctor as they reduced my steroids without consultation because they had read about the stinting growth and other nasty side effects. The doctor felt they shouldn't have reduced the medication by 1 mg when I started to look well, my parents looked at him and said "what if it was your daughter?". He sat back down and they never argued again! I did my best to make my point as a child, the constant blood tests were upsetting and I only knew smelly as a rude word so I would be crying and screaming "smelly doctors, go away" at every consultation.I knew they needed to test the activity of my illness through taking blood. My parents bribed me to be calm with a Mr Men book at the end of each consultation, I now have every Mr Man book from the 70s and early 80s ever written by Rodger Hargreeves!
So amongst splint making, splint wearing, doctor visits, physiotherapy to keep my joints moving, Occupational therapy visits etc I lived a normal life.I have three siblings, two younger brothers and one older sister who have always been good friends to me. I learnt to read before I went to school, I loved school because I had well friends and I was not being seen as an ill child. I was a popular child and always went to birthday parties and my parents gave great parties back. I think friendship for me was important to my parents as it was normal,they would drive me to all my friends homes as I couldn't even walk two doors down, they would take me to brownies, any party I had on, if I wasn't well they would up some medication or another so I could go.
I spent months in hospital but I always got homework sent to me and sometimes my parents brought in a private tutor to come to my bed side so I wouldn't fall behind. I never felt different in the early years, not one bit, young children are so accepting.
We were living in the Scottish borders when I reached 5 years old so I could go to one of the Centres of Excellence at Newcastle. Here I was to meet a Dr Barbara Ansell, a big powerful lady who sent parents, nurses and doctors into crying wrecks during her ward rounds. Sitting, as an arthritic child, was forbidden by her, we were ordered to walk or cycle if we stayed on her ward (there were bikes to get to different departments in the hospital). There was never a wheelchair allowed as a form of transport. Moving was so important because if an arthritic stops moving they sadly loose the movement in relevant joints which results in becoming wheelchair bound. Something I still practice today, no matter how ill I am I keep moving and certainly being a mummy there is really little choice to be anything else.My parents made sure I had lego to play with or a keyboard to keep my hands moving and they found me a three wheeled bike to ride around with my brothers and sister. I have a lot to thank Dr Ansell for really, she has given me a positive, determined attitude towards my life. So I am ill and so most of my joints are plastic but that never stopped me living a great life then and it won't stop me now!
I will discuss teenage years and early adulthood in future blogs. I would say that treatment for such illnesses have come on leaps and bounds since the early 80s. I believe that, although arthritis is still painful, the medication and surgery available is so advanced that pain can be controlled and without the nasty side effects. Despite the fact that my generation of Juvenile arthritics had older treatment I don't actually know of any one of them who were not successful in life, they are lawyers, Bio chemists, my best friend is a multi lingual translator for the UN in New York and I am a lowly Psychologist. We may be creaky, petite and mostly made of plastic but we all seem to be happy and doing well intellectually and I love being a wife and mother. I think that when you grow up with an illness as a child you adapt to it very well, you forget you are ill. Medication becomes nothing different, taking medication is no more of a thought than brushing teeth in the morning, you do it quickly and then get on with creating your Lego town, playing your keyboard, annoying your pets or siblings and being a normal child!