Profiles

“A Life measured by smiles”, by Margot Sparkes

I lived in a small country town over 30 years ago. Out of the blue, I had a serious attack of mumps with meningitis. This hospitalised me for two weeks.

Recovery was slow and I visited my GP. The conversation went something like this:

“I feel tired”

GP – all young mothers are tired

“I’m so thirsty”

GP – drinking water is good for you

“I’ve lost seven kilos”

GP – It suits you, be happy

“I’m very depressed”

GP – some Valium will fix that

And so it went on……

I smiled politely.

The big collapse came a short time after this consultation and I was shipped off to the city. I was diagnosed with diabetes and told I’d be insulin dependant for the rest of my life. I wondered if things would ever be the same again.

I had to settle into a different way of living. There were ups and downs, hypos and ketones. We moved onto the land and life was busy.

I kept smiling.

I became used to a rhythm of insulin shots, blood sugar levels, urine tests, strict diet, exercise and no more babies. My mother suggested I should keep my condition a secret as diabetes was akin to dementia and she was ashamed for me, even feeling a degree of responsibility. She spoke to medical people who hinted that I wouldn’t live past my 40^th birthday.

I managed a strained smile.

But then the pain began. It was Nocturnal Peripheral Neuropathy – an abnormal nerve condition that was severe and only hit when I stopped or went to bed. Other sufferers know what I mean. No known medications helped me, except for the narcotics family and some antiplines. I would never have another good night’s sleep during my life. My doctors were puzzled and several times saw first hand the distress and pain.

I smiled through gritted teeth.

The breakdown of my body was gradual. I battled Chariots Disease in one foot and then the other. I spent months in plaster b-valve casts, on crutches and in a wheelchair. My bones crumbled and things let go. At one x-ray some bones had actually disappeared! But the therapy saved my ankles and feet from major deformation and for this I am very grateful. To cope at the time, I decorated my casts with diamonte jewellery and bright tartan bows!!

Other people smiled but I smiled a lot less.

My eyes went next. Haemorrhaging, laser therapy, more lasering, more haemorrhaging, more lasering. Several sessions of surgery, loss of drivers licence and white cane training weakened my spirit. All this time I managed two businesses, sustained a relationship, reared a family and travelled extensively.

I smiled most of the time.

My husband started feeling the strain, saying diabetes had ruined our lives. I regularly fell victim to hypos – when the body shuts down due to unstable sugar levels, causing someone like me to fit and convulse. This caused me a loss of self-esteem and had confidence destroying consequences. People gossiped. I spent a lot of time crying and had a permanent headache worse than any nightmare. I felt utterly without hope. These were horrid experiences and my situation became desperate. The medical people had no answers. I was often hospitalised and felt very isolated.

I smiled, but not with my eyes.

It wasn’t long before the ulcers began to form under my feet and had to be dressed daily. Unfortunately they leaked (“splatting” everytime I walked) and the padding inside became wet. Then I moved onto plaster casts. We lived in a hot climate and it brought more infections and a bout of osteomyelitis. Sometimes when the casts were being removed, patches of dead flesh came away in the doctor’s hands with the dressing. My surgeon recommended amputation of my feet. I politely declined his offer. He told me in no uncertain terms that is I was a public patient I would have no choice as I couldn’t expect the government to pay for the treatment and hospitalisation I required. Thank you MBF!

However, it was time I reached a new low. I felt I was a burden to family. I imagined diabetes had made me selfish. I was dragged down by my own guilt.

My smile was strained and false.

I contemplated taking my own life. I didn’t leave my comfort zone. My family encouraged me but my friends didn’t know how to cope with my illness. I remember when my youngest daughter was married, I stepped from my wheelchair for the first time in months and walked down the aisle of the church on the arm of my father-in-law. The congregation cried. I was overcome.

Soon I developed lymphedema.

There were more tears than smiles now.

The ulcers gradually became worse over the next six years. Gastroparesis developed and also gastric ulcers. In an effort to make my life easier, we sold our beloved family home that we were running as a B&B. My daughters felt less security now with no home to come back to – I felt more guilt as if it was my fault. Something kept me going.

There were buckets of tears.

They say that when things hit rock bottom, there is no other place to go but back up again, and for me things could not go any lower.

It was March 2002 when I met a doctor who made me think that my life could be worth living again. I remember the day I met him, the first person who suggested my feet may not be a total lost cause. In 2002 he performed orthopaedic surgery on both my feet. He corrected deformed bone that had caused both my ulcers. My life began to change.

It was a long slow road and just when I felt I was making progress, some more would crack and I had to start again. For six intense weeks I went through lymphedema treatment. The ulcers slowly began to mend and with the help of special shoes, I began to learn to walk without support.

My orthopod shared my joy. My podiatrist cracked a grin. Even though I picked up Golden Staph in hospital and again was forced onto antibiotics, nothing was going to hold me back now and I began to slowly find some relief.

I was really starting to smile again.

My life has become one of adaptation. Learning to change the way I do things so I can keep doing the things I choose.

With the loss of my sight I have learned to paint in bright, strong colours so I can see the picture more clearly. The Royal Blind Society (now Vision Australia) has the most ingenious ideas and services for people just like me. I have talking books delivered free of charge. My literary advisor ensures I receive the newest releases. I aim to walk 10,000 steps a day for fitness.

My husband, (the love of my life) has suffered the ups and downs, smiles and disappointments over a generation of time. We are now travelling around Australia in our caravan and every day is special. We travel to exotic places and spend winter in Palm Cove, Queensland. We are discovering the dreamtime in Central Australia. I speak to my daughters every day.

They keep me smiling.

My family recently threw a wonderful party for my 60^th birthday. People who care about me travelled from all over Australia to join in the celebrations. I felt very blessed and we laughed a lot.

The medical team I have is just brilliant, I have Lantus in my insulin mix. The hypos happen less and I have reduced my BSL. We have come a long way together.

I am happy to say that today again I am smiling and plan to do so for a very long time.

In 2008 I was thrown a lifeline. Sharon Scott spoke at a meeting I attended. She explained the future and use of assistance dogs, through Paws for Diabetics (PFD). I was very, very interested. After nearly 40 years of insulin, my hypo awareness has diminished. This situation was controlling my life in many ways. I was afraid to be left alone, go into town or leave my house. Some nights I was too afraid to go to sleep. My BSL could drop 10 points in a couple of hours!

“Lou Lou” arrived on March 1^st, 2008 from a poodle breeder in Queensland. She was an adorable ball of black fluff with very intelligent black eyes. Within a week she had bonded to me – she thought the rest of my family and friends were OK, but when the chips are down, she always comes to me. I had a major hypo one night, only a couple of weeks after she arrived, when my husband was out. Tiny Lou Lou was beside herself, licking and pawing at my face, sniffing the carpet where I lay, and as soon as my husband got home he knew I was in trouble from the way Lou Lou behaved. I was covered in scratches and Lou Lou stayed unhappy for some time. That was the start of her alerting.

By May 1^st, 2008 Lou Lou has alerted me to daytime hypos. She watches me closely and as soon as I sit down in my favourite chair for a nap, she goes on guard. As soon as I close my eyes (as I would in a hypo) she barks, scratches, licks my face and hands – anything until I reassure her I’m awake and OK.

She is going to change my life when she’s trained and accredited, already I feel more confidant and learning to trust her.

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