This is Me---(non-fiction)

Everybody’s life is unique in their own mind; mine is no less so, but perhaps after all, it is a little different to yours. I have considered lately that it may be different enough to write about.

Once I was a twenty something, thirty something, forty something, and fifty something housewife, doing all the ordinary household chores and going to work. I knew that this time could not last and was always aware of the encroaching disability that would one day be the dictator in charge of my routine.

I was forewarned because in nineteen seventy-five, after a second episode of optic neuritis, which left me with almost total blindness of the left eye, I was diagnosed with MS.

Yet I consider myself lucky – lucky that I have had a full career, and lucky that I have been able to have my family and along with my husband, have been able to raise two children to adulthood. We both consider ourselves lucky that we have five grandchildren to enjoy. I am lucky that the disease I have is not a more severe form – that it does not cause me a great deal of pain. I am lucky that I live in a Western country, where services are available, and modern conveniences make life a little easier.

My typical day begins at 7 AM when the news on the radio wakes us both up. At 7:10 the news is over and Pete rises to begin his day. He puts on a load of washing, cleans my false teeth, attends to his own ablutions, and about seven thirty brings the wheeled shower chair out beside the bed to help me out. My legs are dead to all intents and purposes, and he swings them over the side before lifting me to stand. I can take the weight on my legs now for about six seconds only, enough time for him to pivot me on to the chair. By this time the helper from the care service will usually have arrived and she will shower me. If for some reason she can’t come, he will shower me.

Two years ago we had our bathroom altered, so it is set up especially for me, and everything is easily accessible. Pete assists the carer with dressing me on the bed which is achieved only by rolling me backwards and forwards, and lots of yanking and grunting. I’ve told them all that there is a grunt box and when anyone grunts they are required to put a fine in the grunt box! How dare they grunt when pulling my pants up!

Hebe is my small electric wheelchair which I use in the house, and fully dressed, Pete lifts me again and sits me in the wheelchair. At last I can move under my own steam, and after getting my hair brushed by the carer, I’m off to the kitchen. If it’s sunny, I’m down the back ramp and outside to do my arm exercises on the rope and pulley that Pete rigged up on the patio. I squeeze in some deep breathing before tackling breakfast.

Occasionally we sit outside on the patio for breakfast, but lately the mosquitoes and midges have bred up in the damp conditions and make outside dining unpleasant. For that reason I’ve wimped out of late and eat inside in our breakfast nook where I have an electric lift chair. Pete lifts me yet again into the chair where I can put my feet up and attempt Words with Friends on the iPad. The trouble is I can never get them finished before Pete arrives with breakfast. Isn’t life tough!?

He’s made poached eggs on toast for us and I drink ginger tea. He makes that by dropping a few thin slices of green ginger into my sipper cup and pouring over boiling water. I use the same cups that the baby’s use when they first start on a trainer cup. I mostly manage to feed myself but a meal without paper towels on my lap and chest is not wise. Just outside the window hang the birdfeeders where I can watch the beautiful lorikeets, rosellas, and crested pigeons, feeding on sunflower seeds that Pete puts in there.

The rest of my day is taken up writing and reviewing for Fan Story and answering emails. Writing has given me the inspiration to think.

One day a week I attend a respite centre to give Pete a break from the intense physical challenge of caring for me. Our bus collects me at 8:30 AM and returns me to my door by 3 PM. (Or thereabouts.) I mostly play five hundred there, or other card games. Sometimes I play bingo, scrabble, or shuffleboard. But always with assistance. I have a close friend there who also has MS and is also in a wheelchair. At lunchtime we sit together at the far end of the dining room where we can be fed relatively unobtrusively.

I’m also lucky that I have one forefinger that still works, because it helps tremendously when dictating with the microphone. It saves time to make a small correction manually if I can rather than argue with the program. Of course it has a sense of humour and often puts in the wrong word deliberately. No, honest.

On Wednesdays we spoil ourselves with a day out, possibly at a shopping centre where we buy lunch. Once in a while we might go to a movie at a large complex. For these outings, Hebe folds up small enough to be put into the back of the car. I have another wheelchair with larger wheels especially for going outside on the grass. It allows me to get closer to the garden and sometimes we go for a walk around the block, or take the grandchildren to the park. We mind two of them after school two days a week. They love the park equipment, especially the ‘velocitron.’

The biggest blessing of all that I have is my devoted husband, who would lay down his life for me, and gets very frustrated if he thinks people haven’t done the right thing by me. That man is a worry!  I love him so. 

Everybody’s life is unique in their own mind; mine is no less so, but perhaps after all, it is a little different to yours. I have considered lately that it may be different enough to write about.

Once I was a twenty something, thirty something, forty something, and fifty something housewife, doing all the ordinary household chores and going to work. I knew that this time could not last and was always aware of the encroaching disability that would one day be the dictator in charge of my routine.

I was forewarned because in nineteen seventy-five, after a second episode of optic neuritis, which left me with almost total blindness of the left eye, I was diagnosed with MS.

Yet I consider myself lucky – lucky that I have had a full career, and lucky that I have been able to have my family and along with my husband, have been able to raise two children to adulthood. We both consider ourselves lucky that we have five grandchildren to enjoy. I am lucky that the disease I have is not a more severe form – that it does not cause me a great deal of pain. I am lucky that I live in a Western country, where services are available, and modern conveniences make life a little easier.

My typical day begins at 7 AM when the news on the radio wakes us both up. At 7:10 the news is over and Pete rises to begin his day. He puts on a load of washing, cleans my false teeth, attends to his own ablutions, and about seven thirty brings the wheeled shower chair out beside the bed to help me out. My legs are dead to all intents and purposes, and he swings them over the side before lifting me to stand. I can take the weight on my legs now for about six seconds only, enough time for him to pivot me on to the chair. By this time the helper from the care service will usually have arrived and she will shower me. If for some reason she can’t come, he will shower me.

Two years ago we had our bathroom altered, so it is set up especially for me, and everything is easily accessible. Pete assists the carer with dressing me on the bed which is achieved only by rolling me backwards and forwards, and lots of yanking and grunting. I’ve told them all that there is a grunt box and when anyone grunts they are required to put a fine in the grunt box! How dare they grunt when pulling my pants up!

Hebe is my small electric wheelchair which I use in the house, and fully dressed, Pete lifts me again and sits me in the wheelchair. At last I can move under my own steam, and after getting my hair brushed by the carer, I’m off to the kitchen. If it’s sunny, I’m down the back ramp and outside to do my arm exercises on the rope and pulley that Pete rigged up on the patio. I squeeze in some deep breathing before tackling breakfast.

Occasionally we sit outside on the patio for breakfast, but lately the mosquitoes and midges have bred up in the damp conditions and make outside dining unpleasant. For that reason I’ve wimped out of late and eat inside in our breakfast nook where I have an electric lift chair. Pete lifts me yet again into the chair where I can put my feet up and attempt Words with Friends on the iPad. The trouble is I can never get them finished before Pete arrives with breakfast. Isn’t life tough!?

He’s made poached eggs on toast for us and I drink ginger tea. He makes that by dropping a few thin slices of green ginger into my sipper cup and pouring over boiling water. I use the same cups that the baby’s use when they first start on a trainer cup. I mostly manage to feed myself but a meal without paper towels on my lap and chest is not wise. Just outside the window hang the birdfeeders where I can watch the beautiful lorikeets, rosellas, and crested pigeons, feeding on sunflower seeds that Pete puts in there.

The rest of my day is taken up writing and reviewing for Fan Story and answering emails. Writing has given me the inspiration to think.

One day a week I attend a respite centre to give Pete a break from the intense physical challenge of caring for me. Our bus collects me at 8:30 AM and returns me to my door by 3 PM. (Or thereabouts.) I mostly play five hundred there, or other card games. Sometimes I play bingo, scrabble, or shuffleboard. But always with assistance. I have a close friend there who also has MS and is also in a wheelchair. At lunchtime we sit together at the far end of the dining room where we can be fed relatively unobtrusively.

I’m also lucky that I have one forefinger that still works, because it helps tremendously when dictating with the microphone. It saves time to make a small correction manually if I can rather than argue with the program. Of course it has a sense of humour and often puts in the wrong word deliberately. No, honest.

On Wednesdays we spoil ourselves with a day out, possibly at a shopping centre where we buy lunch. Once in a while we might go to a movie at a large complex. For these outings, Hebe folds up small enough to be put into the back of the car. I have another wheelchair with larger wheels especially for going outside on the grass. It allows me to get closer to the garden and sometimes we go for a walk around the block, or take the grandchildren to the park. We mind two of them after school two days a week. They love the park equipment, especially the ‘velocitron.’

The biggest blessing of all that I have is my devoted husband, who would lay down his life for me, and gets very frustrated if he thinks people haven’t done the right thing by me. That man is a worry!  I love him so.