Load Shedding

After a couple of weeks of constant electricity supply, hope made us put away our gas camping cookers, candles and torches.  We were lulled into a sense of lightness.  But it was not to be.  My phone app told me on Sunday that we would be starting Stage 1 load shedding again.  It is the one function where the government is punctual to the minute, and at 12 that afternoon the power went off.

For those of you who are scratching your head, wondering about what on earth I am talking about, South Africa has introduced a time share scheme for electricity on days when the grid is under strain.  (due to lack of maintenance and bad management, but that is a topic for a different forum.)  We take it in turns to have electricity available.  Stage 1 is the least destructive – our area was off for just over two hours.  Things get progressively worse the higher the number.  To use a phrase that is quintessentially South African, stage 6 is “nag” *

We all understand that load shedding is the lesser of two evils.  If the grid were to collapse, life would be very dire indeed, so we need to share the load, to make things manageable.

When resources are thin, sharing the load is indeed a good idea.  Whether that concerns work, parenting, house maintenance or any other task really, if the tasks are shared, the benefit is not only that more than one person helps, but more importantly (for me) , the idea of responsibility is not left up to one person.  We need partners in tough times, to understand, care and lend their energy. 

Dealing with any chronic illness is stressful, particularly if that illness has no chance of recovery.  Type 1 diabetes is one of these.  The best that can be hoped for is good glucose control, so that the other complications/illnesses don’t kick in.The grid is constantly under strain, so to speak.  This is where load shedding comes in.  We, as a family, need to work as a team so that the day to day,( and night to night, ) diabetes management does not put one of us, especially TD, straining to melt down point. 

My personal load shedding techniques include writing, talking and allowing myself to spend time in nurturing spaces. These help restore sapped energy.  That is my way of re fueling myself when times are tough..  So to those of you who offer support to us as a family and me in particular - thank you for giving strength and stability to our grid. 

 

Load shedding is a lot easier if it is predictable.  We have print outs of when our electricity supply will be cut depending of what stage we are on.  We have apps.  But every so often unexpected breakages occur at South Africa's power stations, and our best laid plans are disrupted.  It is very frustrating.  In the middle of a carefully planned schedule of when to do what, we are once again plunged into darkness, losing whatever we haven't backed up on the computer, the clothes washing half washed, and garage doors that won't open. 

 

Optimally, maintenance and repair should be on going, so that nothing breaks down.  Money should be spent on creating new power sources, preferably renewable, but life of a T1 doesn't always work that way.  Sometimes it seems there isn't time for some maintenance down time, and we rush from crisis to crisis.  This needs to change.  If we spend more time planning for long term health and happiness, things will be calmer. 

We had an unexpected interruption last week.  TD was diagnosed with glandular fever.  As her immune system is compromised. (T1 is an auto immune disease.)  she catches a lot of illnesses that float around.  That’s what makes the current COVID 19 virus threat even more scary.  The virus is worse, I believe, for those people with existing medical conditions, so you can understand that our alarm bells clang a little louder than they would if TD were completely healthy.

Personal load shedding can be a good thing  if you have the right support structures. We can take it in turns to be switched on or powered off. 

I am off to get the camping gas stove out of the garage again.  It's time for tea.

* "nag" is an Afrikaans word, that literally means night, and colloquially means Very Bad

Feedback, as promised. And Mothers' Day stuff

It is early days - 17 to be precise - so this feedback about how well the Tresiba is working, will be short.  We all love the longer dosage period.  There have been some (but by no means all) wonderfully even night glucose numbers.  TD is still running high.  Overall, I am hopeful, although I should probably lower my expectations.  Tresiba is not a magic wand, and all the usual suspects - logic, vigilance, calmness - need to come to the party. I will report back when there is more data....

....but in the meantime, I have been sunk into the thought bubble of mothering. (Again.)  This time is has been prompted by Mothers' Day which we celebrated on Sunday.  It was the first time in many years that I didn't cook a thank you lunch for my own mother.  Being motherless loomed large.

My own family treated me with wondrous indulgence and kindness.  Most soul feeding was the card with words I treasure from my two children.  TD organised the whole thing, as her brother is (still) overseas.  I read it and glowed from the inside.

For lunch, Andrew had decided on a trip down memory lane.  In our youth, we enjoyed getting take outs from a Greek restaurant in Sea Point and would eat watching the sea and avoiding the loudly demanding seagulls. The restaurant, Ari Souvlaki, is still in the same place.  There are such nice people in this world.  The owner showed his freshly baked trays of puddings, and asked me which I would like for a mothers' day treat. They both looked delicious.  I chose the milk tart pastry but he scooped one of each type into a container and handed them to me with the kindest smile.  Such generosity almost overwhelmed me.

Because that is really what mothering is all about I think: Generosity and the giving of oneself.  Mothering is not confined to biology, and there are many people who have mothered me in some form or other.  Many who have played (even if they don't know it) pivotal, key, life nurturing roles that I have relied on when I have needed extra courage. I appreciate you, even if it seems I sometimes take you for granted.

Mothers, I think, should be taken for granted.  Children should just be able to assume that  Mother is their backdrop and safety net.  It doesn't need thanks or acknowledgement or come with expectations.  My children owe me nothing - and I owe them the best I can offer.  That is how parenting works.  And that is why when my children do write lovely things to me in a Mother's Day card, I bubble inside and feel that all is right with the universe.

Reflections in Glass

Sometimes I get itchy fingers (like itchy feet but with less expensive consequences!)  I need to make or create or do something tactile.  Sometimes it is because life can get a bit routine – work, cooking, cleaning, driving, mowing the lawn –all good in their own way, can seem a bit mundane at times.

We have a Wendy House in the garden – home to cutters, rakes, brooms, garden chairs – that sort of thing.  It is as old as our title deed and rather weathered.  Quaintly, a stubborn rose plant is growing up a side, through the house and poking some branches out the front. (No rose flowers in all the twenty years, but such determination I can’t cut away.  Besides it looks rustic.)  Parts of the shed are actually rotten – the wood needs replacing. And don’t look too carefully if you don’t want to see the little beetle holes.  It is a ramshackle shed.

A few years ago we screwed the windows shut after I found someone in the garden trying to get into the Wendy House.  What he wanted I will never know, because we both startled each other and he ran off.  So the windows no longer open, and the door is symbolically rotten.

What better place to put a stained glass window.

I love cutting glass and playing with the way light falls, reflects and gets absorbed by colours. So, that is my latest project and it gives me a lot of satisfaction.

And of course, time to think.  Sometimes those of us who feel that we are more than the sum of the functions we do, need a little sparkle added to our lives.  I am very conscious of the many comparisons that I can make between my Wendy House and my Wendy Self, what with some rotten bits, quaintly ramshackle and don’t even get me started on the whole intruder- in- the- garden- and- window scenario!  So spending some time on adding a completely unnecessary but creatively fun window into the Wendy Shed/Soul turned out to be not so unnecessary after all.  I needed to add a personal touch to a neglected space.

Parenting is hard work.  We all have challenges to face . Sometimes the challenges are  immediate or more intense than at other times.  Sometimes it is the long term just coping with everything that is thrown at us that seeps away the energy.  I love being a parent.  I love the creativity, problem solving, all consuming attention it requires.  I even love the difficult bits, the sleepness nights, the routine of it.  Because all of it, like the pieces of glass in a stained glass window, create a whole picture from fractured bits and pieces.  I added a few mirror pieces in the window too, just to remind myself to put some self reflection in the mix. 

The window has turned my ramshackle shed into an Eclectic Garden Storage Unit.  Nah not really. It is just my Wendy House.

Mindfulness

TD's mid year exams are over!  As with any stressful period, the adrenalin was free flowing and the glucose numbers soared.  And if the exams were stressful, getting the results back  seemed to cause even greater anxiety.  I am inclined to take the long view about examinations - results are only useful in a context.  And that context is both the collective average of all participants and individual circumstances of each person.  TD was delighted with some results, and disappointed with others.  So, a good mix - some encouragement and some challenges. Considering that the symptoms of hyperglycemia are tiredness, poor concentration and blurred vision, and considering TD spent the entire exam period with elevated glucose levels, I think she did fine.  All the studying in the world is rendered less effective if you cannot concentrate. She worked hard, and I am proud of her.

There are a couple of weeks left before the end of term.  Classes have resumed as usual, with a few extras thrown in.  Today the grade 9s were spoken to by a survivor of the Holocaust and tomorrow the class will take the train into town to see the Holocaust museum.  It is a subject that has absorbed TD's attention and interest; so much so, that she forgot to inject her insulin for lunch.  She remembered to test, but - and she does not do this very often - she simply ate without injecting.  I am not sure if it was because her mind was waging war against the horrors of prejudice, or if she is so used to having diabetes that she just went with the flow of eating forgetting the crucial insulin, or if she has too much on the go.  It doesn't really matter - she just forgot.  Her number shot up so high that she had to sit out of sport after school.  And she is still running high.

Mindfulness - being present in the moment- is a necessary skill for anyone with diabetes.  There is a lot of self care that needs to happen.  TD needs to always be aware of what her body is telling her .  When she is low she has what she calls her "stomach feeling."  When she is low, she shakes.  Going high is more difficult for her to be mindful of, and so she has to practice the art of remembering.  She has to be extra mindful of what she eats and the effects of sport and extreme emotions.  Our pancreases do the job of balancing our sugars and insulin.  TD's pancreas no longer does that for her, and so she  needs her  thoughts and memory to compensate.  She is an excellent student of the Self.

Mindfulness is a necessary skill for all of us, and I think it is a life long project.  It is so easy to slip into yesterday's regrets or tomorrow's worries that often we miss the satisfaction of the present. (I love that the word is made up of two Latin words - "Satis" meaning "Enough" and "facere" meaning "to make.") And Enough is all anyone needs.

We are looking forward to the mid year school holidays - we anticipate huge adventures, a lot of laughter and many memory-making moments.  But more about that later....

In the meantime, I wish you all a Satisfactory Now!

Mindfulness on our favourite beach

Slender threads

Until last Thursday, TD had long, long hair.  She cut it short after much anticipation (and some angst) and gave the pony tail to CANSA - the Cancer Association of South Africa.  They make wigs for people who lose their hair during chemo treatment.  She has wanted to do this for a couple of years now as a thoughtful, personal response to people living through cancer.  Most people  have been touched by cancer in some way - through a family member, friend or colleague.  Awareness about cancer and its treatment is growing, in part because the media have demythologised it, but mostly because people are less afraid to talk about it and more open hear what treatment is available.

Other equally potentially deadly diseases do not receive such attention.  Why do some illnesses still have stigmas attached to them, sometimes even blame.  Why are people quick to judge others who are ill, why do we even have a label called "Lifestyle diseases"?  Much publicity around diabetes  seems to have an admonishment with it.  A radio advert running on our airwaves at the moment says something like: "Do you have a glass of orange juice for breakfast, and energy drink on the way to the office, cola with your lunch?  Do you know you are setting yourself up for diabetes type 2?"  The advert is from the government justifying the proposed sugar tax.   People look at TD and assume unhealthy eating habits caused her pancreas to stop functioning.

Another illness that people don't want to talk about is depression.  Despite alarming statistics - about 7 out of 100 people suffer from depression at some time in their lives - it is whispered about with eyes averted as if it is something to be ashamed about.  I was thinking about this because depression, like cancer and diabetes, can be life threatening if not treated.  A week ago, a class mate of TD took her own life.  She was only 14.

We need to talk.  We need to destigmatise ALL illness.  We need to be more compassionate, less judgemental. We need to be kinder  - to others and ourselves.

Life can be a slender thread.  We can be hanging on,  hoping the thread holds, hoping others see that it is fraying.  Let's use our slender threads collectively to create a interwoven rope of support.

I hope whoever gets the wig made from TD's hair magically absorbs the love and support which comes with it. Every time I look at TD, I see strength and compassion and great beauty in her short hair.  And I want to hold her tightly and keep her safe.

The High Life and low life

I wish I had a better understanding of the Highs and lows, the whys and wherefores of a teenager withT1 diabetes. Hypoglycemia (too little glucose) and hyperglycemia (too much glucose) are everyday buddies of my Teenage Daughter (TD for short). Some patterns I can see, but others seem so random! One test she is floating in the glucose teens and the next she has sunk to the scary threes.  I get frustrated with my own lack of ability to predict what's next, my own inadequacy in helping and bewilderment at the power of the body.  I have always been a believer in the mind/body synergy - the importance of linking heart with health (in a practical way) and now, seeing glucose swing with fear, sadness, happiness, anger, there is concrete confirmation of this.The adrenal system is activated with extreme emotion and this obviously has physical effects. Now I can just see it in numbers on a monitor.  In a detached way, it is all very interesting, but in an honest moment here - it makes me raw with fear and sadness.  Unlike TD, my pancreas deals with all these emotions and my body copes to a degree.

I am lucky - TD is usually quite open emotionally.  She will say, " I am sad today, and I don't know why." or "I am feeling strange right now."  Like most every other mother in the world, I want to take it away and make it all better.  And I know I can't.  So I enfold her in my arms, and hold her and let her know I am there.  It seems horribly inadequate, but it is the best I can do.

If you are anything like me, you will be reading this with a mug of hot tea in hand.  But welcome to the coffee drinkers too.  Tea has accompanied me through many of life's occasions - the hiccoughs, the hellos (and goodbyes) and the hell-weeks.  An aside: I once confessed to a doctor that I drank 6 cups of tea a day, and he told me to give up or reduce immediately.  This was a turning point for me - I realized I had to find a new doctor....  What I have done in the interests of health, however, is to cut down on sugar.  From 3 spoons a cup (gasp, I know, but I was a skinny youth with no insight into tooth decay and sugar highs and lows...) to now having none. At a tearful airport goodbye, my sister-in-law,J, challenged us both to cut out sugar, and we clinked airport mugs and agreed to do this together. But, as we live on different continents, I sneaked a spoonful in every now and then.  I did let her know.  I am, generally, the honest sort. (OK - I do sometimes have more than 6 cups a day.)

But I gave it up completely two and a half years ago, when my daughter, then aged 11, was diagnosed with Type 1 Diabetes (T1).  So that is what this blog is really about: being a mom to a beautiful, talented, sensitive teenager who lives with needles and glucose test and a backdrop of angst about hypos and hypers*

Having sugar in tea has nothing to do with diabetes type 1.  Nor does eating sweets, drinking fizzy drinks, a sweet dessert tooth or any other life style factor.  It is an auto-immune disease; the body attacks it's own pancreas and insulin production is halted.  This means that the body is unable to unlock the cell walls to allow glucose (energy) to reach the cells.  So there is a build up of sugar in the blood stream, and a lack of energy in the cells.

There is an important distinction between type 1 and type 2 diabetes, and not too many people get that, unless you have stumbled across these diseases in a personal way.  Type 1 people are insulin dependent, the onset is sudden and life threatening.  Type 2 has a slower progression and can usually be controlled with diet, healthy lifestyle and if necessary, some insulin.

But you probably know that.  In fact I am hoping to find people who know all sorts of things about diabetes and mothering and compassion and well....anyone really, who has time to join me on this journey.  So - if you have Time for T, let me know and we can chat.


*more on hypers and hypos another time...