February 2021

It just happened to be Valentine Day two weeks ago when we decided we needed a day out.  Valentines day has always struck me as a celebration of the power of commercialism and going along with the flow mindlessly, rather than any romantic notions.   So, it wasn't a Valentine's picnic - it was just a much needed Smell-The Country- Air expedition.  I made egg mayo sandwiches and slapped some cheese and jam onto rolls, packed some flasks of hot water for the tea and coffee, made a few cupcakes and we were good to go. We picked up TD's significant other, and headed out to Betty's Bay.

We knew where we were headed - there is an botanical garden  with a very pleasantly priced indigenous plant shop, We have a few gaps in the garden and were scouting for hardy plants that can withstand our trial by error gardening method. It was a beautiful day - raining and windless - perfect for a hike up to a waterfall in the kloof.

The rain didn't last, and the walk was a meander up a river bed with shady trees and extrovert frogs.  It was a good day.

By contrast today is searingly hot - 37 degrees at 2pm, and my energy has evaporated. I can think of so many projects I could or should be doing, but it all seems too much effort.  TD has been back at school everyday since mid February, and we are settling back into routines and schedules. This has been good for her.  Glucose numbers react favourably to timetables and patterns, and TD has managed to get better control of the stubborn highs.

It is TDs final year of school.  Hard work, new challenges and leadership roles will accompany her on this year's journey.  Her official childhood is almost over, as she is about to leap off the cliff into the puddle of responsibility called adulthood.  But she will always be that magical person who talks to extrovert frogs on hikes to waterfalls.

 

 

Ketones and covid

Ketones.  The word has a  lyrical sound.....It makes me think of a music flowing pleasantly from appealing chords to melody, or of soft palettes of colour for creative expression. Ketones are not benevolent or pleasant though.  At least not for people with type 1 diabetes. (There are some  pancreatic-enabled people who choose a ketogenic diet of low or no carbs and high fat.as a weight control method) 

Essentially ketones are toxic acids.   Glucose is our usual source of energy, but if that glucose can't be used in the blood (that's the role of insulin), the body looks for an alternative source of fuel - fat. The liver processes fat into ketones and sends them into the bloodstream. People without diabetes can handle this acid in the blood, but for people with Type 1, the acidic build up  together with high glucose that can't be processed, is a life threatening situation.  It leads to DKA - diabetic ketoacidosis.  DKA can  cause damage to the lungs, brain and kidneys. It is to be avoided at all costs - it can be deadly and requires hospitalization.  

TD's glucose levels have been on the high side for the last while.  At the end of the year we met with the endocrinologist who thought TD was doing a good job of handling the stress of a pandemic, exams and diabetes.  2021 has not been the new start so many were hoping for, it seems to be a continuation of the 2020 mess with the promise of some light at the end of the tunnel.   TD's glucose numbers started to rise ....and rise... until last Saturday she was feeling lethargic, tired and couldn't bring down the glucose from 20s.  We needed to test for ketones. 

TD's glucose meter has the facility to test for ketones using a different test strip.  These strips are fairly expensive, and not covered by medical aid, so we don't keep too many in the house.  As luck would have it, the few we did have had expired, so TD (exhausted and dejected) and I  (anxious and flustered) went in search of more.  (I could not leave her at home in case she deteriorated and needed help).  The first pharmacy offered to order some in, and I could fetch them in a few days time.  The next had a ticket queue of at least 90 minutes wait.  It was quicker to drive the 15 minutes to a pharmacy that I know stocks  them on the open shelf.

A safe ketone reading!

Long story short, there were only trace ketones in TD's blood and we could relax a bit.  Getting the glucose down took a lot of patience, jugs of water and more insulin than she would usually inject in 2 days. 

But it worked, eventually, and the lethargy, dizziness, anxiety and fatigue subsided, and TD could carry on with her weekend.  This will always be a part of TD's life.  She will always have to keep control of her glucose, and avoid the highs as much as the lows. 

 I wish type 1 diabetes were preventable, but it is not. 

I wish avoiding it were as easy as obeying a few rules, like wearing a mask, washing your hands and social distancing, but it is not.

. Life throws us so many things we are completely unable to control.  So when we are given a challenge (like covid) that allows some measure of being able to keep ourselves safe, grab the opportunity to stay healthy with both hands. Please.

TD was in DKA at diagnosis.The build up of ketones and glucose was so high that she was in critical danger.  She survived because a dedicated pathologist ran her tests at night and phoned me at 2am to urge me to rush her to Emergency. She is alive because the insulin that was dripped into her saved her life. The kindness of the doctors and nurses surrounded us when we were  overwhelmed and bewildered. 

It is our turn to show that same dedication and responsibility towards the medical community.  Most of them are feeling overwhelmed and bewildered at the sheer number of people who need their care, and of the loss of life they see daily.  Keep being aware of the dangers of covid.  Keep the preventative measures as daily habits.  Keep safe.  Please.

 

 

 

 

 

 

 

End of year blues

In the digital age, this family still relies on a paper calendar.  Each year, usually in October or November, I print out 13 A4 sheets of different coloured papers and create a write-on calendar for the following year.  Each day gets a block, and the family knows - if an event is not filled in on this paper calendar, it isn't happening. (The 13th page is for January the following year - I like being prepared).  I finally managed to motivate myself to do this task today, and I filled in all the recurring important days like birthdays and anniversaries, added the public holidays, and tentatively filled in the school terms in pencil.

I am not particularly hopeful that next year will be a smooth ride - certainly the end of this one has been a train crash, covid speaking. The numbers are alarming.  (Statistics are theoretical and so removed from feelings; having a sibling in hospital on oxygen fighting to get his breath is a real game changer, emotionally speaking.) 

It has been a year when not much has worked.  The permanence and reality of life circumstances, including covid and diabetes, really got to to me a while ago. I think everyone gets end of year fatigue, and this year it is compounded with worry and loss.  One startlingly good thing has happened to my family in the last week: R managed to get home for a  holiday from the UK.   It feels so good to all be together for a short while.

Something else that didn't work towards the end of this year were the Libre sensors that TD uses to read her glucose.  Apparently a bad batch  had been manufactured, and we got 4 of them.  As a result (we think), the MiaoMiao alarm system we were hoping would allow us some extra hours of sleep, did not work either.  Abbotts replaced the sensors - after a lot of questions from their call centre, including did the patient need hospitalization or go into a coma because of the failure.  The MiaoMiao rep was kindly and concerned, but thought it must be a software problem. The upshot of this tech failure has been some high glucose numbers, some sleepless nights and a general mistrust of  reliability of tech.  Bad tech can be worse than no tech, in some cases. 

Next year is round the corner.  I feel I will be starting the year with an energy deficit created by the general upheaval of 2020.  I have read  the Facebook posts that say it is ok not to be ok, or that not everyone is cut out to make banana bread, and I find I am past platitudes.   They lack honesty and simplify complex matters to the lowest common denominator.

I think I need to fill in some Breathing Space days on my new calendar.  Covid, diabetes, tiredness are long term situations. with no end dates. They are situations that need to be managed. 

I wish us all a better 2021.  

An update on Tolstoy the tiny tortoise:  The antibiotic drops prescribed by a kindly vet have worked wonders.  Tolstoy can eat again and his eye is so much better - almost back to normal.  He is able to wander around the Fynbos garden, and is living his Best Tortoise Life.

 

 

 

 

 

Betrayal

⏹ Not for sensitive readers.  I am banging this blog out on a Sunday morning because the words are tumbling inside me and curdling my sense of peace.  Betrayal is a strong word, but it sums up what I have been feeling the past few days.

Speedy attacked Tolstoy with an intent to kill.  (For any new readers to this blog, I am referring to two of the free range tortoises that allow us to live in the house in their garden.).  It was Friday morning, and TD was taking a study break (chemistry this time) and wandering around the garden.  I heard anguished cries which got more and more desperate sounding.  TD was standing with tiny Tolstoy in her hand, tears streaming down her cheek.  He looked limp, with his head lolling to one side.  She choked out what she had found - the older, larger tortoise, Speedy, had turned Tolstoy on his back, and was biting at his neck.  The strong beak had bitten the eye and mouth and both looked beyond healing.  The immediate action was clear.  I gently held Tolstoy, and TD put a very angry Speedy in a confined space.  She put him in her fenced off veggie patch.  

Poor little Tolstoy.  Poor TD.  Both needed a lot of calming, and soothing before we could even assess the damage.  The swollen face and offset jaw and damaged neck didn't give us much hope for his survival. But he pulled through.  The eye is still too swollen to see if he will have sight again, and the jaw seems to be healing.  We made a "nest"  home for him in a cardboard box, and brought him inside to watch over him. Over the weekend, TD upgraded his home to a larger wooden crate that she made, and put some homely plants and gravel in it.  This tortoise is going to need intensive  care for a while still.

Tolstoy in the ICU TD made

Initially all TD could feel towards Speedy was Anger with a capital A.  I think the feeling was mutual.  Speedy ripped up the herbs in her garden, and trampled the leeks.  Too angry to look at him, we left him there overnight and concentrated on helping Tolstoy.  On Saturday morning, I prepared a portion of the garden for Speedy to live in by himself.

TD and I agreed that this incident was raw nature.  We tend to personify things some times - Speedy was obeying some natural instinct to defend territory, or assert dominance. But it felt like a betrayal.  What if TD hadn't been there at the right moment?  What if Tolstoy never completely recovers?  The garden, which has recently brought us so much pleasure, went gray in a mist of the betrayal of nature.

I reacted strongly too.  I felt broken.  This beautiful creature was damaged by a phenomenon of nature under my watch.  I hadn't picked up any signs or been quick enough to avoid the damage.  I felt drained.  But as with all crises, one copes and deals with circumstances to stabilize the situation.  The recrimination comes later.  The what ifs.  The anger.  The acceptance that there is no fault to assign.  The "we can live with this" attitude, and Gratitude for life.  Diabetes feels like a betrayal.  One expects a body to function properly, and out of nowhere, suddenly it attacks.  Nature can be so cruel. But we learn to trust again, to accept, to be grateful.   Tolstoy survived.  TD survived.  We will be OK.

 

Speedy's new garden of isolation.

"We called him Tortoise because he taught us."

 A promise is a promise - it's tortoise time.  One of our family rituals, is playing Hide and Seek with 5 of the 6 reptile members of our family.  Well, just Seek really.  They are incredibly good at "disappearing", sometimes only letting us find them after a few days.  I love how when they know they have been found, they simply stop, completely still, and retract their heads into their shells.  It's the "if I can't see you, you can't see me" defense mechanism that a lot of species, especially humans, employ.

This is Olaf

  Speedy keeping safe

So - some introductions:  Thadeus (who strictly speaking is a Thadea) grew up in Andrew's childhood household, and has been part of the family longer than I have.  She is a gentle soul, a bit of a leader, confident and comfortable in her own shell.  Speedy was rescued by my sister when he was so very tiny.  A dog had damaged his shell in several places and so he is more vulnerable and
exposed.  He hides a lot, and is skittish, and is only just now venturing further into his fynbos buffet garden.  Tolstoy - you have already met - and Olaf are the babies of the group, and heart meltingly gorgeous.  Tostoy is the tiniest, and the friendliest of them all.  Olaf is the best hider of the group. And then there are Bruin and Brown.  These two were rescued from a boutique hotel that was closing, and rehoused with us by American friends who were staying there and concerned for their well being.  Bruin is an easy going, get-on-with-everyone type.  Brown is not.  He is so aggressive that we have had to give him a separate patch of garden away from the others.  Every now and then we try to integrate him back into society, but his physical aggression is nasty, and he tries to hurt the others.  He hisses at us, and clearly had an unhappy childhoood.

TD once had to wear a tortoise for a week. Before technology had become so sophisticated and accessible- way back in 2017- TD's endocrinologist was worried that some hypoglycemic events (low glucose) were being missed and this could put TD's life in danger.  So she attached a "tortoise" to TD (her terminology, not ours).  This was a closed system Continuous Glucose Monitor, meaning it gathered and stored glucose information in the sensor, but was only read by the endo at the end of the trial period .  She could study the data, together with a food and activity diary, and give feedback.  These days, technology has moved so fast that the CGM gives immediate feedback, and TD can adjust her insulin accordingly. The 2017 device was called a tortoise because of it's shape.(and to make it less scary to children....)  And maybe because of the slowness of getting data.

I know tortoises are thought of as slow animals, but in my experience, if they want to, they can rumble over rough terrain at quite at pace.  Aesop's fable of the hare and the tortoise has the slow and determined tortoise plodding on to win over the overconfident faster competitor.  Consistent effort leads to winning the race is the supposed moral of the story.  But life isn't a race to be won, is it.  And we are not competing with anyone.  Diabetes has taught me that there are times to be slow and methodical, and there are times when speed is essential.  Yet again, it is all about balance and context, I suppose.

If you want a fix of gorgeousness, we can organise a Zoom meeting between you and a tortoise....although for most of the meeting you may just be staring at some fynbos, until a tortoise appears.  Trust me, it's not a bad way to spend an afternoon.

Thadeus

 

 

 

 

 

 

 

 

The MiaoMiao

TD is sitting on the edge of the bed, holding a clove of garlic as if warding off evil spirits or fleas, and we are discussing this blog.  I initially was going to tell you all about the MiaoMiao, but she thinks it is too soon.  So she was suggesting other topics :  the garden, Andrew and my 30th wedding anniversary,  tortoises, our mother/daughter relationship, the weird dreams we had last night, arum lilies and water systems of plants.  Meanwhile Andrew is bringing freshly baked cheese biscuits for us to sample  - they are delicious - and I realize that there is beauty in the mundane.

So - the MiaoMiao.  This strangely named device is new to our household, so maybe TD is right - it is a bit soon to write about it, but I will give you some background.  TD uses the Libre Monitoring System for measuring glucose, and it has changed her life.  It replaces the 12+ finger prick tests she had to do for all those years (can you imagine inflicting that sort of pain on your child day after day, year after year with no possible holiday to let her fingers recover?) The Libre is a sensor that is placed on her upper arm and has a filament that sits 5 mm beneath the skin to measure interstitial fluid.  It needs no calibration (finger pricking) - unless something major is going on, and it reads the glucose every 5 minutes and can be read via a hand held scanner.  The sensor gets replaced every two weeks. Sounds good, doesn't it!

 Libre sensor and reader    

 

     But the thing the Libre does not do, is alert TD (or us) if she is in danger.  And not to hammer home the point, but all type 1s live with the daily danger of losing consciousness and going into a coma.  Hyper vigilance is key to good management and safety, but I am sure you can imagine how exhausting that can be over a sustained period. 

Introducing the MiaoMiao.  This device sits on top of the Libre sensor and has a Bluetooth connection to any smart phone.  Several apps have been developed which interpret the data that is conveyed from the Libre through the MiaoMiao and onto the phone.  And it sends out alarms when the glucose is too high or too low. 

The MiaoMiao sits on top of the Libre Sensor

We are still figuring out all the processes  and best usage.  One of its strong points is that it can be used as much or as little as liked; TD is using a sweatband to hold it in place, so that she can take it off  and put it on with no fuss. Andrew and I have been routinely checking TD's glucose at around 2am, and an alarm system will allow us to sleep longer and respond to emergencies.

Not yet, of course.  We still need to learn how trustworthy the device is, because complacency is not an option.  There have been a few hiccoughs - The Libre readings (which we trust) and the MiaoMiao readings have not always correlated - sometimes being wildly different. 

TD is happy to try this new tech.  She was delighted with how small the device is, and the ease of use.  She does not want us, as parents, to have constant access to her glucose numbers, so the app is on her phone only.  We respect that.  

It is early days.  We are holding thumbs this will be a great success and that technology will do some of the hyper vigilance for us.

And the idea of writing about tortoises is growing on me, so to whet your appetite for the next blog, here is a picture of Tolstoy for you: 

Tolstoy the tiny tortoise

 

 

 

 

What the Elves say

 

 2020 is being stubbornly relentless. No one knew how things would pan out when Covid 19 hit the world, and it has been a long, tough season of readjustment. Some people predicted it would come and go, and life would return to what it had been.  Others suspected it would be a long term, on-going change to our way of life.  Most people are just taking it in small chunks, because that makes it all manageable. I think it is the uncertainty that can be the most stressful - the social, economic and personal unsettling cause tensions to rise.

And just when you think you might be getting the hang of  whatever is going on, things change again, and new regulations are promulgated and safety precautions are suggested.

You know all this, because you are living through it. 

But everything I have written above is just what a Type 1 diabetes diagnosis feels like - stubbornly relentless, a huge readjustment, a hope it will go away, acceptance that this is for life, and managing it in small bites.  Covid 19 had a familiar feel to it for our household.

It takes time to adjust to living with a chronic illness, and just when you think you are getting a handle on it all, things change.  TD does an amazing job of navigating the course. 

Lock down has given people a chance to try new things, or catch up on some chores . I eventually made Banana Bread.  TD tidied her room.  It was like an archaeological dig in some places, and  she uncovered lost mementos and buried treasure.  This included two tubes of henna bought in Sedgefield many months ago.  I watched in fascination as she beautifully scripted some words on her wrist, in characters I could not decipher.  It was, apparently, Elvish, Tolkien's made up language from the Lord of the Rings. 

When she offered her calligraphy skills to decorate my wrist, I was delighted.  Here is what I chose to have hennaed on my wrist:

 

 

 

 

For those of you whose Elvish is a little rusty, it says Serenity and Courage.  I think those two concepts are helpful when dealing with everything that is thrown at us - the big and the little stuff, the permanent and the transient. Covid and diabetes.

Tolkien's writings are full of wisdom and advice.  One of TD's favourite quotes is "Not all those who wander are lost."  I love the idea of purposeful wandering, or even purposeless wandering.  It is calming and leads to creativity.

 The Tolkien quote most appropriate during a pandemic might be:

"I wish it need not have happened in my time," said Frodo.

"So do I," said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us."

Live courageously, Find serenity. Decide wisely how you want to live. Wander aimlessly for a while....

 

The Big Picture

We get great pleasure from wandering around our little garden every day, looking at which new plants are popping up, which are flowering and which are flourishing. Some, of course, have decided that this new environment is not for them, but the majority have been nurtured and talked to most days, and are growing despite our enthusiastic ignorance of horticulture.  Weeds abound too, as do mushrooms, as it has been damp (and we put down a mushroom top dressing). 

To get the best view, you need to sit on the bench in the shady corner and squint a bit.  That way you can see the whole picture, and the weeds and mushrooms blend into the greenery and fill the gaps.

I am finding it more and more important to look at the big picture these day.  There is no longer any point in getting hung up on the little details that don't have big consequences. Like traffic, or untidy rooms, and brusque strangers. This is probably one of my reactions to Covid.  The important things to concentrate on are Life and Living.

TD is back at school.  She goes every second day, having one week of two full days at school, followed by 3 days the next week.  Inbetween she does her school assignments and learning at home. So far - and it is early days- this is working well.  I can see the shift in TD's attitude to life as she is able to engage with her friends, and her work, on a more personal level.  It suits her not to have to rush in the mornings (school starts an hour later, and the traffic is light) and in the afternoons (all extra murals are cancelled.) At the beginning of the year, we asked TD to take a serious look at all her commitments and choose which she could let go, in order to calm the rushing stress.  She had trouble deciding, but Covid sorted that one out for her.  The only after school activity she does is her double bass lesson, and that is something she loves.

You have probably read all the news reports about people with comorbidities needing to be extra careful about avoiding the virus.  Sadly, statistics are showing the the most deaths happen to people who also have diabetes.  The following infographic was supplied by the Western Cape Government on the 9th June.

Supplied Western Cape government

You can see how scary this is for the T1 community. TD's endocrinologist, and the paediatric endos agree, that it is as safe for TD to go to school as it is for anyone else her age.  The bigger picture is that young people have a definite advantage  - they are likely to only have mild symptoms and recover quickly.  The other mitigating factor is that the diabetes needs to be well controlled.  This means we need to be extra vigilant to keep TD's average below 10.  This is a huge challenge in such a stressful, unusual time, so we need to be extra vigilant.  I am very grateful that we have resources and abilities to help TD manage her glucose levels.  She will just have to be patient with me forever asking her to check she is not too high/too low.  Moms worry.

The big picture is that the whole world -well, most of it- is fighting the fear of an unknown future. There is always the minority fringe who reject the unpalatable science for a more comforting fiction.

Our front garden is a contemplative space for me.  The weeds don't bother me, nor do the fallen leaves or the mole tunnels.  The whole picture, weeds and all, speaks to me of Life in adversity.

My thinking spot

The silence of sadness

Nothing is simple at the moment. Our world is in disarray.  We are bombarded by statistics and warnings and news broadcasts that make me want to cower in the corner.   We have been isolating for a bit longer than the government mandated time period, because we are very aware that TD falls into the vulnerable category should she come into contact with the COVID 19 virus. Oceans separate us from R;  I so want us all to be together to weather this storm, but the best we can do is (and I am very grateful) chat on Whatsapp.  Home, at the moment, is a Whatsapp group.

Amidst the chaos, TD turned 17.  It was a more subdued celebration than usual, and the party has had to be postponed.  As her birthday was just before lockdown, the four of us (the fourth being O, TD's boyfriend) had a picnic on one of the world's most beautiful beaches.  It is a lovely memory of celebrating TD's TDness.

Sunset at Clifton

Sadness is a silencer.  Words become difficult, amid the sameness of everyday, the magnitude of privilege and the world speaking repetitively about things that are difficult to hear.  So I am silent, as I have nothing new to add.  The best we can do is stay in our bubbles of isolation and feel thankful for all we have.  Except I feel other things as well.  I feel anxious about the health of my family.  I feel restricted and restless, tinged with the guilt I shouldn't be so ungrateful.  The Shouldn't Feelings.  I shouldn't feel sick - I am not as sick as others.  I shouldn't feel tired - I have all the time to sleep, and soft surroundings to comfort me.  I shouldn't feel restless - I have a garden to potter in, and a space I have taken as mine in the house.  Trying not to feel these things creates a silence around me that is exhausting to maintain.  I know - all feelings are valid.  I just have to accept that this is how the world presents itself at the moment.

South Africa's three week lock down aims at flattening the curve.  So far, it seems to be working, but I fear three weeks may just delay the onset of the worst, and we can't stay like this forever.  The economy is crumbling, and I fear that will spark even bigger flames of resentment.

We are doing our part to flatten the curve, conscious that this is a group effort if it is to succeed.  And we are very familiar with the concept of needing to flatten the curve - it is a daily practice here with TD's glucose line.  Every day, we try to iron out the sweeping highs and the dipping lows and on the odd occasion even manage a short period of a steady, straight line on the graph.  It is not easy, particularly now, as TD's stress levels are high, her routines are disrupted, and her social support system is more difficult to connect with.  But we know to keep her healthy, we need to flatten the curve.  (Admittedly the midnight waffles on Wednesday were probably not a great idea diabetically speaking, but what fun!).  Although we aim at a straight steady glucose line around the 7 mark, we know it is unachievable 100 per cent of the time. Life doesn't work like that - things are not linear.  More often they are circular, or triangulate or lets face it, a unnamed squiggly shape unique to every person.

I am not one of those people who say that the COVID19 virus is good for the world - a time for reflection, and to reconnect with nature and other people.  Tell that to the families of those who have died. There are other ways to learn important lessons, and only those who have to endure great loss have the right to tell others to look at the good in the silence of  their sadness.

Holidays, henna and poetry

 Last week, TD and I were discussing some of our favourite sayings and/or quotes. One of mine is the first line of a poem by Gerard Manley Hopkins : " The world is charged with grandeur of God."  I love the energy and responsibility that single word, "charge" gives.  We have just returned from a 5 day break in one of the most beautiful places in the world.  Sedgefield is a sleepy village along the East coast of South Africa, and has been a second home to my family for all of my life.  I think Manley's poetry is fitting for such a splendid place.

Sedgefield reflections

As children, my siblings and I would stroll down to the lagoon, fetch firewood from the surrounding wooded areas to makes fires, pump our own water out of the ground, and read by paraffin lights once the sun had gone down.  These were simple holidays, where the important stuff was the rhythm of light and darkness, high and low tide, and using resources with care.  All of this has been replaced, many years ago, with municipal services of electricity and water, shopping centres and huge expansion.  Beautiful places attract crowds.  And yet, for me, the delight of Sedgefield is the nostalgia of a different, alternative type of life.

This short holiday was even more meaningful, as R is here for a few weeks from the UK.  The four of us have not all been at Sedgefield together for a very long time.  We spent many hours on the stoep, playing variants on the game Bananagram, eating simple, delicious food, reading and chatting.  We went to the beach and swam in the sea water gently rolling into the lagoon. We shopped at the farmers' market and walked every day.  It is a poetic sort of place.

Andrew got poetic too, in the form of henna art on TD's arm.  Henna is a perfect medium for trying out body art, as it fades and disappears within two weeks, leaving space for new ideas or back to school regulation art-free arms.

Andrew is very good at this sort of thing and asked TD what she would like have drawn on her this holiday. She chose a full arm design to feature her CGM.  Technology can be body art too, and TD wanted to embrace her uniqueness.  So the centre of a flower is her CGM censor, with petals radiating out from it.  That is sort of how diabetes management works - the glucose number is at the centre of everything, and all other treatments and management radiate from that number.

Too high? - add more insulin.  Too low? - give more glucose.  Too stressed? - work on calmness.  Too tired? - sleep. This was the holiday of LO appearing on the sensor reader - TD went so low several times it didn't register on her CGM at all. This means her glucose number was below 2.2. This is not safe.   The rest of TD's arm has other important information about her in henna: where she lives, her name in code, a "this way up" arrow and other such vital details.  For good measure, Andrew added a traditional anchor and a "I love Mom." and of course, it goes without saying, a dragon. 

Instead of hiding the CGM, TD decided to celebrate it.  Diabetes (or any illness) does not need to be covered up.  The pancreas is not going to heal itself, so she might as well deal with the fact that she will forever need to monitor her glucose and celebrate that technology can help her.

TD's quote last week was "How lucky am I to have something that makes saying goodbye so hard."  This was written by A.A. Milne and said by Winnie the Pooh.  It is smart choice of wisdom for a 16 year old to cherish.  I think that is how we all felt when we left Sedgefield on Monday to come home to do the Christmas preparations.

It's a nostalgic time of year for me, and as we round the corner into the last week of 2019, I intend looking for poetry in every undusted corner of my thoughts, every smile, and in all the kindness that is dispensed at this time of year, so that 2020 starts with a sense of gratitude. And may we all be charged with the grandeur that is around us.

For the geraniums....

The tree had to go.  Our beautiful, climbable, hammock-swinging tree had grown too large for our plot, and the roots were threatening to cause even more cracks in the house.  It was a sad, but not difficult, decision as we simply could not live with a beautiful tree but no home.  A few Saturdays ago, with the help of a wandering band of tree-fellers, we cut the tree down, and then cut it up.

Sunlight flooded into our lounge , and immediately lifted our spirits (and showed the dirt on the carpet). There is usually a bright side to even a sad decision, if we care to look for it.

In my head I envisioned a change in the garden lay-out.  Grass is SO before-drought these days, so we dug it up.  We have decided to make little gardens instead of one big patch of lawn, and to create a number of flower beds using the tree logs to border garden or wood chip paths.  It is hard work, digging, axing roots, laying paths, planting geraniums, planning where the tea mug stumps go.  In my mind I can see the future garden, but at the moment you will have to graciously use your imagination when you come to visit.

Changes require a certain amount of bravery - we can get (too) comfortable with things that are familiar, and change can show things in a different light. It is also a realization that things could work better. (The engineer husband always says "If it's not broke, don't fix it") I felt, and I think TD did too, that we needed to make some changes in her diabetes management.  The last few months have been difficult, glucose numbers wise.  We had, I think, built solid foundations for diabetes management over the past few years, but some encroaching issues were causing cracks.  Safe guarding TD's health is not as simple as uprooting a tree however -Oh I wish it were - so we needed to see where things are not working optimally and how we can redesign a system that helps create a calmer glucose experience for TD.

On my request, we have gone back to writing a food diary.  It helps.  Somehow recording the day's insulin shots and food intake along with any notable activities makes the process of glucose control more mindful.  TD has increased the basal (long acting) insulin dose - only by one unit, but that is how finicky glucose control is.  Her bolus (short acting) insulin at breakfast is taken 18 minutes before she eats.  Not 10, not 20 - 18 seems to be best.  You can see how much attention to detail your body wants you to take.

This all helps, but still does not eliminate the waves of highs and lows that TD surfs daily.  Some of her lows have been extreme lately.  Did you know that hot water can cause someone with diabetes to go low?  (The blood vessels dilate from the heat and cause insulin to be more rapidly absorbed than usual.) So taking insulin just before a lovely bath or hot shower can cause a hypoglycemic event.  Last weekend TD generously offered to have a rare and sacred bath, as the geraniums were looking a bit droopy and needed watering (we recycle of course!) She went low, and called me in to help.  As I wrapped a towel around her, fed her glucose and waited until it was possible to lift her out the bath, we both wished for a magic wand that would make this horrible disease go away. 

But in the absence of magic, we will look for shafts of sunlight, and embrace helpful changes.  Things may look a bit wild and unkempt at the moment, but just wait until next year when the fruits/flower of our labour will create a beautiful environment.  Well, That's the hope, anyway.  And if not - we can try again.

It takes a village to do the homework......

And breathe......


Greyton is a pictuesque village about an hour and a half drive from Cape Town.  It nestles quietly in its green surroundings in the the shade of the Riviersonderend mountains.  The word I most associate with the place  is Tranquility.  TD's grandparents had a thatched cottage there some years ago, so I am familiar with the beauty of the area. I took TD to see the house (which has changed a great deal since my parents lived there)  on our first Mother/Daughter getaway a few years ago.  Quaintly, the new owners kept the name : Snail Morning.  That gives you an idea of the pace and focus of the area.

But, once a year, around this time, Greyton swarms with teenagers.  TD's school sends all the grade 10s on a camp to Greyton.  Luckily, they go in three batches of about 70 at a time, and after 20years, the townsfolk are used to them.  In fact, they help the learners with the questionnaire about the place that hasn't changed in all the years that the school has been visiting, even though some of the questions are now irrelevant.  It is part of the quaintness of the village that they embrace the invasion and kindly help to share the homework.

Of course I did my usual scare/educate routine for the teacher a week before they left, trotting out the same old info sheets that I have been using since grade 6, modifying a few details along the way.  And as usual, the teacher was eager to hear, learn and inject the grapefuit with an expired emergency kit.  TD's numbers have been all the place (I might have mentioned that once or twice recently 😏), so the practice round was very necessary.

The run up to the trip was epic.  The Saturday night was the much anticipated Grade 10 dance.  Ah, TD and all her friends looked beautiful, and had a magical night. On Sunday, after a sleep in,  we celebrated our wedding anniversary in Wellington and then needed to play Settlers of Catan, so we did. On Monday, TD had a regular school day, followed by extra murals and stayed to see the dress rehearsal of her friends one act plays. (Her school day lasted from 7.30am to 10pm)  So when Tuesday rolled round, TD was somewhat tired.

Breathe....

I was a bit anxious about this time away, more so than other times.  From my chat with the teacher, I knew TD was going on a hike into the mountains in a small group with no adult accompanying them.  I feared a low.  And sure enough, TD had a 3 half way into the mountain.  Luckily she caught it early enough (she could still think rationally and open her glucose) and dosed herself with sweets, and some  friends helped her.  She had several more hypoglycaemic events over the next 24 hours, and  even more hypers.

The highs seemed to concern the teacher more than the lows. TD went very high during the night - above 20.  Although this is dangerous, it is not as dangerous as 3 in the mountains, but I think maybe the teacher was mixing up the hypos and hypers.  A very easy thing to do when all this diabetes stuff is new and overwhelming.  She kindly checked TD at 2am and suggested TD take insulin to bring the level down.  TD phoned me to chat, and both she and the teacher messaged me a number of times during the early hours of the morning, and by breakfast time, TD had stabilized.  I bought the teacher a big box of chocolates, because I thought it might be going overboard to buy her the Superhero cloak she deserves.

And breathe...

TD came home safely, having had a wonderful time.  I thought she might be worried about all the highs and lows. "How was it?" I asked.  "The chocolate shop was closed"  she said.

And breathe.

The picturesque village of Greyton

Wearing my heart on my sleeve

My heart is a fragile place at the moment, - it has been a bumpy week. Yesterday we dropped our son at the airport, waving him off to start the next chapter in his adventures. Saying goodbye to him at the airport is not uncommon – he has travelled a lot in the last ten years, and with such regularity that we joke that we have our own reserved parking bay at the parking garage. But yesterday’s goodbye seemed different. Perhaps it is because I am feeling a little vulnerable at the moment; perhaps because his stay at home was much needed family time; perhaps it’s because goodbyes have been especially difficult this year. He was sensitive enough to pick up on my reaction and apologised if his departure was going to blow the tissue budget for the month, and reassured us he will keep in touch and be back for a visit soon.

TD’s week has been bumpy too. On Tuesday her glucose numbers were dangerously high.  Her Whatsapps messages sounded as though she was distressed. Quite rightly too – Glucose numbers above 20 are scary. I gave her the usual advice (inject extra insulin and drink water, and test regularly.) It didn’t work. Instead of lowering the glucose number she went up. We checked with the endocrinologist that we were on the right track –she confirmed we were, and if the stubborn high didn’t go down and if TD had ketones in her blood, she would need to be hospitalised. I didn’t relay the second part of the message to TD, but she sussed out the situation accurately. Her next reading was still high, and I decided to fetch her from school. Her text  message read “Please don’t take me to hospital.” Followed by: “Promise.”

This was not a promise I could make – and I was heartsore to know that sometimes, as parents, we have to do the unwanted or unpopular to keep our children safe. TD has an immense fear of  hospitals, and as our last experience there was less than optimal, it is not a particularly welcome thought for me either. But the truth is, that if the glucose in the blood is too high, TD would need to be put on a drip.

At home, TD pumped more and more insulin into her system drank litres and litres of water and we watched a movie to relax. Ketones were 0.1 so we could breathe easier. It worked. She  was still high, but below 15, so not only did we avoid the hospital scenario, but she was also able to go back to school to see the student plays production. This was very important to her.

The rest of the week was a rollercoaster ride of glucose numbers.  She soared back to above the twenties and dipped into the low fours.  I am aware, again, how much she deals with on a daily basis, and how maturely she deals with it all.  We changed insulin vials, and eventually changed insulin type.    The schools are on a short break, and I am hoping this will give her body - and my heart - a chance to catch up and settle down to our usual patterns.  Deep breaths, sleep and lots of tea should do the trick!

Target practice

Both TD and her brother are keen archers.  Our son has been involved with the ancient sport for the last four years, and TD's high school offers it as an extra mural, so she has been doing it for almost two years.  Often they enthuse to us about the art,  and so last weekend all four of us signed up for the afternoon practice at the Cape Town archery centre.  As Andrew and I were complete novices, we were placed in the group that needed to know everything (including for me, which way up the bow went!).  The other two were put in the group that shot at 20m and didn't need the constant supervision we did.

We are bitten.  It was such an extraordinary experience, and I enjoyed every minute of the two hour lesson.  It turns out Andrew is a bit of a natural, often hitting the yellow centre of the target - and this surprised me because his darts skills are, shall we say, a bit challenged.  I managed to miss the entire target once, landed  arrows on the outer rims a few times and, once I had figured out the skill of the correct posture, managed a few golds. Not bad for a fifty something novice (OK, it was only from 10m, but I was proud of my efforts!)

So if you are looking for something rather unusual to try, I would recommend archery!  Things I will bear in mind next time I go are that it is good to have a firm grasp of the basics - how to hold the bow (they are large - person height!), how to support the arrow in the nock correctly, how quickly to release the arrow once you have aimed.  That sort of thing.  You also need to take into account the surroundings - how many people are aiming at the same butt, the wind, sunlight in eyes,  and finally, especially for me, I need to find my confidence.  And to forgive myself for the occasional complete miss, and to keep trying.  Like all sports, I am sure practice is the key to good results....

...Not unlike diabetes care.  The target that is aimed at is optimum health, and the method is similar: have a firm grasp of the basics - knowledge up on the glucose/insulin relationship, know how best to support TD with all she is dealing with, know when to let go.  And take into account the whole picture - what's blinding us or sending us off direction and make sure we are all on the same page.  And then have the confidence to know that I am doing the very best that I am able to at any particular time.  Things go wrong, target levels are missed, and that's ok.  Keep trying and never give up.

 Aiming at a target is a good idea.  The concentration and focus archery instills, and the discipline it requires are excellent life skills.  Whatever the target is - life balance, happiness, health - the more you practise the easier it becomes.

Marketing magic

TD is a dedicated Harry Potter fan.  She has been "sorted" into the correct house for her personality, (Hufflepuff), and knows her Patronus (animal-spirit) thanks to the online quizzes available to help with these things.  Obviously, she has read all the books, seen the movies and follows the actors' careers.  Emma Watson holds a special place in her heart for her views on feminism.

So it goes without saying that when we were in the UK,  TD was keen to immerse herself in Potterish paraphernalia and places. One can book a tour designed to delight fans by taking them to the set, the Great Hall, Dumbledore's office, Diagon Alley and much much more.  Knowing the market well, the organisers of these tours charge an arm and a leg per person and effectively magic away many pounds from your wallet.  So we decided to do it the DIY way.

Platform 9 and three quarters is a piece of wall cordoned off at Kings Cross Railway station.  There was a long queue of young wizards and muggles waiting to have their photos taken at this particular piece of wall.  We offered to wait for TD if she wanted to join the queue, but she was happy to have her photo taken on the outer side of the cordon and use her time more wisely in the Harry Potter shop situated next door.  We wandered around, examined the expensive merchandise and marvelled at the power of marketing.

On another day we made the pilgrimage to the Oxford Street Primark.  There was a treasure trove of affordable  goodies, and TD splashed out with her carefully hoarded savings.

While I was in Cape Town, the travellers did a road trip to Scotland and stopped at the Harry Potter Bridge.  (Well, in real life it is the Glenfinnan Viaduct near Fort William.)  Andrew, weaving magic of the real kind, had looked up the train timetable, and timed their visit so that they could see the train crossing over the viaduct.  TD was most chuffed.

 I rejoined my family in Cambridge, and that for me  was like entering a magic world.  We were lucky enough to be allowed into Trinity (our son's college) and the magnificent dining hall outranks any film set Hogwarts hall.  Academics, with their gowns flowing behind them, briskly walking on cobbled streets, magically sends one's imagination into another world.  And yet, it is real.  This is how the students at Cambridge live - in a town with ancient, magnificent buildings, narrow cobbled streets, magical book shops and plenty of muggles taking photographs.

Marketing magic is a profitable business.  Every now and then an email pops in my inbox offering a cure for diabetes T1.  These range from ActoBio's cheese producing bacteria to extreme diets to social activities to acupuncture, and they all need elements of magic to work.  Mostly people look at ways of managing the sugar/insulin see saw, and the diet option, acupuncture, social activities are very important for keeping numbers level, but a cure?  Big pharmaceuticals are pouring money in to research.  The same companies that make millions from selling life sustaining insulin are hoping to offer a medicinal cure. There is obviously a mind boggling amount of profit to be made.  So while we wait for science to find a way to kick-start a pancreas into making insulin, I will save my magic for the worlds of Harry Potter and Cambridge, whilst still keeping an open mind about a cure for diabetes.
  

Harry Potter's author, JK Rowling, says it most eloquently: " We do not need magic to change the world, we carry all the power we need inside ourselves already: we have the power to imagine better."

Love Letter : a card game

So, this is how we roll:  TD was sick.  She had a bad dose of gastric flu, and couldn't keep any food in or down.  She had a high temperature, was listless and unable to eat.  I took her to the GP who has extensive and personal experience of T1 diabetes.  I trust him.  (A lot of other people do too - the waiting room was packed and we had a couple of hours to chill before he could see us.)  TD's ketones* were over 2  -that is too high, so he wanted to put her on a drip straight away.



The surgery nurse hooked her up in one of the treatment rooms, and I phoned home to say we would be another hour or two.  TD was stressing for two reasons: One – she does not like drips.  She has bad memories from the time she had a drip needle in her hand for a week at diagnosis.  And Two – it was the last day of her brother’s holiday in Cape Town before he had to fly back to the UK.  She didn’t want to miss out on those last few hours with him.

A few minutes after my phone call, my husband and son arrived at the doctors’ rooms.  TD’s brother had brought with him an-easy-to-play-even-with-one-hand card game, and so the four of us enjoyed some quality family time while the drugs and saline dripped into TD’s system.  Because this is how we roll.

The next day, TD had not responded sufficiently to the meds, so after dropping our son at the airport, and having spoken to Dr T, we took TD to be admitted to hospital.

Another drip in the emergency room :  this one took two nurses, one doctor and more than four attempts to put in.  TD’s veins are almost invisible, and even when found,  they are not receptive to big IV needles.  TD was distraught.  I held her head, shielding her eyes from the puncture bruises and tried to calm her a bit.  She dislikes hospitals even more than she dislikes drips.  And this time she had no brother to cheer her up.

The nurse on duty had a larger than life attitude and was Fabulous! The doctor on duty just seemed flummoxed. The whole diabetes thing seemed to throw her a bit.  She ran some blood tests, put up the drip, but was ready to send TD home when the blood results came back, without wanting to give the drip time to do its thing.  TD had high ketones -4 on admission.  We told the doctor we would wait for the drip to finish.  I massaged TD’s feet, Andrew played a logic game on his phone with her, the Fabulous Nurse checked in on us every now and then.

At last, a couple of hours later, the drip had dripped its last drop.  The Nurse retested TD ; Ketones 2, Glucose 22.  Now the doctor thought there might be a problem.  She suggested giving TD 10 units of fast acting insulin.  Andrew and I looked at each other.  We suggested treating her at home.  10 units was a worryingly large amount of insulin, and we were worried she would go too low.  TD was discharged, and we took her home.

Instinct can be a useful tool, and in this case, we were right.  By 2am, TD’s glucose number was down to 5, with no extra insulin given.  We had been right to monitor her at home.  The gastro cleared up with the prescribed antibiotic.  It had been a wobbly week,  and one that allowed a lot of introspection for me about what is important in life. Somebody stealing the house numbers off our front gate, a disappointing trip to a hairdresser, travel plans getting complicated - all background in that same week- all became trivia and annoyances rather than anything to worry about. The important stuff was all ok – TD got better, we had had a lovely family holiday time together, and when things get a bit rough the four of us form a gridlock of security for each other. I imagine that we were quite a sight, crammed in a small room, TD lying on the bed with a drip, the rest of us trying to squeeze into the space without getting in the way too much, playing a card game (It is called Love Letter if you want to get a pack!), guessing  as to who held which cards.  There were a few amused glances thrown at us. I don't mind what others think - because when a 14 year old is dealt the diabetes card, she needs to be surrounded by love and humour.  And that is how we roll.

A note on ketones:  If a person's body does not have enough insulin, and so glucose cannot be converted into energy, the body looks for alternative energy sources and starts to break down body fat and muscle.  Ketones are the acid by-product of this process, and their presence can quickly lead to DKA (Diabetic ketoacidosis) - a life threatening situation.

 

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.