"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

 

 

 

 

 

 

 

 

Virus alert

I am not sure about you, but to me it feels as if the world is holding it's breath and waiting for better days. A lot of that hope is focused on the development of a COVID 19 vaccine that will allow us to become immune to this devastating virus. 

And it seems possible and probable that the medical community will be able to pull that rabbit out of the hat soon.  Or is that wishful thinking?

I have been trawling the internet to see what has been done about a vaccine for type 1 diabetes.  There have been claims or rumours of trial vaccines being "close", but reading between the lines, that is not actually possible.  This is mostly because no one knows exactly WHY some children suddenly develop T1.  From studies, it can be seen that there can be a genetic component, but it is mostly attributed to a virus attack.  TD's endo, when we first spoke to her shortly after diagnosis, asked if TD had recently broken any bones, or if there had been a major social or emotional upheaval.  (The answer was no to both these questions in TD's case.) Studies regarding stress as a contributing factor are inconclusive - some research pointing towards a nod and others stating this is not plausible.  The upshot is that it is impossible to prevent something if you don't know what causes it.

A vaccine to prevent anyone else getting T1 would, of course, change the world, especially as T1 diabetes seems to be on the rise.  The "risk" ages are 4 to 7 and 10 to 12 (who knows why) and strangely the further away from the equator, the more cases are diagnosed.   TD fell plonk in the 10 to 12 age group, and a fair distance from the equator. If a cure could be found., along with a vaccine, I would be even happier.

Type 1 diabetes involves a lot of needles, injections, food control and vigilance. It is a full time job around which everything else must fit in.  There are things that TD is not able to do when she is experiencing a hypo- or hyper- glycaemic episode.  These include, but are not limited to, exercising, concentrating or anything involving fine motor skills precision. So, keeping the glucose line at an even, flat 6 or 7 is a goal that needs to be strived for daily, just to get on with regular stuff.

Viruses are big news at the moment - understandably - as COVID 19 has affected everyone worldwide in some way.  A virus can be defined as  "a disease -producing organism, capable of growing and multiplying within living cells" (according to my Pocket Oxford dictionary which was printed before computer viruses existed!!) or "moral poison, malignity". 

All the viruses floating around present challenges that need to be addressed head on.  Currently the moral poison of prejudice is being held up in the spotlight, and it is a dismal virus.  There is no vaccine for intolerance and hatred, and we need to find a cure to moral blindness as fast as possible before the system of society is too corrupt to recover.

Just like TD's diabetes diagnosis highlighted for us the impact a virus can have, COVID 19 has exposed the vulnerability of everyone.  It has reminded us to appreciate what we have and why we have it. It reminds us to be human and to be kind.

The voices in my head

TD's playlist has some songs on it with most annoying lyrics - the type that get stuck in my head and play on silent repeat in my mind until I am forced to do something drastic, like listen to some of my own style of music, or distract myself with a book.  TD's generation has a lot of angst in the lyrics that are used, and I wonder if that repeats in their subconscious and adds to a collective melancholy.  I wonder if song lyrics (like Teen Idle or Ocean Eyes ) add to the voices in their heads.

We all have voices in our head. ( I hope...do we?? Perhaps I am speaking for myself here!) They are the ghosts of childhood, the constrictions of societal norms or the self imposed opinions of self.  Or sometimes they are just lists of things that need to be done.

My early morning checklist includes things like changing the needles on both insulin pens, giving a very sleepy TD the correct type of insulin at the correct time, making sure she eats within a certain time frame of injecting, and packing an ice pack in the insulin kit for school.

 The last couple of weeks have been diabetically challenging.  On one occasion, TD did not take her insulin kit to school.  For some reason, I didn't pack it or leave it with her lunchbox, and as her glucose had been too low at breakfast time, she hadn't taken any Apidra (short acting insulin) when she woke up.

The voices in my head did a little admonishing speech - the what ifs looping around (the emergency injection for severe hypos lives in the kit and should be on TD's person at all times).  I whatsapped her and dropped the cooler case at the school's front office.  Crisis averted.

TD checked in with me back much later, towards the end of the school day.  She thanked me for bringing the insulin through.......but I hadn't checked properly and the Apidra pen did not have a needle on it.  It is absolutely no use whatsoever without the needle.  Oops.

No insulin equals glucose spike.  High glucose equals headaches, tiredness, blurred vision and inability to concentrate.  Inability to concentrate equals a hard day at school.

Shortly after this, TD caught the bug going round.  The doctor booked her off school for the best part of a week.  She slept for most of it, and she tried to stabilize those glucose levels.  But guess what - pretty much any illness causes sugar levels to rise as cortisol ( glucose) and adrenalin are released into the blood stream to help with fighting infections.  Even a minor cold can be a major challenge for anyone with diabetes.

Enough, say the voices in my head.  How about some positive news.

TD has a fascination with, and love of, old cars.  She recently had the opportunity  to be a passenger in an 1916/17 Dodge Brothers on a rally from Wynberg to Simonstown. (The date discrepancy relates to the addition of a part in 1917....)

The 1916/17 Dodge Brothers

It is a beautiful coastal route, and TD waved like royalty from the back seat at the many admirers along the way.  It was a lovely day,  celebrating nostalgia and fine craftsmanship, the carefree feeling of wind in your hair and sun on your shoulders.

Our inner voices play an important role in how we live life.  Sometimes it is hard to drown out the picky voices of criticism and or the bass notes of self doubt.  Sometimes these voices need to surface so that things can be made better and easier, or so that we can make longer check lists.  Sometimes the voices need to be overlayed by the kindness of people we trust, who encourage us and tell us we are doing ok, even in the diabetically challenging weeks.

Back to school

I have to laugh.  I have just spent the last half hour trying to unlock our oven from its child SAFE mode.  I had accidentally locked it this morning when I cleaned a little more enthusiastically than usual, and wiped the display face with a flourish and hit, it seems, a clever combination of buttons that activated the Safe mode.  No problem - Google is my friend, and I simply typed it in to a search.  I have to assume the designers of these ovens either have sadistic streaks, or very clever children who have cracked all their previous attempts at safety locks.  I trawled the internet, even putting in the exact model (which comes in two versions it seems, both with different instructions.)  Any way , the long and short of it is, after I had stopped to drink a mug of tea, I finally managed to unlock it, and start reheating the leftovers which will be supper.

It was frustrating.  And I wouldn't tell even my best friend how long that took, and how many times I tried to guess the combinations of key presses before looking it up and how I had to laugh at my foolishness.

It came on top of a frustrating interaction with Walton's Stationers, suppliers of TD's stationery requirements for grade 11 (Grade 11 ! - how did that happen so fast!) We ordered and paid for the books last November, as requested, blissfully expecting to pick up the cardboard suitcase they are packed in at school last Tuesday.  Ah no, it was not to be.  They had received the payment, but not the list of items ordered.  No problem, mistakes happen, and I sent off a copy of the form to the email address supplied.  TD could fetch them the next day, and she would just delay the covering until the next afternoon.  No luck with that either.  I phoned, and was promised the parcel the next day.  It didn't arrive.  And so on.... I won't bore you with the daily dash of expectations.  Waltons promised today  1pm would be the real thing.  Sadly, the driver saw the school initial W, and decided to take it to the Waterfront instead.

I had to laugh. The person in charge offered to fetch it and deliver it herself, and because I was dashing about this afternoon, we decided to meet half way in a deserted parking area.  She apologised, and handed me not only the stationery box, but a little brown packet with the following label for me to give to TD:

"We're sorry for making you feel blue.  We're going to keep working on being sharper but, for now, here are some treats for you."

(The fact that they had a nifty little rhyming label shows that TD was certainly not the only person who had started the school year writing her notes on pieces of paper that will need to be rewritten into the books.)  The gift was a kind gesture - TD loves stationery, and a few gel pens or a rainbow eraser with the little brush on the other end that smells of bubblegum  (remember those?) would have delighted her.  But no, the treats inside were chocolates and a sucker. So it was an insulin heavy gift, which TD consumed on the way to orchestra rehearsal. She came home with a high glucose reading.

This year looks as though it may be as chaotic as last year.  TD has hit the first term running, and has very little down time this week.  On Friday, she and a large number of fellow musicians, go away on the school's  annual band camp.  This is one of the highlights of her year, and is much anticipated.  It was on this camp a couple of years ago that a discussion about Star Wars led to a friendship and romance with O, who feels like part of the family now.

I have started stocking up with some provisions to supplement camp food.  TD is confident and adept at the diabetes management.  She has many friends who know what to look out for in lows and highs.  All should be fine.

Should.

That shadow follows me everywhere. 

Hello World

Well.....it's been a while.  When I sit down to write, something whispers in my ear that I should be doing something else.  Procrastination is an art, if properly done, and needs practice to perfect.  I am getting there.  In the meantime, TD has become my Digital Media Manager and has signed me up for Facebook.  Who would have thought I would ever venture willingly into such a public space.  To be honest, it is not under my name, but I can use it as a vehicle for telling the world  about a little cottage industry I am dabbling in, so there are no personal revelations about our household.  No, I do all of that here, in this blog. (😏) TD is somewhat of a pro at this social media stuff,  and takes very nice photos to add to the presentation. Arty.  Different.  Creative. Expressive.

It is exam time again, so TD has removed herself from Instagram for the duration of the study period. (and she does not do Facebook.)  She needs to sleep.  Digital distractions are time consuming, so I am pleased that she made the decision to limit them, and concentrate on what needs to be done.

Not to overemphasize this whole sleep thing, but it really is getting to crunch time.  Like eating and expecting your pancreas to compensate for your carb intake, we often take sleeping for granted as an expected working body function.  T1 is vicious: it not only restricts your sugar intake, it also restricts your sleep patterns.  It is not safe for TD to sleep 8 or 9 straight hours without testing her glucose level.  My alarm is set for 2am every morning.  Things are easier with the CGM (Continuous Glucose Monitor) as TD does not have to do a blood test.  It is a quick swipe of her arm, and hopefully she doesn't even wake up.  If things are wobbly, I check her again at 3.  And then I make a judgement call if it is safe to leave her until the next reading that Andrew does at 5.45.  Most nights are fine, but the few nights when we pick up lows remind us that we cannot get complacent. It is a matter of life and death.

 This Sunday the cashier at the local Spar generously gave us a pensioners' discount when we went to buy ice creams after a wander/bike ride around the neighbourhood.  Clearly we look a bit older than we actually are . And when you are a teenager that might be considered a compliment, but at my stage of life it signifies a certain need to schedule more sleep :)

The year is winding down.  Soon we will all be able to exhale, get into holiday mode and allow ourselves the space to rejuvenate.  And sleep of course.

But let's not get ahead of ourselves.  There is plenty to do now.  TD needs to update the Facebook page, I need to find some more creativity. We all have projects to complete. We need to be Arty.  Different.  Creative. Expressive.

Strength to you all, as we gallop towards the Busy Season.  May you be sure footed, and stride over the hurdles with ease.


 

My windswept look at the last craft market! If you want a closer look the Facebook page is called Reflections Glass Pendants

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

Epic Fail

If something stops working completely, that is a clear indication that something is wrong or it is broken.  But if something still functions, but gives incorrect data that looks feasible and correct, that is an epic fail. That is what happened last week with TD's Continuous Glucose Monitor (CGM), and I was not best pleased with that piece of technology.

Late Wednesday night/ early hours of Thursday morning, the CGM graph line looked astoundingly impressive.  The number were in the perfect zone (5 -6) and the line was steady, flat and consistent.  But then things took a dip for the worse, and TD's glucose plummeted to the 3s, then 2s  (so the graph told us later...) and finally when Andrew did the 6am reading, the display just said "LOW" i.e. no positive number at all.  That means that TD's glucose level was so low that she should have been unconscious or dead.  But she said she was feeling fine.  Talking is definitely a sign of being undead, so that was reassuring for us.  She ate Super Cs, and then she tested using the old fashioned way - by pricking her finger and testing the blood sample.  This reading said her glucose level was 12 - a little high, no doubt from those Super Cs.  We compared that reading to the new techno CGM.  It came up with 2.6.  You can see the problem - this is misinformation at its worst.  The sensor in her arm continued giving false readings all day, until TD decided to rip it out, as it was causing more worry than it was worth.  (And it is worth quite a lot - each sensor, which is supposed to last two weeks, costs just shy of R1K).

Symptoms of a severe glucose low (hypoglycemia)

We waited until the usual switch over day - Saturday - to replace the sensor, and touch wood, it seems to be working fine.  When it read 2.3 today at lunch time, TD really was horribly low, shaking, unable to function and felt awful.  It really was an emergency.

Sometimes I think we rely on technology too much.  TD's reason for delaying the use of technology and the CGM was so that she could learn to listen to her body more. And that has served her well.  She knew she wasn't low on Wednesday when the meter told her she was, and she knew today that she was in trouble, and for that I am very grateful.

It shook me up a bit.  We have to trust this technology to know what TD's body is doing, so malfunctions confuse me and knock confidence levels.  I needed to keep an eye on TD last Thursday - I didn't trust the universe at all that day.  It was a school free day (exams) so she and I had a quiet day here.

I wonder about my own life at times.  I need to function optimally - not display false readings of situations or misjudge which direction things are going.  Writing has become my old fashioned way of checking myself.  It is like fitting a working sensor. And new technology allows me to connect with a community.  Your reading my blog encourages me, and I thank you.

The Rabbit under the bed

Arriving late to a funeral is bad form.  Our timing was all off on Sunday, and we were running spectacularly late for a lunch in celebration of Andrew’s Aunt’s life.  The family are the kindest, gentlest, most welcoming people in the world, and they were not bothered by our tardiness at all.

One of the reasons (but not the only…) we were behind schedule was because TD had a low.  She plummeted from 3.5 (which is already low) to a staggering (literally) 2.3.  The Super Cs didn’t touch it, so she had a Chocolate Gu (a brand name for flavoured glucose).  Barely able to walk, she staggered to the car and we set off.  The effects of a low can last a long time – much longer than it takes for the glucose number to rise.  She was feeling off well into the afternoon.

There was a lot of emotion flowing at the luncheon.  Aunt Hazel had died surrounded by her family, in a home she loved, with a bunny under the bed. (It’s a free range rabbit I was told, and often naps on the bed in the afternoon sunshine.)  Andrew’s cousins and some of the grandchildren spoke of this remarkable lady who set out to enjoy every minute of her 92 years.  It was a profoundly simple and honest celebration.

Death is a difficult topic to broach on the best of days, and yet it shapes so much of our lives, and how we see ourselves.  Time becomes consciously precious, a limited resource.  A gift if you like.   

To be brutally honest, one of the consequences of a person with diabetes going too low is Death.  It does not happen to many people, but it does happen.  How do you not frighten a teenager with this thought while still imploring them to look after themselves?  Yes – teenagers die of many things – accidents, abuse, illness, the proverbial bus…. Diabetes just adds one more liability to the list.  I have told TD it will not happen on my watch, and I am determined to keep that promise.  And she will play her part in looking after herself and asking for help when she needs it.  You see, when she is low, her behaviour can be erratic – a mixture of utter fatigue, shakiness and silliness.  And at night when she is low, she is asleep and looks just the same as when she is not low and asleep. 

I imagine any parent cannot bear the thought of anything awful happening to their child.  I know I can’t.  And while I can live my life and carry on with daily routines, diabetes lurks under the surface of our family, like a monster under a child’s bed.

The fear of monsters is the fear of the unknown and dangerous.  If we can acknowledge our fears, and drag them out into the open, maybe the monsters will turn into something softer and more comforting.  When TD and I needed a little space at the celebration lunch, we went to talk to the rabbit under the bed.  I think looking for the rabbit instead of the monster might just be a calmer way of living.

 And to Hazel : your legendary zest for life is an inspiration.

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!

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

Happy birthday TD!

TD had a good day yesterday.  She was beaming and bubbly and full of what I call TDness, or essence of TD!  It was her birthday, and her school friends had decorated her satchel with streamers and ribbons.  Some had hand drawn beautiful cards.  Others had written the kindest messages.  She felt celebrated and loved.

Her TDness rubs off on others too.  On occasions, complete strangers have stopped us in shopping centres, to comment on her happiness and joy.  Her grade 11 sports coach told her that she had “a big smile, lots of friends and diabetes” after her last training session yesterday.  (Her school has a collective sense of humour which helps make it the fine institution it is.)

She is now 15 – well ensconced in her teenage years.  She is a giddy mixture of old world wisdom, youthful optimism and age appropriate cynicism.  She does come unstuck at times.  Sometimes she is just too tired to give the world her TDness, and she needs time to gather her thoughts and rest. Like all of us.  She was so tired on Monday evening that, by mistake, she injected the wrong insulin at bedtime.  Luckily she noticed that she was injecting Apidra (quick acting insulin used to balance the carb ratio at meal times) instead of Lantus ( the basal injection which runs in the background with a slow steady stream of insulin).  This is the first mixup in three years, but it is a scary one.  If she had not noticed, and gone to sleep, she would have gone way too low and…. I don’t even want to think what may have happened.  It was easy to remedy in this case – a glass of sugary drink and a slice of wholewheat bread (quick and slow release carbs respectively) and a blood test every couple of hours or so, and all was well.

We celebrated her birthday at her choice of restaurant last evening, and wandered around the Waterfront, reminding ourselves how beautiful Cape Town is, and how lucky we are to live here.  As usual we missed our son and thought of him while we were celebrating.  He sent her the biggest bunch of beautiful flowers.(Pictured)

Time marches on.  Fifteen years ago TD was new to the family, a delightful bundle of gurgles and perfection.  Nothing much has changed – she is still that delightful - but bigger-

bundle of gurgles and perfection and I am so grateful to have the chance to mother both my children. I acknowledge them as the greatest life teachers anyone could hope for.

(I know "perfection" seems like a heavy label and responsibility.  I don't expect perfection from my children. It's not about what they do - rather about who they are.  They are perfect at being themselves.)

Happy birthday, TD.  Wishing you all the happiness you give to others reflected straight back at you. Put on those new sunglasses – that reflection will be quite dazzling.

Magical Science

The Science fiction author, Arthur C Clarke famously wrote :"Any sufficiently advanced technology is indistinguishable from magic." I think I know what he meant.  There is a specific blood test that - magically/ scientifically - can give a measure of the average blood glucose level during the last three months. The science part is that it measures how much glucose binds to the red blood cells, and red blood cells circulate around your body for about three months.  The magic part is that you can prick your finger, take a blood sample and three minutes later a magic box prints the information for you on a sticker.  This is called the HbA1c test.

TD visits her endocrinologist about every three months and this is one of the tests and checks that keep her safe.  People like me who are lucky enough to have a functioning pancreas, should have a three month average of  of blood glucose of between 4.5 -6.5 mmol/l. And that is a yardstick for diabetic control too.  But it is not that simple.  TD's last HbA1c result was 6.6.  This is good - it means that high sugars are not doing long term damage to kidneys, eyes and nerves.  But the endocrinologist was a bit nervous, as some of TD's daily readings had been quite high (exams, feeling ill, teenage hormones - the usual culprits of high sugars!!), so where were the lows to give such a satisfactory average?  Because TD is not wearing a CGM, we only have the information from her finger prick tests to work from - all the times inbetween are a blank page.  Undetected lows are a problem.  They are scary.  Could TD be going low in the middle of the night, and if so - how low is she going?  We need to know.

The options were either to wear a CGM for a few weeks, or for us parents to do the 2am tests for a while.  TD chose the latter.  So far, so good - no middle of the night lows (a 5.6 last night which meant she could have nighttime chocolate to see her through to morning...).  But this method of testing does not give the full picture.  For that, TD will have to let go of her fear and dislike of technology and wear a monitor for a while.  

Science and magic is not such a strange combination.  I think one sparks the other, creating an environment where imagination triumphs.  We need both in our lives - solid facts to ground us and tell us our boundaries, and a little magic to enable us to dream of different futures and keep us company on the 2am shifts.  



PS: Arthur C Clarke also said  "The only way to discover the limits of the possible is to go beyond them into the impossible".  Doesn't that sound like a T1 journey?

Warriors and Worriers

It is exam time in TD-land.  These exams are the final hurdles in her first year of high school.  It has been a whirlwind of new experiences, new friendships, new subjects.  And a few challenges along the way.

Exam times are pretty gloomy in most households.  There is a heaviness of responsibility, a curbing of free time and even a little social distance as all her classmates creep into their study corners and either study or wait for the three weeks to go by.  Feelings get frayed, tensions escalate.  Glucose levels soar.  If you need confirmation of the stress exams cause to teenagers, have a look at a person with diabetes exam glucose readings. Most exam times, TD gets sick.  This week was no different.  She has been running a temperature, is sleeping badly, and feeling excessively tired.  High glucose numbers can do that to a person.

Hyperglycaemia (too much sugar in the blood) shows itself in blurry eyesight, difficulty in concentrating, tiredness, apathy and irritable behaviour. All of this adds up to stressful exam periods, and of course, the stress causes the glucose levels to rise and so the loop closes.  Tight glucose control is even more important in stressful times so that things don't spiral out of control.

So, in the study breaks, we watch mindless TV shows, go for walks, and TD reads thick books.  She is currently reading the  Magnus Chase series by Rick Riordan.  It uses Norse mythology as a backdrop for page turning adventures of the heroines and warriors.  When we were chatting yesterday, TD used Warrior as her Word Of The Day.  But I misheard - at first I thought she had said "Worrier."

And all of a sudden I had a moment of clarity:  TD is the Warrior, fighting and winning the diabetes battle, and I am the Worrier, the person who is concerned about things going pear shaped.  And that is how it should be - my job is to keep a safe environment for TD to live her life, and her job is to be the heroine in her own story.

Hyperglycaemia is often more difficult to detect than hypoglycaemia.  There is no shaking or paleness.  And the symptoms of hyper all too often look the same as the symptoms of being a teenager. (!)  Water helps to wash the glucose out of the system, and if needed, TD injects some insulin.  It is a constant balancing act to make sure the numbers are neither too high nor too low.

 

I hope whatever examinations or tests or stresses you are facing at the moment are manageable.  I hope your life's balancing act is holding steady. When things get a bit unbalanced around here, I remind myself to keep looking forward, chin up and to always have a safety net! Worriers are warriors too!

Lowdown on reading

Books play a large part in my family's life.  We have distinctive, but overlapping tastes in literature.  I, for example, don't much like science fiction and fantasy (with a few exceptions).  Our son loves both these genres.  I favour modern fiction, and lately, biographies and recent history.  Andrew likes non fiction, a good crime novel and science fiction.  TD reads most things, voraciously and repeatedly!  Each time she rereads a favourite book, she cries at the sad bits, flaps her hands in excitement (I am told it is called "fangirling") at the soppy bits, and leaves the scary parts to read in daylight hours.  Often she walks beside the character right until the last sentence.

None of us can imagine a bookless environment.

Everyone, I think, goes through times in their lives when reading is more difficult.  It usually has to do with our focus not being able to enjoy fictional worlds, because reality is too imposing or serious.  Sometimes my eyes become mirrors and the images of the words bounce off my eyeballs without being comprehended.  I might as well be reading a foreign script.

This is, I imagine, how it feels to try to read when your blood sugars are low.  Your brain hasn't the energy to interpret the squiggles into words, and words into meaning.  Lows are serious stuff .  Hypoglycaemia (the medical term for glucose lows) has a long list of symptoms, including tearfulness, poor concentration, tiredness, confusion and dizziness.  Everyone is different:  TD's lows often make her giggly and always make her shake badly and go very pale.  Research has shown that, although the glucose number should get back to the normal range within 15 minutes if the low is treated properly, the effects of a low last about 60 to 90 minutes.

TD copes well with lows.  Best case scenario is when she can feel herself dipping and can prevent the low from taking hold.  But this isn't always possible, especially at school.  TD is an excellent student - she is intelligent, conscientious and attentive.  (Also, all her reading means she has an excellent general knowledge and robust vocabulary for debating all those issues she is so passionate about...).  Sometimes I wonder if her educators are aware of the effects of her blood sugars on her day.  A test, for example, written shortly after the low is not going to go as well as one would if her blood glucose was in the normal range.  She would never suggest diminished capacity as an excuse for a less than top grade. But I can imagine that when, at school  the world starts floating past you, words slip off a page and meanings become vague, it would be a good time to show some self compassion.  I admire her so much for taking this all in her stride.

Reading allows me to experience the world in larger dimensions.  It offers me the chance to learn, to relax, to marvel and to explore. Good books are like guides through life's journey.  Uninspiring books are useful too - none of our furniture wobbles.

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.