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.

 

 

 

 

 

"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

 

 

 

 

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.

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.

Thursday 5 September - A day for change

It's been an Elgar sort of week for me.**  Today TD, Andrew and I are dressed in black, along with thousands of South Africans who have had enough of the gender based violence that is destroying the fabric of every day life. It has been a devastating week with daily reports of women and girls being raped, killed and kidnapped.  A heaviness settled over me that even Elgar could not dissipate.

TD's school responded to this tide of anger and emotion by allowing the pupils a day of silent protest yesterday, and by allowing the school community to protest on Main Road outside the school today.  Yesterday TD penned large black Xs on both hands to show people that she had chosen not to speak;  the silence was to represent the many voices of victims who have been silenced by force.  Today Andrew and I joined in the public protests - he before school and I during lunch hour.  Today was anything but silent.  The air was filled with slogans like "Enough is enough" , "No means no".  Cars hooted in affirmation of the protest.  The teenagers made sure that they were both seen and heard.  It was empowering to be part of the group, and quite healing to hear the anger and determination of the upcoming generation.  Perhaps, at last, this group of young adults will be the power of change we all need.

Today also happened to be the day that TD was scheduled to speak in front of her grade in the final round of a public speaking competition. She had chosen to speak about Athos - the Greek monastic island which prohibits all female beings (except cats, insects and birds) from stepping on this sacred ground.  It is well worth a quick Wikki read if you are interested in this bizarre sense of entitlement and superiority of men that is entrenched and policed.  How apt that she was dressed in black whilst delivering this speech.  And she used the opportunity to reinforce the need for gender attitude changes that are so long overdue. She may have been preaching to the converted but sexism is so entrenched in society that even the highest level of government thoughtlessly told women to stop letting men abuse them, instead of admitting that that abuse by men is the real problem.

TD is a warrior.  Discrimination, language use, respectful pronouns, are some of the issues she champions.  I admire her for this.  It gives me hope that things don't have to stay the same.  She champions the T1 cause too, answering questions on her Instagram account from people who just want to know more about how she feels about living with diabetes, or how she got sick, or her everyday routines for keeping alive.  In between all this she has had a horrible few glucose weeks - the graph of glucose numbers looks like a theme park hell-ride. She had to be put on a drip a couple of weeks ago, she has had to have a  three day restricted diet to try to figure out what is going on.  It has been scary and exhausting and draining.   And yet, she stands up and fights for a better world.

Perhaps the time for silence is over.  We need new voices to fight for humanity - loudly, passionately, coherently, persistently.   Silence is passive.  Let's actively seek to fight to stop male on female violence.  No means No.  Enough is Enough. Leave our daughters alone.

**   From my blog in April 2018   "Elgar's music - particularly his cello concerto (in E minor, opus 85) speaks to me in a deeply profound way.  The tempo and mood resonate with something in the tension I feel, and externalizes it for me.  And once it is out, it can dissipate and leave me calmer."

Snow White and the 7 Diabetic Dwarfs

TD recently wrote a play about the damaged characters in the fairy tales that we tell our children:  Pinocchio the compulsive liar, Goldilocks with her sense of entitlement, Rumpelstiltskin who has anger management issues...and a few more.  It had a clever setting - a group therapy session - and a good take-home message:  should we still be telling very young children about these dubious characters, or should we rather affirm good morals of real life heroes?

She did not include Snow White as one of her characters, but I think the story deserves some of our attention.  How about Snow White and the Seven Diabetic Dwarfs.

They are, in no particular order:

Sleepy:  A character that needs no introduction to any one in this day and age.  Life is frantic, full of things to do, people to see, YouTube videos to watch... Who can honestly say they consistently get their recommended 8 hours of shut eye? People with T1, and their families, often get less sleep than most - blood sugars need to be tested during the night.  It is easier now that TD wears the CGM (Continuous Glucose Monitor) because at 2am all I have to do is hold the sensor to her arm and check she is "in the zone" (see previous post), correct if low, ignore if a little high, and waddle back to bed to sleep a bit more.  Before the CGM days, TD had to wake up, prick her finger, do the blood test and then proceed with the next steps. CGM for the win!

Grumpy:  Following straight on from Sleepy, we have Grumpy.  It can be hard to function optimally on disturbed sleep, and grumpiness is often a by product of tiredness. 

Dopey:  This is another effect that Sleepy has on us. If it has been a long night, I sometimes walk round in a fug of forgetfulness. I know there is stuff to remember, but I just can't figure out what it is I am forgetting.  The extra testing kit?  Buying more Super Cs? Changing the needles on the pens?  Luckily most of that has become habit now, and the things I forget are less important...like where I left my glasses or how many cups of tea I have consumed...

Sneezy:  Do you also sneeze when you are tired?  It seems to be quite common.  TD takes Allergex nightly to alleviate the symptons....if she forgets, her eyes water, her throat itches and she sneezes.

Bashful:  There are only a few situations where TD prefers not to inject insulin in public spaces.  Mostly she has this Bashful thing under control.  Of course, dresses, dungarees and other clothing that make injecting into the stomach for fast acting insulin impossible, are a problem, and TD excuses herself to inject.  (Never inject through clothing, in case micro fibres are pushed under the skin, leading to possible infection....)

Doc:  Every T1 family's favourite of the Dwarfs.  It is so important to have a good medical team to partner with.  TD has great people on her help list : the endocrinologist is great, the GP is wonderful and most other medical practitioners are kind and understanding.  Quite frankly, if they are not, it is time to move on.  Trust is a huge Doc issue.  We have been very fortunate in the people who help TD.

Happy: Sometimes the challenges are overwhelming, but it is important to allow ourselves to be Happy.  Not all the time, obviously.  Adversity is a great teacher, but happiness is a state that I need around me.  I am happy to be able to share my life with the people I love.  I am not happy that TD has diabetes, but I am happy that she is TD, and that seems to include diabetes, so that is just how we roll.

Fairy tales are flawed.  Snow White is not a particularly positive role model for children today.  I reread the story to refresh the details in my mind, and the whole beauty fixation/role of females/ being saved by a handsome prince  sticks in the throat a lot.  But, seeing as we are all flawed too, perhaps it is important to retell these tales to our children and embrace the notion of happy ever after.  Stories give us a chance to explore villains and heroes, right and wrong, real and fantastic.  The 7 dwarfs are an odd bunch, but rather relatable don't you think!

The Seven Diabetic Dwarfs

In the Zone

When I am "In the Zone", I am energetic, comfortable, creative and functioning well.  At least, that is what it means to me.  Often that means music - anything from loud, upbeat, pounding stuff to gentle, melodic, soothing sounds - depending on what type of zone I am in-, a mug of tea in hand, a head full of ideas and something practical on the go.  My latest time-eater is making fused glass pendants.  I love the way the glass melts and the colours flow and collide. The glass sits in the microwave kiln for about 40 minutes after firing (no peeking allowed as it disrupts the process!) .  Anticipating the results means that opening the box is always a bit of an occasion. Sometimes the product is disappointing, sometimes the glass needs reworking, and sometimes I am astounded by the beauty of it.  The uncertainty is part of the pleasure.

For other people, being in the zone can be achieved by meditation or yoga or prayer.  I find it quite difficult to switch off my thoughts, so have to practise stillness and mindfulness.  Others, I am told find their zones in coding software, some in playing a musical instrument, some in baking....The list is endless as we are all different and need to find our optimum place to be environmentally, physically and emotionally.

For TD, being "In the Zone" has an additional meaning.  As a teenager with Type 1 diabetes, being in the zone means her glucose readings are range of 4.5 - 10.  Ideally, the range should be narrower - about 4 - 7, but teenagers have so much to contend with that the wider ranger is a more realistic goal.  And, believe you me, not one that is easily achieved.  TD's glucose numbers are often in the teens.

I know how frustrating it can be when I want to work on a project and realize I am just not in the right space.  Usually my best course of action is to leave whatever it is I wanted to do, and come back to it at another time.

TD doesn't have that luxury.  Her life has to go on whether she is in the optimal zone or not. Elevated sugar levels not only cause long term damage to eyes, kidneys, nerve endings to name a few, but also cause immediate detrimental effects like headaches, blurred vision, nausea, muddled thinking and muscle weakness. 

She has learnt to cope.  Obviously the goal is to keep the glucose numbers on the straight and narrow.  It's complicated though.  Not all carbs are created equal, and not only does TD have to determine how many carbs are in any given food stuff, but also how quickly or slowly those carbs are released into the blood stream.  She also has to factor in her emotional levels, her physical tiredness, what stresses she will be facing (because adrenalin releases sugar into her system,) what day of the week it is, and whether or not yellow is her favourite colour.  You get the picture.  Her relationship with glucose is, shall we say, Complicated.

Being in the zone is a wonderful place to be.  It's worth pursuing even when it seems quite a distant hope.  I don't expect to live permanently in a creative bubble of happiness, but when I am there, I can see beyond the mundane.  TD's zones are writing, music and drawing.  They are places of connection, both with oneself and with others.  That is why they are important and worth pursuing : connectivity makes us human.  Like other Superheroes, TD has extra powers in the time/space continuum zone - she may look like a usual human, but really her superhero strengths are courage, tenacity and kindness.

Some of the latest pendant attempts

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?

The Power of Friends

Something magical happened when TD was first diagnosed.  Her school friends enfolded her and encircled her in protection and love.  It has been a privilege to watch this process.  Sometimes the encircling has been quite literal - if she needed privacy for testing or injecting, or if she needed support whilst having a low, they would form a protective group around her.  Sometimes the barrier was an emotional one of kindness between her and the harsh realities of diabetes.  Each individual brought something unique and powerful to the friendship - quirkiness (highly valued here!), love, humour, hugs, straight-talking, listening hearts, and a sense of normality.  Friendship can be powerful.

They are a funny group too.  Once, when TD was being questioned yet again why she carries a cooler bag around all the time (it's for her insulin), these 11 year old girls answered on TD's behalf that it was her make up bag, because she needed to touch up her look during the day.  This in a rather strict school environment where dress is uniform and make-up, obviously, forbidden.  Their humour is catching.  Now when we play "Who has the saddest story to earn the last brownie"  (like in the movie Notting Hill) TD usually wins with, "I am diabetic and single."  Well, yes, that is hard to beat, so with an insulin injection of 2 units, she gets the last brownie.

There is nothing funny about T1 diabetes.  Humour is a coping strategy which works well to sometimes lighten the prospect of a lifelong disease.  It can be a lonely business being diabetic.  I am so glad TD has so many good people in her life.

Tech and the teenager

TD's (Teenage Daughter if you haven't been introduced yet) wonderful endocrinologist wanted more detailed analysis of TD's glucose levels and fitted a CGM (Continuous Glucose Monitor) on her for ten days.  TD has strong opinions about many things including, but not limited to, politics, music, sexism, gender labels, religion and CGMs.  She strongly disliked wearing the device and tried to explain why to me.  I think I got the gist of it.  She says it feels as though it makes her less human, more machine.  It has something to do with technology ruling her life.  (This from a teenager with a hearty interest in Pintrest, Whatsapp and YouTube on a tablet and smartphone....)  But she agreed to wear the device.  Strangely, far from reassuring me that her glucose levels were being constantly monitored, I felt more anxious: FOMO in the World of Diabetes.  Perhaps I felt the need to constantly check the device because it was a new and novel tech for us.  It makes so much sense to have a CGM, and probably, an insulin pump.  For some people, this is the best way of dealing with diabetes. Some people prefer manual injections and testing.  It takes economic privilege to try all the new technology available - none of it comes cheap, and medical aids seem more than a bit reluctant to cough up.  (Unless your experience is different - I would love to hear about it...)

I think TD might come round to the new neater, easier to use CGM that the endo has suggested.  I am hoping so, to give her fingertips a chance to recover from the ten or so tests she currently does daily.  TD has set some rules - she wants to have control of the reader, so that she can see what her body is doing before others know.  It is the same rule we apply to manual testing, and makes complete sense to me.  TD needs to be in control of her own health, and this small rule puts boundaries in place :  It is her body and her glucose number.  Respect, TD.