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.

 

 

 

 

 

 

 

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 art of masking

We are all learning new skills from this Corona virus.  South Africa has just shifted from level 5 to level 4 lock down, and it is now mandatory to wear a face mask .  So, our challenge is to make suitable, comfortable, effective masks, and to learn the art of wearing them.

The making was not too difficult.  There are plenty of instructions on YouTube, and being the hoarder that I am, I just happened to have quilting cotton, the lining filter material, and a softer cotton for comfort on the skin side.  And some elastic. (Should the virus require us to make anything out of old buttons, different length zips, beads, bits of coloured glass, scraps of ribbon and wool or anything else of that genre, I will be ready too....I really MUST do a clean out sometime soon.)

The wearing of them is where the real skill lies. President Ramaphosa shared the first challenge with the nation (and the world) when he struggled to put his mask on during a live TV screening.

He was gently teased, and, showing off true leadership skills, managed to get the country laughing together with him. The top down approach works best for me.  I put the elastic around my ears, and place the mask over my eyes, and wiggle it down to cover my nose and mouth.  I quite enjoy wearing my mask.  It makes communicating with ones eyes all the more important, or not communicating at all quite acceptable.  It is also a bit like playing the broken telephone game, where words get distorted through the layers, and you have to guess what is being said, or you can pretend to hear whatever you want to hear.  It also, I find, helps me concentrate on mindful breathing.  The in and out are more audible to the self, and I can feel the air going in and out, in and out, slow-it-down- in and lonnng out.

 It is not all a bed of roses though.  Sometimes we need to be heard properly, say, for example when I was collecting TDs meds from the pharmacy. ( I have taken to writing it all down, and shoving the piece of paper on the counter.)  Or sometimes we need to sneeze, and then there is a mask-full of trouble.  The nose drip is a challenge too, as is the unscratchable itch. I am sure as we get more used to wearing these masks we will conquer these challenges.

The challenges I  am struggling with at the moment that can't be adjusted with elastic or practise, are things like the schooling situation.  There have been so many iterations of when the schools will be opened, that nobody knows what is happening.  It is time, maybe, to separate schooling from education.  I am doubting TD will be able to go back to the classroom any time soon.... Diabetes T1 is high risk, as elevated Hblc levels (long term glucose control) seem to play a part in hindering recovery from COVID 19.  Anything above 6.5 is considered risky.  TD's latest level is considerably higher.  But that doesn't mean her education must be compromised.  I think I read somewhere that education is all the bits of the school curricula that you remember 10 years later - the important stuff.  We will have to concentrate on that.  The fact that she is missing the fun aspects of school is very sad indeed, but we choose life.  Giving up concerts and dances and outings is a small price to pay.

Our first masked walk!

As we greet each other through masks, please look deeply into other people's eyes.  People are difficult to read if we can't see smiles or frowns or worried looks, and some people find it hard to ask for help.  And not all masks are made from cloth either - people are often good at hiding what is bothering them.  If you can, support each other, especially those with sad eyes.  And to those with shiny eyes, hiding the tears - risk taking off your mask for a moment and let others know what would help. We are all learning new skills from this Corona virus.

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. 

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.

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

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

Fuzzy lines

Ed Sheeran toured South Africa last month.  TD and friends, being star struck fans, had booked tickets last July to see him live in Cape Town.  She (and Andrew) enjoyed the evening very much.  I mention this only because we had double booked the date.  TD was meant to see her (still wonderful) endocrinologist on the same evening as the concert. Dr M agreed that it would be more difficult for Ed to change his dates to suit TD, so she graciously rescheduled the appointment.

I find some doctors intimidating.  But Dr M is gentle, kind, compassionate and an intuitive listener (as well as being an expert in her field).  Despite this, sometimes my heart feels a bit heavy as we troop into her office.  TD's glucose numbers, as you will have gathered from recent posts, have been on the high side. Visits to the endocrinologist are about every three months, and the Hb1c test (that measures the average glucose levels over a three month period) is used as a benchmark of sorts as to how well the diabetes has been handled in between visits.  At the end of 2018, before the CGM, it was 7.5 - significantly higher than the golden standard of 5.6 to 6.6.  This time it had crept up to 7.9. To be honest I thought it would be higher, but this is still damagingly high.  There is no judgement regarding this number.  I know that. And yet....   And yet I feel I should have done more to help TD with the diabetes control.  Of course, the number is a tool to see how the sugars are being handled and to work out systems to achieve and maintain better control.

Tresiba Insulin pen

Dr M suggested we change the type of long acting insulin.  Not all insulins are made equal, and continuing research is providing better formulations of insulin.  The one the endo suggested is called Tresiba, and it is meant to be the most effective for steadying the glucose line.  It sounded  just like what TD needs.  It is also more tolerant of fuzzy times - it is given only once every 24 hours, and if that stretches to 27 hours that is fine too.

You know what this means!  TD, Andrew and I sat wide eyed and open- mouthed thinking about the possibility of sleeping later than the usual 5.45 am that has been our pattern these past 4 years.  Think of weekends and holidays!  Think of a morning lie in!

Of course, the main reason for changing is that it should help to stabilize TD's glucose numbers.  The roller coaster Ups and Downs impact her everyday life in a way that most people cannot comprehend. Here's hoping Tresiba is a great leveler.

Fuzzy clouds.....because why not!!

I called this post fuzzy lines because another thing our visits to the doctor emphasize is that, although it is definitely TD 's diabetes and her need to handle it, we, as her parents are partners with her in her health and happiness.  So the lines become fuzzy.  Diabetes is part of all our lives.  We have always tried, and continue to try, to give TD as much independence as is safe and as much privacy as is possible.  The boundaries between children and parents are sometimes rather blurry - we want to hold them close and let them fly all at the same time.  Those blurry lines contain so many pixels of infinity, so many shadows of experience.  And the squiggly shape of those fuzzy lines is a complete circle of  love.

I will let you know how the new insulin works.....after my Saturday lie-in.

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

April

It's been a low energy sort of month for me.  One when I have needed Elgar and Chocolate and Sleep. Luckily it was Easter - so chocolate was everywhere in abundance.  Equally luckily it was school holidays, so we could sleep in an extra hour or two.  TD did not overindulge in Easter chocolate - she ate one treat only. Nevertheless her two weekly download of meter readings, which we send off to her endocrinologist, showed a record number of stubborn highs.  Something needed to change.  We upped the morning Lantus (long acting insulin) dose.  We tried to be more carb - clever : difficult over the Holiday Season, but nothing much helped. 

Until it dawned on me.  The problem might be that it wasn't dawning on me!  We were getting up at 7.30am instead of the usual 5.45.  My theory is that this threw out the whole daily schedule - TD was getting her Lantus too late in the morning, and maybe it was pushing all her numbers high.  It's just a theory - what do you think?  Possible? Probable?  It has been a stressed family time too, so maybe That was the cause of elevated sugars?  TD is growing - could that be the reason? Or is it just a fairly random bodily function that is hard to predict and so hard to control?  Who knows.  (Perhaps you do - in which case please share your thoughts!)

I guess what I am saying is that we simply don't know so much and yet somehow things level out.  TD's numbers are back in the usual range this week. (more or less.)  She was tired of being on a glucose high and took control in getting back on the level.  She made extra efforts to look after herself.

Sometimes I have to remember that when we are on a bumpy ride, things will eventually even out.  I also need to remember that this leveling is both a function of time and a conscious effort to take care.  I can't be completely passive, but nor can I stress about the natural cycle of unpredictability of life.

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.

So both TD and I are starting the week on  more level ground.  She is listening to Emo music (21 Pilots, Imagine Dragons and Panic at the Disco! - and no, I haven't heard of any of these groups)  I am listening to the Love Actually soundtrack...

But if you come to visit and hear Elgar blasting out - please bring chocolate.

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!

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.