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 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.

Load Shedding

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

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

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

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

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

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

 

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

 

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

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

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

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

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

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.

Mens sana in Corpore sano

There is no denying it - exercise can be the elixir of health and well being.  If only it wasn't also such hard work.  TD has been doing 5km Park Runs for the past 5 weeks, and I joined in for the first time last Saturday.  The good bits were a sense of accomplishment, seeing a huge snake watching us from the long grass next to the path, and starting the weekend on an endorphin high.  The other bits include being amused at the fast runners who eclipsed me before I had rounded the second corner, and the feeling of old age that hit my leg muscles several hours later.  I celebrated with a long afternoon snooze.

All the research points to the same thing:  Exercise is as good for the mind as it is for the body.  Whilst running round the common is an unusual activity for me, I am known to take gentler strolls around my neighborhood on a more regular basis.  I like looking at the gardens, and planning the week or just zoning out completely.

A beautiful setting for a Park run/walk

Sport is compulsory at TD's school, and for good reason.  Not only does sport encourage teamwork and camaraderie, but it also balances out the long hours of desk sitting and information intake.  TD is required to participate two afternoons a week.  She also does archery every Friday, which, although offered by the school, is unfortunately not recognised by the school as an official sport.  I mention this because TD's weeks are very full, and she needs to cut back on some commitments to lower the stress levels.
 
A lot of time is devoted to music - orchestra, senior strings, choir and double bass lessons are all extra mural activities.  There is no day that she has a free afternoon after school. The trouble is, she loves all of these extras and is going to be heartsore to cull one or two.  But it must be done.  Inbetween all of these activities, she needs time to devote to studies and homework.

So this is what I am wondering :  having agreed that sport is beneficial to the youth, can it not be said that cultural activities are just as important and character building?  Orchestras, choirs, painting, clay work, acting are all excellent activities and help produce well rounded people with more to offer the world.  It is my humble opinion that the school system is geared towards the sporty people: two afternoons a week and they are done with extra curricular activities.  Also, the number of sports awards at any prize giving shows an obvious bias to the emphasis placed on physical prowess over cultural activities.

How about leveling the playing field, so to speak.  How about making sure that each learner spends two afternoons a week on sport and two on music or art or drama. I am suggesting the introduction of a  compulsory cultural programme.  At least then all the learners will have the same amount of time to study and do homework, and they will all come out as well rounded individuals.  Or perhaps then the school management will see that overloading all the kids, instead of just some of them, is not good for grades, and some compromises need to be made.  What do you think?

TD's school year has ended, so she has a long holiday to think about what she will decide to cut next year.  She will keep doing the Saturday Park runs.  A healthy mind in a healthy body is not exactly modern science, as it was first penned by the Roman poet Juvenal in the 2nd century CE. How about reversing the logic: Corpore sano in mens sana.  A healthy mind can produce a healthy body.  I guess it is all about balance and a wholistic approach to happiness.

It's National Peanut Butter month

Note to self:  Schedule hair appointment for 14 November 2020.

Not that I am suggesting I won't have a trim in between, but I think I need a definite appointment on that particular day.  The 14th of November, as you well know, has been set aside as World Diabetes Day.  The International Diabetes Federation chose that date - Prince Charles' birthday (oh alright, Mr Banting's birthday too) - to encourage the world to become more aware of, and concerned about, diabetes.

Awareness is always a good thing, especially around preventable and curable diseases.  It warns and encourages people to check various body parts and take the necessary action.  I am most grateful that Andrew's cancer was caught early and treated.  Type 2 diabetes can be prevented and controlled.  But Type 1 can't.  It is an autoimmune disease, and strikes for no known reason, and very quickly too.  All it takes is a few days to go from a carefree 11 year old (in TD's case) to a insulin-dependent-for-ever PWD (Person with diabetes). Just this week and not for the first time, someone benignly told TD to "get better soon."  It doesn't work like that - the diabetes club offers life long memberships only.

There was a gathering of mothers of T1 kids this Thursday, because that can be a kind of club too.  Shared experiences can make us stronger.  Community can be less lonely.  Connectivity can be helpful.  I didn't go.  TD was home studying for exams, and stress overwhelmed her at about the time I was going to set off for the tea.

A beautiful and calm place to visualize

Instead we went for a walk, did some breathing exercises, visualized her happy place, and got back on track.  I am grateful I was there when she needed me.

So, back to World Diabetes Day and my hair appointment.  I am thinking that next diabetes day I will do something that is both ordinary and nourishing: a hair cut fits the bill.  It will be a nod to myself that life goes on regardless of mothering diabetes, but sometimes it is lovely to take time out to let someone pamper you.

 These days there seems to be a month for everything.  November alone celebrates, according to one website,

#Aviation history month
#International drum month
#Caregivers appreciation month
#Diabetes awareness month
#Model railroad month
#Novel writing month
#Peanut butter lovers month
#Jewelry month
#Sleep comfort month
#National Grumpy month


It's all a bit much.  I guess we can pick and choose which to celebrate.  But it makes me uncomfortable to have to celebrate T1 as it is unpreventable and incurable.

Of course, the above list is incomplete.  It fails to mention that it is also MOVEMBER, to bring awareness and support for men dealing with testicular and prostate cancer, suicide and mental health issues.  That means Andrew is cultivating his hairy upper lip look.  This year he is going for the handlebar moustache. Sigh.

But if even one person is helped by all these awareness campaigns, they will have served their purpose.

Note to self:  Schedule all my own health checkups early in the new year.  And don't forget to book Bronwyn for 14 November.

Note to reader:  I made up the National Grumpy Month.  It just fitted my mood.

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

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

Finding water

Water is a great restorer of balance. My rather whacky theory is that since we, as humans, are 60 per cent water in our body, the best remedy for relaxation is to float, listen and surround ourselves in that life sustaining  substance to balance the outer and inner environments.  So, being the mid year school break, TD and I went in search of the seaside. This is the second Mom/Daughter trip we have taken, and I regard these short breaks as a huge privilege, a time to relax and to catch up.  Above all else we just have fun.  Besides, Andrew had a business trip to Taiwan, and R is in the UK, so we wanted to explore a bit too. We didn't go far: Hermanus is about a two hour leisurely drive from home.

There was water aplenty!  Everyday we strolled down to the rocky water's edge and walked, or sat on  rocks, and talked and listened.  Mostly we sat and watched the waves roll in and listened to the power of the sea. It stills my thoughts.  TD loves the water as much as I do.   And her love of rocks is even greater.  She clambers over to cliff edges, hops from rock pool to rock pool, and I sit biting my tongue, wanting to yell, "Be careful! Not so far! Don't slip!"  She knows all that, and I need to trust her that she knows her abilities and limits.  She is ,after all, on the brink of adulthood.  More importantly, I don't want to project my fears onto her, and create an unnecessary caution.  When children are little and have not figured out what is safe and what is not, holding their hands while they explore is completely necessary. But TD knows what she is doing and is a competent adventurer. I felt a bit wistful watching my beautiful daughter contemplating life so far away, and also so proud that she was comfortable to do so, and that I am able to let her.

Our fears can be great teachers if we let them.  It shows our vulnerability, our hopes (what we fear losing), our coping mechanisms.  It is not always comfortable facing these fears, and like human teachers, some fears are approachable and we can befriend them, and others demand respect quite justifiably, and one should keep a distance.

I think fears surrounding T1 diabetes have

elements of both types of teachers.  While we were in Hermanus the food/insulin diary got a bit neglected.  This book has been completely in TD's control since January, and sitting on the rocks one day we chatted about whether it was still necessary.  TD suggested it has served its purpose and we can stop.  I think she is right, but some little niggle of fear creeps in that we may lose control if we have no record of insulin dosages and food and activities.  But, with the wisdom of youth, TD reminded me we can always start again if numbers go pear shaped.  That is a fear for me to befriend.

The fear I respect- and justifiably so- regarding diabetes, is its vicious unpredictability.  Testing every few hours is a non negotiable for me.  This is the other type of fear that keeps us safe.

Hermanus has many other excellent attractions apart from the sea.  We popped into art galleries, craft markets, coffee shops and some historical points of interest.  We indulged in Massages at the Serenity Spa. (A great idea if you are in the area!)  We had a walk and tea with a family friend who was mom's bridesmaid 60 years ago, and felt encircled with threads of history, creativity and compassion. We browsed the local bookshops and soaked up the musty, mindful atmosphere .We ate sandwiches. We bathed. We knitted.  We window shopped. We slept.  We laughed. We sang loudly.

This trip was not only time well spent,

 It also restored balance.

Of course we had tea

sunset contemplation

The Blue Door

I have gone over to the Dark Side.  It has been a gradual journey, and began a few years ago.  First I painted the eaves, then TD's window frame (all the others are varnished wood!) and lately I decided to paint the sliding car gate and smaller side gate that allows access to the property.  I am not sure which experts decide on paint names, but this lot excelled themselves.  I rather like the name  that the Plascon panel chose.  The colour is a dark, sombre blue that darkens significantly when the paint dries.  I finished the second coat on the gate this past weekend and the result is pleasing.

It makes the house stand out a bit.  Painted wood was a complete no-no for me in my youth.  I was all for the natural beauty of the grain  speaking for itself, but as I have got older and more world wise, I embrace the paint.  It covers a multitude of sins, like dents and rotten bits, doesn't show the dirt so much and makes the wood last longer.  And it looks respectable.

 

Covering things up with an additional protective layer is a survival mechanism for most people.  It is neither appropriate nor comfortable to be a completely open book.  I guess we choose which bits of ourselves to show certain people and judge where it is safe to be vulnerable.  So although this blog gives snippets of my experiences - Mothering Diabetes and Living my Life- it is such a partial exposure.  I am writing this because if you have been reading this and feel I am not always hitting the mark, you may be right.  TD has her right to privacy too, and I need to respect that.

So although I protect us with layers of soul paint, the very fact that I do makes us stand out a bit.  That is the paradox of privacy.

It is school holidays and we are enjoying the much needed break.  For various reasons, TD's glucose numbers are looking better.  One of those reasons is TD taking a more thoughtful approach to diabetes.  And she doesn't compromise on the fun. In between the school holiday projects, she is seeing friends, enjoying the warm lie ins on cold mornings and being creative.  It is a good mix.

I mentioned to TD that this post was about the Dark Side, and she thought I should have at least one quote from Star Wars.  So Google and I chose this one, and I suggest, with a few modifications, it could be speaking to anyone with T1!


"There is no escape. Don’t make me destroy you. Luke, you do not yet realize your importance. You have only begun to discover your power. Join me and I will complete your training. With our combined strength, we can end this destructive conflict and bring order to the galaxy.”

– The Empire Strikes Back.

There is no escape from diabetes relentlessness, but with our combined strength we can bring order.

Live long and prosper!  (Oops apparently that is Star Trek. My bad.😂😂 )

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.

Feedback, as promised. And Mothers' Day stuff

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

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

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

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

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

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

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.