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.

Our Road Trip in numbers

Number of nights away: 6

I am not sure how long it takes to really unwind and relax.  Certainly this holiday felt like air rushing into our lungs after a somewhat frenzied and stressful period.  Going away is a good idea, as everything is different and new, and the mind can reset and refocus.

First night was in Swellendam

Number of mountain passes: 27

This may sound like an extraordinary high number, and it is.  This was the holiday of Passes and at times it seemed our whole world was a series a ups and downs.  Well, truthfully, it was.  And is.  If I were to create a diagram of the roads in linear form, the ups and downs would look similar to the graph of TD’s glucose numbers for that week.  Maybe there is even a correlation between high altitudes and high glucose readings.  I will do some research….

Number of glucose highs: 52

That's is almost twice as many highs as passes....and not good.  Long term highs cause damage to the body.  It is extraordinarily hard to keep stable glucose numbers on a travelling holiday.  Consistency is the key to good glucose control, (eating the same number of carbs, exercising the same amount etc so that insulin can be matched).  This road trip, the meals, travelling and excitement all contributed to higher than average levels.  It is a good thing it was just for a week.

Number of tyre changes: 3

Rough roads come with certain possibilities, including tyre damage.  Our first flat was on day 2 in the middle of nowhere (well actually on a single-track dirt road seldom travelled by anyone since the Voortrekkers ).  There were many farm gates to open and close, and TD stood in among a herd of bulls and told us the back right tyre was completely flat.  It was midday, very hot and the road had been long.  But there is no point in getting upset about something that had already happened. Andrew set to changing the tyre.  It was lunchtime, and no destination was in sight.  There was nothing to do but grab the bread and Nutella and jam from the boot, find the grapes and put together a make-shift lunch.  Diabetes is not a patient restaurant patron.  We always travel with food, because you never know….

 

The next tyre change was at the top of the Swartberg Pass.  TD raced off to climb rocks, as she always does when the car stopped long enough for her to jump out.  This time the tyre belonged to a young Belgium couple who looked rather forlorn about their rented car letting them down (literally).  So Andrew changed it for them while they looked on in wonder.  When we saw them off with a cheery wave, we were not that surprised they had burst a tyre, as they were driving way too fast and recklessly.  We assume they made it to Prince Albert safely.

TD disappeared to climb rocks...

The third tyre change was outside Carlitzdorp on the way home……

But that wasn’t the end of car troubles.  My sister was travelling with her family and the dog to their holiday when the clutch packed in.  Luckily we were in the area.  Cars can be needy machines.

Number of pairs of jeans worn by TD: 1

I woefully underpacked in my rush to get away.  TD did much better, and had an outfit for every occasion.  She had smart striped trousers for our restaurant outings, dungarees for dungarees days, but she chose - and it became a joke- from day 3 onwards - to wear her black jeans for at least some part of every day.  They were more like gray jeans by the time we got home....

Number of hours spent with wobbly legs: 2

A magnificent complete stack (when the stalactites and stalagmites touch)

During supper at a lovely restaurant, Nostalgia, in Oudshoorn, we were chatting about this road trip and plans for the rest of the week.  We had already done so many exciting things (the rest of this blog refers). That very day, we had been to the Cango caves – a magnificent 4km of geological wonder in the Swartberg mountains.   En route to the caves we saw a zip line adventure, and over supper, by candlelight because of the romance of load shedding, it seemed like a really good idea to give it a go.  And being the decisive people that we are, Andrew went online and booked right then and there.  So that gave me the whole night to fret about ziplining. The next day I was unsure if I would hold my nerve and actually do it. As we set off back to the Cango caves   TD and Andrew were both kind, encouraging and happy to let me work this out for myself.  And because of that, I found myself suited up and listening to the safety instructions.  What a rush.  The middle bit (i.e once you have let go of terra firma, and before you see the wall it looks you will slam into…) was an amazing, wonderful mid air feeling of freedom.  But I felt my legs shaking uncontrollably.  And they stayed that way for a good two hours, even with some medicinal carrot cake and tea.  The body has its own agenda, and we should respect that.

Highest Glucose reading: 22.2

TDs body’s reaction to the adrenalin rush of ziplining, was to release glucose into the blood stream.  This caused a soaring high of 22.2.   Diabetes can be a really good educator as to the effect of stress/excitement/strain on the body, in that the numbers are right there for the reading. My legs wobbled, her glucose soared. Andrew was unscathed.

Number of eccentric locals:1

One of the pleasures of travelling is meeting people on their home turf.  Our second flat tyre happened 11 kilometers outside Calitzdorp, and just outside an art studio on a small holding.  We were seasoned experts at the whole bust tyre things, so TD and I efficiently unpacked the suitcases from the boot, extracted the spare tyre and rolled it to Andrew who was winching up the car. We were parked on a dust road next to a rustic, wire covered wall.  The wire was Art, recycled from scrap.  The wall had a couple of pithy sayings on it.  One said "Look how far I have come in life to realize what is wrong with me.  Thanks to all the people who have helped" .  It made me sad that someone should consider themselves damaged, even if they were grateful to friends for helping them.  Just then, along came a man in a straw hat and his dog.  As his dog left his welcome scent on the wheel that Andrew was working on, and after this stranger had kindly offered us coffee, I asked him what the writing on the wall meant.  But he turned the question back on me and asked for my interpretation.  I sensitively and thoughtfully told him that it dismayed me that he thought he was damaged goods.  Boy, had I got it wrong!! It was, he said, a sarcastic, contemptuous comment to those people who find fault with others. Umm.  Quirky indeed.  And as he was not offended by my very wrong reading of his sign, he gallantly offered to show us his gallows. We followed him into his property (through a gate with the sign “Please ring the bell to avoid being mistaken for an intruder and shot.")  And there next to a gorgeous lake, in a beautiful mountain valley was what he described as his folly – a real gallows.  It was macabre and rather unsettling. And memorable. 

Number of memories: too many to count...

I haven't even started telling you about the Macadamia nut farm we stayed on, or how the frogs sat in the roses at Swellendam, or the crocheted tree decorations in Oudtshoon, or our geocaching adventures, or the wonderful waterfall we found.......

We breathed in deeply, sank into the beauty of the land and refreshed our souls.

 .

  

A Sharp Decline

We have just been to Hel and back.  There is only one way in – a treacherous, seemingly never-ending, winding road with dangerous corners and ledges that are too close for comfort, and there is only one way out – returning up that self same dangerous route.

We journeyed there for a few reasons.  The scenery was, apparently, breathtakingly beautiful and the destination promised to be an oasis of tranquillity.  We were lured with images of complete sanctity, and of a challenge to travel a road fuelled by adrenalin.

The road to De Hel is only 37 km long.  There is a sign post at the start informing travellers that the route will take over 2 hours to complete. 37 km – that seemed doable.  The road is a rough stone path with a river or two to cross.  We lurched from side to side, inching forward for what seemed forever.  Just as we hopefully crested another pass, hoping to see the river bed, more mountain ranges and winding roads snatched all hope that the journey would ever end.  It did of course, after many false hopes and some despair.

The final pass, called Eland’s Pass, was the most harrowing (and breathtaking) of all.  Sheer cliff faces with hairpin bends made for a rapid descent and a sharp decline.  At this point we were grateful not to meet any other vehicles – someone would have to give way, and there was no place to go.

We stayed in the valley overnight at a Cape Nature cottage.  It was a further 10 kilometres into the reserve, but the end was in sight.  A handful of cottages have been restored sympathetically to their 1800s construction.  It is hard to believe anyone would choose to live there (a couple of families still do).

Cape Nature had left a few books in the living area of the cottage.  One was the visitors’ book, which warned guests about the danger of baboons invading the house if they smell food.  Another was a coffee table type book that explored the Karoo region.  The page about De Hel said something like:- If you have the time to go to De Hel, rather use that time more wisely and go somewhere else!!!

The trek out of the valley was less daunting.  We left behind the cries of the baboons, the arguments the other family staying near us had in loud voices, and the desolate environment.  We were familiar with the route and could look forward to a village stayover that evening in a more comfortable place.

The whole adventure is a metaphor for me.  The road into dark places is uncomfortable and dangerous.  There is no warm welcome at the bottom, and the only way out is to travel back along the same track, clinging on to familiar markers and hope of gentler place to stay when we emerge.

The best, of course, is to take the guide book’s advice and use the time more wisely by going somewhere else, but that is not always possible.  Use the hiking rules if you find yourself embarking on this journey – never ever travel alone, always tell a friend where you are going, keep three points of contact with the ground at all times, and take some warm clothing. 

Winding road down into De Hel valley

I am glad I have seen De Hel.  We can tick it off the bucket list.  It was not kind to glucose numbers (which may have been elevated to start with because of a zip line adventure at the Cango Caves earlier that day…..).But we took some photos of the stunningly beautiful nature and have lived to tell the tale.

In the next blog I will tell you all the wonderful things we did on this road trip.  I just had to get this out of my system first.......!

TD's Birthday Bash

TD turned 16 in the middle of March.  And how grown up she is! As we always do, we asked her to decide the theme for her party, and this year she chose (and which 16 year old wouldn't) PIRATES.  She felt she had missed out on this theme when she was 6, so 16 was a good time to catch up.

This presented a bit of a challenge. Sixteen year olds require a little more than the usual sweet treasure hunt in the back garden and cardboard swords and parrots and rainbow jelly.  All party planning starts with a good breakfast:  Andrew and I choose a cafe, take reams of paper and a couple of pencils and plot out possible party activities.  Ideas tend to start on the grand scale, and thoughts of building a garden size Pirate ship, of firing cannons with real gunpowder, and walking the plank all seemed like good ideas.

Google disagreed.  Apparently gun powder is dangerous and not recommended for home use.  Giant ships take a lot of wood and a long time to build. Walking the plank may not seem like fun to young pirates.  We needed a second breakfast.

Andrew building the ship late at night....

We raced up to party day, fitting in family commitments, hectic work schedules and all the party prep.  But by 6pm on Friday, all was set and the Jolly Roger flags were hoisted.  TD has delightful friends (and a large number of them.)  They all entered into the spirit of the Great Piratical Rumbustification (thanks Margaret Mahy for a fabulous children's book with that title) with great enthusiasm.  We did shoot cannon (tennis) balls at a 2D Pirate ship.  The cannons were spring loaded, so no novice pirates were harmed in the shooting of them.

The main activity for the evening was making treasure chests.  This required a fair amount of preparation and huge dollops of bravery on our part.  Twenty five teenagers wielding hammers, aiming at small nails, using superglue, grinding off sharp nail points proved to be a loud festive occasion - a true Birthday Bash.  The results were astounding.  The treasure chests looked great, but that is not what I am referring to.  The result was a group of 16 year olds co-operating with each other, chatting as they worked, engaged in the moment and being creative.  The astounding result was a celebration of TD with a symphony of hammering.

Andrew and I needed more hands on deck for this activity.  It takes really great friends to arrive on a Friday evening, who don't mind crouching on the dining room floor and a lot of noise. They helped the learner pirates with the basics of carpentry - like which way round a nail goes, and how to remove a wonky tack, with making sure everyone got the right pieces at the right time, and with serving the pudding and answering the queries when our hands are full.  Me Hearties Kathleen, Natalie and Paul ye be fine buccaneers - thank you!

The treasure chest I made may look empty at the moment, but really it is filled with happiness and unseen treasures of thankfulness that we could celebrate TDs 16th birthday.

And diabetes?  It was there, but just for the evening we told it to Walk the Plank.


PS I realise that some of you may be a bit disappointed that diabetes is not the main focus of all my posts.  There is a reason for that.  But if you are looking for more information and some excellent blogs, please have a look at https://blog.feedspot.com/diabetes_blogs/

The Rabbit under the bed

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

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

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

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

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

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

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

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

Adulting

Well, there went January.  All of a sudden the year has truly and properly started.  TD's annual school band camp has come and gone, and she handles these times away with growing confidence.  I am getting a bit better too, and once she and I had set out a plan (SMS her glucose number to us at 6.30am, 9pm and 1.30am...) I felt, if not completely confident, more reassured that the weekend would be ok.

The view from our stoep at Wellington

Andrew and I decamped nearby in Wellington and caught up with our reading, chatting, knitting and relaxing, spending long lazy hours near the pool or admiring the calm surrounding. It was just what we needed. Especially the chatting.

Energy is still in short supply here, and on Monday the T-shirt slogan that became popular a few years ago, suddenly made sense :  "I can't Adult today." When I first saw it, I had to ask the kids what it meant and they patiently explained that the youth of today are quite happy to use nouns as verbs. I find a lot of grammar usage strange these days.  But it all made sense on Monday :  I could do with a patch where I don't have to shoulder quite so many responsibilities, where I can doodle pictures, play in the garden, nap in the afternoon and have frank discussions with other children about bugs and whose cat has the louder purr.

TD's year has started with gusto - her extramurals keep her busy everyday.  She is taking the academic year with the seriousness that grade 10 demands, and she is handling it all with grace and wonky sugar levels.  There are so many factors that affect her glucose number - tiredness and stress being two of the major ones.  But this is life -warts and all, so everyday we try to balance the scales of insulin and glucose.  Some days we triumph more than others.

This week the new Gucci campaign was launched.  It is called the Future is Fluid, and it features youngsters from around the world who are hoping to create a more tolerant society, particularly around gender issues.  If you know who you are looking for, you may spot TD in the background.
Here is a link: https://www.youtube.com/watch?v=nFUvLNL7E8Q.   I am beyond proud of TD and her desire to be part of a better world.

So I thought I would like to offer my campaign for a better world too.  I have decided that on those days that I "can't Adult"  I am going to change the definition of what it means to be an adult.

Andrew getting into the swing of Adulting

Who says care-free doodling, playing, napping and frank discussions are only for children.  I know I will be able to handle the hard stuff a whole lot better if I spend more time doing the playful stuff.  Keen to join me? - I am happy to share the box of crayons with you, and while we are colouring in outside the lines we can chat about the serious business of being an adult.  Or bugs and cats if you prefer!

Odds and Ends

Today is one of those odd days, after the festivities have ended,  the new year hasn't quite begun and we have said another goodbye to R after his short Christmas holiday. Things feel a bit hollow and tired.  The tired bit may well be because we packed a lot into our time together as a family.  We went to a couple of shows, a movie, an archery day, ate far too much, shared time and laughter with family and friends and generally feasted well.  The nagging sadness of not having Mom around to share all this is hard to get used to.

There are other moments of thoughtfulness during this traditionally "happy season".  TD's T1 diagnosis was 4 years ago, just before Christmas on the 22 December.  Each year it seems to stop me short, both in gratitude that she is OK, and sadness that she has to deal with diabetes forever.  This year on the 22 December we were at the theatre, watching the most magical musical - Matilda.  It is a wonderful production (do yourself a favour and get tickets if you can !!)  Based on the Roald Dahl story, the young Matilda is enveloped in love and support by her teacher, Jenny Honey.  One of Miss Honey's songs is about having the courage to face up to people and situations that are difficult and unpalatable (She sings "Just knock on the door, Jenny" when she needs to confront the head, Ms Trunchbull, and is too scared to enter the office.)  I think that might be a good motto to start the new year with - just knock on the door.  It's a start, and often what's behind the door is not as bad as the anticipation of setting things in motion.

I think this is how TD feels about the CGM.  She has been wearing the Continuous Glucose Monitor for three weeks now.  The sensors last two weeks each, so although the endocrinologist showed us how to "click" the sensor into her the first time, the switch over was a little nerve wracking.  But it really is quite easy.  It comes in a kit with a sort of stamp or punch which pushes the filament into the interstitial fluid.  It sits on her upper arm, and -here's the best bit- it needs no calibration, so TD has not had to do a finger prick blood glucose test in three weeks.  That alone feels like a huge liberation.  She holds a reader up to the sensor and immediately can see not only her current glucose level, but also the patterns emerging from all the data AND the reader indicates if her sugars are going up, down (or are stable) and how quickly.  Seeing the trends is the big plus so that we can work out what works best for TD.  This is a door I am glad we knocked on.

The Libre Freestyle CGM in action!

So the year ends, and for me it has been an odd one.  The good bit about feeling that things are a bit hollow at the moment, is the potential to fill that hollow gap with whatever we choose.  I think making happy memories makes the most sense - everything else is fleeting and transient.

And with philosophical thought I will end my odd year and wish you all a very happy, memory creating 2019.