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.

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.

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.......!

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.

14 November and ice cream

 Mr Banting’s birthday has become International Diabetes Day.  This is, I assume, because of his life saving, Nobel prize winning co-discovery of Insulin and its therapeutic effects (in 1922 in case you are wondering. ) There were online offers to sign a birthday card to the (dead) man in order to break a world record and acknowledge him as the Champion of diabetes, but this kind of showmanship is not my cup of tea.   I would rather raise my cup to  the heroes  who deal daily with the weight of the diabetic diagnosis.

So we didn’t acknowledge World Diabetes day in our household, although I was made aware of it through the forums and a friend who was hosting tea for moms with T1 children.  We did go out for ice cream after supper (a very healthy meal if I say so myself….) in order to Celebrate Life.  Food can be a scary issue with a person with diabetes.  I was thinking yesterday, as I reached for a handful of peanuts and yet another cup of tea, that I can just eat when I feel peckish without wondering what it will do to my glucose levels or if  I need an injection.  It is a freedom I usually take for granted, as most people do.  But really it is a luxury.

It was also  Great Aunt Edna’s birthday yesterday, so we clinked ice cream cones and wished her health and happiness. TD and I chose Strawberry birthday Cake as one of  our flavours in honour of her special day.

While we are in the birthday mood, it was also Prince Charles’ birthday.  It was tempting to go back for seconds to wish his health too, but then I remembered some one else I know who has the same birthday. They would need toasting too! Luckily we decided moderation would be more sensible.  Ice cream eating is an insulin heavy activity, and anyway, more than one helping is difficult to stomach.  There can sometimes be too much of a good thing.

Happy birthday to all the 14 November people.  And Celebrate Life to all the rest of us.

Now serving number P326 at Counter 5.....

I am lucky in that I get lots of time for reflection, people-watching and day- dreaming.  All in queues.  I am a regular at the local pharmacy, as I have to pick up TD’s monthly supplies of insulin, needles, testing strips and allergy medication.  There are usually several other trips during the month to cater for the normal household medical needs and aches and pains. 

 

Government Prescribed Minimum Benefits (PMBs) means that our medical aid is co-erced into paying for TD’s two types of insulin, the glucose testing strips and needles. Strangely, they won’t pay for the Glucagen Hypokit for unconscious lows or ketone strips to test excessive highs, despite the fact that these could prevent hospitalization of TD, which would have a far greater cost to them than the preventative medications and tests.  But who am I to fathom the logic of the corporate insurance giants.

They pay for 200 testing strips a month.  That is usually sufficient, except at times like the past six weeks when the roller coaster of mostly highs has meant TD has needed to test many more times a day, and so she ran out before the refill date.

Medical Aid allows me to pick up stock 4 days before a full calendar month.  So I have learnt how to time my visits to maximise the benefits, I have learnt how to deal with repeat scripts, how long a script is valid, when re-authorisation is likely so that I don’t get caught out and the medicine can’t be issued.  That sort of thing.  I have also learnt to take a small cooler bag with an ice block for the insulins, to keep the cold chain intact.

But mostly I have learnt to be patient.  I go with the thought that everyone – pharmacists, medical aid reps, doctors, moms(!) are all doing their best .  Sometimes there are glitches in the system – medication is not available or they only have partial stock; the system won’t issue without the latest Hb1c confirmation; the pharmacy is having a slow day.  It used to make my heart sink.

So I decided to use the time as my “medicine”, to practise meaningful breathing (try it – deeply and consciously breathing has got me through more than one unhappy day!).  I suppose it is no co-incidence that someone needing medical attention is called a patient.  If Time is a great healer, the pharmacy is nothing short of a miracle centre.

It must be a tough gig dealing with sick people all day, because most of us are not at our social best when feeling under the weather.  So, although I can’t say I look forward to long waits at the pharmacy, I can take a philosophical view, and be grateful that there are life saving drugs and knowledgeable medical people available to help TD and keep her alive.  Sitting in a queue is

really a very small price to pay.

But it is only September....

2017's attempt

 

2016's look

For the past few years, I have approached November with a bit of a sigh.  Andrew has taken on the challenge of Movember – growing a moustache to raise awareness and fundraising for prostate cancer.  The hairy upper lip is not my favourite look on him to be honest, and he hams it up by choosing outrageous styles which he cultivates with great care.  I count the 30 days and tolerate this hirsute project.  But this year, I will not sigh, because this year it is personal.

Andrew was diagnosed with prostate cancer in March.  It has thrown us all a bit, not least him.  I can write about it now, because in July he had surgery to remove the prostate and on Monday we got the good news that he is probably clear.  Sometimes, whilst enduring something awful, I find it easier just to shut up and bottle it all in.  When the crisis is looking less threatening I can articulate how it was – that is just the way I am.  The surgery went well – Andrew’s doctor is one of the few trained and skilled in robotic surgery for the prostatectomy.  So instead of a very long scar down his abdomen, he has five smaller wounds.  He was booked off work for four weeks and – for someone who uses every second of every day –  I was a little surprised and grateful that he slept for most of it. 

It is hard to describe what it feels like to watch a partner fall ill with a dread disease.  Lots of things spring to mind: Like all the dreams and unfulfilled projects that we really should have given more time to: Like what is really important in life and how important balance is;  Like are we practically equipped to deal with illness.

We had a policy – we would tackle whatever was thrown at us together.  So I go with to all the doctor’s and physiotherapist’s appointments, make notes and talk about all the possibilities with him.

There has been a lot of sadness this year, and a lot to cope with. 

This November I will embrace the month of the moustache with much more enthusiasm.  Andrew has been very good about spreading the word to all people who will listen – Men- get your annual PSA level checked.  Take your health seriously.  There is nothing embarrassing about body parts and functions.  Talk about things.

I am very grateful for the skill of the medical community in Cape Town.  Andrew’s next check up is in 6 weeks.  We are hoping the good news continues and we can breathe a little easier.  Both this cancer scare and TD’s diabetes have made me realize we shouldn’t take health for granted.  

Carpe diem, and all that…..

Target practice

Both TD and her brother are keen archers.  Our son has been involved with the ancient sport for the last four years, and TD's high school offers it as an extra mural, so she has been doing it for almost two years.  Often they enthuse to us about the art,  and so last weekend all four of us signed up for the afternoon practice at the Cape Town archery centre.  As Andrew and I were complete novices, we were placed in the group that needed to know everything (including for me, which way up the bow went!).  The other two were put in the group that shot at 20m and didn't need the constant supervision we did.

We are bitten.  It was such an extraordinary experience, and I enjoyed every minute of the two hour lesson.  It turns out Andrew is a bit of a natural, often hitting the yellow centre of the target - and this surprised me because his darts skills are, shall we say, a bit challenged.  I managed to miss the entire target once, landed  arrows on the outer rims a few times and, once I had figured out the skill of the correct posture, managed a few golds. Not bad for a fifty something novice (OK, it was only from 10m, but I was proud of my efforts!)

So if you are looking for something rather unusual to try, I would recommend archery!  Things I will bear in mind next time I go are that it is good to have a firm grasp of the basics - how to hold the bow (they are large - person height!), how to support the arrow in the nock correctly, how quickly to release the arrow once you have aimed.  That sort of thing.  You also need to take into account the surroundings - how many people are aiming at the same butt, the wind, sunlight in eyes,  and finally, especially for me, I need to find my confidence.  And to forgive myself for the occasional complete miss, and to keep trying.  Like all sports, I am sure practice is the key to good results....

...Not unlike diabetes care.  The target that is aimed at is optimum health, and the method is similar: have a firm grasp of the basics - knowledge up on the glucose/insulin relationship, know how best to support TD with all she is dealing with, know when to let go.  And take into account the whole picture - what's blinding us or sending us off direction and make sure we are all on the same page.  And then have the confidence to know that I am doing the very best that I am able to at any particular time.  Things go wrong, target levels are missed, and that's ok.  Keep trying and never give up.

 Aiming at a target is a good idea.  The concentration and focus archery instills, and the discipline it requires are excellent life skills.  Whatever the target is - life balance, happiness, health - the more you practise the easier it becomes.

Marketing magic

TD is a dedicated Harry Potter fan.  She has been "sorted" into the correct house for her personality, (Hufflepuff), and knows her Patronus (animal-spirit) thanks to the online quizzes available to help with these things.  Obviously, she has read all the books, seen the movies and follows the actors' careers.  Emma Watson holds a special place in her heart for her views on feminism.

So it goes without saying that when we were in the UK,  TD was keen to immerse herself in Potterish paraphernalia and places. One can book a tour designed to delight fans by taking them to the set, the Great Hall, Dumbledore's office, Diagon Alley and much much more.  Knowing the market well, the organisers of these tours charge an arm and a leg per person and effectively magic away many pounds from your wallet.  So we decided to do it the DIY way.

Platform 9 and three quarters is a piece of wall cordoned off at Kings Cross Railway station.  There was a long queue of young wizards and muggles waiting to have their photos taken at this particular piece of wall.  We offered to wait for TD if she wanted to join the queue, but she was happy to have her photo taken on the outer side of the cordon and use her time more wisely in the Harry Potter shop situated next door.  We wandered around, examined the expensive merchandise and marvelled at the power of marketing.

On another day we made the pilgrimage to the Oxford Street Primark.  There was a treasure trove of affordable  goodies, and TD splashed out with her carefully hoarded savings.

While I was in Cape Town, the travellers did a road trip to Scotland and stopped at the Harry Potter Bridge.  (Well, in real life it is the Glenfinnan Viaduct near Fort William.)  Andrew, weaving magic of the real kind, had looked up the train timetable, and timed their visit so that they could see the train crossing over the viaduct.  TD was most chuffed.

 I rejoined my family in Cambridge, and that for me  was like entering a magic world.  We were lucky enough to be allowed into Trinity (our son's college) and the magnificent dining hall outranks any film set Hogwarts hall.  Academics, with their gowns flowing behind them, briskly walking on cobbled streets, magically sends one's imagination into another world.  And yet, it is real.  This is how the students at Cambridge live - in a town with ancient, magnificent buildings, narrow cobbled streets, magical book shops and plenty of muggles taking photographs.

Marketing magic is a profitable business.  Every now and then an email pops in my inbox offering a cure for diabetes T1.  These range from ActoBio's cheese producing bacteria to extreme diets to social activities to acupuncture, and they all need elements of magic to work.  Mostly people look at ways of managing the sugar/insulin see saw, and the diet option, acupuncture, social activities are very important for keeping numbers level, but a cure?  Big pharmaceuticals are pouring money in to research.  The same companies that make millions from selling life sustaining insulin are hoping to offer a medicinal cure. There is obviously a mind boggling amount of profit to be made.  So while we wait for science to find a way to kick-start a pancreas into making insulin, I will save my magic for the worlds of Harry Potter and Cambridge, whilst still keeping an open mind about a cure for diabetes.
  

Harry Potter's author, JK Rowling, says it most eloquently: " We do not need magic to change the world, we carry all the power we need inside ourselves already: we have the power to imagine better."

Mindfulness

TD's mid year exams are over!  As with any stressful period, the adrenalin was free flowing and the glucose numbers soared.  And if the exams were stressful, getting the results back  seemed to cause even greater anxiety.  I am inclined to take the long view about examinations - results are only useful in a context.  And that context is both the collective average of all participants and individual circumstances of each person.  TD was delighted with some results, and disappointed with others.  So, a good mix - some encouragement and some challenges. Considering that the symptoms of hyperglycemia are tiredness, poor concentration and blurred vision, and considering TD spent the entire exam period with elevated glucose levels, I think she did fine.  All the studying in the world is rendered less effective if you cannot concentrate. She worked hard, and I am proud of her.

There are a couple of weeks left before the end of term.  Classes have resumed as usual, with a few extras thrown in.  Today the grade 9s were spoken to by a survivor of the Holocaust and tomorrow the class will take the train into town to see the Holocaust museum.  It is a subject that has absorbed TD's attention and interest; so much so, that she forgot to inject her insulin for lunch.  She remembered to test, but - and she does not do this very often - she simply ate without injecting.  I am not sure if it was because her mind was waging war against the horrors of prejudice, or if she is so used to having diabetes that she just went with the flow of eating forgetting the crucial insulin, or if she has too much on the go.  It doesn't really matter - she just forgot.  Her number shot up so high that she had to sit out of sport after school.  And she is still running high.

Mindfulness - being present in the moment- is a necessary skill for anyone with diabetes.  There is a lot of self care that needs to happen.  TD needs to always be aware of what her body is telling her .  When she is low she has what she calls her "stomach feeling."  When she is low, she shakes.  Going high is more difficult for her to be mindful of, and so she has to practice the art of remembering.  She has to be extra mindful of what she eats and the effects of sport and extreme emotions.  Our pancreases do the job of balancing our sugars and insulin.  TD's pancreas no longer does that for her, and so she  needs her  thoughts and memory to compensate.  She is an excellent student of the Self.

Mindfulness is a necessary skill for all of us, and I think it is a life long project.  It is so easy to slip into yesterday's regrets or tomorrow's worries that often we miss the satisfaction of the present. (I love that the word is made up of two Latin words - "Satis" meaning "Enough" and "facere" meaning "to make.") And Enough is all anyone needs.

We are looking forward to the mid year school holidays - we anticipate huge adventures, a lot of laughter and many memory-making moments.  But more about that later....

In the meantime, I wish you all a Satisfactory Now!

Mindfulness on our favourite beach

The force for good

We have had a charming house guest these past few days - one of those people who simply fits in and scatters calmness and compassion.  He is vastly knowledgeable in a wide variety of fields and a born story-teller.  One of his work lines is acting.  A few years ago he played Alfred Nobel in a short piece on the Smithsonian channel.  He looks the part!

Alfred Nobel

Alfred Nobel started his world famous prize to recognise people who add to the collective goodness in the world – those who become a force for good. He did this because his death was greatly exaggerated; so much so that he got to read his own obituary on the front page of the newspaper, and the heading called him the “Merchant of Death.”  (his brother had died, but the papers had got the wrong information.)  He was so horrified that this perception of him would be his lasting legacy that he set about using his huge wealth to create good.

Nobel prize winners are all great and famous, and all have been chosen for their good work in creating a better world – through peace, science, medicine, literature.  Not everyone who helps create peace and a better world gets international recognition though.  Some people don’t even get a nod of encouragement, and I wonder if they even know how important they are,  because every act of kindness creates ripples of goodwill that are far reaching and essential to world cohesion.  Seemingly small acts can breathe life into a difficult day. 

The kind whatsapp messages checking up on us, the people who bring beautiful flowers, the people who listen and hear us, the people who phone and chat, everyone who reminds us that community is strength and peace is a group project – thank you.

I have always been over awed by the butterfly effect: The saying goes that when a butterfly flaps its wings in some part of the world, it influences the greater events on the opposite side of the world.  It is used as a metaphor that a small change in one state determines larger changes in other spheres.  Small acts of kindness influence the whole world.  Never underestimate the power of good.

If you would like to see the clip about Alfred Nobel (it's under four minutes in length and very interesting!) here is a link:

https://www.youtube.com/watch?v=Yz_c4j8NcDI   or type Smithsonian Institute Alfred Nobel into Google.

Maintenance

It is gutter cleaning time!  We have been promised rain next week , and I intend to be ready.  TD had been invited to a weekend away party - much excitement for her, and as usual, a little trepidation for me. We dropped her off at the brave parents' home and had the morning to ourselves.  What better way to spend it than cleaning the gutters!  I am not particularly comfortable up a ladder, but the view from up there is worth the angst.  I felt - um - elevated. And it cleared my head to think about things.  Firstly, sometimes we need to rise above some situations to take a better look at them. From the top of the ladder I could see which gutters were full of leaves and needed to be cleared and which were clean.  And taking a top down look at this weekend  party I could see that my anxiety at TD spending the night far away is just that - MY anxiety.  She is 15, and adulthood is just around the corner.  She is confident about managing her diabetes, and I need to allow her to enjoy her independence. (Although my angst is not unfounded, and I need to cut myself some slack too.)

The second thing I learnt up on my ladder that sometimes we do become overconfident and that can be dangerous too.  I thought that while I was up there I might as well cut off some overhanging branches.  They were just out of reach, so forgetting I was on a ladder, I leant across to grab the offending branch, and felt the ladder wobble sideways.  No harm done - I managed to regain my balance and steady the ladder, but I did realise I had reached too far.  I could have fallen off, and it would have hurt.  Similarly, diabetes needs constant vigilance.  It is not a disease that allows you to forget where you are or to over reach the limits of the support system.  Falling is dangerous and life threatening.  Even if no one is holding the ladder (us for TD's diabetes at the moment) it is important that she explores

her independence safely.

Thirdly, it was oddly satisfying cleaning those gutters and knowing we would be prepared for the winter rains (please please let it be a good wet winter to fill up the dams.)  Routine maintenance is important - whether it is looking after yourself, or making sure that you are ready to face whatever is coming next.  It is worth taking the time to clean the dirt away and start the season with debris free support systems.

Fourthly, I learnt that from above it is easier to see what other chores need to be done - wood work that needs revarnishing, a bench that needs fixing, a bush that needs trimming and a path needs sweeping.  It is good to get different perspectives of how things are doing and what needs to be done next.  It will be good to chat to TD about what we can do next to help her tweak her diabetes management to make life easier for her.

I am looking forward to hearing all about her adventures when she gets home this afternoon.  I am sure she will bubble in in a cloud of excitement and enthusiasm, as usual.   I just have a few hours left to tackle some more of the jobs I saw needed doing yesterday.   But first, it is time for tea.

April

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

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

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

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

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

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

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

TD's party

Young people often get a bad rap.  "Children now love luxury.  They have bad manners, contempt for authority; they show disrespect for elders and love to chatter in place of exercise."  So said Socrates around 400BCE, proving that it is a long held view.  I am always a bit bemused by these judgements of young people, as the youth's behaviour is surely the result of the environment and social skills created by the very same people who are criticising  them.  But there you have it - young people are often seen as self absorbed and under enthusiastic.  So it was with some trepidation that I heard the news that TD had close to 30 teenagers on her party invitation list.  About half I knew, as they had been friends for years - and they are all lovely, confident, caring teens.  About half are newer friends, and as always, it is the unknown that is slightly more daunting. Would the group react well together?  Would they cooperate?  Would they behave like the youth of Socrates' ancient world??

Parties are a big deal in our household.  TD chose Theatre Sports as the theme this year, and we decided to hold it on the last day of term, so that everyone could be in a holiday mood. Theatre tickets had been sent out, the stage was set, the front of house festooned in stage curtains.  Roll on 6pm.

As an initial activity, we had decided to let the party people make wooden frames (teens love wood, nails and hammers...) stretch material over the frames ( they are equally obsessed with staple guns and tacks...), find or create their favourite pithy saying and write it on their posters, and finally decorate the wall art with feathers, beads, fabrics, stickers, or any other creative materials.  They loved it - there was so much hammering and enthusiasm that, out of the blue, we were in the midst of a massive thunder storm. (Not that we can take credit for causing the storm, but the hammering and the thunder were wonderfully in sync.)  We rushed the tables inside and continued the activity.  This is the result:

As you can see the youth of today are obsessed with caring for each other, making people smile, and creating a better world. I love it that this world includes Unicorns and Harry Potter and Gucci and Fun.  The youth have a lot to teach us about the power of enthusiasm.

We played Theatre Sports after this - guessing strange personae, using everyday objects as unusual props, using words to create surprising and amusing scenarios.  There was much laughter, an abundance of happiness and a general good will and cooperation.

It was a good evening.  If you are ever feeling that the world is going to rot, invite a group of teenagers around, ask them what is important to them, get them to play collaborative games, and I am sure you will agree with me, that they are very capable of ushering in a bright, enthusiastic future.

Theatre Sports was an excellent theme for a fifteen year old's birthday party.  Teenagers are very good at inventing and reinventing themselves, until they find a self they are comfortable with.  As a modern sage, Maya Angelou, wrote: "We need to remember that we are created creative and can invent new scenarios as frequently as they are needed."

Good advice to remember when we feel stuck, or too grown up.

Happy birthday TD!

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

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

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

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

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

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

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

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

Telling you how I am feeling

A few thoughts (not grand enough to be called Life Lessons!) I have learnt so far from Mothering Diabetes

1.                Never underestimate how well people can adapt to challenges  One minute TD couldn’t stand the sight of blood, and injections left her quaking in the corner.  The day after diagnosis, she learnt how to do all her own finger prick testing and to inject insulin into her stomach and legs several times a day.  We as parents learnt to cope with a range of fears and horrors that we would wish on no parent whatsoever.

2                  Going to  social occasions can be interesting.  People's reactions to TD"s pricking her finger and injecting insulin vary from the curious to the doubtful.  Kind friends have even offered to eat her chocolate, telling it was not good for her health.

3                   Give each other space to breathe and, at the same time, hold each one close. Trust is a way of life.  We need to be able to trust ourselves to be doing the best we can.  We trust TD to look after herself.  We trust the greater universe in TD’s safe keeping.

4                  You  will deal with challenges in a unique way.  Learn from others, but don't be scared to follow your own path. Everyone has different ways of dealing with difficult situations.  What works for one family dealing with a person with diabetes doesn’t necessarily work for another.  People react differently in crises, and that’s ok. 

5                Up until the teenage years, boundaries are more easily defined.  Children are often more compliant than teenagers, as is the usual path of life.  There's a fine line between independence for a teenager and responsible parenting. Independence is so important, but so is being safe. 

                 

6                Never sweat the small stuff.  Sometimes we need to look at the bigger picture and not worry about the occasional slip ups

7                  Going to sleep may become a challenge, but the quantity and quality of your sleep will determine how well you function in your waking hours.

8                 Let your body communicate with you, and listen!  Never underestimate the mind/ body connection.  We have the numbers to prove it. Stress, tiredness, excitement, apprehension all influence TD's glucose readings.

9                You can be spontaneous, as long as you plan it meticulously.  It's lovely just to get up and go, but remember to pack the insulin, the glucose meter, the emergency kit, extra carbs, a few needles and spare batteries....

 

10        Down  to earth is an excellent policy.  Being sensible with the diabetes management takes a lot of stress out of it all.  Be practical, avoid panics and stress, and the glucose graph will thank you.

So this is the part where I should tell how you how grateful I have been to have had the opportunity to learn these lessons through TD’s diabetes.  Absolutely not.  I am not and will never be grateful that TD has T1.  It is an appalling disease and I wish no-one had it. It didn’t happen “for a reason”  It isn’t "a gift”  It is not a “learning opportunity.” It is an illness.  Life lessons can be learnt in so many ways that don’t involve my daughter’s daily life and long term health. 

Sometimes the best life lesson is just to hang on to your sense of humour.   If you have read between the lines, and understand my quirkiness, please send me a smiley face!!