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.

Footsteps

A sandy beach is the perfect place for gentle footsteps.  For a change of pace, I decided to take TD and her friend off to a beach.  We had to collect some pottery we had painted a few weeks before, so it seemed liked an excellent opportunity to go for a stroll on Hout Bay beach.  The girls raced to the water's edge, revelled in dipping their toes in the water, managed to persuade me to join them in a long jump game, and made "snow balls" from wet sand.  I went with no agenda, but found myself relaxing into my own pace and just enjoying my surroundings.  My Mom always liked a walk on the beach "to blow away the cobwebs."  I understand what she meant - the sound of the waves, the breeze, the feel of the sand and the wide open spaces are excellent antidotes for a busy mind.

When TD and her friend decided to climb some sand dunes, I opted out, and left them to it.  I sat and watched them from a distance, next to the nearby lagoon.  There was a flock of seagulls on the other side of the water.  Near them was a mass of something I couldn't quite make out....until I saw some movement.  The mass was a huddle of chicks, being watched over by the gulls nearby. Every now and then, one of the chicks would tentatively walk to the water's edge.  A few tried out their wings on short flights, and a couple tried to catch a fish. (one managed, but the fish was large and the bird dropped it!)

I was fascinated.  I spent a long time watching and wondering if the birds felt exhilaration at learning new skills (or feel anything at all).  I wondered if they used logic to figure out that flying into the wind is difficult, and the best course of action is to stop trying and glide with the air current (or is it built in instinct...) .I  enjoyed letting my mind float aimlessly.  It felt like a freedom to sit and watch properly for a while and not rush off. The whole scenario just seemed poetic to me.

I was, of course, keeping an eye on the girls too.  They were rolling down the dunes, burying their legs in sand, chatting and laughing.  Like the senior gulls, I was close enough to make sure of their safety, and far enough away to let them do their own thing.

Knowing how far away to sit as a parent is a bit of a skill.  Sometimes we need to hover closely and other times we need to let our children fly alone, even against the wind.  TD is tentatively dipping her toes into new waters, by trying out a CGM. (Continuous Glucose Monitor).  She has always been reluctant to use wearable technology, so last Saturday's appointment with the endocrinologist is a flight of freedom for her.  But as it is early days, I will write about that another time.

In the meantime, it is that time of year when we seem to endlessly plod through the shopping malls  and other (symbolically) hard paths.  Be gentle on yourself, and if you can, find a beach to enjoy soft footsteps and sand between your toes.

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.

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.

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

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.

Happy birthday TD!

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

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

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

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

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

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

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

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

Magical Science

The Science fiction author, Arthur C Clarke famously wrote :"Any sufficiently advanced technology is indistinguishable from magic." I think I know what he meant.  There is a specific blood test that - magically/ scientifically - can give a measure of the average blood glucose level during the last three months. The science part is that it measures how much glucose binds to the red blood cells, and red blood cells circulate around your body for about three months.  The magic part is that you can prick your finger, take a blood sample and three minutes later a magic box prints the information for you on a sticker.  This is called the HbA1c test.

TD visits her endocrinologist about every three months and this is one of the tests and checks that keep her safe.  People like me who are lucky enough to have a functioning pancreas, should have a three month average of  of blood glucose of between 4.5 -6.5 mmol/l. And that is a yardstick for diabetic control too.  But it is not that simple.  TD's last HbA1c result was 6.6.  This is good - it means that high sugars are not doing long term damage to kidneys, eyes and nerves.  But the endocrinologist was a bit nervous, as some of TD's daily readings had been quite high (exams, feeling ill, teenage hormones - the usual culprits of high sugars!!), so where were the lows to give such a satisfactory average?  Because TD is not wearing a CGM, we only have the information from her finger prick tests to work from - all the times inbetween are a blank page.  Undetected lows are a problem.  They are scary.  Could TD be going low in the middle of the night, and if so - how low is she going?  We need to know.

The options were either to wear a CGM for a few weeks, or for us parents to do the 2am tests for a while.  TD chose the latter.  So far, so good - no middle of the night lows (a 5.6 last night which meant she could have nighttime chocolate to see her through to morning...).  But this method of testing does not give the full picture.  For that, TD will have to let go of her fear and dislike of technology and wear a monitor for a while.  

Science and magic is not such a strange combination.  I think one sparks the other, creating an environment where imagination triumphs.  We need both in our lives - solid facts to ground us and tell us our boundaries, and a little magic to enable us to dream of different futures and keep us company on the 2am shifts.  



PS: Arthur C Clarke also said  "The only way to discover the limits of the possible is to go beyond them into the impossible".  Doesn't that sound like a T1 journey?

Warriors and Worriers

It is exam time in TD-land.  These exams are the final hurdles in her first year of high school.  It has been a whirlwind of new experiences, new friendships, new subjects.  And a few challenges along the way.

Exam times are pretty gloomy in most households.  There is a heaviness of responsibility, a curbing of free time and even a little social distance as all her classmates creep into their study corners and either study or wait for the three weeks to go by.  Feelings get frayed, tensions escalate.  Glucose levels soar.  If you need confirmation of the stress exams cause to teenagers, have a look at a person with diabetes exam glucose readings. Most exam times, TD gets sick.  This week was no different.  She has been running a temperature, is sleeping badly, and feeling excessively tired.  High glucose numbers can do that to a person.

Hyperglycaemia (too much sugar in the blood) shows itself in blurry eyesight, difficulty in concentrating, tiredness, apathy and irritable behaviour. All of this adds up to stressful exam periods, and of course, the stress causes the glucose levels to rise and so the loop closes.  Tight glucose control is even more important in stressful times so that things don't spiral out of control.

So, in the study breaks, we watch mindless TV shows, go for walks, and TD reads thick books.  She is currently reading the  Magnus Chase series by Rick Riordan.  It uses Norse mythology as a backdrop for page turning adventures of the heroines and warriors.  When we were chatting yesterday, TD used Warrior as her Word Of The Day.  But I misheard - at first I thought she had said "Worrier."

And all of a sudden I had a moment of clarity:  TD is the Warrior, fighting and winning the diabetes battle, and I am the Worrier, the person who is concerned about things going pear shaped.  And that is how it should be - my job is to keep a safe environment for TD to live her life, and her job is to be the heroine in her own story.

Hyperglycaemia is often more difficult to detect than hypoglycaemia.  There is no shaking or paleness.  And the symptoms of hyper all too often look the same as the symptoms of being a teenager. (!)  Water helps to wash the glucose out of the system, and if needed, TD injects some insulin.  It is a constant balancing act to make sure the numbers are neither too high nor too low.

 

I hope whatever examinations or tests or stresses you are facing at the moment are manageable.  I hope your life's balancing act is holding steady. When things get a bit unbalanced around here, I remind myself to keep looking forward, chin up and to always have a safety net! Worriers are warriors too!

Lowdown on reading

Books play a large part in my family's life.  We have distinctive, but overlapping tastes in literature.  I, for example, don't much like science fiction and fantasy (with a few exceptions).  Our son loves both these genres.  I favour modern fiction, and lately, biographies and recent history.  Andrew likes non fiction, a good crime novel and science fiction.  TD reads most things, voraciously and repeatedly!  Each time she rereads a favourite book, she cries at the sad bits, flaps her hands in excitement (I am told it is called "fangirling") at the soppy bits, and leaves the scary parts to read in daylight hours.  Often she walks beside the character right until the last sentence.

None of us can imagine a bookless environment.

Everyone, I think, goes through times in their lives when reading is more difficult.  It usually has to do with our focus not being able to enjoy fictional worlds, because reality is too imposing or serious.  Sometimes my eyes become mirrors and the images of the words bounce off my eyeballs without being comprehended.  I might as well be reading a foreign script.

This is, I imagine, how it feels to try to read when your blood sugars are low.  Your brain hasn't the energy to interpret the squiggles into words, and words into meaning.  Lows are serious stuff .  Hypoglycaemia (the medical term for glucose lows) has a long list of symptoms, including tearfulness, poor concentration, tiredness, confusion and dizziness.  Everyone is different:  TD's lows often make her giggly and always make her shake badly and go very pale.  Research has shown that, although the glucose number should get back to the normal range within 15 minutes if the low is treated properly, the effects of a low last about 60 to 90 minutes.

TD copes well with lows.  Best case scenario is when she can feel herself dipping and can prevent the low from taking hold.  But this isn't always possible, especially at school.  TD is an excellent student - she is intelligent, conscientious and attentive.  (Also, all her reading means she has an excellent general knowledge and robust vocabulary for debating all those issues she is so passionate about...).  Sometimes I wonder if her educators are aware of the effects of her blood sugars on her day.  A test, for example, written shortly after the low is not going to go as well as one would if her blood glucose was in the normal range.  She would never suggest diminished capacity as an excuse for a less than top grade. But I can imagine that when, at school  the world starts floating past you, words slip off a page and meanings become vague, it would be a good time to show some self compassion.  I admire her so much for taking this all in her stride.

Reading allows me to experience the world in larger dimensions.  It offers me the chance to learn, to relax, to marvel and to explore. Good books are like guides through life's journey.  Uninspiring books are useful too - none of our furniture wobbles.

Slender threads

Until last Thursday, TD had long, long hair.  She cut it short after much anticipation (and some angst) and gave the pony tail to CANSA - the Cancer Association of South Africa.  They make wigs for people who lose their hair during chemo treatment.  She has wanted to do this for a couple of years now as a thoughtful, personal response to people living through cancer.  Most people  have been touched by cancer in some way - through a family member, friend or colleague.  Awareness about cancer and its treatment is growing, in part because the media have demythologised it, but mostly because people are less afraid to talk about it and more open hear what treatment is available.

Other equally potentially deadly diseases do not receive such attention.  Why do some illnesses still have stigmas attached to them, sometimes even blame.  Why are people quick to judge others who are ill, why do we even have a label called "Lifestyle diseases"?  Much publicity around diabetes  seems to have an admonishment with it.  A radio advert running on our airwaves at the moment says something like: "Do you have a glass of orange juice for breakfast, and energy drink on the way to the office, cola with your lunch?  Do you know you are setting yourself up for diabetes type 2?"  The advert is from the government justifying the proposed sugar tax.   People look at TD and assume unhealthy eating habits caused her pancreas to stop functioning.

Another illness that people don't want to talk about is depression.  Despite alarming statistics - about 7 out of 100 people suffer from depression at some time in their lives - it is whispered about with eyes averted as if it is something to be ashamed about.  I was thinking about this because depression, like cancer and diabetes, can be life threatening if not treated.  A week ago, a class mate of TD took her own life.  She was only 14.

We need to talk.  We need to destigmatise ALL illness.  We need to be more compassionate, less judgemental. We need to be kinder  - to others and ourselves.

Life can be a slender thread.  We can be hanging on,  hoping the thread holds, hoping others see that it is fraying.  Let's use our slender threads collectively to create a interwoven rope of support.

I hope whoever gets the wig made from TD's hair magically absorbs the love and support which comes with it. Every time I look at TD, I see strength and compassion and great beauty in her short hair.  And I want to hold her tightly and keep her safe.

Dear parents of T1s

We are not alone.  We are surrounded by people who care and can help.  Sometimes it seems that all our energy is concentrated on keeping our T1s safe and on the glucose straight and narrow, worrying about numbers and diets and uncontrollable stresses.  We get so focused on that, that we forget to pay enough attention to our own worlds.  Speaking only for myself here, I know that is not healthy - for TD, my family or me.

Everyone is part of a community, whether we acknowledge this or not.  Sometimes it is easy and people surround us, enfold us and support us. Sometimes it requires some effort on our part and we have to seek out communities where we can be supported.  None of this comes easily to me. I am used to coping.  I like to be in control to a large degree.  I like to be calm.  Nothing about children coping with T1 allows for these things.

When TD was in intensive care in hospital at diagnosis, we (husband, son, myself) were on autopilot.  You know how it goes - you cope because you have to, you deal with things as they get thrown at you.  It is a hyperalert state.

Into this world walked  P and her 9 year old daughter. We had met once before when they had just moved to Cape Town and a group of moms and school kids were enjoying a sunny day at a park.  She is Godmother to one of TD's friends.  We had met  before her daughter had been diagnosed with T1 six months before TD's diagnosis.  And she had come to tell me that I would get through this, and her daughter was there to show TD that she would be ok and they were both there to tell us  we were not alone.  This was a huge gift.  In the weeks and months that followed P helped me through with kindness, her vast knowledge about diabetes, and with friendship.  I am so grateful.

Other support comes from complete strangers: people far away in online communities who offer support to anyone needing it. (A big shout out to the TuDiabetes community!)  Friends, family, counselors all form part of the safety net.  My friends - who check up on me, drink tea with me and listen to me probably aren't aware of the huge role they have played.  Don't be shy to ask for help - it doesn't mean you are not strong, it means you are human.

There is a wonderful saying in my country: "Umuntu Ngumuntu Ngabantu"  Roughly translated it means "A person is a person because of people."  We are all in this together. Community is our strength. To all the people who make up the jigsaw puzzle of my life - thank you.

Introductions and Normality

Just to be clear:  TD stands for Teenage Daughter, NOT Teenager Diabetic.  I know this blog is about the joys and challenges of parenting a person with T1 diabetes, but it occurred to me that this gives such a small picture of our lives.  TD is so much more than a diabetic teenager.  Diabetes does not define her.  It limits her.  It hurts her.  But it is only a small part of who she is. And so, with her permission, I thought I would introduce you a little better.

Some things you will already know from previous posts - like how strong headed and certain of the way she wants things (OK - stubborn)  she can be at times.  You will also know she inspires others with her bravery, tenacity and resilience.

She is a quirky, creative being.  She finds happiness in drawing, in playing music ( she plays the piano and the double bass - nothing small about TD's ambitions or instruments!) and in writing.  She is passionate - about human rights, about gender issues, about freedoms.  She is funny, with an off beat sense of humour, and an excellent sense of comic timing.  She reads.  She loves cat images on  the internet.  She plays Settlers of Catan with the family using cunning strategy.  She likes history, and is good at maths. Most of all, she is a good friend - loyal and kind.

I started thinking about all this after reading a thread on the Tudiabetes website.  The thread was called "Can T1s have a truly normal life"  The two sides of the argument seemed to be :  Yes, diabetics are just the same as other people, and No, diabetes affects every part of daily living and you are doing a disservice to children telling them they are normal, as they aren't the same as everyone else.

I have strong feelings about this subject. There is no such thing as "normal."  Everyone has restrictions in their life.  Maybe someone is too tall to be a ballerina, or has a visual impairment so cannot be a pilot.  Some people are restricted by economics, some by low self esteem.  "Normal" is a veneer people put on top of character in order to blend in and feel acceptable.  It is, in my opinion, a mythical, unattainable and reductive goal.

 

Yes, TD now has restrictions.  She cannot eat carbs without injecting insulin, she cannot be a pilot, she needs to test her sugars many times a day,  and she probably will be too tall to be a professional ballerina.  Everyone adapts:  she will too. 

She can't make up her mind.  Maybe she will be an architect.  Or study political science.  Or write a book.  She is fourteen - lots of time for her to decide how she will use her talents in this world.

Until then, she will, like a lot of teenagers, keep tabs on all the cat memes on the internet.  Like all other teenagers, she will challenge her parents, and debate almost every decision.

And like most other teenagers, her room is a mess.

Word power

My last post disappeared.  I think I pressed the wrong button and saved a blank screen.  That feels a bit like my life at the moment.  My efforts often get lost through my ignorance or lack of understanding of how things work.  I had been writing about writing - why I felt the need to start a blog.  My aims had been to unclog my thoughts and connect with other people.  I haven't managed to achieve either of these two things yet.  Some of the lack of unclogging has been my reticence to be messy - I am more than a little wary of spilling too much angst in public.  So I have deleted draft posts about my silent tears when TD's glucose was 2.6 and the shiver of terror I felt, and I deleted the post about the month of 2am glucose tests that were very necessary to keep her safe.  Facing diabetes as a parent is scary and exhausting and ever present.  It changes family dynamics, redefines life goals, stretches the limits of trust and generally makes one more aware of the simplest things - like how foods, sleep, exercise, emotions all weave a complex web in our lives.

I find it frustrating when well meaning people offer glib and simplistic advice on a subject they know nothing or little about.  I know they all mean well.  I try to smile through it and take the good (that they are interested and concerned.)  I even try to tell them a little bit about what it is like to parent a T1 child.  Sometimes though the comments that say " Oh well, type 1 , type 2 same thing"  or "she'll outgrow it" or " does she still have to test and inject?" or "but she is so skinny" make me feel more isolated.  I am getting better at laughing off ignorance - there is so much I don't know, I can hardly be critical of others.  It has made me more sensitive in my own language use though - I try not to presume other people's feelings and ask rather than express an opinion.  So that's good!

So my "blank screen" is slowly filling up with text.  Hopefully I will not delete too many of my posts and will be able to create a conversation. Thank you for absorbing some of my angst.

The Power of Friends

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

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

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

A learning curve

TD's (Teenage Daughter's) school experiences have been interesting.  My newly diagnosed daughter, in grade 6 at the time, ran across the playground at home time, with her arms outstretched gliding like an aeroplane and whooping, "Mom, I am high, I'm high."  There were several skew glances in our direction, and after we had shared the news that it was her glucose levels that were high, and she had drunk a glass or two of water, we left the playground, ignoring the raised eyebrows.  People do stop and stare.  TD refuses to hide her diabetes and happily tests and injects (into her stomach) in public.  A cute little girl in a beginner grade at the school saw her doing this and bravely asked the big grade 6 what she was doing, and TD patiently and using age appropriate language, explained about her pancreas, her lunch bag and her needles.  TD keeps her testing kit, insulin pens, glucose sweets, emergency contact card and info sheet in a cooler bag.  It gets hot here in sunny South Africa, and insulin needs to be kept below 23 degrees C.  This bag is her constant companion, and her (and my) Linus blanket.

TD's grade 6 and 7 class teachers were incredibly kind, compassionate and sensitive.  Both managed to both keep an eye on TD and give her the space she needed to be independent and self confident in her diabetes management.  I spoke to the staff about diabetes generally and TD specifically, and felt a great deal of comfort knowing she was in a safe environment.  It is  not easy letting go of a newly diagnosed diabetic and trusting the universe in her safe keeping. Happily the instances where I was needed at school were few.  Exam times, and the stress associated with them, brought on roller-coasting glucose levels.  Once I was called to the pool for an unspecified problem.  (It took me about three hours to calm my heart rate after that phone call - and the problem was not big.  I have learnt to ask for specific details when phoned, and not just to react and jump in the car - a learning curve for me.)

The Phys Ed teacher also looked after TD with great care, making sure her glucose levels were in the right bands for exercise both before and after sport. I do not take these things for granted.  I am so grateful to the good people who have helped TD gain her confidence, manage her everyday issues and get on with life.  I think she reciprocated their attitude by teaching them about resilience, bravery and determination.

The High Life and low life

I wish I had a better understanding of the Highs and lows, the whys and wherefores of a teenager withT1 diabetes. Hypoglycemia (too little glucose) and hyperglycemia (too much glucose) are everyday buddies of my Teenage Daughter (TD for short). Some patterns I can see, but others seem so random! One test she is floating in the glucose teens and the next she has sunk to the scary threes.  I get frustrated with my own lack of ability to predict what's next, my own inadequacy in helping and bewilderment at the power of the body.  I have always been a believer in the mind/body synergy - the importance of linking heart with health (in a practical way) and now, seeing glucose swing with fear, sadness, happiness, anger, there is concrete confirmation of this.The adrenal system is activated with extreme emotion and this obviously has physical effects. Now I can just see it in numbers on a monitor.  In a detached way, it is all very interesting, but in an honest moment here - it makes me raw with fear and sadness.  Unlike TD, my pancreas deals with all these emotions and my body copes to a degree.

I am lucky - TD is usually quite open emotionally.  She will say, " I am sad today, and I don't know why." or "I am feeling strange right now."  Like most every other mother in the world, I want to take it away and make it all better.  And I know I can't.  So I enfold her in my arms, and hold her and let her know I am there.  It seems horribly inadequate, but it is the best I can do.

Start at the beginning

Most days I say a silent thank you to Dr M - a man I have never met, and only spoken to once on the phone.  He phoned me at about 1am on Saturday the 20th December 2014.  As the doctor in charge of the pathology tests at the lab a GP had sent Teenage Daughter (TD hence forward!) blood tests at 4pm, he saw them and knew she was in critical danger. TD had been unwell for a while - tired all the time, losing weight and lacking her spark, we had limped to the end of the academic year, and thought a holiday would do the trick.  We had been to the GP a few weeks before with the same symptoms, and he had prescribed an antibiotic.  But she wasn't getting any better, and on a Friday morning at the local grocery shop, she ran out of energy.  She used what little she had left to protest against me taking her back to the doctor (Christmas time was very important to my eleven year old.)  But I picked her up and dragged her there.  He sat her down and did the usual checks.  He then sent her off to provide a urine sample, leaned forward and confidently diagnosed anorexia nervosa.  No.  I knew that was way off and told him so.  I also thought it was a somewhat rash diagnosis.  When TD got back the glucose test strip went violently green, indicating high levels of sugar.  So the GP took some blood and sent us home.  TD and I crawled into my bed (Dad and brother were away for two weeks) and knowing there was something terribly wrong, we drifted in and out of restless dozing.

Until Dr M phoned to say TD's results were critical and could not wait until morning.  He had phoned the local hospital, spoken to the emergency staff, told me a name of a doctor who was waiting for us right then.  He had thought of everything - I bundled TD into the car and went to the waiting emergency room.  He saved TD's life.  I will be eternally grateful.

(Not so much to the GP who sent us home.)

How did you discover your child had diabetes?  Are there people you think of daily in gratitude?  Were you as terrified as me?

If you are anything like me, you will be reading this with a mug of hot tea in hand.  But welcome to the coffee drinkers too.  Tea has accompanied me through many of life's occasions - the hiccoughs, the hellos (and goodbyes) and the hell-weeks.  An aside: I once confessed to a doctor that I drank 6 cups of tea a day, and he told me to give up or reduce immediately.  This was a turning point for me - I realized I had to find a new doctor....  What I have done in the interests of health, however, is to cut down on sugar.  From 3 spoons a cup (gasp, I know, but I was a skinny youth with no insight into tooth decay and sugar highs and lows...) to now having none. At a tearful airport goodbye, my sister-in-law,J, challenged us both to cut out sugar, and we clinked airport mugs and agreed to do this together. But, as we live on different continents, I sneaked a spoonful in every now and then.  I did let her know.  I am, generally, the honest sort. (OK - I do sometimes have more than 6 cups a day.)

But I gave it up completely two and a half years ago, when my daughter, then aged 11, was diagnosed with Type 1 Diabetes (T1).  So that is what this blog is really about: being a mom to a beautiful, talented, sensitive teenager who lives with needles and glucose test and a backdrop of angst about hypos and hypers*

Having sugar in tea has nothing to do with diabetes type 1.  Nor does eating sweets, drinking fizzy drinks, a sweet dessert tooth or any other life style factor.  It is an auto-immune disease; the body attacks it's own pancreas and insulin production is halted.  This means that the body is unable to unlock the cell walls to allow glucose (energy) to reach the cells.  So there is a build up of sugar in the blood stream, and a lack of energy in the cells.

There is an important distinction between type 1 and type 2 diabetes, and not too many people get that, unless you have stumbled across these diseases in a personal way.  Type 1 people are insulin dependent, the onset is sudden and life threatening.  Type 2 has a slower progression and can usually be controlled with diet, healthy lifestyle and if necessary, some insulin.

But you probably know that.  In fact I am hoping to find people who know all sorts of things about diabetes and mothering and compassion and well....anyone really, who has time to join me on this journey.  So - if you have Time for T, let me know and we can chat.


*more on hypers and hypos another time...