Monday 28 December 2020

End of year blues

In the digital age, this family still relies on a paper calendar.  Each year, usually in October or November, I print out 13 A4 sheets of different coloured papers and create a write-on calendar for the following year.  Each day gets a block, and the family knows - if an event is not filled in on this paper calendar, it isn't happening. (The 13th page is for January the following year - I like being prepared).  I finally managed to motivate myself to do this task today, and I filled in all the recurring important days like birthdays and anniversaries, added the public holidays, and tentatively filled in the school terms in pencil.


I am not particularly hopeful that next year will be a smooth ride - certainly the end of this one has been a train crash, covid speaking. The numbers are alarming.  (Statistics are theoretical and so removed from feelings; having a sibling in hospital on oxygen fighting to get his breath is a real game changer, emotionally speaking.) 

It has been a year when not much has worked.  The permanence and reality of life circumstances, including covid and diabetes, really got to to me a while ago. I think everyone gets end of year fatigue, and this year it is compounded with worry and loss.  One startlingly good thing has happened to my family in the last week: R managed to get home for a  holiday from the UK.   It feels so good to all be together for a short while.

Something else that didn't work towards the end of this year were the Libre sensors that TD uses to read her glucose.  Apparently a bad batch  had been manufactured, and we got 4 of them.  As a result (we think), the MiaoMiao alarm system we were hoping would allow us some extra hours of sleep, did not work either.  Abbotts replaced the sensors - after a lot of questions from their call centre, including did the patient need hospitalization or go into a coma because of the failure.  The MiaoMiao rep was kindly and concerned, but thought it must be a software problem. The upshot of this tech failure has been some high glucose numbers, some sleepless nights and a general mistrust of  reliability of tech.  Bad tech can be worse than no tech, in some cases. 

Next year is round the corner.  I feel I will be starting the year with an energy deficit created by the general upheaval of 2020.  I have read  the Facebook posts that say it is ok not to be ok, or that not everyone is cut out to make banana bread, and I find I am past platitudes.   They lack honesty and simplify complex matters to the lowest common denominator.

I think I need to fill in some Breathing Space days on my new calendar.  Covid, diabetes, tiredness are long term situations. with no end dates. They are situations that need to be managed. 

I wish us all a better 2021.  



An update on Tolstoy the tiny tortoise:  The antibiotic drops prescribed by a kindly vet have worked wonders.  Tolstoy can eat again and his eye is so much better - almost back to normal.  He is able to wander around the Fynbos garden, and is living his Best Tortoise Life.


 



 

 

 

 



Sunday 22 November 2020

Betrayal

⏹ Not for sensitive readers.  I am banging this blog out on a Sunday morning because the words are tumbling inside me and curdling my sense of peace.  Betrayal is a strong word, but it sums up what I have been feeling the past few days.

Speedy attacked Tolstoy with an intent to kill.  (For any new readers to this blog, I am referring to two of the free range tortoises that allow us to live in the house in their garden.).  It was Friday morning, and TD was taking a study break (chemistry this time) and wandering around the garden.  I heard anguished cries which got more and more desperate sounding.  TD was standing with tiny Tolstoy in her hand, tears streaming down her cheek.  He looked limp, with his head lolling to one side.  She choked out what she had found - the older, larger tortoise, Speedy, had turned Tolstoy on his back, and was biting at his neck.  The strong beak had bitten the eye and mouth and both looked beyond healing.  The immediate action was clear.  I gently held Tolstoy, and TD put a very angry Speedy in a confined space.  She put him in her fenced off veggie patch.  

Poor little Tolstoy.  Poor TD.  Both needed a lot of calming, and soothing before we could even assess the damage.  The swollen face and offset jaw and damaged neck didn't give us much hope for his survival. But he pulled through.  The eye is still too swollen to see if he will have sight again, and the jaw seems to be healing.  We made a "nest"  home for him in a cardboard box, and brought him inside to watch over him. Over the weekend, TD upgraded his home to a larger wooden crate that she made, and put some homely plants and gravel in it.  This tortoise is going to need intensive  care for a while still.

Tolstoy in the ICU TD made

Initially all TD could feel towards Speedy was Anger with a capital A.  I think the feeling was mutual.  Speedy ripped up the herbs in her garden, and trampled the leeks.  Too angry to look at him, we left him there overnight and concentrated on helping Tolstoy.  On Saturday morning, I prepared a portion of the garden for Speedy to live in by himself.

TD and I agreed that this incident was raw nature.  We tend to personify things some times - Speedy was obeying some natural instinct to defend territory, or assert dominance. But it felt like a betrayal.  What if TD hadn't been there at the right moment?  What if Tolstoy never completely recovers?  The garden, which has recently brought us so much pleasure, went gray in a mist of the betrayal of nature.

I reacted strongly too.  I felt broken.  This beautiful creature was damaged by a phenomenon of nature under my watch.  I hadn't picked up any signs or been quick enough to avoid the damage.  I felt drained.  But as with all crises, one copes and deals with circumstances to stabilize the situation.  The recrimination comes later.  The what ifs.  The anger.  The acceptance that there is no fault to assign.  The "we can live with this" attitude, and Gratitude for life.  Diabetes feels like a betrayal.  One expects a body to function properly, and out of nowhere, suddenly it attacks.  Nature can be so cruel. But we learn to trust again, to accept, to be grateful.   Tolstoy survived.  TD survived.  We will be OK.

 

Speedy's new garden of isolation.



Sunday 15 November 2020

Learning to Idle

Many moons ago, before the TD era, I was involved with  teaching adults who had been denied an education because of the apartheid system, how to read.  It was immensely rewarding to meet these strong, determined people and share my love of reading and writing with them.  I might have taught them how to read, but they taught me so much more about life.   The slogan adopted by the forum I belonged to was "You're never too old to learn".  Learners ranged in age from 30- 85, each one inspired me with  their tenacity and determination.

It is never too late to learn, but as I age, I think it may become more difficult.  We may have to unlearn stuff first, or we may have to put aside the many distractions that "adulting" requires.  We may have to unsettle ourselves from a comfort zone, or gain some courage to find self confidence.

TD is hard at work as I write this, studying for her Grade 11 physics exam, paper 1, which she writes tomorrow.  She has tackled this work head on, and should be proud of her resilience and determination.  It has been a difficult academic year for most kids.

I like to think I am still open to learning, even if I haven't tackled big subjects - like learning Swedish or where to find the unmute button on a zoom chat(!).  Diabetes certainly provided (and keeps on giving...) our family with many learning opportunities. Some of it is obvious, like learning the basics of what the pancreas does, why insulin is needed to "unlock" the cell walls to allow glucose to be absorbed from the blood to the cells to give energy... Some of it is more subtle, like learning which are long acting, which are fast acting carbs, and some of it is learning how to read one's own body and how life and emotions affect us physiologically.

Although TD has had diabetes for 6 years now, we need to keep learning and adjusting so that she can live her best life.  I am learning to step back more into the shadows as TD leaps into adulthood. We will always be here for her, but she must have all the tools and confidence at her disposal to nag herself about checking her glucose level, and decide for herself if the extra treat is worth the toll it will take on her body.

 But enough about us.  Here is a new word for you to learn :  Aylyak.  There is a village in Bulgaria called Plovdiv that has adopted an aylvak life style, and has become famous for it. This was brought to my attention by Pam, a gentle house guest who stayed with us for a few days recently, and who shares my love of reading, writing, gardening and creativity.  She forwarded a BBC travel article she had read, and it fascinated me.

The word itself is not easily translated into English : happily idle seems to be the closest definition. We so often put a negative slant on being idle, but here it is venerated as a way to live your best life.  Slow down, don't get flustered, enjoy where you are, listen to the inner and outer worlds you inhabit.  Be happy.  It is, apparently, about finding time to just be, without expectation or judgement.  I so like that.

  
TD having a break from physics!

 

International travel is still a bit tricky, so going to Bulgaria might be a challenge.  But learning to live Aylvak style will work anywhere if we let it.  But we may have to unlearn many bad habits.  We may have to lose the cell phone, or at least not be ruled by it. Work may have to fit in into our schedule instead of the other way round.  We may have to accept who we are, warts, worry, diabetes and all.  We may have to relearn to listen to our thoughts more carefully, we may have to accept that sometimes doing nothing is a healthy activity in itself. 

Are you keen to journey with me to a virtual  Plovdiv? It's never too late to learn.....


Here is the link to the BBC article:  http://www.bbc.com/travel/story/20201104-europes-city-of-dawdlers-and-loafers



Wednesday 14 October 2020

"We called him Tortoise because he taught us."


 A promise is a promise - it's tortoise time.  One of our family rituals, is playing Hide and Seek with 5 of the 6 reptile members of our family.  Well, just Seek really.  They are incredibly good at "disappearing", sometimes only letting us find them after a few days.  I love how when they know they have been found, they simply stop, completely still, and retract their heads into their shells.  It's the "if I can't see you, you can't see me" defense mechanism that a lot of species, especially humans, employ.

This is Olaf
  Speedy keeping safe

So - some introductions:  Thadeus (who strictly speaking is a Thadea) grew up in Andrew's childhood household, and has been part of the family longer than I have.  She is a gentle soul, a bit of a leader, confident and comfortable in her own shell.  Speedy was rescued by my sister when he was so very tiny.  A dog had damaged his shell in several places and so he is more vulnerable and
exposed.  He hides a lot, and is skittish, and is only just now venturing further into his fynbos buffet garden.  Tolstoy - you have already met - and Olaf are the babies of the group, and heart meltingly gorgeous.  Tostoy is the tiniest, and the friendliest of them all.  Olaf is the best hider of the group. And then there are Bruin and Brown.  These two were rescued from a boutique hotel that was closing, and rehoused with us by American friends who were staying there and concerned for their well being.  Bruin is an easy going, get-on-with-everyone type.  Brown is not.  He is so aggressive that we have had to give him a separate patch of garden away from the others.  Every now and then we try to integrate him back into society, but his physical aggression is nasty, and he tries to hurt the others.  He hisses at us, and clearly had an unhappy childhoood.

TD once had to wear a tortoise for a week. Before technology had become so sophisticated and accessible- way back in 2017- TD's endocrinologist was worried that some hypoglycemic events (low glucose) were being missed and this could put TD's life in danger.  So she attached a "tortoise" to TD (her terminology, not ours).  This was a closed system Continuous Glucose Monitor, meaning it gathered and stored glucose information in the sensor, but was only read by the endo at the end of the trial period .  She could study the data, together with a food and activity diary, and give feedback.  These days, technology has moved so fast that the CGM gives immediate feedback, and TD can adjust her insulin accordingly. The 2017 device was called a tortoise because of it's shape.(and to make it less scary to children....)  And maybe because of the slowness of getting data.

I know tortoises are thought of as slow animals, but in my experience, if they want to, they can rumble over rough terrain at quite at pace.  Aesop's fable of the hare and the tortoise has the slow and determined tortoise plodding on to win over the overconfident faster competitor.  Consistent effort leads to winning the race is the supposed moral of the story.  But life isn't a race to be won, is it.  And we are not competing with anyone.  Diabetes has taught me that there are times to be slow and methodical, and there are times when speed is essential.  Yet again, it is all about balance and context, I suppose.

If you want a fix of gorgeousness, we can organise a Zoom meeting between you and a tortoise....although for most of the meeting you may just be staring at some fynbos, until a tortoise appears.  Trust me, it's not a bad way to spend an afternoon.

Thadeus


 

 

 

 

 



 


 

 

Sunday 20 September 2020

The MiaoMiao


TD is sitting on the edge of the bed, holding a clove of garlic as if warding off evil spirits or fleas, and we are discussing this blog.  I initially was going to tell you all about the MiaoMiao, but she thinks it is too soon.  So she was suggesting other topics :  the garden, Andrew and my 30th wedding anniversary,  tortoises, our mother/daughter relationship, the weird dreams we had last night, arum lilies and water systems of plants.  Meanwhile Andrew is bringing freshly baked cheese biscuits for us to sample  - they are delicious - and I realize that there is beauty in the mundane.

So - the MiaoMiao.  This strangely named device is new to our household, so maybe TD is right - it is a bit soon to write about it, but I will give you some background.  TD uses the Libre Monitoring System for measuring glucose, and it has changed her life.  It replaces the 12+ finger prick tests she had to do for all those years (can you imagine inflicting that sort of pain on your child day after day, year after year with no possible holiday to let her fingers recover?) The Libre is a sensor that is placed on her upper arm and has a filament that sits 5 mm beneath the skin to measure interstitial fluid.  It needs no calibration (finger pricking) - unless something major is going on, and it reads the glucose every 5 minutes and can be read via a hand held scanner.  The sensor gets replaced every two weeks. Sounds good, doesn't it!


 Libre sensor and reader     


     But the thing the Libre does not do, is alert TD (or us) if she is in danger.  And not to hammer home the point, but all type 1s live with the daily danger of losing consciousness and going into a coma.  Hyper vigilance is key to good management and safety, but I am sure you can imagine how exhausting that can be over a sustained period. 

Introducing the MiaoMiao.  This device sits on top of the Libre sensor and has a Bluetooth connection to any smart phone.  Several apps have been developed which interpret the data that is conveyed from the Libre through the MiaoMiao and onto the phone.  And it sends out alarms when the glucose is too high or too low. 

The MiaoMiao sits on top of the Libre Sensor

We are still figuring out all the processes  and best usage.  One of its strong points is that it can be used as much or as little as liked; TD is using a sweatband to hold it in place, so that she can take it off  and put it on with no fuss. Andrew and I have been routinely checking TD's glucose at around 2am, and an alarm system will allow us to sleep longer and respond to emergencies.

Not yet, of course.  We still need to learn how trustworthy the device is, because complacency is not an option.  There have been a few hiccoughs - The Libre readings (which we trust) and the MiaoMiao readings have not always correlated - sometimes being wildly different. 

TD is happy to try this new tech.  She was delighted with how small the device is, and the ease of use.  She does not want us, as parents, to have constant access to her glucose numbers, so the app is on her phone only.  We respect that.  

It is early days.  We are holding thumbs this will be a great success and that technology will do some of the hyper vigilance for us.

And the idea of writing about tortoises is growing on me, so to whet your appetite for the next blog, here is a picture of Tolstoy for you: 

Tolstoy the tiny tortoise




 

 

 

 

Tuesday 18 August 2020

What the Elves say

 

 2020 is being stubbornly relentless. No one knew how things would pan out when Covid 19 hit the world, and it has been a long, tough season of readjustment. Some people predicted it would come and go, and life would return to what it had been.  Others suspected it would be a long term, on-going change to our way of life.  Most people are just taking it in small chunks, because that makes it all manageable. I think it is the uncertainty that can be the most stressful - the social, economic and personal unsettling cause tensions to rise.

And just when you think you might be getting the hang of  whatever is going on, things change again, and new regulations are promulgated and safety precautions are suggested.

You know all this, because you are living through it. 

But everything I have written above is just what a Type 1 diabetes diagnosis feels like - stubbornly relentless, a huge readjustment, a hope it will go away, acceptance that this is for life, and managing it in small bites.  Covid 19 had a familiar feel to it for our household.

It takes time to adjust to living with a chronic illness, and just when you think you are getting a handle on it all, things change.  TD does an amazing job of navigating the course. 

Lock down has given people a chance to try new things, or catch up on some chores . I eventually made Banana Bread.  TD tidied her room.  It was like an archaeological dig in some places, and  she uncovered lost mementos and buried treasure.  This included two tubes of henna bought in Sedgefield many months ago.  I watched in fascination as she beautifully scripted some words on her wrist, in characters I could not decipher.  It was, apparently, Elvish, Tolkien's made up language from the Lord of the Rings. 

When she offered her calligraphy skills to decorate my wrist, I was delighted.  Here is what I chose to have hennaed on my wrist:

 
 
 

For those of you whose Elvish is a little rusty, it says Serenity and Courage.  I think those two concepts are helpful when dealing with everything that is thrown at us - the big and the little stuff, the permanent and the transient. Covid and diabetes.

Tolkien's writings are full of wisdom and advice.  One of TD's favourite quotes is "Not all those who wander are lost."  I love the idea of purposeful wandering, or even purposeless wandering.  It is calming and leads to creativity.

 The Tolkien quote most appropriate during a pandemic might be:

"I wish it need not have happened in my time," said Frodo.

"So do I," said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us."

Live courageously, Find serenity. Decide wisely how you want to live. Wander aimlessly for a while....

 



Sunday 12 July 2020

The Big Picture

We get great pleasure from wandering around our little garden every day, looking at which new plants are popping up, which are flowering and which are flourishing. Some, of course, have decided that this new environment is not for them, but the majority have been nurtured and talked to most days, and are growing despite our enthusiastic ignorance of horticulture.  Weeds abound too, as do mushrooms, as it has been damp (and we put down a mushroom top dressing). 


To get the best view, you need to sit on the bench in the shady corner and squint a bit.  That way you can see the whole picture, and the weeds and mushrooms blend into the greenery and fill the gaps.


I am finding it more and more important to look at the big picture these day.  There is no longer any point in getting hung up on the little details that don't have big consequences. Like traffic, or untidy rooms, and brusque strangers. This is probably one of my reactions to Covid.  The important things to concentrate on are Life and Living.

TD is back at school.  She goes every second day, having one week of two full days at school, followed by 3 days the next week.  Inbetween she does her school assignments and learning at home. So far - and it is early days- this is working well.  I can see the shift in TD's attitude to life as she is able to engage with her friends, and her work, on a more personal level.  It suits her not to have to rush in the mornings (school starts an hour later, and the traffic is light) and in the afternoons (all extra murals are cancelled.) At the beginning of the year, we asked TD to take a serious look at all her commitments and choose which she could let go, in order to calm the rushing stress.  She had trouble deciding, but Covid sorted that one out for her.  The only after school activity she does is her double bass lesson, and that is something she loves.

You have probably read all the news reports about people with comorbidities needing to be extra careful about avoiding the virus.  Sadly, statistics are showing the the most deaths happen to people who also have diabetes.  The following infographic was supplied by the Western Cape Government on the 9th June.


You can see how scary this is for the T1 community. TD's endocrinologist, and the paediatric endos agree, that it is as safe for TD to go to school as it is for anyone else her age.  The bigger picture is that young people have a definite advantage  - they are likely to only have mild symptoms and recover quickly.  The other mitigating factor is that the diabetes needs to be well controlled.  This means we need to be extra vigilant to keep TD's average below 10.  This is a huge challenge in such a stressful, unusual time, so we need to be extra vigilant.  I am very grateful that we have resources and abilities to help TD manage her glucose levels.  She will just have to be patient with me forever asking her to check she is not too high/too low.  Moms worry.

The big picture is that the whole world -well, most of it- is fighting the fear of an unknown future. There is always the minority fringe who reject the unpalatable science for a more comforting fiction.

Our front garden is a contemplative space for me.  The weeds don't bother me, nor do the fallen leaves or the mole tunnels.  The whole picture, weeds and all, speaks to me of Life in adversity.

My thinking spot






Wednesday 10 June 2020

Virus alert

I am not sure about you, but to me it feels as if the world is holding it's breath and waiting for better days. A lot of that hope is focused on the development of a COVID 19 vaccine that will allow us to become immune to this devastating virus. 
And it seems possible and probable that the medical community will be able to pull that rabbit out of the hat soon.  Or is that wishful thinking?

I have been trawling the internet to see what has been done about a vaccine for type 1 diabetes.  There have been claims or rumours of trial vaccines being "close", but reading between the lines, that is not actually possible.  This is mostly because no one knows exactly WHY some children suddenly develop T1.  From studies, it can be seen that there can be a genetic component, but it is mostly attributed to a virus attack.  TD's endo, when we first spoke to her shortly after diagnosis, asked if TD had recently broken any bones, or if there had been a major social or emotional upheaval.  (The answer was no to both these questions in TD's case.) Studies regarding stress as a contributing factor are inconclusive - some research pointing towards a nod and others stating this is not plausible.  The upshot is that it is impossible to prevent something if you don't know what causes it.

A vaccine to prevent anyone else getting T1 would, of course, change the world, especially as T1 diabetes seems to be on the rise.  The "risk" ages are 4 to 7 and 10 to 12 (who knows why) and strangely the further away from the equator, the more cases are diagnosed.   TD fell plonk in the 10 to 12 age group, and a fair distance from the equator. If a cure could be found., along with a vaccine, I would be even happier.

Type 1 diabetes involves a lot of needles, injections, food control and vigilance. It is a full time job around which everything else must fit in.  There are things that TD is not able to do when she is experiencing a hypo- or hyper- glycaemic episode.  These include, but are not limited to, exercising, concentrating or anything involving fine motor skills precision. So, keeping the glucose line at an even, flat 6 or 7 is a goal that needs to be strived for daily, just to get on with regular stuff.

Viruses are big news at the moment - understandably - as COVID 19 has affected everyone worldwide in some way.  A virus can be defined as  "a disease -producing organism, capable of growing and multiplying within living cells" (according to my Pocket Oxford dictionary which was printed before computer viruses existed!!) or "moral poison, malignity". 

All the viruses floating around present challenges that need to be addressed head on.  Currently the moral poison of prejudice is being held up in the spotlight, and it is a dismal virus.  There is no vaccine for intolerance and hatred, and we need to find a cure to moral blindness as fast as possible before the system of society is too corrupt to recover.

Just like TD's diabetes diagnosis highlighted for us the impact a virus can have, COVID 19 has exposed the vulnerability of everyone.  It has reminded us to appreciate what we have and why we have it. It reminds us to be human and to be kind.











Tuesday 5 May 2020

The art of masking

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

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

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

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

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

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

Friday 3 April 2020

The silence of sadness

Nothing is simple at the moment. Our world is in disarray.  We are bombarded by statistics and warnings and news broadcasts that make me want to cower in the corner.   We have been isolating for a bit longer than the government mandated time period, because we are very aware that TD falls into the vulnerable category should she come into contact with the COVID 19 virus. Oceans separate us from R;  I so want us all to be together to weather this storm, but the best we can do is (and I am very grateful) chat on Whatsapp.  Home, at the moment, is a Whatsapp group.

Amidst the chaos, TD turned 17.  It was a more subdued celebration than usual, and the party has had to be postponed.  As her birthday was just before lockdown, the four of us (the fourth being O, TD's boyfriend) had a picnic on one of the world's most beautiful beaches.  It is a lovely memory of celebrating TD's TDness.


Sunset at Clifton


Sadness is a silencer.  Words become difficult, amid the sameness of everyday, the magnitude of privilege and the world speaking repetitively about things that are difficult to hear.  So I am silent, as I have nothing new to add.  The best we can do is stay in our bubbles of isolation and feel thankful for all we have.  Except I feel other things as well.  I feel anxious about the health of my family.  I feel restricted and restless, tinged with the guilt I shouldn't be so ungrateful.  The Shouldn't Feelings.  I shouldn't feel sick - I am not as sick as others.  I shouldn't feel tired - I have all the time to sleep, and soft surroundings to comfort me.  I shouldn't feel restless - I have a garden to potter in, and a space I have taken as mine in the house.  Trying not to feel these things creates a silence around me that is exhausting to maintain.  I know - all feelings are valid.  I just have to accept that this is how the world presents itself at the moment.

South Africa's three week lock down aims at flattening the curve.  So far, it seems to be working, but I fear three weeks may just delay the onset of the worst, and we can't stay like this forever.  The economy is crumbling, and I fear that will spark even bigger flames of resentment.

We are doing our part to flatten the curve, conscious that this is a group effort if it is to succeed.  And we are very familiar with the concept of needing to flatten the curve - it is a daily practice here with TD's glucose line.  Every day, we try to iron out the sweeping highs and the dipping lows and on the odd occasion even manage a short period of a steady, straight line on the graph.  It is not easy, particularly now, as TD's stress levels are high, her routines are disrupted, and her social support system is more difficult to connect with.  But we know to keep her healthy, we need to flatten the curve.  (Admittedly the midnight waffles on Wednesday were probably not a great idea diabetically speaking, but what fun!).  Although we aim at a straight steady glucose line around the 7 mark, we know it is unachievable 100 per cent of the time. Life doesn't work like that - things are not linear.  More often they are circular, or triangulate or lets face it, a unnamed squiggly shape unique to every person.

I am not one of those people who say that the COVID19 virus is good for the world - a time for reflection, and to reconnect with nature and other people.  Tell that to the families of those who have died. There are other ways to learn important lessons, and only those who have to endure great loss have the right to tell others to look at the good in the silence of  their sadness.






Thursday 12 March 2020

Load Shedding

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

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

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

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

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

My personal load shedding techniques include writing, talking and allowing myself to spend time in nurturing spaces. These help restore sapped energy.  That is my way of re fueling myself when times are tough..  So to those of you who offer support to us as a family and me in particular - thank you for giving strength and stability to our grid. 
 
Load shedding is a lot easier if it is predictable.  We have print outs of when our electricity supply will be cut depending of what stage we are on.  We have apps.  But every so often unexpected breakages occur at South Africa's power stations, and our best laid plans are disrupted.  It is very frustrating.  In the middle of a carefully planned schedule of when to do what, we are once again plunged into darkness, losing whatever we haven't backed up on the computer, the clothes washing half washed, and garage doors that won't open. 
 
Optimally, maintenance and repair should be on going, so that nothing breaks down.  Money should be spent on creating new power sources, preferably renewable, but life of a T1 doesn't always work that way.  Sometimes it seems there isn't time for some maintenance down time, and we rush from crisis to crisis.  This needs to change.  If we spend more time planning for long term health and happiness, things will be calmer. 

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

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

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




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



Sunday 9 February 2020

The voices in my head

TD's playlist has some songs on it with most annoying lyrics - the type that get stuck in my head and play on silent repeat in my mind until I am forced to do something drastic, like listen to some of my own style of music, or distract myself with a book.  TD's generation has a lot of angst in the lyrics that are used, and I wonder if that repeats in their subconscious and adds to a collective melancholy.  I wonder if song lyrics (like Teen Idle or Ocean Eyes ) add to the voices in their heads.

We all have voices in our head. ( I hope...do we?? Perhaps I am speaking for myself here!) They are the ghosts of childhood, the constrictions of societal norms or the self imposed opinions of self.  Or sometimes they are just lists of things that need to be done.

My early morning checklist includes things like changing the needles on both insulin pens, giving a very sleepy TD the correct type of insulin at the correct time, making sure she eats within a certain time frame of injecting, and packing an ice pack in the insulin kit for school.

 The last couple of weeks have been diabetically challenging.  On one occasion, TD did not take her insulin kit to school.  For some reason, I didn't pack it or leave it with her lunchbox, and as her glucose had been too low at breakfast time, she hadn't taken any Apidra (short acting insulin) when she woke up.

The voices in my head did a little admonishing speech - the what ifs looping around (the emergency injection for severe hypos lives in the kit and should be on TD's person at all times).  I whatsapped her and dropped the cooler case at the school's front office.  Crisis averted.

TD checked in with me back much later, towards the end of the school day.  She thanked me for bringing the insulin through.......but I hadn't checked properly and the Apidra pen did not have a needle on it.  It is absolutely no use whatsoever without the needle.  Oops.

No insulin equals glucose spike.  High glucose equals headaches, tiredness, blurred vision and inability to concentrate.  Inability to concentrate equals a hard day at school.

Shortly after this, TD caught the bug going round.  The doctor booked her off school for the best part of a week.  She slept for most of it, and she tried to stabilize those glucose levels.  But guess what - pretty much any illness causes sugar levels to rise as cortisol ( glucose) and adrenalin are released into the blood stream to help with fighting infections.  Even a minor cold can be a major challenge for anyone with diabetes.

Enough, say the voices in my head.  How about some positive news.

TD has a fascination with, and love of, old cars.  She recently had the opportunity  to be a passenger in an 1916/17 Dodge Brothers on a rally from Wynberg to Simonstown. (The date discrepancy relates to the addition of a part in 1917....)

The 1916/17 Dodge Brothers
It is a beautiful coastal route, and TD waved like royalty from the back seat at the many admirers along the way.  It was a lovely day,  celebrating nostalgia and fine craftsmanship, the carefree feeling of wind in your hair and sun on your shoulders.

Our inner voices play an important role in how we live life.  Sometimes it is hard to drown out the picky voices of criticism and or the bass notes of self doubt.  Sometimes these voices need to surface so that things can be made better and easier, or so that we can make longer check lists.  Sometimes the voices need to be overlayed by the kindness of people we trust, who encourage us and tell us we are doing ok, even in the diabetically challenging weeks.










Monday 20 January 2020

Back to school

I have to laugh.  I have just spent the last half hour trying to unlock our oven from its child SAFE mode.  I had accidentally locked it this morning when I cleaned a little more enthusiastically than usual, and wiped the display face with a flourish and hit, it seems, a clever combination of buttons that activated the Safe mode.  No problem - Google is my friend, and I simply typed it in to a search.  I have to assume the designers of these ovens either have sadistic streaks, or very clever children who have cracked all their previous attempts at safety locks.  I trawled the internet, even putting in the exact model (which comes in two versions it seems, both with different instructions.)  Any way , the long and short of it is, after I had stopped to drink a mug of tea, I finally managed to unlock it, and start reheating the leftovers which will be supper.

It was frustrating.  And I wouldn't tell even my best friend how long that took, and how many times I tried to guess the combinations of key presses before looking it up and how I had to laugh at my foolishness.

It came on top of a frustrating interaction with Walton's Stationers, suppliers of TD's stationery requirements for grade 11 (Grade 11 ! - how did that happen so fast!) We ordered and paid for the books last November, as requested, blissfully expecting to pick up the cardboard suitcase they are packed in at school last Tuesday.  Ah no, it was not to be.  They had received the payment, but not the list of items ordered.  No problem, mistakes happen, and I sent off a copy of the form to the email address supplied.  TD could fetch them the next day, and she would just delay the covering until the next afternoon.  No luck with that either.  I phoned, and was promised the parcel the next day.  It didn't arrive.  And so on.... I won't bore you with the daily dash of expectations.  Waltons promised today  1pm would be the real thing.  Sadly, the driver saw the school initial W, and decided to take it to the Waterfront instead.

I had to laugh. The person in charge offered to fetch it and deliver it herself, and because I was dashing about this afternoon, we decided to meet half way in a deserted parking area.  She apologised, and handed me not only the stationery box, but a little brown packet with the following label for me to give to TD:

"We're sorry for making you feel blue.  We're going to keep working on being sharper but, for now, here are some treats for you."





(The fact that they had a nifty little rhyming label shows that TD was certainly not the only person who had started the school year writing her notes on pieces of paper that will need to be rewritten into the books.)  The gift was a kind gesture - TD loves stationery, and a few gel pens or a rainbow eraser with the little brush on the other end that smells of bubblegum  (remember those?) would have delighted her.  But no, the treats inside were chocolates and a sucker. So it was an insulin heavy gift, which TD consumed on the way to orchestra rehearsal. She came home with a high glucose reading.

This year looks as though it may be as chaotic as last year.  TD has hit the first term running, and has very little down time this week.  On Friday, she and a large number of fellow musicians, go away on the school's  annual band camp.  This is one of the highlights of her year, and is much anticipated.  It was on this camp a couple of years ago that a discussion about Star Wars led to a friendship and romance with O, who feels like part of the family now.

I have started stocking up with some provisions to supplement camp food.  TD is confident and adept at the diabetes management.  She has many friends who know what to look out for in lows and highs.  All should be fine.

Should.

That shadow follows me everywhere.