Turning the page

 

 

 

 

 

As one chapter ends, another begins.

 

This week ends the 27 year journey I have had with mothering my two offspring as children.  From Saturday on, I will be the mom of two wonderful, capable,  ......adults.  TD turns 18 - that magic age when childhood steps through an invisible veil into a new adventure of independence.  It is a process of course, and I will always fiercely be their protective mother ready to swoop in, when invited.  They are part of me, and turning 18 will not change any of our history, present or future.

But becoming an adult does open some exciting doors - it is the legal age for voting, for example.  And for driving.  And for drinking alcohol. TD has been studying for her learner's licence - the precursor to getting her driving licence. It has been a useful reminder to us of the more obscure road rules ( if you are carrying a load on your roof, it may not stick out more than 30 cm  from the bonnet, and must be decorated with a red flag sized 30 cm by 30 cm. No bigger, no smaller.)  I had... ummm... forgotten that.

 

Most parents will be a little anxious letting new drivers borrow the car.  Lack of experience, recklessness of some teenagers, and the notion of indestructibility that youth brings, means most of us stay up late and bite our nails until the teenagers have trained us to trust them.  It goes without saying that the drinking freedom holds the same fears.  Are our teenagers responsible enough to make good judgements?  We will find out soon enough I suppose.  TD will have extra responsibilities - checking her glucose before any decisions can be made.  (Alcohol has the double whammy of high sugars and diminished responsibility.  Driving and going low will be dangerous to all road users.) It is all part of growing up and letting go.

Happy birthday, TD.  You fill the world with compassion and kindness.  You are tough and determined.  You are gentle and humble. The world is yours, and I know you will continue to make it a better place for all of us.

And here I say goodbye to you and my blog.  Thank you for the company these last few years.  Thank you for taking an interest and making this a less lonely journey.  I will miss writing to you - it has been my grounding and thought space, but it is time to let go. My next chapter begins too.

                                                            But first....It's Time for Tea

Addendum! My new blog is at Comingback4seconds.blogspot.com if you are interested!!

“What we call the beginning is often the end. And to make an end is to make a beginning. The end is where we start from.”

T.S. Eliot

February 2021

It just happened to be Valentine Day two weeks ago when we decided we needed a day out.  Valentines day has always struck me as a celebration of the power of commercialism and going along with the flow mindlessly, rather than any romantic notions.   So, it wasn't a Valentine's picnic - it was just a much needed Smell-The Country- Air expedition.  I made egg mayo sandwiches and slapped some cheese and jam onto rolls, packed some flasks of hot water for the tea and coffee, made a few cupcakes and we were good to go. We picked up TD's significant other, and headed out to Betty's Bay.

We knew where we were headed - there is an botanical garden  with a very pleasantly priced indigenous plant shop, We have a few gaps in the garden and were scouting for hardy plants that can withstand our trial by error gardening method. It was a beautiful day - raining and windless - perfect for a hike up to a waterfall in the kloof.

The rain didn't last, and the walk was a meander up a river bed with shady trees and extrovert frogs.  It was a good day.

By contrast today is searingly hot - 37 degrees at 2pm, and my energy has evaporated. I can think of so many projects I could or should be doing, but it all seems too much effort.  TD has been back at school everyday since mid February, and we are settling back into routines and schedules. This has been good for her.  Glucose numbers react favourably to timetables and patterns, and TD has managed to get better control of the stubborn highs.

It is TDs final year of school.  Hard work, new challenges and leadership roles will accompany her on this year's journey.  Her official childhood is almost over, as she is about to leap off the cliff into the puddle of responsibility called adulthood.  But she will always be that magical person who talks to extrovert frogs on hikes to waterfalls.

 

 

Ketones and covid

Ketones.  The word has a  lyrical sound.....It makes me think of a music flowing pleasantly from appealing chords to melody, or of soft palettes of colour for creative expression. Ketones are not benevolent or pleasant though.  At least not for people with type 1 diabetes. (There are some  pancreatic-enabled people who choose a ketogenic diet of low or no carbs and high fat.as a weight control method) 

Essentially ketones are toxic acids.   Glucose is our usual source of energy, but if that glucose can't be used in the blood (that's the role of insulin), the body looks for an alternative source of fuel - fat. The liver processes fat into ketones and sends them into the bloodstream. People without diabetes can handle this acid in the blood, but for people with Type 1, the acidic build up  together with high glucose that can't be processed, is a life threatening situation.  It leads to DKA - diabetic ketoacidosis.  DKA can  cause damage to the lungs, brain and kidneys. It is to be avoided at all costs - it can be deadly and requires hospitalization.  

TD's glucose levels have been on the high side for the last while.  At the end of the year we met with the endocrinologist who thought TD was doing a good job of handling the stress of a pandemic, exams and diabetes.  2021 has not been the new start so many were hoping for, it seems to be a continuation of the 2020 mess with the promise of some light at the end of the tunnel.   TD's glucose numbers started to rise ....and rise... until last Saturday she was feeling lethargic, tired and couldn't bring down the glucose from 20s.  We needed to test for ketones. 

TD's glucose meter has the facility to test for ketones using a different test strip.  These strips are fairly expensive, and not covered by medical aid, so we don't keep too many in the house.  As luck would have it, the few we did have had expired, so TD (exhausted and dejected) and I  (anxious and flustered) went in search of more.  (I could not leave her at home in case she deteriorated and needed help).  The first pharmacy offered to order some in, and I could fetch them in a few days time.  The next had a ticket queue of at least 90 minutes wait.  It was quicker to drive the 15 minutes to a pharmacy that I know stocks  them on the open shelf.

A safe ketone reading!

Long story short, there were only trace ketones in TD's blood and we could relax a bit.  Getting the glucose down took a lot of patience, jugs of water and more insulin than she would usually inject in 2 days. 

But it worked, eventually, and the lethargy, dizziness, anxiety and fatigue subsided, and TD could carry on with her weekend.  This will always be a part of TD's life.  She will always have to keep control of her glucose, and avoid the highs as much as the lows. 

 I wish type 1 diabetes were preventable, but it is not. 

I wish avoiding it were as easy as obeying a few rules, like wearing a mask, washing your hands and social distancing, but it is not.

. Life throws us so many things we are completely unable to control.  So when we are given a challenge (like covid) that allows some measure of being able to keep ourselves safe, grab the opportunity to stay healthy with both hands. Please.

TD was in DKA at diagnosis.The build up of ketones and glucose was so high that she was in critical danger.  She survived because a dedicated pathologist ran her tests at night and phoned me at 2am to urge me to rush her to Emergency. She is alive because the insulin that was dripped into her saved her life. The kindness of the doctors and nurses surrounded us when we were  overwhelmed and bewildered. 

It is our turn to show that same dedication and responsibility towards the medical community.  Most of them are feeling overwhelmed and bewildered at the sheer number of people who need their care, and of the loss of life they see daily.  Keep being aware of the dangers of covid.  Keep the preventative measures as daily habits.  Keep safe.  Please.

 

 

 

 

 

 

 

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

 

 

 

 

Virus alert

I am not sure about you, but to me it feels as if the world is holding it's breath and waiting for better days. A lot of that hope is focused on the development of a COVID 19 vaccine that will allow us to become immune to this devastating virus. 

And it seems possible and probable that the medical community will be able to pull that rabbit out of the hat soon.  Or is that wishful thinking?

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

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

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

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

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

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

The art of masking

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

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

The wearing of them is where the real skill lies. President Ramaphosa shared the first challenge with the nation (and the world) when he struggled to put his mask on during a live TV screening.

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

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

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

Our first masked walk!

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

It's National Peanut Butter month

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

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

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

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

A beautiful and calm place to visualize

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

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

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

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


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

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

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

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

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

For the geraniums....

The tree had to go.  Our beautiful, climbable, hammock-swinging tree had grown too large for our plot, and the roots were threatening to cause even more cracks in the house.  It was a sad, but not difficult, decision as we simply could not live with a beautiful tree but no home.  A few Saturdays ago, with the help of a wandering band of tree-fellers, we cut the tree down, and then cut it up.

Sunlight flooded into our lounge , and immediately lifted our spirits (and showed the dirt on the carpet). There is usually a bright side to even a sad decision, if we care to look for it.

In my head I envisioned a change in the garden lay-out.  Grass is SO before-drought these days, so we dug it up.  We have decided to make little gardens instead of one big patch of lawn, and to create a number of flower beds using the tree logs to border garden or wood chip paths.  It is hard work, digging, axing roots, laying paths, planting geraniums, planning where the tea mug stumps go.  In my mind I can see the future garden, but at the moment you will have to graciously use your imagination when you come to visit.

Changes require a certain amount of bravery - we can get (too) comfortable with things that are familiar, and change can show things in a different light. It is also a realization that things could work better. (The engineer husband always says "If it's not broke, don't fix it") I felt, and I think TD did too, that we needed to make some changes in her diabetes management.  The last few months have been difficult, glucose numbers wise.  We had, I think, built solid foundations for diabetes management over the past few years, but some encroaching issues were causing cracks.  Safe guarding TD's health is not as simple as uprooting a tree however -Oh I wish it were - so we needed to see where things are not working optimally and how we can redesign a system that helps create a calmer glucose experience for TD.

On my request, we have gone back to writing a food diary.  It helps.  Somehow recording the day's insulin shots and food intake along with any notable activities makes the process of glucose control more mindful.  TD has increased the basal (long acting) insulin dose - only by one unit, but that is how finicky glucose control is.  Her bolus (short acting) insulin at breakfast is taken 18 minutes before she eats.  Not 10, not 20 - 18 seems to be best.  You can see how much attention to detail your body wants you to take.

This all helps, but still does not eliminate the waves of highs and lows that TD surfs daily.  Some of her lows have been extreme lately.  Did you know that hot water can cause someone with diabetes to go low?  (The blood vessels dilate from the heat and cause insulin to be more rapidly absorbed than usual.) So taking insulin just before a lovely bath or hot shower can cause a hypoglycemic event.  Last weekend TD generously offered to have a rare and sacred bath, as the geraniums were looking a bit droopy and needed watering (we recycle of course!) She went low, and called me in to help.  As I wrapped a towel around her, fed her glucose and waited until it was possible to lift her out the bath, we both wished for a magic wand that would make this horrible disease go away. 

But in the absence of magic, we will look for shafts of sunlight, and embrace helpful changes.  Things may look a bit wild and unkempt at the moment, but just wait until next year when the fruits/flower of our labour will create a beautiful environment.  Well, That's the hope, anyway.  And if not - we can try again.

It takes a village to do the homework......

And breathe......


Greyton is a pictuesque village about an hour and a half drive from Cape Town.  It nestles quietly in its green surroundings in the the shade of the Riviersonderend mountains.  The word I most associate with the place  is Tranquility.  TD's grandparents had a thatched cottage there some years ago, so I am familiar with the beauty of the area. I took TD to see the house (which has changed a great deal since my parents lived there)  on our first Mother/Daughter getaway a few years ago.  Quaintly, the new owners kept the name : Snail Morning.  That gives you an idea of the pace and focus of the area.

But, once a year, around this time, Greyton swarms with teenagers.  TD's school sends all the grade 10s on a camp to Greyton.  Luckily, they go in three batches of about 70 at a time, and after 20years, the townsfolk are used to them.  In fact, they help the learners with the questionnaire about the place that hasn't changed in all the years that the school has been visiting, even though some of the questions are now irrelevant.  It is part of the quaintness of the village that they embrace the invasion and kindly help to share the homework.

Of course I did my usual scare/educate routine for the teacher a week before they left, trotting out the same old info sheets that I have been using since grade 6, modifying a few details along the way.  And as usual, the teacher was eager to hear, learn and inject the grapefuit with an expired emergency kit.  TD's numbers have been all the place (I might have mentioned that once or twice recently 😏), so the practice round was very necessary.

The run up to the trip was epic.  The Saturday night was the much anticipated Grade 10 dance.  Ah, TD and all her friends looked beautiful, and had a magical night. On Sunday, after a sleep in,  we celebrated our wedding anniversary in Wellington and then needed to play Settlers of Catan, so we did. On Monday, TD had a regular school day, followed by extra murals and stayed to see the dress rehearsal of her friends one act plays. (Her school day lasted from 7.30am to 10pm)  So when Tuesday rolled round, TD was somewhat tired.

Breathe....

I was a bit anxious about this time away, more so than other times.  From my chat with the teacher, I knew TD was going on a hike into the mountains in a small group with no adult accompanying them.  I feared a low.  And sure enough, TD had a 3 half way into the mountain.  Luckily she caught it early enough (she could still think rationally and open her glucose) and dosed herself with sweets, and some  friends helped her.  She had several more hypoglycaemic events over the next 24 hours, and  even more hypers.

The highs seemed to concern the teacher more than the lows. TD went very high during the night - above 20.  Although this is dangerous, it is not as dangerous as 3 in the mountains, but I think maybe the teacher was mixing up the hypos and hypers.  A very easy thing to do when all this diabetes stuff is new and overwhelming.  She kindly checked TD at 2am and suggested TD take insulin to bring the level down.  TD phoned me to chat, and both she and the teacher messaged me a number of times during the early hours of the morning, and by breakfast time, TD had stabilized.  I bought the teacher a big box of chocolates, because I thought it might be going overboard to buy her the Superhero cloak she deserves.

And breathe...

TD came home safely, having had a wonderful time.  I thought she might be worried about all the highs and lows. "How was it?" I asked.  "The chocolate shop was closed"  she said.

And breathe.

The picturesque village of Greyton

Thursday 5 September - A day for change

It's been an Elgar sort of week for me.**  Today TD, Andrew and I are dressed in black, along with thousands of South Africans who have had enough of the gender based violence that is destroying the fabric of every day life. It has been a devastating week with daily reports of women and girls being raped, killed and kidnapped.  A heaviness settled over me that even Elgar could not dissipate.

TD's school responded to this tide of anger and emotion by allowing the pupils a day of silent protest yesterday, and by allowing the school community to protest on Main Road outside the school today.  Yesterday TD penned large black Xs on both hands to show people that she had chosen not to speak;  the silence was to represent the many voices of victims who have been silenced by force.  Today Andrew and I joined in the public protests - he before school and I during lunch hour.  Today was anything but silent.  The air was filled with slogans like "Enough is enough" , "No means no".  Cars hooted in affirmation of the protest.  The teenagers made sure that they were both seen and heard.  It was empowering to be part of the group, and quite healing to hear the anger and determination of the upcoming generation.  Perhaps, at last, this group of young adults will be the power of change we all need.

Today also happened to be the day that TD was scheduled to speak in front of her grade in the final round of a public speaking competition. She had chosen to speak about Athos - the Greek monastic island which prohibits all female beings (except cats, insects and birds) from stepping on this sacred ground.  It is well worth a quick Wikki read if you are interested in this bizarre sense of entitlement and superiority of men that is entrenched and policed.  How apt that she was dressed in black whilst delivering this speech.  And she used the opportunity to reinforce the need for gender attitude changes that are so long overdue. She may have been preaching to the converted but sexism is so entrenched in society that even the highest level of government thoughtlessly told women to stop letting men abuse them, instead of admitting that that abuse by men is the real problem.

TD is a warrior.  Discrimination, language use, respectful pronouns, are some of the issues she champions.  I admire her for this.  It gives me hope that things don't have to stay the same.  She champions the T1 cause too, answering questions on her Instagram account from people who just want to know more about how she feels about living with diabetes, or how she got sick, or her everyday routines for keeping alive.  In between all this she has had a horrible few glucose weeks - the graph of glucose numbers looks like a theme park hell-ride. She had to be put on a drip a couple of weeks ago, she has had to have a  three day restricted diet to try to figure out what is going on.  It has been scary and exhausting and draining.   And yet, she stands up and fights for a better world.

Perhaps the time for silence is over.  We need new voices to fight for humanity - loudly, passionately, coherently, persistently.   Silence is passive.  Let's actively seek to fight to stop male on female violence.  No means No.  Enough is Enough. Leave our daughters alone.

**   From my blog in April 2018   "Elgar's music - particularly his cello concerto (in E minor, opus 85) speaks to me in a deeply profound way.  The tempo and mood resonate with something in the tension I feel, and externalizes it for me.  And once it is out, it can dissipate and leave me calmer."

Snow White and the 7 Diabetic Dwarfs

TD recently wrote a play about the damaged characters in the fairy tales that we tell our children:  Pinocchio the compulsive liar, Goldilocks with her sense of entitlement, Rumpelstiltskin who has anger management issues...and a few more.  It had a clever setting - a group therapy session - and a good take-home message:  should we still be telling very young children about these dubious characters, or should we rather affirm good morals of real life heroes?

She did not include Snow White as one of her characters, but I think the story deserves some of our attention.  How about Snow White and the Seven Diabetic Dwarfs.

They are, in no particular order:

Sleepy:  A character that needs no introduction to any one in this day and age.  Life is frantic, full of things to do, people to see, YouTube videos to watch... Who can honestly say they consistently get their recommended 8 hours of shut eye? People with T1, and their families, often get less sleep than most - blood sugars need to be tested during the night.  It is easier now that TD wears the CGM (Continuous Glucose Monitor) because at 2am all I have to do is hold the sensor to her arm and check she is "in the zone" (see previous post), correct if low, ignore if a little high, and waddle back to bed to sleep a bit more.  Before the CGM days, TD had to wake up, prick her finger, do the blood test and then proceed with the next steps. CGM for the win!

Grumpy:  Following straight on from Sleepy, we have Grumpy.  It can be hard to function optimally on disturbed sleep, and grumpiness is often a by product of tiredness. 

Dopey:  This is another effect that Sleepy has on us. If it has been a long night, I sometimes walk round in a fug of forgetfulness. I know there is stuff to remember, but I just can't figure out what it is I am forgetting.  The extra testing kit?  Buying more Super Cs? Changing the needles on the pens?  Luckily most of that has become habit now, and the things I forget are less important...like where I left my glasses or how many cups of tea I have consumed...

Sneezy:  Do you also sneeze when you are tired?  It seems to be quite common.  TD takes Allergex nightly to alleviate the symptons....if she forgets, her eyes water, her throat itches and she sneezes.

Bashful:  There are only a few situations where TD prefers not to inject insulin in public spaces.  Mostly she has this Bashful thing under control.  Of course, dresses, dungarees and other clothing that make injecting into the stomach for fast acting insulin impossible, are a problem, and TD excuses herself to inject.  (Never inject through clothing, in case micro fibres are pushed under the skin, leading to possible infection....)

Doc:  Every T1 family's favourite of the Dwarfs.  It is so important to have a good medical team to partner with.  TD has great people on her help list : the endocrinologist is great, the GP is wonderful and most other medical practitioners are kind and understanding.  Quite frankly, if they are not, it is time to move on.  Trust is a huge Doc issue.  We have been very fortunate in the people who help TD.

Happy: Sometimes the challenges are overwhelming, but it is important to allow ourselves to be Happy.  Not all the time, obviously.  Adversity is a great teacher, but happiness is a state that I need around me.  I am happy to be able to share my life with the people I love.  I am not happy that TD has diabetes, but I am happy that she is TD, and that seems to include diabetes, so that is just how we roll.

Fairy tales are flawed.  Snow White is not a particularly positive role model for children today.  I reread the story to refresh the details in my mind, and the whole beauty fixation/role of females/ being saved by a handsome prince  sticks in the throat a lot.  But, seeing as we are all flawed too, perhaps it is important to retell these tales to our children and embrace the notion of happy ever after.  Stories give us a chance to explore villains and heroes, right and wrong, real and fantastic.  The 7 dwarfs are an odd bunch, but rather relatable don't you think!

The Seven Diabetic Dwarfs

The Blue Door

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

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

 

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

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

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

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


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

– The Empire Strikes Back.

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

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

Epic Fail

If something stops working completely, that is a clear indication that something is wrong or it is broken.  But if something still functions, but gives incorrect data that looks feasible and correct, that is an epic fail. That is what happened last week with TD's Continuous Glucose Monitor (CGM), and I was not best pleased with that piece of technology.

Late Wednesday night/ early hours of Thursday morning, the CGM graph line looked astoundingly impressive.  The number were in the perfect zone (5 -6) and the line was steady, flat and consistent.  But then things took a dip for the worse, and TD's glucose plummeted to the 3s, then 2s  (so the graph told us later...) and finally when Andrew did the 6am reading, the display just said "LOW" i.e. no positive number at all.  That means that TD's glucose level was so low that she should have been unconscious or dead.  But she said she was feeling fine.  Talking is definitely a sign of being undead, so that was reassuring for us.  She ate Super Cs, and then she tested using the old fashioned way - by pricking her finger and testing the blood sample.  This reading said her glucose level was 12 - a little high, no doubt from those Super Cs.  We compared that reading to the new techno CGM.  It came up with 2.6.  You can see the problem - this is misinformation at its worst.  The sensor in her arm continued giving false readings all day, until TD decided to rip it out, as it was causing more worry than it was worth.  (And it is worth quite a lot - each sensor, which is supposed to last two weeks, costs just shy of R1K).

Symptoms of a severe glucose low (hypoglycemia)

We waited until the usual switch over day - Saturday - to replace the sensor, and touch wood, it seems to be working fine.  When it read 2.3 today at lunch time, TD really was horribly low, shaking, unable to function and felt awful.  It really was an emergency.

Sometimes I think we rely on technology too much.  TD's reason for delaying the use of technology and the CGM was so that she could learn to listen to her body more. And that has served her well.  She knew she wasn't low on Wednesday when the meter told her she was, and she knew today that she was in trouble, and for that I am very grateful.

It shook me up a bit.  We have to trust this technology to know what TD's body is doing, so malfunctions confuse me and knock confidence levels.  I needed to keep an eye on TD last Thursday - I didn't trust the universe at all that day.  It was a school free day (exams) so she and I had a quiet day here.

I wonder about my own life at times.  I need to function optimally - not display false readings of situations or misjudge which direction things are going.  Writing has become my old fashioned way of checking myself.  It is like fitting a working sensor. And new technology allows me to connect with a community.  Your reading my blog encourages me, and I thank you.

A Sharp Decline

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

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

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

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

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

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

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

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

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

Winding road down into De Hel valley

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

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

14 November and ice cream

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

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

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

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

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

Marketing magic

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

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

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

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

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

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

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

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

Telling you how I am feeling

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

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

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

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

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

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

                 

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

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

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

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

 

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

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

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

A moment of clarity

Happy New Year!  I am not one really for making new year resolutions. Are you?  My logic goes something like:  if you want to do something or change something, it is best to start straight away - there is nothing magical about the days rolling over to a particular number.  But I do have some odd notions about "laying ghosts to rest."

So, today, I am sitting at a table at a restaurant in the Company Gardens where, just over three years ago, TD, my excellent friend K, and I sat having a Christmas outing and catch up chat.  Some memories of that day are sharp, others a bit fuzzy.  I remember the three of us going to the National Art Gallery and being surrounded by great beauty and/or thought provoking works.  I remember warm sunshine as we walked through the summer gardens to the outside restaurant, and sat at a table in the shade of lovely old trees.  I remember ordering a chocolate brownie for TD as she hadn't been hungry at lunch time.  Everything should have been lovely, but TD looked at the food (normally her favourite), tried the tiniest nibble and tears welled up in her eyes.  She couldn't eat it. She was painfully thin.  I have to admit I felt a bit frustrated.  I didn't know until the next day that she was DKA.  I knew nothing about T1.  All I knew was that I was worried about her.

Sometimes places hold memories that are full of fear.  This restaurant is one of those places, and I have avoided it.  So, I am sitting here, alone, having tea, hoping to forgive myself for my blindness and ignorance and dangerously slow reactions three years ago.

This morning, TD and six friends and I went to visit the same art gallery.  The exhibits have, of course, changed.  The girls wandered round, splitting up into kindred groups.  I don't think TD could hear the thumping of my heart.  It was good to revisit the gallery and paint a different picture for myself.  TD and her friends are now wandering around the national museum, while I excused myself to sit here and drink tea.  It has been good to revisit not only the places but also the memories and depths of the self, and to look at them from the distance of time and expand them with laughter, happiness and maybe even forgiveness.

Resolutions come for me in moments, rather than years.  I have moments of clarity where I can see the bigger picture.  One of TD's friends brought home made chocolate brownies for them to share this morning.  She ate (more than one) happily, seemingly oblivious to my deja vu moment of three years ago*.  I resolved then to let go of the shadow of the tea room and gallery.  Or rather to let go of the fear of what happened three years ago.  TD, surrounded by friends and chocolate brownies, helped me replace the fuzzy memories with new experiences.

All the best for 2018.  May your have many moments of resolutions that bring you happiness.

* TD read the blog and showed me yet again, that she is way ahead of me in her kindness.  She deliberately set up today to remake the memory for us both.  Thank you TD.

 

Party tricks and food

One of TD's party tricks is that she can wiggle her ears.  It's a family trait passed down from her father's side, and quite impressive to those of us who don't have that level of facial muscle control.

Another party trick is that she can tell you exactly what she ate on any given day for any meal since Christmas 2014.  Admittedly, she will need a moment to look up the info in one of her ten food books, but the information is all there should anyone be interested in such trivia.  We have kept a food diary for TD since diagnosis.  Initially it was a life-saver for us bewildered and frightened parents.  Suddenly mealtimes had to ordered and measured and carbs had to be counted, and we had to make sure TD was getting the right food matched with the right insulin dosages.

Almost three years on and we still write in the book every day.  The format and function have stayed basically the same, but we have expanded the information to include anything notable that happens on a particular day.  So an entry may include "Bad day at school" or " Sleepover at friends." or "Knew she was low - shaking badly"  or even "Celebrating her distinction in music."

All this information is useful - we are able to see how food, stress, life, illness and particular situations influence glucose levels, and we are able to see where adjustments (of food and/or insulin) need to be made.

It serves another function too.  Everyday we sit down and chat to TD about her day - what she ate, what she injected, what the next day holds, how she is feeling - a general catch up. (Not that we didn't talk before - rather this is The Practice of Communicating.)

So there are ten volumes stacked in my cupboard creating a history of TD through food.  Food plays such a pivotal role in our lives - it is a form of communication in itself.  We share meals with friends, express our love and concern for others with a hot meal, celebrate achievements at restaurant tables, bake cakes to mark birthdays.  TD's school has a bring and share cake roster every Wednesday, because it is A Very Nice School.  Memories often are made up, in part, of tastes and flavours.  Recording all this seems like a good idea.

TD has a few other party tricks up her sleeve too.  She can recite long passages from her favourite books.  She can sing in a voice that sounds like Donald Duck. She can rattle off The Goon Show scripts, mimicking the characters' voices. She can inject insulin so efficiently before eating that you might miss it if you blink.  And she can do all of this whilst wiggling her ears at the same time.