Friday, 26 April 2019

Fuzzy lines

Ed Sheeran toured South Africa last month.  TD and friends, being star struck fans, had booked tickets last July to see him live in Cape Town.  She (and Andrew) enjoyed the evening very much.  I mention this only because we had double booked the date.  TD was meant to see her (still wonderful) endocrinologist on the same evening as the concert. Dr M agreed that it would be more difficult for Ed to change his dates to suit TD, so she graciously rescheduled the appointment.

I find some doctors intimidating.  But Dr M is gentle, kind, compassionate and an intuitive listener (as well as being an expert in her field).  Despite this, sometimes my heart feels a bit heavy as we troop into her office.  TD's glucose numbers, as you will have gathered from recent posts, have been on the high side. Visits to the endocrinologist are about every three months, and the Hb1c test (that measures the average glucose levels over a three month period) is used as a benchmark of sorts as to how well the diabetes has been handled in between visits.  At the end of 2018, before the CGM, it was 7.5 - significantly higher than the golden standard of 5.6 to 6.6.  This time it had crept up to 7.9. To be honest I thought it would be higher, but this is still damagingly high.  There is no judgement regarding this number.  I know that. And yet....   And yet I feel I should have done more to help TD with the diabetes control.  Of course, the number is a tool to see how the sugars are being handled and to work out systems to achieve and maintain better control.

Tresiba Insulin pen
Dr M suggested we change the type of long acting insulin.  Not all insulins are made equal, and continuing research is providing better formulations of insulin.  The one the endo suggested is called Tresiba, and it is meant to be the most effective for steadying the glucose line.  It sounded  just like what TD needs.  It is also more tolerant of fuzzy times - it is given only once every 24 hours, and if that stretches to 27 hours that is fine too.

You know what this means!  TD, Andrew and I sat wide eyed and open- mouthed thinking about the possibility of sleeping later than the usual 5.45 am that has been our pattern these past 4 years.  Think of weekends and holidays!  Think of a morning lie in!

Of course, the main reason for changing is that it should help to stabilize TD's glucose numbers.  The roller coaster Ups and Downs impact her everyday life in a way that most people cannot comprehend. Here's hoping Tresiba is a great leveler.

Fuzzy clouds.....because why not!!
I called this post fuzzy lines because another thing our visits to the doctor emphasize is that, although it is definitely TD 's diabetes and her need to handle it, we, as her parents are partners with her in her health and happiness.  So the lines become fuzzy.  Diabetes is part of all our lives.  We have always tried, and continue to try, to give TD as much independence as is safe and as much privacy as is possible.  The boundaries between children and parents are sometimes rather blurry - we want to hold them close and let them fly all at the same time.  Those blurry lines contain so many pixels of infinity, so many shadows of experience.  And the squiggly shape of those fuzzy lines is a complete circle of  love.

I will let you know how the new insulin works.....after my Saturday lie-in.



Wednesday, 10 April 2019

Our Road Trip in numbers


Number of nights away: 6

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


Number of mountain passes: 27

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

Number of glucose highs: 52

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

Number of tyre changes: 3

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

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

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

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


Number of pairs of jeans worn by TD: 1

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


Number of hours spent with wobbly legs: 2

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


Highest Glucose reading: 22.2

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


Number of eccentric locals:1

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


Number of memories: too many to count...

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

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