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.

 

 

 

 

 

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

 

 

 

 

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.