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.

 

 

 

 

 

 

 

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.

 

 

 

 

 

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....

 

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.

Supplied Western Cape government

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

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.