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....

 

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.

The silence of sadness

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

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

Sunset at Clifton

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

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

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

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

Load Shedding

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

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

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

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

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

My personal load shedding techniques include writing, talking and allowing myself to spend time in nurturing spaces. These help restore sapped energy.  That is my way of re fueling myself when times are tough..  So to those of you who offer support to us as a family and me in particular - thank you for giving strength and stability to our grid. 

 

Load shedding is a lot easier if it is predictable.  We have print outs of when our electricity supply will be cut depending of what stage we are on.  We have apps.  But every so often unexpected breakages occur at South Africa's power stations, and our best laid plans are disrupted.  It is very frustrating.  In the middle of a carefully planned schedule of when to do what, we are once again plunged into darkness, losing whatever we haven't backed up on the computer, the clothes washing half washed, and garage doors that won't open. 

 

Optimally, maintenance and repair should be on going, so that nothing breaks down.  Money should be spent on creating new power sources, preferably renewable, but life of a T1 doesn't always work that way.  Sometimes it seems there isn't time for some maintenance down time, and we rush from crisis to crisis.  This needs to change.  If we spend more time planning for long term health and happiness, things will be calmer. 

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

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

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

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