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

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."

Love Letter : a card game

So, this is how we roll:  TD was sick.  She had a bad dose of gastric flu, and couldn't keep any food in or down.  She had a high temperature, was listless and unable to eat.  I took her to the GP who has extensive and personal experience of T1 diabetes.  I trust him.  (A lot of other people do too - the waiting room was packed and we had a couple of hours to chill before he could see us.)  TD's ketones* were over 2  -that is too high, so he wanted to put her on a drip straight away.



The surgery nurse hooked her up in one of the treatment rooms, and I phoned home to say we would be another hour or two.  TD was stressing for two reasons: One – she does not like drips.  She has bad memories from the time she had a drip needle in her hand for a week at diagnosis.  And Two – it was the last day of her brother’s holiday in Cape Town before he had to fly back to the UK.  She didn’t want to miss out on those last few hours with him.

A few minutes after my phone call, my husband and son arrived at the doctors’ rooms.  TD’s brother had brought with him an-easy-to-play-even-with-one-hand card game, and so the four of us enjoyed some quality family time while the drugs and saline dripped into TD’s system.  Because this is how we roll.

The next day, TD had not responded sufficiently to the meds, so after dropping our son at the airport, and having spoken to Dr T, we took TD to be admitted to hospital.

Another drip in the emergency room :  this one took two nurses, one doctor and more than four attempts to put in.  TD’s veins are almost invisible, and even when found,  they are not receptive to big IV needles.  TD was distraught.  I held her head, shielding her eyes from the puncture bruises and tried to calm her a bit.  She dislikes hospitals even more than she dislikes drips.  And this time she had no brother to cheer her up.

The nurse on duty had a larger than life attitude and was Fabulous! The doctor on duty just seemed flummoxed. The whole diabetes thing seemed to throw her a bit.  She ran some blood tests, put up the drip, but was ready to send TD home when the blood results came back, without wanting to give the drip time to do its thing.  TD had high ketones -4 on admission.  We told the doctor we would wait for the drip to finish.  I massaged TD’s feet, Andrew played a logic game on his phone with her, the Fabulous Nurse checked in on us every now and then.

At last, a couple of hours later, the drip had dripped its last drop.  The Nurse retested TD ; Ketones 2, Glucose 22.  Now the doctor thought there might be a problem.  She suggested giving TD 10 units of fast acting insulin.  Andrew and I looked at each other.  We suggested treating her at home.  10 units was a worryingly large amount of insulin, and we were worried she would go too low.  TD was discharged, and we took her home.

Instinct can be a useful tool, and in this case, we were right.  By 2am, TD’s glucose number was down to 5, with no extra insulin given.  We had been right to monitor her at home.  The gastro cleared up with the prescribed antibiotic.  It had been a wobbly week,  and one that allowed a lot of introspection for me about what is important in life. Somebody stealing the house numbers off our front gate, a disappointing trip to a hairdresser, travel plans getting complicated - all background in that same week- all became trivia and annoyances rather than anything to worry about. The important stuff was all ok – TD got better, we had had a lovely family holiday time together, and when things get a bit rough the four of us form a gridlock of security for each other. I imagine that we were quite a sight, crammed in a small room, TD lying on the bed with a drip, the rest of us trying to squeeze into the space without getting in the way too much, playing a card game (It is called Love Letter if you want to get a pack!), guessing  as to who held which cards.  There were a few amused glances thrown at us. I don't mind what others think - because when a 14 year old is dealt the diabetes card, she needs to be surrounded by love and humour.  And that is how we roll.

A note on ketones:  If a person's body does not have enough insulin, and so glucose cannot be converted into energy, the body looks for alternative energy sources and starts to break down body fat and muscle.  Ketones are the acid by-product of this process, and their presence can quickly lead to DKA (Diabetic ketoacidosis) - a life threatening situation.

 

Dear parents of T1s

We are not alone.  We are surrounded by people who care and can help.  Sometimes it seems that all our energy is concentrated on keeping our T1s safe and on the glucose straight and narrow, worrying about numbers and diets and uncontrollable stresses.  We get so focused on that, that we forget to pay enough attention to our own worlds.  Speaking only for myself here, I know that is not healthy - for TD, my family or me.

Everyone is part of a community, whether we acknowledge this or not.  Sometimes it is easy and people surround us, enfold us and support us. Sometimes it requires some effort on our part and we have to seek out communities where we can be supported.  None of this comes easily to me. I am used to coping.  I like to be in control to a large degree.  I like to be calm.  Nothing about children coping with T1 allows for these things.

When TD was in intensive care in hospital at diagnosis, we (husband, son, myself) were on autopilot.  You know how it goes - you cope because you have to, you deal with things as they get thrown at you.  It is a hyperalert state.

Into this world walked  P and her 9 year old daughter. We had met once before when they had just moved to Cape Town and a group of moms and school kids were enjoying a sunny day at a park.  She is Godmother to one of TD's friends.  We had met  before her daughter had been diagnosed with T1 six months before TD's diagnosis.  And she had come to tell me that I would get through this, and her daughter was there to show TD that she would be ok and they were both there to tell us  we were not alone.  This was a huge gift.  In the weeks and months that followed P helped me through with kindness, her vast knowledge about diabetes, and with friendship.  I am so grateful.

Other support comes from complete strangers: people far away in online communities who offer support to anyone needing it. (A big shout out to the TuDiabetes community!)  Friends, family, counselors all form part of the safety net.  My friends - who check up on me, drink tea with me and listen to me probably aren't aware of the huge role they have played.  Don't be shy to ask for help - it doesn't mean you are not strong, it means you are human.

There is a wonderful saying in my country: "Umuntu Ngumuntu Ngabantu"  Roughly translated it means "A person is a person because of people."  We are all in this together. Community is our strength. To all the people who make up the jigsaw puzzle of my life - thank you.

If you are anything like me, you will be reading this with a mug of hot tea in hand.  But welcome to the coffee drinkers too.  Tea has accompanied me through many of life's occasions - the hiccoughs, the hellos (and goodbyes) and the hell-weeks.  An aside: I once confessed to a doctor that I drank 6 cups of tea a day, and he told me to give up or reduce immediately.  This was a turning point for me - I realized I had to find a new doctor....  What I have done in the interests of health, however, is to cut down on sugar.  From 3 spoons a cup (gasp, I know, but I was a skinny youth with no insight into tooth decay and sugar highs and lows...) to now having none. At a tearful airport goodbye, my sister-in-law,J, challenged us both to cut out sugar, and we clinked airport mugs and agreed to do this together. But, as we live on different continents, I sneaked a spoonful in every now and then.  I did let her know.  I am, generally, the honest sort. (OK - I do sometimes have more than 6 cups a day.)

But I gave it up completely two and a half years ago, when my daughter, then aged 11, was diagnosed with Type 1 Diabetes (T1).  So that is what this blog is really about: being a mom to a beautiful, talented, sensitive teenager who lives with needles and glucose test and a backdrop of angst about hypos and hypers*

Having sugar in tea has nothing to do with diabetes type 1.  Nor does eating sweets, drinking fizzy drinks, a sweet dessert tooth or any other life style factor.  It is an auto-immune disease; the body attacks it's own pancreas and insulin production is halted.  This means that the body is unable to unlock the cell walls to allow glucose (energy) to reach the cells.  So there is a build up of sugar in the blood stream, and a lack of energy in the cells.

There is an important distinction between type 1 and type 2 diabetes, and not too many people get that, unless you have stumbled across these diseases in a personal way.  Type 1 people are insulin dependent, the onset is sudden and life threatening.  Type 2 has a slower progression and can usually be controlled with diet, healthy lifestyle and if necessary, some insulin.

But you probably know that.  In fact I am hoping to find people who know all sorts of things about diabetes and mothering and compassion and well....anyone really, who has time to join me on this journey.  So - if you have Time for T, let me know and we can chat.


*more on hypers and hypos another time...