Time for T
An open space for anyone interested in diabetes type 1. I look at the aspect of "mothering diabetes" as our daughter was diagnosed with type 1 when she was 11. All readers welcome to chat .... If you prefer to contact me personally, please email wfjs67@gmail.com
Friday, 12 March 2021
Turning the page
Sunday, 28 February 2021
February 2021
It just happened to be Valentine Day two weeks ago when we decided we needed a day out. Valentines day has always struck me as a celebration of the power of commercialism and going along with the flow mindlessly, rather than any romantic notions. So, it wasn't a Valentine's picnic - it was just a much needed Smell-The Country- Air expedition. I made egg mayo sandwiches and slapped some cheese and jam onto rolls, packed some flasks of hot water for the tea and coffee, made a few cupcakes and we were good to go. We picked up TD's significant other, and headed out to Betty's Bay.
We knew where we were headed - there is an botanical garden with a very pleasantly priced indigenous plant shop, We have a few gaps in the garden and were scouting for hardy plants that can withstand our trial by error gardening method. It was a beautiful day - raining and windless - perfect for a hike up to a waterfall in the kloof.
The rain didn't last, and the walk was a meander up a river bed with shady trees and extrovert frogs. It was a good day.
By contrast today is searingly hot - 37 degrees at 2pm, and my energy has evaporated. I can think of so many projects I could or should be doing, but it all seems too much effort. TD has been back at school everyday since mid February, and we are settling back into routines and schedules. This has been good for her. Glucose numbers react favourably to timetables and patterns, and TD has managed to get better control of the stubborn highs.
It is TDs final year of school. Hard work, new challenges and leadership roles will accompany her on this year's journey. Her official childhood is almost over, as she is about to leap off the cliff into the puddle of responsibility called adulthood. But she will always be that magical person who talks to extrovert frogs on hikes to waterfalls.
Saturday, 30 January 2021
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.
Monday, 28 December 2020
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.
Sunday, 22 November 2020
Betrayal
⏹ Not for sensitive readers. I am banging this blog out on a Sunday morning because the words are tumbling inside me and curdling my sense of peace. Betrayal is a strong word, but it sums up what I have been feeling the past few days.
Speedy attacked Tolstoy with an intent to kill. (For any new readers to this blog, I am referring to two of the free range tortoises that allow us to live in the house in their garden.). It was Friday morning, and TD was taking a study break (chemistry this time) and wandering around the garden. I heard anguished cries which got more and more desperate sounding. TD was standing with tiny Tolstoy in her hand, tears streaming down her cheek. He looked limp, with his head lolling to one side. She choked out what she had found - the older, larger tortoise, Speedy, had turned Tolstoy on his back, and was biting at his neck. The strong beak had bitten the eye and mouth and both looked beyond healing. The immediate action was clear. I gently held Tolstoy, and TD put a very angry Speedy in a confined space. She put him in her fenced off veggie patch.
Poor little Tolstoy. Poor TD. Both needed a lot of calming, and soothing before we could even assess the damage. The swollen face and offset jaw and damaged neck didn't give us much hope for his survival. But he pulled through. The eye is still too swollen to see if he will have sight again, and the jaw seems to be healing. We made a "nest" home for him in a cardboard box, and brought him inside to watch over him. Over the weekend, TD upgraded his home to a larger wooden crate that she made, and put some homely plants and gravel in it. This tortoise is going to need intensive care for a while still.
Tolstoy in the ICU TD made |
Initially all TD could feel towards Speedy was Anger with a capital A. I think the feeling was mutual. Speedy ripped up the herbs in her garden, and trampled the leeks. Too angry to look at him, we left him there overnight and concentrated on helping Tolstoy. On Saturday morning, I prepared a portion of the garden for Speedy to live in by himself.
TD and I agreed that this incident was raw nature. We tend to personify things some times - Speedy was obeying some natural instinct to defend territory, or assert dominance. But it felt like a betrayal. What if TD hadn't been there at the right moment? What if Tolstoy never completely recovers? The garden, which has recently brought us so much pleasure, went gray in a mist of the betrayal of nature.
I reacted strongly too. I felt broken. This beautiful creature was damaged by a phenomenon of nature under my watch. I hadn't picked up any signs or been quick enough to avoid the damage. I felt drained. But as with all crises, one copes and deals with circumstances to stabilize the situation. The recrimination comes later. The what ifs. The anger. The acceptance that there is no fault to assign. The "we can live with this" attitude, and Gratitude for life. Diabetes feels like a betrayal. One expects a body to function properly, and out of nowhere, suddenly it attacks. Nature can be so cruel. But we learn to trust again, to accept, to be grateful. Tolstoy survived. TD survived. We will be OK.
Speedy's new garden of isolation. |
Sunday, 15 November 2020
Learning to Idle
Many moons ago, before the TD era, I was involved with teaching adults who had been denied an education because of the apartheid system, how to read. It was immensely rewarding to meet these strong, determined people and share my love of reading and writing with them. I might have taught them how to read, but they taught me so much more about life. The slogan adopted by the forum I belonged to was "You're never too old to learn". Learners ranged in age from 30- 85, each one inspired me with their tenacity and determination.
It is never too late to learn, but as I age, I think it may become more difficult. We may have to unlearn stuff first, or we may have to put aside the many distractions that "adulting" requires. We may have to unsettle ourselves from a comfort zone, or gain some courage to find self confidence.
TD is hard at work as I write this, studying for her Grade 11 physics exam, paper 1, which she writes tomorrow. She has tackled this work head on, and should be proud of her resilience and determination. It has been a difficult academic year for most kids.
I like to think I am still open to learning, even if I haven't tackled big subjects - like learning Swedish or where to find the unmute button on a zoom chat(!). Diabetes certainly provided (and keeps on giving...) our family with many learning opportunities. Some of it is obvious, like learning the basics of what the pancreas does, why insulin is needed to "unlock" the cell walls to allow glucose to be absorbed from the blood to the cells to give energy... Some of it is more subtle, like learning which are long acting, which are fast acting carbs, and some of it is learning how to read one's own body and how life and emotions affect us physiologically.
Although TD has had diabetes for 6 years now, we need to keep learning and adjusting so that she can live her best life. I am learning to step back more into the shadows as TD leaps into adulthood. We will always be here for her, but she must have all the tools and confidence at her disposal to nag herself about checking her glucose level, and decide for herself if the extra treat is worth the toll it will take on her body.
But enough about us. Here is a new word for you to learn : Aylyak. There is a village in Bulgaria called Plovdiv that has adopted an aylvak life style, and has become famous for it. This was brought to my attention by Pam, a gentle house guest who stayed with us for a few days recently, and who shares my love of reading, writing, gardening and creativity. She forwarded a BBC travel article she had read, and it fascinated me.
The word itself is not easily translated into English : happily idle seems to be the closest definition. We so often put a negative slant on being idle, but here it is venerated as a way to live your best life. Slow down, don't get flustered, enjoy where you are, listen to the inner and outer worlds you inhabit. Be happy. It is, apparently, about finding time to just be, without expectation or judgement. I so like that.
TD having a break from physics! |
International travel is still a bit tricky, so going to Bulgaria might be a challenge. But learning to live Aylvak style will work anywhere if we let it. But we may have to unlearn many bad habits. We may have to lose the cell phone, or at least not be ruled by it. Work may have to fit in into our schedule instead of the other way round. We may have to accept who we are, warts, worry, diabetes and all. We may have to relearn to listen to our thoughts more carefully, we may have to accept that sometimes doing nothing is a healthy activity in itself.
Are you keen to journey with me to a virtual Plovdiv? It's never too late to learn.....
Wednesday, 14 October 2020
"We called him Tortoise because he taught us."
A promise is a promise - it's tortoise time. One of our family rituals, is playing Hide and Seek with 5 of the 6 reptile members of our family. Well, just Seek really. They are incredibly good at "disappearing", sometimes only letting us find them after a few days. I love how when they know they have been found, they simply stop, completely still, and retract their heads into their shells. It's the "if I can't see you, you can't see me" defense mechanism that a lot of species, especially humans, employ.
This is Olaf |
Speedy keeping safe |
So - some introductions: Thadeus (who strictly speaking is a Thadea) grew up in Andrew's childhood household, and has been part of the family longer than I have. She is a gentle soul, a bit of a leader, confident and comfortable in her own shell. Speedy was rescued by my sister when he was so very tiny. A dog had damaged his shell in several places and so he is more vulnerable and
exposed. He hides a lot, and is skittish, and is only just now venturing further into his fynbos buffet garden. Tolstoy - you have already met - and Olaf are the babies of the group, and heart meltingly gorgeous. Tostoy is the tiniest, and the friendliest of them all. Olaf is the best hider of the group. And then there are Bruin and Brown. These two were rescued from a boutique hotel that was closing, and rehoused with us by American friends who were staying there and concerned for their well being. Bruin is an easy going, get-on-with-everyone type. Brown is not. He is so aggressive that we have had to give him a separate patch of garden away from the others. Every now and then we try to integrate him back into society, but his physical aggression is nasty, and he tries to hurt the others. He hisses at us, and clearly had an unhappy childhoood.
TD once had to wear a tortoise for a week. Before technology had become so sophisticated and accessible- way back in 2017- TD's endocrinologist was worried that some hypoglycemic events (low glucose) were being missed and this could put TD's life in danger. So she attached a "tortoise" to TD (her terminology, not ours). This was a closed system Continuous Glucose Monitor, meaning it gathered and stored glucose information in the sensor, but was only read by the endo at the end of the trial period . She could study the data, together with a food and activity diary, and give feedback. These days, technology has moved so fast that the CGM gives immediate feedback, and TD can adjust her insulin accordingly. The 2017 device was called a tortoise because of it's shape.(and to make it less scary to children....) And maybe because of the slowness of getting data.
I know tortoises are thought of as slow animals, but in my experience, if they want to, they can rumble over rough terrain at quite at pace. Aesop's fable of the hare and the tortoise has the slow and determined tortoise plodding on to win over the overconfident faster competitor. Consistent effort leads to winning the race is the supposed moral of the story. But life isn't a race to be won, is it. And we are not competing with anyone. Diabetes has taught me that there are times to be slow and methodical, and there are times when speed is essential. Yet again, it is all about balance and context, I suppose.
If you want a fix of gorgeousness, we can organise a Zoom meeting between you and a tortoise....although for most of the meeting you may just be staring at some fynbos, until a tortoise appears. Trust me, it's not a bad way to spend an afternoon.
Thadeus |
Sunday, 20 September 2020
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 |
Tuesday, 18 August 2020
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:
"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....
Sunday, 12 July 2020
The Big Picture
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.
My thinking spot |
Wednesday, 10 June 2020
Virus alert
Tuesday, 5 May 2020
The art of masking
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! |
Friday, 3 April 2020
The silence of sadness
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.
Thursday, 12 March 2020
Load Shedding
I am off to get the camping gas stove out of the garage again. It's time for tea.
Sunday, 9 February 2020
The voices in my head
We all have voices in our head. ( I hope...do we?? Perhaps I am speaking for myself here!) They are the ghosts of childhood, the constrictions of societal norms or the self imposed opinions of self. Or sometimes they are just lists of things that need to be done.
My early morning checklist includes things like changing the needles on both insulin pens, giving a very sleepy TD the correct type of insulin at the correct time, making sure she eats within a certain time frame of injecting, and packing an ice pack in the insulin kit for school.
The last couple of weeks have been diabetically challenging. On one occasion, TD did not take her insulin kit to school. For some reason, I didn't pack it or leave it with her lunchbox, and as her glucose had been too low at breakfast time, she hadn't taken any Apidra (short acting insulin) when she woke up.
The voices in my head did a little admonishing speech - the what ifs looping around (the emergency injection for severe hypos lives in the kit and should be on TD's person at all times). I whatsapped her and dropped the cooler case at the school's front office. Crisis averted.
TD checked in with me back much later, towards the end of the school day. She thanked me for bringing the insulin through.......but I hadn't checked properly and the Apidra pen did not have a needle on it. It is absolutely no use whatsoever without the needle. Oops.
No insulin equals glucose spike. High glucose equals headaches, tiredness, blurred vision and inability to concentrate. Inability to concentrate equals a hard day at school.
Shortly after this, TD caught the bug going round. The doctor booked her off school for the best part of a week. She slept for most of it, and she tried to stabilize those glucose levels. But guess what - pretty much any illness causes sugar levels to rise as cortisol ( glucose) and adrenalin are released into the blood stream to help with fighting infections. Even a minor cold can be a major challenge for anyone with diabetes.
Enough, say the voices in my head. How about some positive news.
TD has a fascination with, and love of, old cars. She recently had the opportunity to be a passenger in an 1916/17 Dodge Brothers on a rally from Wynberg to Simonstown. (The date discrepancy relates to the addition of a part in 1917....)
The 1916/17 Dodge Brothers |
Our inner voices play an important role in how we live life. Sometimes it is hard to drown out the picky voices of criticism and or the bass notes of self doubt. Sometimes these voices need to surface so that things can be made better and easier, or so that we can make longer check lists. Sometimes the voices need to be overlayed by the kindness of people we trust, who encourage us and tell us we are doing ok, even in the diabetically challenging weeks.
Monday, 20 January 2020
Back to school
It was frustrating. And I wouldn't tell even my best friend how long that took, and how many times I tried to guess the combinations of key presses before looking it up and how I had to laugh at my foolishness.
It came on top of a frustrating interaction with Walton's Stationers, suppliers of TD's stationery requirements for grade 11 (Grade 11 ! - how did that happen so fast!) We ordered and paid for the books last November, as requested, blissfully expecting to pick up the cardboard suitcase they are packed in at school last Tuesday. Ah no, it was not to be. They had received the payment, but not the list of items ordered. No problem, mistakes happen, and I sent off a copy of the form to the email address supplied. TD could fetch them the next day, and she would just delay the covering until the next afternoon. No luck with that either. I phoned, and was promised the parcel the next day. It didn't arrive. And so on.... I won't bore you with the daily dash of expectations. Waltons promised today 1pm would be the real thing. Sadly, the driver saw the school initial W, and decided to take it to the Waterfront instead.
I had to laugh. The person in charge offered to fetch it and deliver it herself, and because I was dashing about this afternoon, we decided to meet half way in a deserted parking area. She apologised, and handed me not only the stationery box, but a little brown packet with the following label for me to give to TD:
"We're sorry for making you feel blue. We're going to keep working on being sharper but, for now, here are some treats for you."
(The fact that they had a nifty little rhyming label shows that TD was certainly not the only person who had started the school year writing her notes on pieces of paper that will need to be rewritten into the books.) The gift was a kind gesture - TD loves stationery, and a few gel pens or a rainbow eraser with the little brush on the other end that smells of bubblegum (remember those?) would have delighted her. But no, the treats inside were chocolates and a sucker. So it was an insulin heavy gift, which TD consumed on the way to orchestra rehearsal. She came home with a high glucose reading.
This year looks as though it may be as chaotic as last year. TD has hit the first term running, and has very little down time this week. On Friday, she and a large number of fellow musicians, go away on the school's annual band camp. This is one of the highlights of her year, and is much anticipated. It was on this camp a couple of years ago that a discussion about Star Wars led to a friendship and romance with O, who feels like part of the family now.
I have started stocking up with some provisions to supplement camp food. TD is confident and adept at the diabetes management. She has many friends who know what to look out for in lows and highs. All should be fine.
Should.
That shadow follows me everywhere.
Thursday, 26 December 2019
Holidays, henna and poetry
Sedgefield reflections |
This short holiday was even more meaningful, as R is here for a few weeks from the UK. The four of us have not all been at Sedgefield together for a very long time. We spent many hours on the stoep, playing variants on the game Bananagram, eating simple, delicious food, reading and chatting. We went to the beach and swam in the sea water gently rolling into the lagoon. We shopped at the farmers' market and walked every day. It is a poetic sort of place.
Andrew got poetic too, in the form of henna art on TD's arm. Henna is a perfect medium for trying out body art, as it fades and disappears within two weeks, leaving space for new ideas or back to school regulation art-free arms.
Andrew is very good at this sort of thing and asked TD what she would like have drawn on her this holiday. She chose a full arm design to feature her CGM. Technology can be body art too, and TD wanted to embrace her uniqueness. So the centre of a flower is her CGM censor, with petals radiating out from it. That is sort of how diabetes management works - the glucose number is at the centre of everything, and all other treatments and management radiate from that number.
Too high? - add more insulin. Too low? - give more glucose. Too stressed? - work on calmness. Too tired? - sleep. This was the holiday of LO appearing on the sensor reader - TD went so low several times it didn't register on her CGM at all. This means her glucose number was below 2.2. This is not safe. The rest of TD's arm has other important information about her in henna: where she lives, her name in code, a "this way up" arrow and other such vital details. For good measure, Andrew added a traditional anchor and a "I love Mom." and of course, it goes without saying, a dragon.
Instead of hiding the CGM, TD decided to celebrate it. Diabetes (or any illness) does not need to be covered up. The pancreas is not going to heal itself, so she might as well deal with the fact that she will forever need to monitor her glucose and celebrate that technology can help her.
TD's quote last week was "How lucky am I to have something that makes saying goodbye so hard." This was written by A.A. Milne and said by Winnie the Pooh. It is smart choice of wisdom for a 16 year old to cherish. I think that is how we all felt when we left Sedgefield on Monday to come home to do the Christmas preparations.
It's a nostalgic time of year for me, and as we round the corner into the last week of 2019, I intend looking for poetry in every undusted corner of my thoughts, every smile, and in all the kindness that is dispensed at this time of year, so that 2020 starts with a sense of gratitude. And may we all be charged with the grandeur that is around us.
Sunday, 1 December 2019
Mens sana in Corpore sano
There is no denying it - exercise can be the elixir of health and well being. If only it wasn't also such hard work. TD has been doing 5km Park Runs for the past 5 weeks, and I joined in for the first time last Saturday. The good bits were a sense of accomplishment, seeing a huge snake watching us from the long grass next to the path, and starting the weekend on an endorphin high. The other bits include being amused at the fast runners who eclipsed me before I had rounded the second corner, and the feeling of old age that hit my leg muscles several hours later. I celebrated with a long afternoon snooze.
A beautiful setting for a Park run/walk |
Sport is compulsory at TD's school, and for good reason. Not only does sport encourage teamwork and camaraderie, but it also balances out the long hours of desk sitting and information intake. TD is required to participate two afternoons a week. She also does archery every Friday, which, although offered by the school, is unfortunately not recognised by the school as an official sport. I mention this because TD's weeks are very full, and she needs to cut back on some commitments to lower the stress levels.
A lot of time is devoted to music - orchestra, senior strings, choir and double bass lessons are all extra mural activities. There is no day that she has a free afternoon after school. The trouble is, she loves all of these extras and is going to be heartsore to cull one or two. But it must be done. Inbetween all of these activities, she needs time to devote to studies and homework.
So this is what I am wondering : having agreed that sport is beneficial to the youth, can it not be said that cultural activities are just as important and character building? Orchestras, choirs, painting, clay work, acting are all excellent activities and help produce well rounded people with more to offer the world. It is my humble opinion that the school system is geared towards the sporty people: two afternoons a week and they are done with extra curricular activities. Also, the number of sports awards at any prize giving shows an obvious bias to the emphasis placed on physical prowess over cultural activities.
How about leveling the playing field, so to speak. How about making sure that each learner spends two afternoons a week on sport and two on music or art or drama. I am suggesting the introduction of a compulsory cultural programme. At least then all the learners will have the same amount of time to study and do homework, and they will all come out as well rounded individuals. Or perhaps then the school management will see that overloading all the kids, instead of just some of them, is not good for grades, and some compromises need to be made. What do you think?
TD's school year has ended, so she has a long holiday to think about what she will decide to cut next year. She will keep doing the Saturday Park runs. A healthy mind in a healthy body is not exactly modern science, as it was first penned by the Roman poet Juvenal in the 2nd century CE. How about reversing the logic: Corpore sano in mens sana. A healthy mind can produce a healthy body. I guess it is all about balance and a wholistic approach to happiness.
Saturday, 16 November 2019
It's National Peanut Butter month
Not that I am suggesting I won't have a trim in between, but I think I need a definite appointment on that particular day. The 14th of November, as you well know, has been set aside as World Diabetes Day. The International Diabetes Federation chose that date - Prince Charles' birthday (oh alright, Mr Banting's birthday too) - to encourage the world to become more aware of, and concerned about, diabetes.
Awareness is always a good thing, especially around preventable and curable diseases. It warns and encourages people to check various body parts and take the necessary action. I am most grateful that Andrew's cancer was caught early and treated. Type 2 diabetes can be prevented and controlled. But Type 1 can't. It is an autoimmune disease, and strikes for no known reason, and very quickly too. All it takes is a few days to go from a carefree 11 year old (in TD's case) to a insulin-dependent-for-ever PWD (Person with diabetes). Just this week and not for the first time, someone benignly told TD to "get better soon." It doesn't work like that - the diabetes club offers life long memberships only.
There was a gathering of mothers of T1 kids this Thursday, because that can be a kind of club too. Shared experiences can make us stronger. Community can be less lonely. Connectivity can be helpful. I didn't go. TD was home studying for exams, and stress overwhelmed her at about the time I was going to set off for the tea.
A beautiful and calm place to visualize |
So, back to World Diabetes Day and my hair appointment. I am thinking that next diabetes day I will do something that is both ordinary and nourishing: a hair cut fits the bill. It will be a nod to myself that life goes on regardless of mothering diabetes, but sometimes it is lovely to take time out to let someone pamper you.
These days there seems to be a month for everything. November alone celebrates, according to one website,
#Aviation history month
#International drum month
#Caregivers appreciation month
#Diabetes awareness month
#Model railroad month
#Novel writing month
#Peanut butter lovers month
#Jewelry month
#Sleep comfort month
#National Grumpy month
It's all a bit much. I guess we can pick and choose which to celebrate. But it makes me uncomfortable to have to celebrate T1 as it is unpreventable and incurable.
Of course, the above list is incomplete. It fails to mention that it is also MOVEMBER, to bring awareness and support for men dealing with testicular and prostate cancer, suicide and mental health issues. That means Andrew is cultivating his hairy upper lip look. This year he is going for the handlebar moustache. Sigh.
But if even one person is helped by all these awareness campaigns, they will have served their purpose.
Note to self: Schedule all my own health checkups early in the new year. And don't forget to book Bronwyn for 14 November.
Note to reader: I made up the National Grumpy Month. It just fitted my mood.