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, 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.....
Monday, 25 March 2019
TD's Birthday Bash
This presented a bit of a challenge. Sixteen year olds require a little more than the usual sweet treasure hunt in the back garden and cardboard swords and parrots and rainbow jelly. All party planning starts with a good breakfast: Andrew and I choose a cafe, take reams of paper and a couple of pencils and plot out possible party activities. Ideas tend to start on the grand scale, and thoughts of building a garden size Pirate ship, of firing cannons with real gunpowder, and walking the plank all seemed like good ideas.
Google disagreed. Apparently gun powder is dangerous and not recommended for home use. Giant ships take a lot of wood and a long time to build. Walking the plank may not seem like fun to young pirates. We needed a second breakfast.
Andrew building the ship late at night.... |
We raced up to party day, fitting in family commitments, hectic work schedules and all the party prep. But by 6pm on Friday, all was set and the Jolly Roger flags were hoisted. TD has delightful friends (and a large number of them.) They all entered into the spirit of the Great Piratical Rumbustification (thanks Margaret Mahy for a fabulous children's book with that title) with great enthusiasm. We did shoot cannon (tennis) balls at a 2D Pirate ship. The cannons were spring loaded, so no novice pirates were harmed in the shooting of them.
The main activity for the evening was making treasure chests. This required a fair amount of preparation and huge dollops of bravery on our part. Twenty five teenagers wielding hammers, aiming at small nails, using superglue, grinding off sharp nail points proved to be a loud festive occasion - a true Birthday Bash. The results were astounding. The treasure chests looked great, but that is not what I am referring to. The result was a group of 16 year olds co-operating with each other, chatting as they worked, engaged in the moment and being creative. The astounding result was a celebration of TD with a symphony of hammering.
Andrew and I needed more hands on deck for this activity. It takes really great friends to arrive on a Friday evening, who don't mind crouching on the dining room floor and a lot of noise. They helped the learner pirates with the basics of carpentry - like which way round a nail goes, and how to remove a wonky tack, with making sure everyone got the right pieces at the right time, and with serving the pudding and answering the queries when our hands are full. Me Hearties Kathleen, Natalie and Paul ye be fine buccaneers - thank you!
The treasure chest I made may look empty at the moment, but really it is filled with happiness and unseen treasures of thankfulness that we could celebrate TDs 16th birthday.
And diabetes? It was there, but just for the evening we told it to Walk the Plank.
PS I realise that some of you may be a bit disappointed that diabetes is not the main focus of all my posts. There is a reason for that. But if you are looking for more information and some excellent blogs, please have a look at https://blog.feedspot.com/diabetes_blogs/
Tuesday, 26 February 2019
The Rabbit under the bed
The fear of monsters is the fear of the unknown and dangerous. If we can acknowledge our fears, and drag them out into the open, maybe the monsters will turn into something softer and more comforting. When TD and I needed a little space at the celebration lunch, we went to talk to the rabbit under the bed. I think looking for the rabbit instead of the monster might just be a calmer way of living.
Friday, 1 February 2019
Adulting
The view from our stoep at Wellington |
Energy is still in short supply here, and on Monday the T-shirt slogan that became popular a few years ago, suddenly made sense : "I can't Adult today." When I first saw it, I had to ask the kids what it meant and they patiently explained that the youth of today are quite happy to use nouns as verbs. I find a lot of grammar usage strange these days. But it all made sense on Monday : I could do with a patch where I don't have to shoulder quite so many responsibilities, where I can doodle pictures, play in the garden, nap in the afternoon and have frank discussions with other children about bugs and whose cat has the louder purr.
TD's year has started with gusto - her extramurals keep her busy everyday. She is taking the academic year with the seriousness that grade 10 demands, and she is handling it all with grace and wonky sugar levels. There are so many factors that affect her glucose number - tiredness and stress being two of the major ones. But this is life -warts and all, so everyday we try to balance the scales of insulin and glucose. Some days we triumph more than others.
This week the new Gucci campaign was launched. It is called the Future is Fluid, and it features youngsters from around the world who are hoping to create a more tolerant society, particularly around gender issues. If you know who you are looking for, you may spot TD in the background.
Here is a link: https://www.youtube.com/watch?v=nFUvLNL7E8Q. I am beyond proud of TD and her desire to be part of a better world.
So I thought I would like to offer my campaign for a better world too. I have decided that on those days that I "can't Adult" I am going to change the definition of what it means to be an adult.
Andrew getting into the swing of Adulting |
Sunday, 30 December 2018
Odds and Ends
There are other moments of thoughtfulness during this traditionally "happy season". TD's T1 diagnosis was 4 years ago, just before Christmas on the 22 December. Each year it seems to stop me short, both in gratitude that she is OK, and sadness that she has to deal with diabetes forever. This year on the 22 December we were at the theatre, watching the most magical musical - Matilda. It is a wonderful production (do yourself a favour and get tickets if you can !!) Based on the Roald Dahl story, the young Matilda is enveloped in love and support by her teacher, Jenny Honey. One of Miss Honey's songs is about having the courage to face up to people and situations that are difficult and unpalatable (She sings "Just knock on the door, Jenny" when she needs to confront the head, Ms Trunchbull, and is too scared to enter the office.) I think that might be a good motto to start the new year with - just knock on the door. It's a start, and often what's behind the door is not as bad as the anticipation of setting things in motion.
I think this is how TD feels about the CGM. She has been wearing the Continuous Glucose Monitor for three weeks now. The sensors last two weeks each, so although the endocrinologist showed us how to "click" the sensor into her the first time, the switch over was a little nerve wracking. But it really is quite easy. It comes in a kit with a sort of stamp or punch which pushes the filament into the interstitial fluid. It sits on her upper arm, and -here's the best bit- it needs no calibration, so TD has not had to do a finger prick blood glucose test in three weeks. That alone feels like a huge liberation. She holds a reader up to the sensor and immediately can see not only her current glucose level, but also the patterns emerging from all the data AND the reader indicates if her sugars are going up, down (or are stable) and how quickly. Seeing the trends is the big plus so that we can work out what works best for TD. This is a door I am glad we knocked on.
The Libre Freestyle CGM in action! |
So the year ends, and for me it has been an odd one. The good bit about feeling that things are a bit hollow at the moment, is the potential to fill that hollow gap with whatever we choose. I think making happy memories makes the most sense - everything else is fleeting and transient.
And with philosophical thought I will end my odd year and wish you all a very happy, memory creating 2019.
Saturday, 15 December 2018
Footsteps
When TD and her friend decided to climb some sand dunes, I opted out, and left them to it. I sat and watched them from a distance, next to the nearby lagoon. There was a flock of seagulls on the other side of the water. Near them was a mass of something I couldn't quite make out....until I saw some movement. The mass was a huddle of chicks, being watched over by the gulls nearby. Every now and then, one of the chicks would tentatively walk to the water's edge. A few tried out their wings on short flights, and a couple tried to catch a fish. (one managed, but the fish was large and the bird dropped it!)
I was fascinated. I spent a long time watching and wondering if the birds felt exhilaration at learning new skills (or feel anything at all). I wondered if they used logic to figure out that flying into the wind is difficult, and the best course of action is to stop trying and glide with the air current (or is it built in instinct...) .I enjoyed letting my mind float aimlessly. It felt like a freedom to sit and watch properly for a while and not rush off. The whole scenario just seemed poetic to me.
I was, of course, keeping an eye on the girls too. They were rolling down the dunes, burying their legs in sand, chatting and laughing. Like the senior gulls, I was close enough to make sure of their safety, and far enough away to let them do their own thing.
Knowing how far away to sit as a parent is a bit of a skill. Sometimes we need to hover closely and other times we need to let our children fly alone, even against the wind. TD is tentatively dipping her toes into new waters, by trying out a CGM. (Continuous Glucose Monitor). She has always been reluctant to use wearable technology, so last Saturday's appointment with the endocrinologist is a flight of freedom for her. But as it is early days, I will write about that another time.
In the meantime, it is that time of year when we seem to endlessly plod through the shopping malls and other (symbolically) hard paths. Be gentle on yourself, and if you can, find a beach to enjoy soft footsteps and sand between your toes.
Friday, 16 November 2018
14 November and ice cream
Sunday, 28 October 2018
Reflections in Glass
Saturday, 29 September 2018
Wearing my heart on my sleeve
The rest of the week was a rollercoaster ride of glucose numbers. She soared back to above the twenties and dipped into the low fours. I am aware, again, how much she deals with on a daily basis, and how maturely she deals with it all. We changed insulin vials, and eventually changed insulin type. The schools are on a short break, and I am hoping this will give her body - and my heart - a chance to catch up and settle down to our usual patterns. Deep breaths, sleep and lots of tea should do the trick!