Mission Accepted : The (Re)quest for a Replacement Blood Glucose Meter- Diabetes Blog Week – Day 3

The Blame Game – Wednesday 5/17

Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another. And sometimes the way the doctor talks to you can leave you feeling like you’re at fault. Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger. Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had. Now, the game part. Let’s turn this around. If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself? Let’s help teach people how to support us, rather than blame us! 

This is a blog post I wrote a while ago but I have relived this conversation again recently.


Background: 15 year old boy with Type 1 diabetes. Great kid with two settings: sloth and clumsy giraffe on speed. There is no way to predict which setting is in operation at any moment.

Motivation: Two Blood Glucose Meters which both, within a space of a week, show signs of not being reliable. This is not wonderful when your son has Type 1 diabetes. A call to the helpline will surely be able to fix this? 

Setting the scene: Your lunch break is 45 minutes. Mobile reception at your work is dodgy to say the least so calls have to be made from a phone in the middle of a busy staffroom. There is a tiny surface, about the area of a phone directory, where you can balance a notebook or iPad if you need info for your call.

Reality: 35 minutes spent in a queue. You do not have lunch as you didn’t think to bring your sandwich to the phone. You did not fit in a quick loo stop before you got on the phone and you are teaching for the full afternoon. A miracle occurs: you make it to the front of the queue and your call is answered.

Main characters

1) aforementioned high school teacher, starving hungry, in need of a wee and slightly on edge in case the Blood Glucose Meter her son took to school stops working.

2) extremely patronising lady who has clearly done a training module on how to talk with empathy to harassed customers.

Dialogue:(assume we have run through five minutes of privacy statement, details of child, various other details which we go through each and every time we call, serial numbers on the back of each meter in the tiniest font have been supplied, as you were smart enough in the middle of your son’s hypo that morning to remember to take a picture of the back of his 2nd meter and you even manage to simultaneously hold down two buttons on the meter on the tiniest ledge imaginable so as to be able to give the details of the error codes.)

Teacher: ‘Yay, finally a human! You are a human right? Great! My son has two of your meters and both appear to be playing up. On one meter, he repeatedly gets a message that the drop of blood is not big enough when it very clearly is whereas the other emits a strange squeaking noise when the cassette rotates.’

Lady – ‘Let me run through the method you and your son are using. No, please don’t stop me even if you think you know what you are doing, it’s amazing how often people are doing the wrong thing and your son has gone through a large number of meters which really does make me wonder.’

Slightly narky teacher– ‘We have been through this so many times that I could do your speech for you and I now only have 5 minutes left so can you please just put through the order for two new meters and I promise I will send back the old meters. Yes, my son is a teenage boy and so may not be the most precise and careful creature but he does care about his diabetes and having correct results. No, putting his meter in a little tub would not be an option as he carries it in his pocket when he goes from class to class. Yes, I will suggest that he treats his meters with great care and does not launch his school bag across rooms or sit on his bag if his meter is in it. Now about those new meters, are you going to send them?

Accusatory Lady: ‘Have you been following the correct procedure for inserting new cassettes and also do you follow our cleaning instructions from the back page of the manual ? Let me talk you through exactly what that is and you can follow on the meter you have with you. 

Defensive teacher: ‘For the love of God, can I have two new meters or not? I now have one minute left, I have nothing left to say to you. Are you understanding how stressful this is? I would love it if my son changed to another type of meter as I think there are better models than yours for him but he wants this type as he is comfortable with how it works. He has diabetes, not me, so I am respecting his wishes but, tell me now, are you going to send me two replacement meters as I need to go?’

Placatory Lady in a voice dripping with syrup : ‘I totally understand what you are saying and I will be sending you out two new meters with the understanding that you follow the correct procedure when changing the cassette and you promise me that you will frequently utilise the cleaning method using the cotton bud which we discussed earlier.’

Sarcastic teacher: ‘Thank you so much for your help, I look forward to receiving the meters and will ensure all protocols in relation to cassette changing and cleaning will be followed with the utmost care and attention. There’s the bell. I have to go!’

If there had been a concrete wall in front of me at that moment, I swear I would have found great comfort in repeatedly head butting it until I drew blood but instead, I picked up my bag and headed to my class, ignoring my rumbling stomach. I keep reliving that conversation and wondering if I should have done it differently.

OK, NOW FOR THE FUN PART! LET’S TURN THIS CONVERSATION ON ITS HEAD!

Set the scene: 2 unreliable BGL meters, one teacher, one service centre lady.

Phone rings three times and is answered by a lady with a calm, understanding voice who simultaneously manages not to sound patronising. 

Lady: Hi, how can I help you?

Teacher: Hello, my son’s two BGL meters are unreliable and I’m worried about his using them. Would you be able to sent me two replacements please?

Lovely Lady: Sure, please give me the code on the meters….. ok, that’s great, I’ve got all his info here. Is there any feedback that you would like to give me about why these meters might be unreliable? We are always striving to improve and it must be very stressful for you to feel like your son isn’t safe.

Grateful teacher: Look, it’s hard to say. He is a teenager and this is a delicate piece of equipment. I don’t want to blame anyone. I just need two replacements.

Wonderful Lady: Not a problem. I will get them both sent off to you tomorrow. I can see your son has had diabetes for a few years so I’m sure you both know what you are doing. Please let me know if there’s anything else I can do for you?

Ecstatic teacher: That’s perfect, unless you happen to have three teenage girls who may be looking for a life partner in a few years. You sound like a great woman!

Future mother in law of my sons: Sadly not! I too am the mother of three teenage boys. The struggle is real!

THAT WAS FUN! IT’S GREAT TO DREAM!

Celebrating being average!


I am average, my kids are average, most of my life is fairly average and I commit to celebrating this! We need to celebrate the average! Why is being average frowned upon and overlooked when that is what most of us are? This is my own personal protest cry for common humanity! 

I have three fantastic kids who are average and I am not ashamed of that. I hold my head up high and I love them with every ounce of my being. They go to school and do all their work, they play multiple sports, they have friends and people tell me they are lovely, polite boys. Why should I be made to feel that this is not enough? 

There is such pressure on our children to excel at everything or at the very least at something. Why are we not content to be what we are?  I see friends putting their primary school aged kids into tutoring to try and pull up their grades. These kids do their regular homework, then plough through the revision sheets issued by tutors. Their haunted little faces pain me as they are drilled to within an inch of their lives and have such high expectations put upon them to always do better. What skill set do they need to have for their future lives? Are they going to be astrophysicists or elite athletes? Why do we always seem to demand more and more of our children when they are already giving us their best effort but the results are ‘only’ average?

I certainly do not mean that kids should not excel. If your kid is in the gifted and talented category, good on them but for the love of God, please stop dropping that into the conversation! I get it you are proud and so you should be but I am equally as proud of my three children. I have tried to help each of my boys find something they can be passionate about. For them it is sport, in various shapes and sizes. 

I have decided to withdraw from this pressure! It feels so liberating but it is hard and I do need to keep myself in constant check. 

What caused me to rethink? 

Three years ago, my middle boy was diagnosed with Type 1 Diabetes. His life and our lives changed and numbers took on a far more significant role. Every day, my son checks his blood glucose levels multiple times, we calculate the number of carbs he is going to eat and from that the insulin dose he injects is calculated. He is growing and is very sporty so these calculations are constantly changed and modified in order to try to keep his levels in the sweet 4 to 8 mmol (72mg-144mg) range. Every three months an average is taken and we find out the results of the all important HbA1c. I’m sure many people (and/or their parents) with Type 1 Diabetes would acknowledge a certain nervousness when they are about to get this magic number. 

The night before this result is given, I feel sick and cannnot help but think back over the previous three months. We try so hard to keep those blood glucose levels in range, but real life gets in the way. Sport, illness and being human all interfere and I lie in bed picturing a big  zig zag with high highs and low lows. My son tries his hardest and so do we as his support team. It doesn’t matter what that number is, there is nothing we could have done differently.

When school reports arrive in the middle of a life full of numbers, it really makes me think. Don’t the same things, sport, illness and being human, impact on these school results? Yes they do and so I commit to stressing less about grades and results and as long as we are all trying as hard as we can most of the time then that is absolutely good enough!

Veni, Vidi, Lusi, Vici 


Veni, Vidi, Lusi , Vici- I came, I saw, I played, I won!

 If my son had a Latin motto it would be this! Julius Caesar take a back seat! 

There is none so fierce as a 16 year old boy determined to play cricket like a pro.  A flight was taken to another time zone.  Night time lows and day time highs were navigated with unintrusive help. Carbs were counted pretty successfully. The results of each game (read ‘battle’) were dissected on the side of the field.  Whilst cricketing tactics were openly discussed, my boy waged a silent campaign.  

He fought off heat, then cold. He made intricate decisions based on activity levels. The war, however, was not won by type 1 diabetes. My boy owned his diabetes and he dominated it!   He took a big step towards independence. The team performed well in a tough pool but the actual results of the games don’t really matter as the real victor is safely tucked up in his bed, back home with us, smiling to himself and reliving  moments of glory on the field.

Diabetes Queen  Mothers 

Diabetes Queen Mother

When your child is diagnosed with Type 1 diabetes, it is the loneliest feeling in the world! For me, it was the first time that I couldn’t wave my magic maternal wand and make something nasty and unwanted disappear. Other than health professionals (who can be amazing) there is generally no one to tell you what to do or help you help your child. Whilst it is your child who has diabetes and not you, you are their primary caregiver and as such are reponsible for them. This can feel all consuming.

A year after my son’s diagnosis, I discovered the diabetes online community. I read lots of blogs and found that I wanted to write my own. I am really clear when I write that it’s not me who has diabetes. I do not reveal my son’s name and I don’t post photos of him on my blog or on twitter. That is my choice, as I know my boy and he is private about his diabetes. 

It is hard as a parent to know what your online profile should be. Clearly, most of us do not actually have diabetes but it is such a big part of our lives whether our children are five or fifteen. I often feel hypocritical for even writing about diabetes as I don’t have it, but it can dominate my life and I do enjoy the connections I have made with people online, especially some other mums.

As 2017 comes to close,  I have seen the amazing phenomenon that is Constance Hall (read about it here). I follow what Constance does on Facebook. It’s so fantastic how she tells it like it is and connects with women across the globe with her total honesty and humour. I don’t need to agree with everything she does and says.  Her success comes from talking about how life really is. She hides nothing and people love this about her. Women being there for each other is not new but using social media to do this is a relatively new phenomenon.

With this in mind, I would like to pay homage and respect to the Diabetes Queen Mothers out there. There are many ways to be a Diabetes Queen Mother. None are wrong. I realise that some mums do things differently from me: some share much more than I would, others are more focused on research, and my own way of coping is to try to be realistically optimistic and focus on hope. 

We are all different yet we are all connected by Type 1 Diabetes and together we are stronger. It’s not our task to critique or question each other. We are not digital natives and we can be clumsy and awkward.  We don’t have solutions or cures but we have real, lived experiences of helping our children grow into strong, independent young adults. We need not always agree but we are Diabetes Queen Mothers.

Who are my Diabetes Queen Mothers? 

(In no particular order)

carbcountingkids.com

@carolynboardman (on Twitter)

@cstevens338 (On twitter)

Bigfootchildhavediabetes.com

Brightoneagle.wordpress.com

T1dandgf.wordpress.com

Acornishmum.com

Racheljgood.wordpress.com

@deepost30 (on twitter)

WaltzingTheDragon.ca

actuallymummy.co.uk

I’ve focused purely on Diabetes Queen Mothers in this blog. That is not to take away from the Diabetes Queens and Kings out there who inspire and teach us every day in many, many ways.


The Boy and the Egg Cross a Continent 


(I love this bust. I call it ‘Mother of Boys’. I saw it in a Château in the Loire Valley and immediately identified with her facial expression.)

Anyway, back to this blog!

Off he goes, cricket bat in one hand, Egg in the other! That’s my boy and, in my eyes, he is a champion before he has even left.

Being selected for the school’s First 11 cricket team was an honour, playing in the local school comp was fun and then came the cherry on the cake: the opportunity to join the team in a competition on the other side of Australia! 

First of all, what is it about bloody cricket and blood glucose levels? I sit on the side lines on a Saturday : a true martyr, looking just like the picture above. I’ve given up even trying to pick which child is mine, let alone try to understand the rules. Then comes the post match analysis of the game.  I smile, and adopt a Madonna-esque ( not pointy bra Madonna) facial expression and try to nod in the right places. Following this, we try to figure out the randomness of the BGLs (this time potty mouth Madonna can make an appearance) and we are stumped. (Hey, look, a cricket metaphor!).

Last week, wearing a CGM (funded by the local diabetes clinic) was a seemingly fantastic solution to working out what was going on. Great idea until there was an allergic reaction to the film keeping the CGM in place. Cue much frantic itching and the appearance of a nasty rash. A new CGM was put on after the weekend and was able to be kept on until the end of the week. The poor boy did have another allergic reaction but had kept quiet about it and soldiered on. The information gleaned from the wearing of the CGM has meant that the amount of insulin used around games can now be tailored much more precisely.

Challenge number one, was making sure the teacher leading the group had an awareness of Type 1 diabetes and was trained to use glucagon. This took some organising from our Diabetes Educator. She said her session with the teacher was fantastic and that the teacher was floored by what my son has to do every day. It is wonderful that he sees him as a ‘normal’ boy and he is, but there is so much work goes on, especially around sport, to make that happen. Now the teacher gets it, I can be confident in him being a good back up for my boy.

The next challenge was to find a family who would billet my boy. A lovely lady has put her hand up. Her sibling has Type 1 diabetes and her son is in the host school’s team . She has volunteered to do the 3am wake up so BGLs can be checked after a big day of cricket in the sun, presumably backed up with swims and back yard cricket. She is getting in all the hypo snacks needed and has sent texts checking we are all good to go. I am unbelievably grateful to this family. This had been my biggest worry as my boy sleeps through night time hypos. I am pretty tough and don’t cry often but I bawled my eyes out with sheer relief after I spoke to this lady.

After the school and accommodation were sorted, we needed to go through the action plan. We rocked up Friday afternoon to the local diabetes clinic. This date coincided with my son’s three year ‘diaversary’. On the way to the appointment, I really wanted my son to reflect on how amazing, fantastic and all round bloody wonderful he has been. As we drove, we chatted about all that had happened in those three years and I let him know in very clear terms how proud his dad and I are of him. 

My boy knows what he needs to do. He can carb count like a pro. He has a great knowledge of how to manage his diabetes. My hope is that, with all this knowledge and a good back up team, he can focus on having fun and playing some good cricket.

So here we are. Tomorrow is preparation day. Cricket gear needs to be pristine. Good clothes for going out folded. Full school winter uniform including blazer hung up ready to wear travelling. Then lastly we will go through the diabetes kit. A lesson on how to use the Frio packs, triple checking that there is enough gear to last a week and then we will wave him off in the wee small hours of Tuesday.

Letters of hope

I need to give thanks and be grateful. I need to repay some of the kindness shown to us by the local community. After thinking long and hard about how to do this, I decided to make up care packs for the families of children newly diagnosed with Type 1 diabetes in our area. These will be given to the diabetes clinic for them to distribute. They average around fifteen diagnosis a year in this country hospital so it is manageable.

I’ve got:

A lovely calico tote bag – useful for carrying all the bits and pieces, such as log books, and spare meters which are needed at clinic and endo appointments.

A hardback notebook- useful as a journal, to write down carb counts for recipes or list the many questions needing to be asked in the early days or even to throw at walls.

A decent pen- who doesn’t like a nice pen?

A symbol of hope or love- just to let people know they are not alone .

Letters of Hope – totally the most important inclusion. To be printed out on nice paper and put in a fancy envelope. Our beautiful diabetes educator is going to ask some people she knows. Messages sent  via twitter to many of the amazing people I have come in contact with through #OzDoc and other people who have blogs about their own or their child’s diabetes, have resulted in quite a few offers to contribute Letters of Hope. I feel so lucky to have met these people and I know their contributions will really make a difference to newly diagnosed children and their families.

Writing my own Letter of Hope was such a positive and affirming experience for me and if it helps just one person then I will be happy. Here is my letter.

…………………………………………………………………………………………………………..

Hi!

How are you? Silly question, isn’t it? Your child has been diagnosed with Type 1 Diabetes. Do you feel exhausted? Are you wondering what your life and the life of your child and family will be like from here on in?

I understand! Not many people will get what you are feeling right now but I have a bit of an idea as my child was also diagnosed with Type 1 Diabetes. I sat in hospital almost three years ago and could not get my head around my son’s diagnosis of Type 1 diabetes.

It does get better and you will survive, please know that! You need to be so strong now and that is hard. Your child will no doubt be looking at you for cues on how to react. Please try to keep it together in front of them. I shed quite a few tears in the Parents’ Room but I really tried my best to keep my act together in front of my son. Right now you are all in this together, learning about insulin, carb counting and trying to get your heads around your new reality. You will learn lots and you will get there!

I have a really vivid memory of being told to fit diabetes into our lives and not the other way around. I have kept this in my head now for almost three years. When my son asks me if he can do something, I ask myself if I would have let him do it if he didn’t have diabetes.

I can honestly say there is nothing he hasn’t done because of his diabetes. He plays multiple sports, he now has a part-time job, he has had sleepovers at friends’ houses, and he has gone on school camps. I would never have believed any of this was possible but it has been and he has enjoyed every single thing he has done.

How have we done this? Since diagnosis, we have worked with the diabetes educator to figure out how to make it happen. It hasn’t always been smooth sailing with the school but I have learned not to give up. I am polite but insistent and just keep asking until it happens. Be kind to other people who don’t get it but when it comes to the rights of your child, the school has a duty of care. The real world, after school, will come soon enough but in the meantime, you need to pull up your big girl or boy pants and stand up for your child. Lots of teachers are fantastic and open to learning. It’s not all bad!

As we have progressed through the years, my son has taken on more and more of the responsibility of his diabetes but I am there in the background, checking how things are going and asking a few, sometimes annoying, questions. He is a teenager; he does make mistakes but I never blame him as I don’t want to lose his trust. We talk about numbers and try to figure out why they might sometimes be too high or too low then we try to fix it. When I first see him after school, despite an almost overwhelming desire to find out what his levels were all day, I ask him about all the other stuff in his life. We keep his diabetes kit on the kitchen bench so I will look at his meter later or ask him about his levels as we get ready for dinner.

Language is weirdly important to me. To me it’s clear that my son ‘has’ diabetes, he isn’t a diabetic. He doesn’t ‘suffer’ from diabetes, he thrives despite it! I try to talking about ‘checking’ his blood rather than ‘testing’ it. It’s not a pass or fail! These are small things but they give me perspective and take the blaming away.

Accepting imperfection is a big part of the deal too! You can have the same set of circumstances two days in a row and get two entirely different results. Don’t torture yourself about that. Life should go on, don’t stop doing things (unless of course the blood glucose levels are really high or low) but do get help from your diabetes team. We have had crazy days with bumpy BGLs but nothing has gone wrong: school is still attended, homework is still done (yeh, it’s a bummer in my house, a chronic condition still doesn’t get you out of doing homework), friends come still around, sport is still played and still no hospital admissions for diabetes.

In the midst of the madness, take care of yourself. You are still an important person in your own right and, as much as it can seem the opposite, you are not defined by your child’s diabetes. I go for walks. It’s free, can be done at any time and as much as I have to force myself, I always feel better afterwards. Initially I had to force myself to go and have fun. I thought I’d never have more than one glass of wine ever again. How could I leave my child to go and do something for myself? Eventually, I did go out, I may even have had two glasses of bubbles and guess what? My son survived and barely noticed my absence.

Not everyone will understand what you are going through. Even your closest family and friends will not get it at times. That feels really hard as your child’s diabetes is dominating your every thought at the start. Over time, I probably did lose a few friends but the friendships I have now are stronger and it was probably better that I didn’t head butt the friend who kept saying, ‘Well, at least it’s not cancer!’. Safe to say, we no longer hang out as much! Saying that, I didn’t know much at all about diabetes before my son’s diagnosis so I try to keep that in mind when people say silly things and downplay the reality of diabetes.

Diabetes is an invisible disease and your child looks horribly normal and so do you! You will become like an elite synchronised swimmer: all smiles above the water but a frenzy of activity below. That’s the gig! Eventually the smile will be real. You will all have fun, you will most likely become a nicer, kinder, more understanding person and so will the rest of your family. In the mean time just keep paddling your legs!

Know too that as you go through what you are doing, there is a whole community of people, young and old, out there who are doing the same things. You might never meet us but we are out there, fighting the good fight, staying strong for ourselves and our kids and turning these heroes into amazing adults with fantastic futures ahead of them!

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If you would like to send me you Letter of Hope, please leave a message and I will get back to you.

 

The boy and the egg go on an overnight school trip

Dear Sir,

My boy is the Boy with the egg.You might remember him from last year. He made the final team and now you are taking him on an overnight excursion. I know! It is amazing and he played so well. He carried that egg in his pocket and he never even cracked the shell! He had the best fun, was covered in bruises and grinning from ear to ear when he came home.

I’ve emailed you twice in the last week to ask that you undertake the Egg Preservation Training (EPT).  It’s a quick course to teach you how to help my boy look after his egg in an emergency. Our educator has very kindly offered to come to you and do the training. We need a reply to our emails please.

I am fully aware that my boy looks totally normal and you would never guess he has to carry that egg. Last year he had a really scary time on an excursion when a teacher refused to help him carry his egg. It nearly smashed as he didn’t follow my son’s Action Plan. You can read about that here. I’ve attached the most recent copy of the Action Plan to this email.

I also need to ask you to wake my boy at 3am. The egg is under a great deal of pressure after a full day of sport and you need to wake my boy and ask him to check it for cracks. This is something we do regularly so it won’t worry him. I know this is a big expectation of you after a busy day. We would be very grateful if you let us know that you will accept this responsibility.

My boy will have a great time on this trip. I don’t doubt that for a moment. You too will have fantastic trip with a top team but I know will you will feel more confident in yourself if you undertake the EPT. 

Many thanks,

Mumoftype1.

…………………………………………………………………..

Dear Educator

I finally heard back from the teacher. The trip has been cancelled. Not enough of the team turned up for training sessions. He congratulated my boy for turning up to every session and expressed his sadness at having to cancel the excursion.

All your amazing work to help protect the egg, all the planning  for keeping it safe and it’s a no go!

I feel like I’m ready for a peace keeping job in the United Nations with my carefully scripted emails to the teacher- understanding their difficult job but gently putting pressure on him to attend training and do a night check. All for nothing!

This is our job- egg protection squad!

Thanks as ever for your support of my boy!

Mumoftype1