And then there’s this.

Today let’s revisit a prompt from 2014 – May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

I’ve found it really hard to write this post today. I nearly didn’t write one. I am by nature, a positive person, who generally doesn’t dwell on emotional issues.

I want to be the poster mum! I want to say that I’ve got my shit together and my life with a child with Type 1 diabetes, whilst challenging, is rewarding. The reality is, it depends when you ask. Sometimes I don’t feel like I have the right to be sad. I don’t have Type 1 Diabetes. It’s my big, beautiful 16 year old, middle son who does. But, I am his mum. I love him with every fibre of my being and this is the one thing since he was born that I cannot fix.

About a month ago, it felt like I was spiralling into sadness. You can read about that here if you feel like it. I recognise now that it’s part of this gig as a parent of a child with diabetes. We celebrate the amazing victories our children have but sometimes we need to sit with the sadness and recognise that it is hard and the future we dreamt for our children may not be exactly how we had imagined it to be.

A big part of it, for me, is down to the numbers. They dominate my life and can be a barometer for how I feel. As the meter is checked daily, I feel my mood change. A line of beautiful, in range numbers and I could pop a bottle of champagne.

The reality is, at the moment, that it is a rare occurrence. Between trying to avoid hypos at school,  growth spurts, the impact of sport on BGLs, remembering to rotate injection sites, levels spiking due to school exams, imperfect carb counting (not my judgment-  does my boy really have to weigh every banana? Can’t he just see that it’s small and he knows how to work it out accordingly? The degree of precision requested is not going to happen), hurried calculation of insulin doses when it’s lunch and recess at school and my boy is in a hurry to get going, eat and go do whatever teenage boys do.

We have a great team supporting him. Our CDE is lovely, totally gets how hard this is, never judges, is the best advocate for my son, and listens to what he says. We have access to a dietitian, see a fab paediatrician and endocrinologist.

Have our big endo clinic next week and I hate it. There, I’ve said it! I know the hba1c is going to be higher. I know we have done all we can to avoid this. I know there is a chance that they will want to take my big, beautiful boy into hospital to help work out what is going on and I’m crying as I write this at the thought of how he might react to that.

It’s Thursday morning in Australia. Monday and Tuesday, my son’s levels were pretty in range, even though he had a sore throat and runny nose. Yay! I felt like super mum as I danced around the kitchen making dinner. Tuesday night, the same. How good is this? Wednesday night, big zig zags today! I leave it for a few hours then ask my son how school was. Talk about the normal stuff, I wait a bit then ask him how his levels were. He looks at me and says, “Not so good”.  Have a quick chat, the same one we have on days like these and we still don’t know why the zig or the zag. And there it is folks, the mood changer.

Diabetes does not define my son, his diabetes does not define me. Yet………

The big, shiny sunshine in the midst of all this is the Diabetes Online Community.  This great family of people all across the world who just get it! I am so immensely grateful to those who read this, who nod their heads, who feel compassion, who empathise with what my little family in a small town in Australia is living through.

Diabetes Blog Week- Day 2 – Feeling Lucky

The Cost of a Chronic Illness – Tuesday 5/16  Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?

I find it hard writing this post. We live in Australia and if I were to complain about the little things that annoy me I would sound pathetic. There are people in the world who do not have access to insulin. This is why charities like Spare a Rose are so important.

I know there is such an awful situation in the USA at the moment. I follow what is going on on Twitter and I feel sick for everyone there. The stress of not knowing if you will be able to afford insulin or the sacrifices that will need to be made must be very scary indeed.

I do not know the feeling of worrying about being able to afford insulin. My son has a healthcare card which gives him an even greater reduction on his insulin, meter strips etc for as long as he is a student. We have a supply drawer full of needles, meters, ketone strips, glucagon etc.

We have access to an amazing team locally who will see us as often as we need and are available via text and email when things go wrong. Our paediatrician is available and has a good knowledge of diabetes. We see a paediatric endocrinologist every six months. How lucky are we?

My son, if and when he wants to, can have a pump to use to manage his diabetes. We are lucky enough to be able to afford the private health care which would make this possible.

A recent bitter sweet victory was the funding of CGMs for under 21s. Why bitter sweet? It’s fantastic for under 21s but what are they expecting to happen when those kids who have become reliant on the CGM turn 21? A lottery win? What about adults managing their Type 1 diabetes? I can only imagine it must be very hard for them if they want a CGM and cannot afford the costs. We can only hope that this subsidy will be granted to all those with Type 1 diabetes.

We have access to great food and have jobs which mean we can eat well every day.

I know there may be others in Australia who may not feel so lucky. I can imagine our story would not match the experience of everyone here.

It is so sad that our experience is not that of all those who have diabetes. I only wish it were!

 

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!

Diabetes Blog Week- Day 1

Diabetes and The Unexpected – Monday 5/15

Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected? 

I’m going to tackle the latter part of today’s challenge! 

Context: My son was diagnosed with Type 1 diabetes three and a half years ago.

GOOD THINGS DIABETES HAS BROUGHT TO OUR LIVES

AN ABILITY TO DO MATHS– I really do suck at maths and my poor wee brain turns itself inside out doing calculations for new recipes. I find now that I can add carbs up in my head and divide them by the number of people eating the food with greater speed and accuracy. It does take my total concentration. If my husband comes across me in the kitchen with a furrowed brow and strange facial expression, he knows to leave me alone. I’m either counting carbs or doing my pelvic floor exercises! If I can ever master doing both things at the same time, I will let you know! 

A KICK ASS ATTITUDE – I used to worry about what people thought of me. Now? Not so much. I have taken a school principal and his deputy to task when my child was unsafe under their care. I know how to cut to the chase with an issue and I am afraid of no one when it comes to my children being safe. 

ACTING SKILLS – there are days when I am exhausted either from worrying about all the things mums stress over or have concerns about the added whammy of having a child with Type 1 diabetes thrown in. I work full time as a teacher and I do totally love my job but there are days when I’m exhausted and would rather stay home and binge on Netflix. I can’t so I slap on my makeup, and go to work. 

I know that my son has his own version of this. After a rocky night, he still gets up and goes to school and does his work. He must feel pretty crappy at times but he never lets it show. Sometimes we have a quiet hug before he goes out as I need him to know that I get it on some level. I may not have diabetes but I am his mum.

MULTITASKING I’ve become really good at faking total engagement in meetings and in class whilst being able to imagine where my child is, and what his blood glucose levels might be. You know what? I must be bloody good as no one has ever noticed and when there are less stressful moments, I can race through work related tasks with a speed and focus that I did not used to possess. My nodding at meetings is in all the correct places and, after over twenty years in this job, my classes don’t actually require my 100% attention.

My son is an expert mulitasker who can be heavily involved in a rugby game yet still read my frantic facial expressions from the side line that he needs to check his BGLs. He can quickly come across and do a check at half time without losing his concentration on the game. That is impressive.

GREATER COMPASSION-  It reminds me of when I was pregnant and I would get teary over ads on TV. I am hopeless when I see a family experiencing a difficult situation. It doesn’t need to be diabetes related. I could cry for the kids in my care who have extra challenges in their lives and I carry their stories with me and change how I deal with them and their families as a result.

This (Aretha Franklin I Say A Little Prayer)is my anthem as I’m looking in the mirror in the morning, getting my ‘game face’ on for the day ahead. 

I can see this in my three boys. They get that life can be tough for people for so many reasons and they are not quick to judge. This will be a great skill for them to carry forward into their adult lives. 

AN ABILITY TO FEEL LIKE YOU ARE FAILING REPEATEDLY YET NOT GIVE UP- I’m Scottish and I take my inspiration from Robert the Bruce ( here is the story) watching the spider in the cave. We chase the ever elusive perfect blood sugar levels. We very rarely get them in range for a whole day at the moment and yet every day I see my son get up and get on with life without ever complaining. 

We all try so hard to be perfect parents and diabetes has taught me that failure is ok! I cannot always meet the standards set, there is nothing to be learnt from this failure most of the time as diabetes does not acknowledge effort put in and yet we keep going and most of the time life is good. This, I think, is the most important of all.

Sitting with the sadness

Sometimes you just have to sit with the sadness.

My son has had type 1 diabetes for over three years. It has become part of what we do: an annoying interloper whose demands have to be satisfied at every turn but mainly we muddle along quite nicely.

Recently though, I have felt a real sadness settle over me. I’d been ignoring it. Life is busy so it’s not hard to keep on moving. Three kids, work, we all know some version of the routine.

Holidays are here now and it cannot be outrun any more. Tears have been a secret companion in the last couple of weeks and often for no apparent reason. So over the last few of days, I’ve not run away from how I feel. I’ve cried my tears and sat with my sadness and through that, I seem to have figured out why I feel like I do.

The baby that I had, that I fed, whose nappies I changed and for whom I had dreams and hopes, is turning into a man. I need to grieve that this adulthood which he is entering is not quite the one I had imagined. I know it’s not all doom and gloom and my mission every single day is to make sure that diabetes does not dominate. I didn’t, however,  think about how it must be horribly normal to go through the feelings of grief that a parent has at diagnosis at later times too.

Recently lots of things have been changing. It’s all the normal stuff : school exams, learning to drive, moving over to winter sports, going out more with friends, girls, work. My son is amazing and does not hold back on anything, which is exactly how a teenager should be. My job in the background is to figure out  how all this can be done and often this can involve emails to our fabulous educator (to adjust insulin doses)  or to the not so fabulous school ( to query diabetes provisions for senior exams or try to organise for the DE to talk to staff). I try to be discreet and not in my son’s face. I know he thinks about his diabetes too so I don’t want to add my concerns to any he may have. 

As his big brother is heading towards the end of his high school education, we are helping him plan what he may want to do. A deposit for schoolies (a horrid Aussie tradition, in my opinion) has been paid from his savings and university open days will be visited in the upcoming months. This is what has forced my brain to consider the options for my second son, the one with Type 1 diabetes, who will have all these decisions to make next year. 

I could vomit at the thought of him taking off to schoolies for a week. The temptations, in all their shapes and forms, are huge there. Then what about uni?  We do have a local uni but why shouldn’t he go off and experience the fun and independence of undergrad life: freshers week, juggling a part time job with uni, sleeping in shared accommodation, etc. My mind has been racing ahead in a way that I have until now managed not to do. Taking on one thing at a time has got us through these last three years so I need to stop worrying and live life now. The future will come soon enough.

Now that I know why I am feeling like this, the tears have stopped. I’ve gone back to doing what I did when my son was first diagnosed. 

I’ve been walking and thanks to a new family subscription to Apple Music, I have the funkiest playlist which I play at top volume as I pound the streets. These cool sounds and the incessant beat of the tunes of my youth, with a few modern numbers added in by my kids to keep me up to date, do not allow my brain to worry. 

The Smiling Mind app on my phone has been used every day and the breathing exercises and focus on mindfulness are really helping me regroup.

Last night, I was feeling a bit low after a successful but tiring camping trip. Connecting with others who understand about diabetes felt like the right thing to do and a pleasant hour was spent with the amazing people on #OzDoc on Twitter (always there on Tuesday evening from 8.30pm, please do come and join in). I’m so glad I did. I needed to be amongst adults who had survived those years and who, despite issues they may have, are living good lives. 

I’ve sat with my sadness and I’ve looked it straight in the eye and I’m fine.

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!

I am an insulin pen

I am no ordinary pen.
My story is written in the veins of those whom I save every day.
There is no ink in me.
I push insulin through my nib into the flesh of those who need me.
Hands grasp me, dial up the dose required and plunge me into their flesh,
Multiple times of every day of every week of every year.
My needle pierces the skin, bringing a sting of pain.
Some consider me inferior, as technology could easily replace me
Yet
I am loved by many for my lack of intrusiveness and for the comfort of knowing that I will never let them down.
I have hidden strength in my little vial and never forget this.
Treat me with disdain and I can take you down.
Love me, handle me with care and attention.
Because of me, people lead lives both ordinary and amazing.
This is the gift I give.
The rest is up to you.