My Diabetes Family – Growing up with the #doc

My Diabetes Family

I keep seeing this #mydiabetesfamily on Twitter and on other Social Media and it’s got me thinking about who my diabetes family is. Considering that I do not have diabetes, why am I even asking myself?

My middle son has had Type 1 Diabetes for almost five years. He celebrated his 13th birthday a couple of days after he was diagnosed, becoming a teenager whilst in hospital (cue the gift of a denim patchwork quilt, made by a local sewing group, which is still over the end of his bed).

My son’s diabetes family is small. It’s us! His mum, his dad and his two brothers. He lives with diabetes every day but it’s not part of his online presence. That’s all the family he currently wants or needs. He sees his medical team: an endocrinologist and a diabetes educator and they are his medical diabetes family. He is busy living his life, does what he needs to do every day and I think he does an amazing job.

My need for a diabetes family has been much greater than his. I also absolutely believe that the diabetes family I have around me has helped me to be a better mum to him.

I’ve always kept my online presence as anonymous as possible. I don’t ever post my son’s name and never post photos that would identify us. Strange isn’t it that here I am then, with a fully functioning pancreas and what I believe is the most amazing diabetes family?

I feel like I’ve passed through all the stages of life with my online diabetes family. I stumbled onto the scene like an awkward teenager having written poetry and feeling very needy and in need of reassurance. I am so lucky that my clumsy and sometimes misinformed attempts to connect with people did bring me into contact with the #doc and more locally #ozdoc.

I found some great people to mentor me, read some amazing blogs and survived my “diabetes teenage years” as my son turned into a young man. I am so absolutely grateful for the patience that people showed towards me, for the advice, for the positive comments my blog received and most of all for the connections across the world that stopped me feeling so alone.

The next stage, was where I came into my ‘adult diabetes years’, becoming more of an advocate for my son and also for issues affecting the diabetes community. I got more involved, campaigning locally for CGMs for all those with diabetes and having some good conversations with our local MP. I also felt like I needed to pay back into this community and into the search for a cure or for research into ways to live with diabetes. Every year I’ve held a fundraiser for JDRF and with a great bunch of women. We put the ‘fun’ in fundraiser every year. This event allows me to reach out to around 50 top females and quietly educate and raise awareness while we drink bubbles and have a great afternoon together.

I’m fading into the background now, I’m trying to embrace my ‘middle aged diabetes spread’. I don’t write so much any more. My boy is almost a man. My job will never be done with any of my boys but it feels like I need to step back and let him go, well, as best as I can. The maternal tug will always be there. Some of what we have gone through in the last year has been heart achingly horrid and other parts have been amazingly positive but these are not my stories to tell. That’s my boy’s narrative and should he choose to share it one day, that’s his choice.

The contacts I’d made on #ozdoc and #doc and the invaluable advice received in private messages gave me the strength and courage to act on his behalf. Without this, I hate to think of how we would have survived. The very survival of these hard times, allowed me then to privately share some of the wonderful moments with people and make even deeper connections with some. My thanks are heartfelt and deep to those who were there for us.

There are a couple of mums, one in particular, who I’ve met on Twitter and we have been there with each other every step of the way. Chatting online through the night and sharing jokes and hopes and well as frustrations and doubts has meant that I can function fully and happily in my day to day life. We have plans to meet up one day and that would be just fantastic!

What I didn’t realise until recently is that I have become part of the ‘diabetes family’ that other people have. Over the last year, some people have made contact and let me know that they enjoy reading what I write. This was unexpected and such a beautiful surprise! I was backing away from Twitter and blogging as I’m not really sure what my role is going forward but I’ve come to realise that, in small ways, I can help others and perhaps be there in the background for them just as others were for me. Not quite a wise elder but more of a crazy Scottish sweary mammy whose heart is filled with love for this big worldwide community that’s been thrown together by diabetes. I salute you all!

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Diabetes Billboard

Diabetes is a billboard in my life.

Sometimes, it is on the side of the road and I see it there, reminding me of things that need to be done to help my son who has Type 1 Diabetes. As I drive to work its presence in the distance will remind me that we need to book an eye appointment for him, or that he is about to run out of needles for his insulin pens.

Some days, it’s a bit closer to the side of the road, when I’m seeing how many things my son needs to do and I know some days this is hard for him. Those days I’m very aware of it as I work out how to best help my boy do the things he wants to do.

Other times, like recently, it felt like my nose was pressed right up against that billboard hiding everything else from my view, stopping me from moving forward. I don’t have diabetes but after five years of watching my son live with it, it can loom large in my world.

When your child is growing and changing, doing their best to live a full, active life with a chronic condition, so many judgements are made. Some lack an understanding that there is a person in the middle of this condition.

Loneliness and total despair only begin to describe the feeling of having your nose pressed up against that diabetes billboard. I can only imagine there are many others out there who have felt the same. What choices do you have when it feels like there is no way forward? The only choice is to look back over your shoulder.

I was so busy looking ahead, trying to figure out how to get through this horrid time that I hadn’t thought to do this until crisis point was reached.

When I looked over my shoulder, I discovered a small unexpected group of people out there, following at a distance. I found comfort and knowledge in their open arms. I just needed to ask, and through their wisdom, love and support, calm returned and new way forward was found.

I am so thankful to this small crew of amazing people. They know who they are and the support they gave to my son and to me. I will never forget this and next time I will know to look over my shoulder. You should try it, you will hopefully get the best surprise.

Growing Diabetes Balls

I hope you don’t think me indelicate, but I need to talk to you about my balls! I may be a middle aged mammy but I own a beautiful pair of diabetes balls. They started to form when my son was diagnosed with Type 1 Diabetes. I didn’t know what was happening! I had strange outbursts and surges of rage. Then, as they do, my balls dropped. Now I keep them tucked away in my handbag, nestled in beside the jelly beans and the glucagon.

They only make an appearance when needed. I know my son finds it rather embarrassing when I need to get my lady balls out, and I wish with all my heart and soul that I never needed to see them again. Making sure my son is safe, especially in the context of school, has been a large part of my raison d’être for almost five years.

Keeping him safe has meant standing up to his school, making myself unpopular at times. It has meant taking chances to gently educate those around me when opportunities arise. It has meant quiet conversations with my son’s friends to ensure they are aware of what to do if he needs them. This has taken balls as it would have been so easy to say and do nothing.

If only we lived in a world where people understood better: where diabetes, of any description, was not the butt of jokes, where schools understood that having diabetes does not preclude a student from being a normal teenager, where you didn’t need to be really brave and stand up for yourself or your child.

Now I come to my rather delicate issue. I need to help my boy grow his own pair of diabetes balls. He will finish up with school and the children’s diabetes clinic at the end of the year. He will then be working for a year, and living at home before he moves off to university the year after. That’s the current plan!

I know I would say this but he is an amazing kid. He was diagnosed a few days before his 13th birthday, almost five years ago. This was just at the time where he was gaining independence: going out for the day with mates, taking off on his bike with a few dollars in his pocket for lunch, having sleepovers. He took that independence and ran with it, continuing to do so for almost five years. He is always busy doing something: multiple sports are played, he drives, has a part time job, is in his final year of school and in the last year, he parties and drinks beer!

How do you teach your child not to be embarrassed, especially as a young adult dealing with news situations?

How do you help them to find their voice ? To avoid getting into dangerous situations by being brave enough to speak up?

This is the challenge for him and for me.

Talking of balls, just so reading this was worth your while, I though I’d share some more balls, this time in the form of a recipe. These are a favourite in our house.

The Boy and the Egg pull some moves!

So here we have it. Remember The boy and the Egg? I wrote this not long after my son was diagnosed. He spent his 13th birthday in hospital a couple of days after his diagnosis. How times have changed! And how they’ve stayed the same!

So here we are over four years post diagnosis. How is my boy and how is that Egg? I’m so pleased to report that both are intact! Initially the worry was how my boy could play sport, navigate school, hang out with friends and still manage to take care of the Egg.

These days, the Egg goes on dates. Through what I can only imagine are passionate embraces, the Egg has not been smashed. The Egg has also been there when a heart was broken. Not my boy’s, but an amazing young woman who was his first serious girlfriend! He had sat with the Egg in his hands as he tried to think over how to be diplomatic and delicate in ending this relationship. The Egg lost a fierce protector when the relationship ended but having someone to share the Egg with is not enough of a reason in itself to keep a relationship going. (Note to self, as the mother of three boys, do not fall in love with your son’s girlfriends!)

The Egg is a frequent attender of parties where my boy can hold a beer in one hand and the Egg in the other and can apparently pull some dance moves at the same time. How amazing and terrifying is that? In order for this to happen, we had to have some Egg and Alcohol sessions at home. We gradually increased the number of beers my boy had over the course of a few weeks, making sure he held on to the Egg and never left it where it could be smashed. We checked frequently throughout the night that he hadn’t rolled on it and smashed it and so far so good! We have had to be totally realistic about alcohol. We are living in the real world and facing the challenges in a way that reflects the reality of our boy’s life.

Driving with the Egg on the dashboard presents a few challenges. Keeping an eye on it and the road can be hard, especially when you are a learner and you have a parent there with you, trying to explain what to do. My boy has recently moved from an automatic to a manual car and those gear changes certainly increase the adrenalin and those kangaroo jumps can be scary and are accompanied by pleas from my boy that I stop swearing.

Working in a fast food outlet with an Egg in his pocket has been interesting. Finding a part time job that is permanent , rather than casual, has meant that employers have had to acknowledge the existence of the Egg. They have been offered the chance to be trained in Egg Preservation but it hasn’t been needed so far. The main thing is that my boy can take that Egg out of his pocket if he needs to as it isn’t a secret. He can take time out on a shift and make sure it’s alright. He gets holiday pay and sick pay which is an incredible thing at this age and offsets the lower hourly rate.

We live in the country and many of my boy’s friends live in other towns and villages which are not necessarily close by. This means he has days and nights away and as he has expanded his social circle it means the we do not necessarily know the families of these friends. Trust and honesty have never been as crucial. We have a little kit bag which serves as a nest for the Egg. When he goes off, my boy packs it full of everything he may possibly need for a couple of days and promises to text us regularly. He knows, if he has a big day or evening, that he’ll need to wake up during the night and check on the Egg.

Our boy has realised this summer that having the tiresome responsibility of the Egg does not preclude him from all normal activities. He has taken on a more active role in looking after the Egg. We are still there as the Egg Support Squad in the background but as he gets ready to finish his last year at school and move on to a big exciting future, I feel like he has the world at his feet and a good grip on that Egg!

Hello, I give you my son’s heart and his non functioning pancreas. Please treat both with care!


Hello, you don’t know me but I know that you know my boy. You two spend hours on snapchat and messenger chatting about who knows what. I know there have been face to face meetings too. I think it’s time we had a chat! 

Here is a little questionnaire I’d love you to complete. Don’t look alarmed! It’s all cool!

Part A) Stand on one foot and answer the following questions whilst hopping:

– 24 + 57 + 63 + 82, then divide by 2, then divide by 15. Got that? Good girl! 

– 29 + 81 + 12 + 75, then divide by 3, then divide by 15. Still going? Well done! You may proceed to Part B.

Part B) How deep a sleeper are you? How many hours sleep do you average and do you wake up to alarms? Please write your answer in the space provided below.

Part C) Do you prefer routine or have more of a devil may care attitude to life? Think back over the last week please and write down the times at which you ate breakfast, lunch and dinner?

Part D) Imagine you had a cute boyfriend. For easiness sake let’s call him ‘son of mumoftype1’! A bit of a mouthful, I know but bear with me please! Imagine this boy suddenly collapsed. Which number would you call? 

Part E) If this boy felt brave enough to tell you that he had a medical condition called Type 1 diabetes, how would you respond? Circle your preferred response.

– nod your head and ask a few simple questions.

– say “that’s what my best friend’s uncle had and he died.”

– run

Part F) If you have made it this far, you are a keeper and I ask only one thing of you. Please don’t break his heart! 

Times they are a changing as the song says! I am really enjoying seeing my boys turn into men but I have suddenly become aware of how important a role potential girlfriends may have. Excuse my tongue in cheek look at this! 

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!

 

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.