What not to do! The Opposite of Tricks and Tips- Diabetes Blog Week

Tips and Tricks – Friday 5/20 Let’s round out the week by sharing our best diabetes tips and diabetes tricks.  

When I saw what we were to blog about today my heart sank! I make mistakes all the time so from my now quite considerable experience, I can certainly pass on some advice to mothers of children with diabetes: what not to do!

Night time blood testing: 

These have all been tried and tested on my poor child. Do not:

  1. Try to use your phone as a torch by holding it between your teeth whilst simultaneously doing a finger prick. The angle at which you have to hold your head in order to shine the torch on the sleeping child’s hand means that your head is so far back that the hand is no longer in your field of vision.
  2. Use a camping torch on your head. Yes, it certainly does free up your hands but the look of terror on your child’s face when they wake due to the intense light in their eyes, is one you will not forget in a hurry.
  3. Choose the wrong child when entering a dark tent in the middle of the night to do a blood glucose check. Nuff said there!
  4. Take offence if your sleepy child chooses their middle finger for their blood test and even if they stick it up in a way that in other circumstances would get them in trouble , let it go! They have to get their revenge sometimes!
  5. Forget to wear your glasses. Leave them next to your bed so that you put them on as soon as your alarm goes off. If you need to make corrections to high levels, 5% can look very like 10% when you are flying blind.

Accessories. You will not need :

  1. A small handbag! Even if it’s cute, in a sale and made from Italian leather , you will not be able to use it and it will mock you from the depths of your wardrobe.
  2. Jelly beans in your bag when you are premenstrual! You know they are for your child’s possible hypos but your desire to eat them will be so strong that you will not be able to resist. You will feel guilty for the rest of the day. Stick an extra popper in your bag instead!
  3. Cheap make up! Invest in some good quality makeup. You know you deserve it! It covers up the bags under your eyes from the night time checks and stops people asking if you’re feeling sick! I’ve had to tell my mother in law to stop asking me if I feel sick when she pops into the house on a Sunday morning. This is what I look like without makeup , do not try to rub away invisible stains under my eyes (true story, I swear!). This is what your son wakes up to every morning so deal with it woman! ( I do love her, just not when she licks her finger and attacks my face to remove stains that are just under eye shadows from lack of sleep!)

Cooking and food. You must never:

  1. Forget the maths you learnt at school. You forgotten it already? You poor sod! Relearn it pronto!
  2. Lose your calm whilst making calculations under extreme pressure- it reminds me of my brother’s paramedic training where he was forced to drive at high speed whilst answering complex medical questions. The more likely scenario for us will be a starving child and buffet type meal. You may develop a muscle twitch in your eye when computing the carbs. Be careful who you look at at this point as you may receive some unwanted advances from the strange little man at the end of the buffet who thinks you are winking at him! Read this poem about being a carb counting queen.
  3. Try to pretend a cauliflower sauce is carbonara. If you are going to tell lies about food, it must taste nice! Chocolate mousse made from avocado, maple syrup, cream and cacao is a rare exception!
  4. Give up! Trying to learn to count carbs when starting from scratch is bloody hard. Healthy, home made food is a great goal to have but dialling a pizza now and then makes life feel normal!

You! Do not:

  1. Forget about yourself. In the six months following diagnosis, I did not go out for fun. What if something happened to my child when I wasn’t there? Nothing bad happened and I was there so, slowly but surely, I let go. I do go out now and I’ve learnt to trust my son and those around him. My son also needs to see that him having diabetes does not prevent me from living my life. If I want him to live life to the full, don’t I need to do the same? Put your fears in a padded cell in your brain and deal with them when you feel up to it!
  2. Drink four glasses of prosecco in quick succession then fall asleep in the corner thus missing out on the fun night you’d been looking forward to for weeks! 

    I had such fun putting this list together, reliving some crazy moments from the last two years. If I look at the lists, and not the ‘do nots’ that come before them, these are all things I have done. We have survived and even had a few laughs along the way! Does anyone else have a list like this?

     

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    Not drowning but waving- Thursday- diabetes blog week


    The Healthcare Experience – Thursday 5/19? Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

    I consider us to be a very lucky family. Upon diagnosis, we quickly met the Diabetes Educator, dietician, paediatrician and, in the months that followed, our endocrinologist.

    At the centre of this is our Diabetes Educator. There’s not much she doesn’t know about our family after two and a half years. She was there when I first cried, and she’s been there for us every step of every day.

    When my son’s blood glucose levels have gone crazy due to illness or a growth spurt, I’ve seen her text at 10pm to check in and make sure all is well. There is never criticism. There is always listening. She knows when we’re drowning and when we’re just waving.

    When we talk, my son is the most important person in the room. I sometimes speak more but all questions are addressed to him. It’s the same when we see any of the team.

    I have nothing but praise for our team and I honestly cannot think of anything I’d do to improve the access we have to them and what happens at our three monthly appointments.

    Private Health insurance – I haven’t had to have much to do with them. My son doesn’t want a pump at the moment and that would be the only reason I could think of to call them.

    We live in Australia and I think we are pretty damn lucky. We don’t have to pay for much at all and have never been questioned on how many blood checks are done a day. There’s nothing we have needed that we have not been able to get.

    If I had a wish, it would be to make it compulsory for schools to have an annual education session from the Diabetes  Educator. This should happen as soon as there is one child with Type 1 diabetes in a school.

    Every year, I have to fight to make this happen and in my son’s school there are six students with Type 1 diabetes. I am proactive and I know the jargon of education and I’m not afraid to get in the face of those in positions of authority. Bottom line is- my child should be safe at school. He has a management plan to help manage his diabetes at school yet there are times when it is not followed. School needs to be a safe haven for our children. The real world will come soon enough. It feels to me, that a tragedy will have to occur in a school to force this change to happen.

    I’ve stated in an earlier blog post this week, that I worry about one thing at a time so I haven’t projected too far into the future. I don’t know what will happen when my son gets older and how he will transition to being an adult either locally or if he chooses to move away for study or uni. One thing at a time!

    To be or to have, that is the question! Diabetes Blog Week

    Language and Diabetes – Wednesday 5/18 There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”.

    The first two verbs you learn in most languages are ‘to have’ and ‘to be’. Once you known them, you can say so much.I teach French. That’s my job and I love it! As with many languages, these two verbs are irregular in French. ‘Être’ to be, and ‘avoir’ to have, don’t follow the rules. Most of the time we use them in the same places as we do in English but there are some notable exceptions. We practise and practise these verbs so we know when to use them correctly.

    Along comes type 1 diabetes into our family and suddenly I am aware of the importance of these verbs in another context. Initially I wasn’t even aware of the difference between saying ‘my son is diabetic’ and ‘my son has diabetes’ but it didn’t take me long to see the nuance of difference. I am not critical of the language other people use here but I am always careful to say that my son has diabetes as, saying he is diabetic, seems to make it define him! He is the sum of his parts and diabetes is only one part of that. It is not all of it. It does not define him.

    ‘Suffer’ is another word which I shudder to hear when it’s linked to Type 1 diabetes. It’s such an emotive word and for me conjures up images of people who are incapacitated and writhing about in pain. My son lives a full, active life and when I see television news items which refer to those with diabetes suffering, I want to throw something at the television. I feel that words like this turn people into victims and disempower them. How is hearing language like that supposed to make people feel? 

    Any kind of diabetes being used as a punchline in a joke, will set me off. I took leftover food from a diabetes fundraiser into my work last year. A lovely man I work with, reached over me to grab a cake and asked, “This won’t give me diabetes, will it?” Once I’d picked my jaw up off the floor, I looked at him and said,”That’s not even funny! Diabetes is never a joke, ever! Ok?”. He looked very sheepish and came over later to apologise. We had a short, strained conversation where I enlightened him about diabetes, Types 1 and 2. He will never make a joke about diabetes again. Of that I am sure. Do not mess with a Scottish mammy! 

    Three years ago I knew almost nothing about diabetes. Now I speak another language of acronyms- I can splatter my conversation with BGLS, PWD, MDIs but the doesn’t means that my PWD on MDI has his BGL in range despite his best efforts! At the end of the day, words are words but WE NEED A CURE!

    You can do anything (but please, one thing at a time)!

    Today it’s Tuesday of Diabetes Blog Week. We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

    ‘You can do anything!‘ is the implicit message we give our son. When he says he wants to do something, for me, the trick is not to say much. He watches my reaction very carefully. I nod and say, ‘sure!’. The detail comes later but in the first instance my son needs to know that his diabetes is not an impediment to any activity. I hide my churning stomach and pack the worries away in a padded cell in my head which I will visit later.

    How does my son deal with his diabetes? He lives life to the full. He doesn’t want to talk about it. He lives with it and that’s just fine. He is my Boy with the egg. At 15 years old, 185cm tall, and skinny as a rake, I watch him lope off to school, all elbow and knees, and imagine that little egg in his pocket. I cannot express how proud I am of him!

    One thing at a time’, would be our unofficial motto!

    My husband used to laugh at my love of planning. Now, not so much! I stopped trying to anticipate everything when I learned what a fickle beast diabetes is.

    When my son was first diagnosed with Type 1 diabetes, two and a half years ago, I’d worry about his long term future. How would he ever leave home? Who would do his night time blood checks? What do adults do? Do adults have these crazy fluctuations that my son has every couple of months? I’ve learned, after nearly driving myself crazy in the first few months, to slow down and try to focus on the next thing.

    At the moment, that’s dealing with a fractured right arm that’s in plaster up to his underarm. Once we’ve navigated that, we’ll deal with the upcoming overseas rugby trip!

    There is nothing that my son hasn’t done right from his diagnosis- school camps, overnight sporting trips with school, sleepovers, lots of camping on unpowered sites, an overseas trip, playing various sports both at school and through local clubs, working part-time in a fast food restaurant. These are the stuff of life and the things that worried me relentlessly in the early days. 

    We are lucky to have an amazing guardian angel, our Diabetes Educator, who told us right from the beginning to make diabetes fit into our lives and not the other way round. If you’d told me when my boy was first diagnosed that all these things could be done, often with a heap of meticulous planning, but without any major disasters, I’d never have believed it! We get there, one thing at a time!

    Message Monday- My dreams and hopes.

    Why the French title? Sometimes French words just sound better!

    My hopes and dreams for my son who has Type 1 diabetes are so important and keeping positive about every aspect of his future keeps me motivated. This is the same for all three of my sons but, in the face of so much negativity around diabetes, it becomes all the more pertinent when you want to keep the image of a bright, positive future alive for a teenager with Type 1 diabetes. 

    This time last year I stumbled across diabetes blog week. I found blogs by other parents and suddenly I didn’t feel as alone. From this grew the idea that perhaps I could write a blog too. I spend so much time thinking (but not talking) about my son’s diabetes, so why not write about it?

    One of the first posts was a poem I’d written. I am not a poet. I’m a mum of three boys, a wife and a full time high school teacher. Walking was my sanity in the early days after my son was diagnosed. I’d throw my self out of bed and into my walking gear and pound the streets. My head was trying to make sense of what was happening and I found myself constantly reliving the day of his diagnosis. 

    I’m pretty together in my working life and didn’t find myself often in a position of helplessness yet here I was,  feeling raw and exposed. I wrote this poem and it felt just right to share it with others who understood the feelings it expressed. The connections I’ve made through sharing this blog have given me the enthusiasm and desire to continue, albeit more sporadically. Making connections with other parents online helps so much when there is a absence of connections in my ‘real’ world.

    I love the diabetes online community the most when I feel connected or when it gives me messages of hope. I know the reality, the potential future complications for my son, but I try to help him deal with his reality with realism and, together, we face each challenge as it comes. I love to read about those who have lived their lives with diabetes and thrived in the process. I don’t necessarily mean by climbing mountains or swimming across vast oceans. Things like finding love in the midst of diabetes chaos, working at jobs which are fulfilling, travelling and experiencing the world would be the pinnacle of success in my book and those are the blogs which fuel my hopes and dreams.

    Now two and a half years after diagnosis, I know my son and our family have come a long way but I read this poem and I’m right back in that day. It must be around a year since I wrote my first blog post and it feels right to connect with these feelings again.

     I lost a layer of skin

    I lost a layer of skin
    As we entered the hospital on the day of the diagnosis.

    I didn’t feel it fall off. It certainly didn’t hurt.
    It gently slipped off with less than a whisper, unnoticed, like a soft, satin scarf.

    I wish I had noticed it leaving.
    I imagine it floating gently over the roofs of nearby houses,
    Carrying with it the half formed dreams I alone held for my child,
    leaving behind only rawness.
    Over days, weeks and months a strange new layer has grown in its place.
    It’s a bizarre contradiction – tough yet sensitive.

    Watching the drops of intense ruby blood makes it want to shred itself
    Glimpsing needles pierce the stomach where raspberries were once blown makes it ache.
    Seeing the somber eyes of a child learning to cope leaves a hollowness.
    Dragging a weary body through night times of wakefulness leaves it feeling prickly.

    It’s certainly more careworn than the layer it replaces but it’s strong and it needs to be.
    It bears the brave scars of battles: some internal and silent, others of epic proportions.

    Hiding the multitude of maternal fears which largely remain unshared have hardened the carapace.
    It has to be tough for the times when it’s all too much for a child who just wants the old normal.

    The old normal isn’t coming back.
    I like to imagine that I’ll find that layer of skin again someday and fashion a purpose for it in this new existence, for there is hope.

    In the midst of chaos


    I took my phone to class with me yesterday. It’s rare for me to do that nowadays as I’m confident my boy can manage his diabetes. Yesterday I woke feeling uneasy as he was playing in a rugby competition at school. Lots of short games with only seven players on each side.

    When my phone rang, the students in my class jumped a mile and started frantically groping their pockets until they realised that the TEACHER was the guilty one. Students’ phones aren’t allowed in class. I put on my most serious voice and said, “medical emergency” (wondering what I’d say if it wasn’t) and took the call at the door.

    My son’s teacher explained that my boy had been involved in an awkward tackle and had a suspected fracture of his wrist. My husband collected my son and I met them at the emergency department.

    Fast forward several hours and lots of questions around how he hurt himself and was his the kind of diabetes where he had one or two injections of insulin per day. The first time someone asked the insulin question, I was quite surprised but by the fourth or fifth time I had my answer down pat. ‘ He is very healthy, has Type 1 diabetes and injects insulin six times a day’. Without fail, these health experts, nurses and doctors, were shocked. I’m not judging. They must have so much information to retain and they did want to learn about how he managed his diabetes and asked about the story of his diagnosis. My boy was gorgeous, especially  for some one who rarely talks about having diabetes, and patiently explained  his symptoms, diagnosis and how he manages it. 

    He was asked a couple of times why he wasn’t on a pump and he took these conversations in his stride. It did strike me that there aren’t boundaries for some people when they talk about diabetes. To pump or not is such an intensely personal choice, when you have to make it, but for those with limited personal experience with diabetes, it is seen as a natural progression.

    We then met the orthopaedic registrar who told us that an operation to realign the bones would be needed. We rocked up bleary eyed first thing this morning and the only hitch was an eager anaesthetist who wanted the usual full dose of fast acting insulin to be taken just prior to surgery, with no food, as his levels were rising. I questioned the wisdom of this as my suspicion was that this would then make his levels go very low. We compromised on a much smaller dose. I felt I could be proactive in getting what I believed to be the best dose of insulin. My experience, with the staff we had met, had led me to realise that my son and I, between us, were in possession of a vast amount of knowledge.

    After a successful surgery, I then met up with my son in the kids’ ward. This was familiar territory as its where he’d gone when first diagnosed. My son was in good form and I asked him to do a blood glucose test. We laughed as he tried to figure out how to do this one handed. Suddenly from the next bed came the voice of another mum.

    Looking over, I saw the most gorgeous little boy, arm in a plaster cast, just like my big son but his tiny form took up a third of the bed whereas my boy had to bend his big, lanky legs to fit in the bed.

    She looked at me and said. ‘We are the same: diabetes and a broken arm!’

    This little button was five years old and it had been six weeks since he was diagnosed. I wanted to scream ‘Where is the cure for this disease?’, but I didn’t. Instead, a lovely connection was made between me and this mum. She so reminded me of that sense of being shipwrecked on a foreign land that I felt when my boy was first diagnosed. In a few sentences, we forged a bond. We talked in a language that she was just learning. I’m at intermediate level and I realised that the rawness that comes on diagnosis has gone. I wrote this poem then. We swapped numbers and I hope we can meet up soon! In the midst of chaos came something positive.