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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    Situation Normal


    This week in the House of Testosterone.

    Son X:

    Played a game of touch football on Friday night.

    Played cricket on Saturday morning for almost five hours.

    Trained for cricket after school one afternoon and went to the nets with Son Z on three other occasions to improve cricket (or possibly to avoid tidying room).

    Played basketball in the driveway with brothers and friends.

    Lay around playing new Playstation rugby game for several hours. Honed skills.

    Avoided doing homework with the skill of a pro.

    Son Y:

    Played two games of touch football on Wednesday night.

    Played basketball in the driveway with brothers and friends. Allegedly used rugby ball to shoot hoops thus causing crack in windscreen of nearby car.

    Lay around playing new Playstation rugby game for several hours. Honed skills.

    Finished two school assigments with minutes to spare.

    Son Z:

    Played a game of touch football on Friday night.

    Played one game of touch football on Wednesday night then refereed a game of touch.

    Played cricket on Saturday morning for almost five hours.

    Trained for cricket after school one afternoon and went to the nets with Son X on three other occasions to improve cricket (or possibly to avoid tidying room).

    Played cricket for school team.

    Lay around playing new Playstation rugby game for several hours. Honed skills.

    Flitted from one assignment to another, achieving not very much. Will need to hit the ground running this week!

    ………………………………………

    One of these boys has Type 1 Diabetes. Can you tell who it is? I thought not! 

    One of these boys is the boy and the egg: my amazing, busy son who has Type 1 diabetes. The other two are pretty fantastic too, in their own perfectly imperfect ways!

    I imagine in homes all over the world, people with Type 1 diabetes live normal, perfectly imperfect lives every day just like everyone else and manage their diabetes as best they can. I looked back this week at what my three sons achieved: mainly normal boy stuff with quite a lot of sport, not too much study and the usual measure of shenanigans!

    Looking at how people live full lives with Type 1 diabetes feels me with hope and joy. I love beyond type 1 for the way in which it does this.

    A ‘what if’ day

    Most days my son goes into the world with total confidence and a good level of trust in those around him. I’ve trained myself not to worry about him and not to pester him with texts about his BGLs and what he’s eaten.

    Days at work pass very quickly and I’m pretty good at focusing on the task at hand. There’s not much time for naval gazing when you are a teacher. I trust my boy to do the right thing. What worries me is the ‘what ifs?’.

    These are things which come from nowhere, which are outwith my son’s control but are all part of the rich tapestry of life with Type 1 diabetes.

    These days usually come after a ‘diabetes disaster’. These rock our world when they happen and our sense of confidence is shaken. It takes me weeks, if not months, to feel good about letting my son do normal teenage things after a disaster. I can see he feels the same but he still does everything.

    What is a ‘diabetes diasaster’?

    Firstly, we are lucky that we haven’t had many!

    My son’s recent school excursion, where he had two hypos, told the teacher he was dizzy and was told to go and lie down for a bit was a near miss. A teacher telling him it was possibly just low blood pressure due to having grown so fast did not help. He so wanted to believe that this was true! What saved him, is that he had the sense to text me, telling me he was dizzy and didn’t know what to do. For him to text me anything about his diabetes was a total red flag that something was very wrong.

    Since this happened, he is absolutely worried about having hypos at school. I don’t blame him. The school is coming on board with education which is a positive thing for all the students with Type 1 who go there.

    I think: What if he hadn’t sent me a text? What if he’d had a fit in front of his peers? What if he’d gone back to school then got the bus home having used all his poppers? 

    None of these things happened.

    He thinks: What if people start seeing me as the boy with diabetes? What if I collapse in front of my mates? What if the teachers stuff up again? 

    None of these things have happened. 

    Diabetes does not rule our lives so when my son asked if he could go straight from school to watch his friend’s rugby final tonight, I said yes. His team didn’t make the finals which could have been awkward in the House of Testosterone when both of your brothers both made it through. He’ll get a lift home at 10pm with his friend’s dad. I’ll be standing at another rugby field cheering on number 3 son whilst my husband does the same for our 16 year old.

    Diabetes does not rule our lives so of course I let him go. Accepting that I will have a ‘what if’ day is my role as his mum. I’m sure there will be many more as he goes on his way and has his adventures. The main thing is, that he has his adventures and that I keep my ‘what ifs’ to myself!

    Dear teacher

      
    Parent teacher interviews last night. Great to hear that these teacher’s know my boy. I know that our beloved educator is going to do a talk to the staff soon. Last week we had a near miss and the lack of awareness could have come at a huge cost to my son’s health. 

    It has all been a reminder to us of how vulnerable we are when we send our children off. We hope that the teachers remember who our children are and what they need to do for them: it’s usually nothing but when things go wrong we need them to have a minimum amount of knowledge. I thought I’d been proactive but that was not the case.

    I know this job. I’m a teacher too. This makes it even harder as I know what a tough gig teaching can be. I feel conflicted but making sure my boy is safe is my priority.

    I wrote this poem at the start of this year when my son returned to school after the holidays. All my nieces and nephews in the Northern Hemisphere head back to school soon as we edge closer to our Australian summer. This is what I’d really like to say to the teachers.

     

    Poem on a child’s diagnosis – I lost a layer of skin.

      
    There is no denying that having a child diagnosed with Type 1 diabetes throws your world into a spin.
    I know it’s my son who has Type 1, not me. I am completely clear about that. I also know that he does not spend his day worried about his diabetes. He lives the life of every other 14 year old boy: it just takes more organisation for him. 

    I wrote this poem a few weeks after my son was diagnosed. I’d never written any poetry before this but it felt so good to write it down. The feelings I had were so raw and intense. Looking back, I can see that, as a family, we’ve all come a long way since then. That’s such a good feeling! 

    The Boy and the Egg

      

    A friend asked what it was like for my son to live his life with Type 1 diabetes.

    I always struggle to give an idea of life for my son. There are metaphors about taming tigers and dragons but that’s such a strong and scary image. I like the image of the egg better. Eggs are small, fragile and complex, quite like a pancreas in some ways. 

    I told my friend that, from my perpective, having Type 1 diabetes is like the Primary School project where students are given a raw egg. They must carry it with them at all times and take care of it. It can seem manageable at the start but generally by a day or so into this experiment, it’s not so much fun any more.

    My son has been told that he can live a full life and do everything that any other person can. Sure, he can and he does but he has to carry this egg and not let it smash. 

    He is so clever that he can play rugby whilst holding this egg.  What skill!

    At school he does assessments and makes sure the egg does not roll off the desk and smash. The grades he achieves may not always be the highest but he’s there and that egg has never once fallen off the edge of that desk.

    He hangs out with friends, manages to look cool yet still he arrives home with that egg intact. He’s the ultimate multi-tasker!

    He can let me carry his egg for a while but I have to give it back because ultimately he needs to know that it’s his egg. 

    There are times when I think he’d like to throw that egg right at my face as I want to check now and then that there are no cracks in it.

    The biggest difference between my boy and the Primary project: he will have to keep that egg forever.  

    What’s mine is mine and what’s yours is mine too!

    What’s mine is mine and what’s yours is mine too!

    This sums up my son’s attitude to the snack boxes in my pantry and it can be a source of friction amongst my three boys. My middle son, who has Type 1 diabetes, has his own shelf in the pantry. It’s well stocked with juice poppers and snacks which he uses as a hypo treatment. It’s also a general snack box which he uses for school lunch boxes, and quick carbs to have in the middle of rugby games.

    Everything is in packets worth about 15g carb each. I tend to buy the same snacks for the other two boys so their snackbox looks pretty much the same (minus the juice). If I buy something a bit different, usually as a bit of a treat, they disappear at lightning speed yet no one ever admits to having eaten them.

    The box of my son with Type 1 is sacred, never to be plundered by his brothers. Touch it at your peril!

    Their box however,  is regularly raided by my son with Type 1. They are constantly confused by how quickly the snacks in their box disappear. Interrogations are held and accusations are bandied around. 

    The fridge is full of home made goodies which lack the cool, street appeal of these snacks and, to be fair, I don’t know how they would survive being bounced about in lunch boxes. The line has been drawn. Home made means they are to be eaten at home. I’m okay with that. It’s all about balance.

    I used to hide secret stashes of extra snacks on the top shelf but now that my eldest is taller than me, he has found all my hiding places. I’m thinking of storing extra snacks in the bottom of the laundry basket as that’s one place never seen by any of the boys!