Wednesday, 15 June 2016

Type 1 Diabetes A Parents Feelings

We have had type 1 in our lives for 2 years and these years have been filled with many emotions and feelings, but the main ones have been confusion and worry.

I shall clarify why these two words came to mind, let's start with confusion. This happened as soon as OB was diagnosed. It was the numbers people kept telling us, blood sugars readings, ketone readings, insulin dosages for long and short acting, working out food ratios. The main question we asked over and over again was "is that number good?" We simply had no idea what these numbers actually meant, they had no context.

Then came leaving hospital. This is your meter to test bloods and remember to change the cartridge in the clicker and order more test strips. Here is your insulin long and short acting, can you remember how to change the cartridge and always check your giving the right one. Remember to order more insulin and keep it cold. Ketone meter you will need this if he is sick. You need a sharps bin, speak with your local council. Here is your orange injection we hope you do not need this but if you do speak with 999. As parents our heads were spinning with information. Despite having a nurse on call 24 hours a day, we were a tad concerned if we could keep our little boy alive for the next 48 hours. We left confused and worried.

Next is carb counting yes carb counting. Scales were purchased and the weighing of food began, my phone calculator has been very useful. It was yet more numbers, reading packaging, finding packaging from the bin, looking up intimation online, swearing at packages that have nothing on them, staring at the carbs and Cals book for a miracle answer of a meal you have made and really not sure how to calculate the number of carbs. Finding out bread sends him sky high and takes forever to bring him down. I am now pretty good at looking at food and being able to judge the amount of insulin needed, but we are often still confused about food in general.

Now two years later we have nailed understanding all he numbers both good and bad. We have sharps bins and repeat prescriptions are sorted, though it did take a lot of phone calls.

The confusion now is the fact type 1 does not have a rule book. We could give OB the exact same meal two evenings in a row, when has the same blood sugar reading and it would lead to a different blood sugar results. These are some of the factors we are thinking about when considering his insulin.... is it hot or cold, is he stressed by something, is he coming down with a virus, is he growing, is he going out to play. Everything changes the levels you get. The dawn bloody rise, meaning his levels rise from around 5am not everyday either now that would be consistent. This means a whole load of extra insulin, so that the meter does not question our ability to manage his blood sugar. We swear it tells us off sometimes. They grow and have growth hormones you increase levels then hypo them you decrease the next day and send them sky high. Yes you get it confusion rules.

The next one is worry, we get this a lot as we have to manage OB type 1, he has a sever speech and language disorder and ASD. When we get the insulin wrong it breaks our hearts, if we send him hyper or hypo it's a worry, one way or another he feels pants. How could we get it so wrong we ask ourselves over and over again. We re read the book, check the levels we gave him, what lessons can we learn? what did we miss?. We worry that we are causing him long term health complications by not getting his numbers right. We worry he will not wake in the morning. We fight with him in his sleep o check his levels and worry if we correct or not if he is high or if he is low how do we get food into him. Any slight problem health wise we question, we over examine, could it be a complication, have we caused this by not managing his type 1.

These are not easy emotions to live with 24 hours a day but that's type 1, the blood testing and injections are not fun but you know your helping your child, it's the emotions behind their readings that can be very hard to cope with. When they get admitted into hospital for a simple virus, everyone else has a day sick, we are rushed via ambulance to hospital. They try to get a cannula in when he is screaming and here comes the guilt and worry in a huge wave, you wake every hour as they test, you argue with nursing staff and who do not understand his condition but will be very sure your wrong. Welcome to the world of type 1 diabetes it's a roller coaster.
Despite all this our little boy is amazing he copes so well, he has an active, fun and laughter filled life. We as parents take the worry, we make sure he will never miss out on anything due to his type 1, even if that's the queens birthday celebration with a huge slice of cake.
A Cornish Mum

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6 comments:

  1. This sounds horrendous! It is all consuming and I really do take my hat off to you. It is hard enough dealing with the odd virus here and there, but to have all that to deal with 24/7, I think you are amazing. I know that you just get on with it, because you have to, but I admire you for it. Alison x #justanotherlinky

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  2. I can't begin to understand how it is for you. I worry about my child daily without diabeties and worrying about their life. You sound like your doing amazing in a very stressful situation and making life as normal as you can. Thanks for linking up to #JustAnotherLinky xx

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  3. Misery Guts is Type 1 diabetic so I understand what you're going through, but can't imagine what it must be like coping with a diabetic child. It sounds like you're doing great x #justanotherlinky

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  4. Oh my gosh what an amazing boy you have, coping with all of that. I have a friend who has type 1 and never really understood the severity until I worked with her. I always have such admiration for anyone with type 1. #picknmix

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  5. Oh sweetheart you know I understand completely. The realisation when you leave the hospital and suddenly get hit with the responsibility, the realisation that this is now your life and you're in control of such a scary thing.... or completely not as Type 1 is a sod who likes to keep you guessing constantly.

    Thanks for linking up to #PicknMix

    Stevie xxx

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  6. Really tough to cope with - so glad you have the garden (and wine) to help you relax and take a breather xxx

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