This post has been running around in my head for quite some time now. I don’t need to write down 10 reasons why I know my daughter is Type 1 Diabetic to know she has diabetes, erm, that made no sense whatsoever, great start Rebecca, you’re already waffling! As with many of my ‘behind the scenes’ posts this is a twofold exercise, firstly it’s cathartic and beneficial to my mental health, I need to do this every so often to unpick my emotions. I have to processes my role as a mother to a Type 1 Diabetic; I then manage those emotions in a logical fashion to be able to move forward in an orderly manner.
Hopefully by the end of this post I’ll sound less like a bloody robot too. THAT last sentence above is exactly why I need to write this now; I’ve clearly become completely detached to the baggage of emotion that comes with this responsibility. Deep breath Rebecca. Let. It. Go.
What about the second reason I hear you ask?
Well that’s to help you, you’re either reading this because you also have a loved one who’s Type 1 Diabetic or you’re reading this to learn more about it. Yes! Even you there who thought you were reading this to be nosey; you are in fact blessed with a naturally inquisitive mind. Prepare to learn something you may find handy in the future, or at the very least have a little more admiration for those living with Type 1 Diabetes.
I’m going to try not to write this with too much focus on the fact that my Type 1 Diabetic is also a teenager … the two DO NOT MIX, in fact I’ll add a mini epilogue to skim the surface of what that’s like, but to be fair it needs a whole post to itself.
Okay Rebecca, it’s been a difficult shitty day today, now’s as good a time as ever to purge – here we go and in no particular order;
The words ‘have you tested’ become the opener for almost every sentence
I hate hearing myself say this, it’s the first thing Bethany will often hear coming from my lips in the morning, at the dinner table, if she looks a fraction of a shade paler in complexion. She hates me for it, I hate me for it. The same principle applies for when Beth (on the very rare occasion) goes into town or to the park. The words ‘have a lovely time’ and ‘be back [insert respectable time], call me if there’s a problem’ those are the words I would love to say, just those. Instead I hear ‘have you got your kit, did you pack dextrose, have you got enough test strips.’ Beth had her first sleep over last night, even having written this part of the post already, I still manged to slip in the ‘did you test’ question…Beth’s reply says it all really.
Saying ‘give me your finger’ has a whole different meaning
This actually makes me giggle when it happens, purely because I have an image of Bethany in my head, giving me the finger, and believe me there have been times she’s been close. We’re talking about a fourteen year old young person now, not a child so these requests are few and far between these days. Thinking about it, it’s a bit macabre of me to say I giggle now, that’s not entirely true, okay maybe I giggle in my head. The truth of the matter is that if I ask Beth for the finger now it’s because she’s incapacitated and not able to test herself. These will be during severe hypo’s or in contrast a hyper with the added joys of ketones making Bethany groggy and nauseous.
Weather extremes can only mean one thing
It’s a beautiful hot summers day (I wish) the sun is shining and life is good. Ah but wait, insulin works differently in the heat which means that Bethany’s figures can run dangerously low. Why Rebecca, why does this happen?…oh something to do with insulin working better in these circumstances. I’ll add a sciencey bit in a minute….bear with. But hang on one cotton picking moment, didn’t Beth have a severe hypo this time last year as you watched her brother and cousins sledging down the local hill? Yep, that’s right, on beautifully crisp and cold winters days diabetics run the risk of going hypo. I actually inhaled deeply and let out a massive sigh just then. It’s a bit shit isn’t it?
Here’s the hot weather science bit in laymen’s term; higher metabolism, dehydration and disguised symptoms all create the perfect environment for a hypo. The cold weather science actually states that blood sugars tend to run higher in cold weather, this is due to a reduction in speed the blood travels around the body and insulin has to work harder. But not Bethany oh no! Bethany hypo’s all the time in cold weather. The act of shivering may be a contributing factor, I don’t know for sure I only know what we see, and have seen for over ten years. Put that in your pipe and smoke it sciency people, Beth’s an enigma.
A spoonful of sugar or in this case a handbag of sweets is compulsory
This refers back to the ‘have you got your dextrose’ statement from earlier. I made the mistake of going to Hunstanton beach with the family and taking a different bag, this one didn’t have dextrose in the side pocket. Beth spent an hour beach combing; she’s in her element on the beach. She failed to notice her blood sugars going down and when I caught her up she was deathly pale, dark circles under eyes and mumbling incoherently. We were ages from town and the caravan site and I had no change on me even if there had been a nearby food stand on the seafront. A lovely passer-by offered us a KitKat, which we sadly had to decline on the account that Beth is a Coeliac too. I stayed with her whilst my husband ran to the nearest café and brought back sachets of sugar. It was scary, it was avoidable, I was mortified.
Mathematics before mealtimes
I hate maths, the side of my brain required to do sciency and maths stuff defies me and laughs every time I try to use it. That said, it has allowed me to carb count, so basically I can add things and divide things according to portion size and carbs per 100g. I genuinely have a cheesy grin on my face now, little pat on the back Rebecca, clever girl!
Oh good God, do we have mood swings. I said I wouldn’t dwell on the teenage diabetic phase but the symptomatic mood swings account for 10 years worth of vile behaviour and embarrassing moments in public. However, take your typical grumpy uncooperative teenager and add symptoms from a hypo or hyper episode and you get a daughter who looks as if she’s capable of manslaughter. I’m joking of course and making light of a horrible side effect of Beth’s diabetes, it’s possibly one of the biggest issues we deal with on a daily basis at the moment. Beth’s blood sugars are in a hell of a mess given her poor management and refusal to let me help her. I’ve been told by other diabetics it’s like living in a perpetual hangover state in some respects, obviously Bethany can’t relate to this yet. Other than taking the diabetes away from her, this is the main aspect of diabetes I’d love to free her from.
Unexpected lie-ins terrify me
Bethany has always been an early riser but there are more and more days recently where she doesn’t get up when I expect her to. I’m becoming less sensitive to these times now to be fair (she is a teen) but a year ago if Bethany didn’t get up in the morning I’d have that heart stopping moment; is she dead? Since 3 and a half years old I’ve had too many of these moments to count. As Bethany’s diabetes management is almost non-existent at the moment I cannot afford to get complacent and assume it’s just normal teenage fatigue and reluctance to get up. For those not in the know, why could she die? Well various reasons really but a severe hypoglycaemic event could lead to other complications causing death or a severe hyperglycaemic episode could lead to ketoacidosis and a diabetic coma…however death would rarely occur in the space of a night in the latter scenario.
Always expect a phone call
Tuesday this week is the perfect example of this point. Three phone calls in the space of 30 minutes; the first from school reception to say Beth’s in the medical room with a blood sugar of HIGH. With the Omnipod this means her blood sugars are over 27.9mmol. The second to say Beth’s removed her pod to replace it…but doesn’t have a spare. The third to say ‘oh and by the way, she also doesn’t have any insulin left! GREAT! I was in town with a friend at the time. Sufficed to say it was a stressful morning. Last week in five days, I had calls on four of them. Twice I had to collect Beth from school due to poor diabetes management. The only time I don’t expect a call and can relax is when she’s home…that goes for both children actually given Lewis and his autism. I’m one hell of a tired, hypervigilant mum.
This is being woken in the night to hear Beth stomping downstairs in true Bethany style to raid the cupboards following a hypo. Thankfully she has a knack of recognising most of her night-time hypo’s and will wake going on the hunt for carbohydrates…ALL the carbohydrates in fact, her appetite at this time is insatiable.
Finally packing everything, twice, plus snacks. Family members now know to have snacks on hand at their homes and I keep them stocked with spare Pods too. I always remember to carry spare Pods and dextrose (I just don’t always have the correct bag on me – sigh) and Bethany, well, Bethany sometimes remembers, but more often than not doesn’t. The more eagle-eyed of you will detect a dent in our armour, a spanner in the works, a teenage diabetic. I can only be as prepared as I can be, the rest is up to Beth and she is a Type 1 Diabetic, who doesn’t want diabetes anymore…
Final thought on the reluctant Type 1 Diabetic; enter the teenage years
I distinctly remember a well-meaning friend once telling me that at least Bethany won’t struggle in her teens because she’ll know no different. Beth was diagnosed at the age of three and a half, and I know of young people diagnosed in their early teens and its earth shattering to deal with. My instincts told me that I’d need to be prepared and Beth’s Diabetic Nurse agreed, expect rebellion. Not your average teenage ‘testing boundaries’ rebellion. Oh no, this is ‘I’ve decided I’m no longer Type 1 Diabetic rebellion. Erm Huston, we have a problem.
That’s where we are now, a teenager who’s had to grow up quickly and stands out from her peers. Who has cut the umbilical cord, won’t allow me to manage her diabetes and refuses to manage it herself. I’ve realised that there is a defining moment in each of life’s milestones; the day as a toddler you realise you’re not physically attached to your mum, the day you understand that you’re mortal, your first crush, the day you realise that you’re Type 1 Diabetic…and it’s not going to go away.
The realisation has hit with the force of a train. Bethany and like many others she has decided the best course of action is to ignore the diabetes and bury her head in the sand. Bethany is no longer Diabetic, God I wish I could shout those words out loud and it be true.
I’ll write another post on this in more detail, and if you have any specific questions or topics you’d like me to cover then please do not hesitate to drop me a comment below. I’m no expert but a problem shared and all that.
I’ve linked 10 reasons I know my daughter’s Type 1 Diabetic with these other awesome bloggers pages, go check them out
disclaimer: with all of my ‘behind the scenes’ posts the same guidelines apply, I am not a trained medical professional, I’m a mum, a bloody tired mum but a damn good one too. All the ideas, thought and opinions in these Types of post relating to Type 1 Diabetes and Autism are my own unless I have referenced a professional or piece of evidence to make a point.
If you’ve only just happened across my blog Glutarama, then you may also be interested to know this is not the main topic I write about, the majority of my posts relate to free from recipes and reviews, as our family are affected by Coeliac Disease, egg, dairy other intolerances it keeps me busy in the kitchen, but boy do I have fun experimenting for my family and followers.