November is Diabetes Awareness Month. This is so important to people in our community, the Type 1 Diabetes Community, because there is so much we want people to know about the fastest growing chronic condition in Australia.
My eldest son, Will, was diagnosed with this condition in February last year when he was 8 years old (read about that here). We were already familiar with T1D as my Mum was diagnosed shortly after my birth after becoming very unwell and losing significant weight. My nearly 11 pound birth weight could have been a clue, but she struggled through those early weeks with a newborn unaware that she was living with a life threatening condition.
Being a carer for a child with diabetes is nothing like living with a parent who has diabetes. My Mum kept her condition from us. It was a part of our life, but I have very few memories of it being a huge issue. I remember being told to call my Grandparents if my mum didn’t wake up in the morning, and I knew what she looked like when she had a hypo (low blood sugar) so I was able to help her if she needed it. She rarely needed that help.
According to Diabetes Australia, “For every person diagnosed with diabetes there is usually a family member or carer who also ‘lives with diabetes’ every day in a support role. This means that an estimated 2.4 million Australians are affected by diabetes every day.”
That’s me, I’m that carer for my son. I insert his pump sites every three days, test his sugar in the middle of the night, insert a new CGM sensor once a week, troubleshoot problems, calculate carbohydrates every time he eats, wake him and force him to eat when he’s low, and correct his levels 24/7 when they’re high, and sometimes think like a doctor in situations I’m not trained for but have to do to keep him alive. My husband does a lot of the testing in the night, too.
When we started on this journey I struggled, but we tackled it as best we could and we assumed we could just carry on as we liked, just with some minor extras to deal with. We thought that managing his sugar levels would be simple, and as long as we followed the directions Will’s health team gave us, things should flow smoothly.
But human bodies are funny things. They don’t react to a synthetic hormone, insulin, the way our bodies do when they get insulin from a fully functioning pancreas. Hormones, moods, weather, sport, physical activity, getting sick and random mysteries can play havoc with his levels. Just when we think we have this thing under control, something happens and it throws everything out of our control. It’s unpredictable, and that is dangerous. Too high (hyperglycaemia) is very dangerous and can be fatal, hypoglycaemia is too low and that is just as dangerous.
I’ve tried sharing snippets of our life with T1D on social media with the intention of giving people some deeper understanding of this chronic illness, but it is really hard to get across what this life is like, and I worry that sometimes I just come off looking like a big whinger. What can appear as a one off as a Facebook Post is often representative of what our life is like on repeat. When I’m exhausted I get frustrated that people don’t understand what our life is like but I get it, there’s no way people could possibly know what this is like.
So to compose this post from my perspective with all the things I wish people could become aware of this month is absolutely impossible, but here’s the main things:
- Absolutely #1 is awareness of symptoms. Too many children and adults have died from T1D because they were misdiagnosed with a cold, strep throat or a virus. If your child is sick and not getting better, please demand for a quick finger prick test to rule out T1D. I personally know of children who have had severe complications because they weren’t diagnosed soon enough. Don’t think you have to tick all of the boxes before you should get tested, Will’s only symptom was bedwetting.
- Type 1 diabetes is different to other forms of diabetes. Will’s pancreas is no longer functioning and cannot produce insulin which is why he requires insulin in the form of a needle or his pump. Type 2 and Gestational diabetes are insulin resistant.
- No two diabetics are the same. What works for one doesn’t work for another all the time. Sometimes you can do everything right but things still go crazy. Please don’t assume that a child, or adult, with erratic levels isn’t doing everything they can to control their levels.
- Sorry to be a bummer, but diabetes can be fatal. Glucose levels that are too high or low are dangerous. If you know someone who is diabetic, take five minutes out of your day to research the symptoms in case you ever need to help them.
- Will hates to feel different, and sadly he is often made to feel different. Treat diabetic children like all other children, but be aware that they do need extra help at times.
- ASK QUESTIONS– this probably should have been higher up the list. This disease is complicated and confusing. Often we are faced with comments from people who have no idea of what they are talking about, but we love it when people take an interest and want to learn about Will’s life and to be understanding of his challenges and supportive of his T1D.
- Be Understanding if I unintentionally bite your head off– carers of children with T1D often miss sleep, they have to be with their child more often than other children their age to keep them safe, and they have to do the job of a nurse with very little training. It is literally like having a newborn again, I have to get up in the night to check his levels and if they’re unstable I often don’t sleep. I am his pancreas! This year has been really hard for me, and I’ve struggled with trying to make this a part of our life because diabetes is not content just to sit in the wings, it has found it’s way into every crevice of our life. It consumes me. We have to make considerations all the time for his condition- our choice of holiday destination, ensuring we have enough supplies, never going into a lift without food, and losing a lot of spontaneity from our lives just to name a few. This has had a tremendous impact on my entire family, and it has most recently had a big impact on my work life. I’m lucky to have incredible support frompeople who check in on me with messages, calls or meals. Even just to have people who understand why I cancel plans, or don’t turn up on time is a blessing. Diabetes has made me a rubbish friend, but it has shown me how amazing some of my friends are.
- Do tell children with T1D how brave they are. I see Will’s face light up when people take an interest and genuinely tell him that he’s amazing, because he is. He has to deal with so much worry, pain and tremendous inconvenience. Don’t tell them they’re lucky not to have cancer (we hear that A LOT!), or that you glad it’s not you because you couldn’t bear to use needles. Diabetics hate needles too! They just don’t have a choice.
The number one biggest challenge we have faced is a lack of support. I have searched for someone to provide counselling, or family support, but we’ve had no luck with anyone who specialises in this area. Our health team is great, but often we find that we can’t get answers to our questions, and carers of diabetics often become absolute experts on the topic just to get some answers. Sometimes the experts have no idea what it’s like to live with this horrid chronic illness. I give 100%, but often that just isn’t enough, and sometimes the experts want to tell me about all the complications, all the problems we could face but all of the responsibility sits on the shoulders of the person with the least qualifications.
There is a real “just get on with it” attitude towards diabetes, and I really wish that was possible.
I live in hope.