Type 1 Diabetes – Dispelling The Myths

It’s been 2 years since Raviv’s diabetes diagnosis. Usually I’m too tired to spend an evening writing a blog. Managing diabetes is challenging even for people who do have some form of support. But a recent email from a very insensitive family member made me realise that perhaps there is a reason for the lack of understanding we have received. The majority of my family have not shown much concern in how Raviv is getting along, or how we are managing it. I can only think that perhaps people really don’t know how serious it is. It’s not such a visual illness, he looks like a normal healthy 6 year old. So here is a small summary of what life can be like for a diabetic, or in our case, for us too, since he is too young to manage it alone.

The insensitive comments I received were “thankfully it’s not life disabling” and of course the classic ” it’s not that bad “…. and …”think of all the other terrible illnesses he could have had… he could have downs syndrome”.

The first is simply not true. T1 diabetes is life disabling. In fact it’s worse, it’s actually life threatening, although modern technology has reduced this risk. However, unless managed superbly from the beginning, it can lead to a lot of unpleasant complications.

As for the second…. well lets just say it’s not a comment anyone who has a child with any sort of disability ever wants to hear. Comparing one persons troubles to another is the best way to minimise their issues, and grossly unsupportive. Incidentally I met  friend a while back on a shabbaton who told me she had a downs child. “Oh really, where is he ?” I enquired looking around. “Oh we left him at home with the bigger kids. They are very easy to look after” she informed me. “I don’t envy you though…” she said.

In fact I have found the most amount of support in unexpected places. One lady I met on the beach in Eilat with her 7 year old was the most interesting. My first thought when I saw her son – he kicked down my kids sandcastles and they were about to react when they looked at him then me and clocked that something wasn’t right. He had some physical disability and something not quite right with his speech. The mother came to sit with me and I said to her “gosh that looks like hard work” she told me it does get tiring having to explain to people. Not everyone cottons on. But then she noticed Raviv’s diabetes – its more visible on the beach – and commented – ” I wouldn’t want to be in your position.  My friend’s kid has that. At least I get to sleep at night. Yours is 24/7.”

And that, my friends, about sums it up. It is a constant responsibility for us.  For him, it’s just plain Annoying. In fact before he could fully articulate his feelings on the matter (he was just 4 when he was diagnosed) I often asked an old friend of mine with T1 just – what’s it like? And the overwhelming impression I got from her was – it’s just a very, very annoying illness. You never get a break. Ever.

Technology has helped us a lot and we are grateful for that. But we are still 24/7 caregivers for our 6 year old diabetic, alongside another 4 small children. This means we often have to multi-task in ways which perhaps only families with multiple births and /or chronic illnesses understand.  I recently watched a lecture from Dr Gabor Mate (expert in mind – body relationship) who said that mothers who are caregivers have a constant stress on their bodies which often causes them to become ill themselves. In fact on examining the DNA of these mothers (specifically the telomeres – if you are interested ), they found that the DNA looks 10 years older than it should be.  (This may explain the recent grey hairs appearing round my ears…)

So there is a real need for caregivers to take care of themselves. The trouble is, if you don’t have much time, this is not so easy. Even now, I write this at the expense of my sleep. So I have been exploring small and inexpensive ways of managing the stress impact. A meditation app, for example.

What causes the stress? And how does the illness affect Raviv?

A number of things. First of all, virtually every time he eats something, he has to receive medication. Unless its an animal, an animal by-product, a green vegetable, an almond or perhaps some coconut shavings…. he needs insulin. When was the last time your kid snacked on any of the above? Exactly. He likes healthy food but it makes little difference in diabetic terms. A calculation has to be done each time. His machine is quite intelligent but it does have bad days and of course he is unpredictable, as he is… well a human being. There are a myriad of factos that can affect his glucose levels. So lets say one night he doesn’t finish his rice and I don’t notice (being preoccupied with other kids) or perhaps I give him insulin for a fruit dessert and his piece is a bit bad so he leaves it…. his machine can start beeping all night, whereupon we pop in with a bit of honey on a spoon (easiest way to fix it without waking him).

In the old days, giving him too much insulin could cause seriously dangerous hypoglycemia and parents (including us before he got a sensor) went to bed at night praying that their kid would wake up in the morning. Happily, he beeps if he is low blood glucose. Unhappily, this means we get woken up.  My husband usually does the pre-3am shift. I wake before sunrise most days so I do the post 3am shift unless the baby is feeding at the time.

Conversely if I don’t give him enough insulin at dinner – for example he eats more without telling me, or I forget to allow for sauces on his food , his sugar goes high and we have to go in and fix it.  A few days ago, my husband worked until  late, and things were  a bit busy so I was distracted, got the calculation wrong, and didn’t give him enough insulin. I had to get up at 3 to correct it – whereupon his machine told me how much to give him, but it was too much even tho I reduced it, so I had to go in at 5am with the honey.

I am used to waking up for babies but this causes more wakefulness as I have to walk around and do calculations (not my strong point). So I have developed a mild sleep disorder where most days I wake up at around 4am.  Regardless of when I go to sleep. As for Raviv, I have noticed he needs more sleep than my other bigger boys did at his age, so I suspect it does affect him. And that too can make him cranky, and just … not himself. I frequently remind his brothers to be sympathetic. Most 6 year old’s do not get woken at night.

Aside from this, he has to have his pump changed every 3 days (its a needle, and yes, it does hurt, so we try to do it when he’s sleeping ) and his sensor changed every 6 days (also a bit ouchy), and time consuming.

Because he is young and growing at a fast pace, he has long, boring, appointments at the clinic every 2 months or so, mostly to adjust the parameters of his insulin/gram ratio (in plain English, as he grows, he needs more of the stuff), but also to monitor social care and nutrition.  I have to take the little ones along as I have nowhere to leave them for 5 hours and Sienna still breastfeeds. This takes a whole morning out of our lives and afterwards I rush back to make lunch in time for my older boys. I always feel worn out after those appointments, and I’m starting to realise its a psychological thing, rather than physical exhaustion.

He has to calibrate his machine at least twice a day – this means breaking off from his play to do a blood test, which he is now able to do himself.  But if we go out and he’s forgotten his kit then its really really annoying. And if his sugar goes low from the wrong dose or chronic exercise then he feels really shitty. And tired. Like at the end of a fast day, I imagine. And if his sugar goes high then he gets really irritable and frustrated, which manifests itself somewhat as PMT but in a 6 year old boy.

Aside from this, he has to be mindful when doing sport of blood glucose lows. So any sporting activity – cycling, gym etc I have to remember to reset his basal insulin before according to how much energy I think he will use, and he always takes dates or raisins along in case of a sugar low.  I always send a big brother or try to enlist a helper for these things. Water activities make me anxious because he can’t wear his sensor. So beach, pool, water parks…. we have to keep a  very close eye.  At a recent trip to Luna Gal, we sent the big boys off to the slides with him but I was nervous and instructed my number 2 son Yaron not to let him out of his sight. For instance what if his sugar went low from all the running around whilst he is queuing for a big water ride, just as he gets to the front – will he say “scuse me I have to go get a raisin”? Unlikely. He could get on the ride and collapse at the other end in a hypo… or drown… or something else awful. Thankfully Raviv is pretty responsible, and he does seem to have an awareness of being low blood glucose. My older sons are also very responsible, and they often pop over to his playdates to give him insulin if I am tired or busy cooking dinner or something.

Aside from this I have to remember to collect his medications monthly and sometimes there are issues with stock or faulty equipment (very dangerous). And I have to be in constant contact with his care assistant. When he starts school, in about 1 week, when I pack his lunches, if he has anything out of the ordinary, that does not come in a packet, e.g. a home made granola bar or slab of banana bread, I will have to write the carb numbers on it for her. All before 7.30am, and alongside everything else. From his perspective, he will have to remember his blood test kit and emergency snacks every day. And if he does after school sports, then it will be the responsibility of his brothers, unless I can find the time to accompany him, which is unlikely.

In addition, every time we get it wrong, there is the constant guilt of the complications in later life, which range from heart issues, kidneys, eyes…. etc. To be honest I can’t quite bring myself to read the full list.

If you’ve read this far,  I commend you. This was a long and tedious post.

Unfortunately, that’s the reality.