The idea of difference

The children have been dealing with ‘school issues’ the last couple of days — one positive, one negative. At M’s school, one boy said terrible things and behaved terribly — for two days — before the school caught up with him. Things about people with diabetes being ‘spastic’ and having no legs. He drew pictures, and taunted M. Needless to say, despite stay off the subject advice from us and from a teacher, by the second day of this, she flipped. It’s all been dealt with… but she feels these things deeply. She wishes more people understood. She wishes she didn’t always have to be in the position of explaining what diabetes is, the distinction between type 1 and type 2, how hard it is to manage, and how she worries about her brother…

It’s a bit much for a ten year old really.

By contrast, yesterday at school E’s physics teacher completely silenced similar taunting. This is a fairly common occurrence which E seems to weather well: boys tease him quite a bit about being diabetic, make fun of his pancreas, say hey he can’t have juice where’s my juice, etc. The distinction I guess between M and E”s situations are that in E’s case, the boys kind of know what’s going on. At M’s school, they are speaking from complete ignorance, and are therefore near bullying.

Anyway. Yesterday E had a hypo in physics, reached for juice. One boy said hey sir he can’t have that! To which the teacher responded yes he can, he’s diabetic. The same boy then said ha ha let’s all laugh at him because he’s diabetic. And the teacher, totally deadpan, said I don’t think that’s funny at all. My daughter is diabetic. I wouldn’t want her to go through what you’re doing to E, and I wouldn’t want E to go through what she does when she’s low.

Apparently the class just kind of froze; the whole atmosphere changed. The teacher is a favourite of E’s anyway. Turns out his (grown up) daughter was diagnosed just a few weeks ago. E came home feeling that someone understood.

That’s all it takes.

***

M and I talked alot yesterday about how when something like a diagnosis of diabetes happens in your family — it could be anything that marks out one of you as ‘different’ — people automatically read it as ‘not normal’. In fact, you yourself, until you get used to it, read it as ‘not normal’. And the difference weighs so heavily. You feel out of the stream of life, isolated, cast off. Difference of any sort is so very bulky to manage, trying to figure out what to do with it in your life.

Last night M said that ever since E’s diagnosis she’s been working hard to try not to pigeonhole people. She said that she used to be frightened of how different people looked in hospital, or on the street, in a shop. She used to be afraid of difference.

Perhaps we all are at first. But it’s not so difficult to change this. It’s not so difficult to expand our notions of what is ‘normal’. In truth, ‘normal’ can hold everything, every difference.

Our job I guess is to keep forcing people to expand, to open up. To educate. To push for acceptance at the deepest level. To keep people from turning away.

It’s not easy. But it needs doing badly. For all our children and their futures, whatever they may hold.

from 10 to 24 mmols in 3 hours

Yes, it’s been a bit like that: like ha ha let’s play ping-pong…

Sigh. Two nights ago E is 10 mmols at 12am. I do a correction dose, thinking okay not  bad number, little unusual to be that high 4 hours after eating, but hey… Then at 3 am I hear him coming to our room. He’s big now, bulky in the doorway like his father, and for a moment I have no idea who it is! Then he says, I’m 24 mmols and feel absolutely awful.

A sudden spike like this hasn’t happened in a number of months. And of course it would happen when R and I are both hammering through huge piles of work — markings, plans… Hence why I’m up at 12am testing him!

Anyway. Nothing to be done. All hands on deck. Check pump is working as far as we can see — fine. Give whacking huge dose of insulin (what the pump recommends plus a whole extra unit) and put him on 200% temp basal (eg twice the amount of insulin he normally has dripping in per hour).

We wait for the insulin to take proper effect, which we know will be about an hour and a half. Meanwhile E feels sicker and sicker, and then, with awful predictability, begins to throw up. We know he has ketones. He tries to drink water, but can’t keep it down.

An hour later his level has hardly come down, 22 mmols. This too is not unusual — with such a high, the body can become resistant, and it takes more aggression with insulin to lower things than it normally would. To cover all possibilities (in case something invisible is wrong with the infusion set currently in him), we do a set change. E as usual does everything himself, but we can see it takes everything he’s got, as he fights to do it between bouts of retching.

We correct again, again overriding the pump (which remembers what it gave an hour ago), in case some of the last correction dose didn’t actually make it in (in case the set was faulty: see the inexact science of all this! All guess work! And too much insulin of course will send him crashing into hypo, so you just do it and pray…).

It’s pretty dire. My heart breaks for him. He’s so exhausted he dozes off, and so I go back an hour later: 11 mmols, a massive drop.

Phew. It’s over. By this point it’s 5.30 am, and we are due up in an hour. I go back to bed, fearing that with all that insulin sloshing around yet to take full effect, he will be hypo in an hour. But I’m desperate for sleep.

At 6.30 am, he is 8 mmols. Not hypo. Phew again. Made it.

Poor E soldiers on. He gets up, gets himself out for school.

We can only think this is all from his cold. Which drags on and on: cough, chest, nose. I’m watching him closely for infection. He’s not 100%, but surviving.

So yesterday at school he begins to go high again, but manages it himself: overriding the pump for a correction dose, and putting himself on 120% temp basal all day. He wrestles his levels down… And we hear nothing about it until we are all home last night.

It’s hard to overstate the pride I feel in his grit. For getting through the night and pressing on, but also for then making his own decisions, the right ones, yesterday.

It’s also hard to overstate the grief I feel for a future where he will have to make it through nights like that on his own. He will have to do this stuff with no one beside him.

Once again I turn away from this thought. I can’t make it better, ever. I never wanted my children to have to be this strong. Yes — like I had to be. Those who know me will know what that means, and those who don’t will just have to believe me. So if there was one thing I wished for my children, it was not to have to deal with big heavy life too soon.

But life has dealt us this hand. This arbitrary hand. And our children will have to endure. E will have to endure things that most can’t imagine. The potential toll on his mental health, not to speak of his physical health, grieves me. My children will have to be unusually strong unusually young. Like too many, it must be said. Still. Why can we not protect our children?

***

I know that they will make it. Are from stern stuff, whole stuff, sound stuff. And they have us, who have with every fiber tried to give them what they need not to feel too alone too much of the time…

I know all this. But it all seems just something I tell myself to feel better when it hits me in the middle of the night.

 

Life 101 (iv)

Spring is springing so hard it’s practically bouncing off the page! The sun has shone almost without interruption now for two weeks. The tiny showers have made all the grass green and the tulips livid with life.

1) Thank you to everyone who sent me messages (see About on this site, but I’m afraid you can’t hack into my email, 🙂 ) about my article in Balance, the Diabetes UK bi-monthly magazine. I do what I do because it presses upon me to do it. Just hearing from people and knowing that somehow we all have places to go, and that I might, might be laying one tiny bridge of connection down for folks — this is good enough for me. This is what it’s all about. Thank you. My column continues in the next issue.

2) The beach hut is the BEST THING since sliced bread. I’m writing a lot. The sun is shining. At the end of the day it goes grey, and the horizon mixes the sea and sky. I’m researching coastal terminology and just plain watching the water, the birds, the dogs being walked, the children playing, and the slow flow of the tide. The whole thing is astonishing. I haven’t felt this connected to writing life-wise in years. Years. (Yay!)

3) Daughter M celebrated her 10th birthday yesterday. Like me, she has a tendency to tell everyone she knows and thereby reap the rewards of good wishes! She was in possession of the Birthday Cushion from her maths teacher all day, which she could sit upon, carry with her, flash at everyone and generally enjoy. Her name was emboldened upon the big screen by the school library. Her class sang to her. She ate cupcakes. Her brother downloaded a wonderful arty hand-drawn puzzle game for her as a gift. She soaked up ‘the love’. She is ten, double digits for the rest of her life. And a cracking, special girl, much adored. Here’s to you, chiquita!

4) We are off to clinic tomorrow, to sort out Manky’s sites. Lordy. We are feeling brave and resolute. As I say, the sun is shining. We have raised the nighttime insulin to combat the growth hormone highs which have persisted pretty much constantly now for three weeks. Perhaps soon we can get a night’s sleep! The sun is shining.

Til when!

Round up

1) M’s school did speak to the two year groups as promised. M reports it was handled well: an analogy with a key was used apparently, such that the key is the workings of the pancreas. In type 2 the key is a bit broken, not working so well, but a bit. In type 1 there is no key. Somehow this was used to illustrate how the types of diabetes were completely different, and most especially that type 1 is not something you can catch, or something that is the person’s fault, or anything. M did not feel on the spot. And the ‘friends’ who had teased her just the day before said nothing, even though she was sitting next to one. 

It’s interesting, isn’t it, how quiet a bully goes when shown to be wrong?

So all in all, satisfactory outcome! M is infinitely happier now that the ‘truth is out’, and we’re pleased with the school, will write a note saying so.

2) We have yet to try the Bayer Contour USB. Things have been too frantic. We need a bit of head space. And E is, as I’ve said, always slightly resistant to another unfamiliar thing when he’s full swing into his life. And who can blame him? May well be Easter break now….

3) E received a Distinction for his Grade 7 piano exam! Dig it. Barely 14 years old. Absolutely brilliant news.

4) M won a poetry reading competition on the same day. The girl understands it.

5) And I have been given a mini-residency at the Little Blue Hut on Tankerton beach. In which I will sit and write, and walk and think, for three days a week over six weeks, starting 21 April! I am so excited about this I could pop, seriously…It seems so out of reach at the moment to be able to do anything like that — but hey, it will happen. I will finish teaching next week, take a break during which I do my marking, and return to write. To write! To think! To just BE. Incredible. Watch this space.

Dodgy sets

Oh, you know, these things happen….

Only when they happen TWICE IN A ROW — it’s irritating and a little unsettling.

So Sunday is an infusion set change day (when the site for the pump’s connection — how the insulin enters the body — is changed. This is usually done every 2 or 3 days). No problem. But all Monday E is high. We decide to do a set change again, just in case. E does it, and halfway through its first dose of insulin, it sends a ‘no delivery’ message. He’s high and therefore fragile, and a nice chicken dinner is in the oven and he’s starving.

We wrap up the by now served out dinner. M goes upstairs to read (she feels particularly helpless when something goes wrong and she can’t do anything. We tell her all will be okay).

The question is: How much insulin, if any, has gone in?

We decree a faulty set (how? why? no idea), and play safe: we assume half may have gone in. Change the set AGAIN and give roughly half the ‘owed’ insulin. Spend the rest of the evening wrestling with numbers, but it does look like some insulin went in before stopping.

Manage to enjoy dinner.

Last night: set change day again. AND EXACTLY THE SAME THING HAPPENS!

Only this time, he is actually sitting down with food. And I have to be out the door with M in under ten minutes (a school play). 

He and I decide he will use the old set (NB: pump wearers: never take out an old set until you are sure the new one is working!!!) to give the rest of the meal’s insulin and deal with it later. 

Again: How much insulin, if any, has gone in?!

Turns out probably about what the pump said had gone in. Two hours later and he’s a little low, but it had been a cross-country running day and these are always tricky to manage…

At 10.30pm, we remember about the set problem (after the play), and all decide we will try the new set again for breakfast.

We do, and again, IT STOPS MID-WAY THROUGH DELIVERY. 

Damn. Switch to the old set again, give the rest of the insulin, and off to school. Can’t change set because we won’t know if it’s working properly until after he’s at school…

Sigh.

Phone Medtronic, the makers of the pump — who, as usual, are absolutely brilliant. Like us, they come to the conclusion that we are dealing with a faulty batch or box of sets. We switch boxes of course, and wait for them to send us more. Problem is, the box we have is the same batch as the faulty ones, but oh well. It seems an inconsistent fault.

Medtronic are pretty wonderful. Always pleasant. So helpful. 

At least it doesn’t appear to be a pump problem.

***

But it’s a pain. And too many of these sorts of events lead to a feeling of being very unsettled, unsure. At least on MDI (injections) you know the insulin is going in. Not to know what’s going in is pretty darn scary, because you can’t know anything for sure for a couple of hours at least…

So far so good though. No desperate phone calls from school. And we’ll do another set change tonight. Before going out to see the play!

***

Lessons:

1) always keep in an old set til you know the new one is working

2) trust the pump

3) batches can go wrong, but it doesn’t mean the whole world is ending

4) never hesitate to phone Medtronic

5) remain flexible!

Getting it right

1) Never happens. We know this. You know this. We plug on though. After 10 days/2 weeks of strangely low numbers, we finally lowered insulin across the board. As said. And things a little too high. Tweaked. Things still a little too high. Then, yesterday, things just TOO HIGH: 14mmols +. Eek. Went straight onto 120% temp basal, to get more insulin in. By 10.30pm had crashed into a bad feeling hypo (worse of course by virtue of having been a little high for a few days). Another panicky one. Yuck. Removed temp. At 2am was 4.9 mmols. Woke on 4.6 mmols. That’s better. Back to no temp.

Sigh. We’ll see what today brings.

2) Two days ago there was a talk on ‘healthy eating’ at daughter M’s school. During which diabetes was mentioned as a consequence of not eating well.

Oh dear. M then finds herself, not for the first time, defending her brother’s basic health in the face of her peers over the lunch table, who could add to their usual your brother can’t have sweets/ate too many sweets/must be fat, the cry of but teacher said so.

So no one believed her. And she was so cross she was stomping her foot about it when she got home.

So. I went in yesterday and chatted to form teacher. Was, rather incredibly, rung by the school nurse later in the day. Yes she said we will address this. Distinction not made clear and not good for children, not good for M.

Could have knocked me over with a feather, but oh well.

The two year groups who were originally spoken to will be kept back after assembly this morning, and things clarified. Upon arrival at school M was offered the chance to not sit in with them, or to sit in. She chose to sit in.

She is fearful that there will be too much M’s brother, M’s sensitivity etc for her liking and everyone will know it’s about her…

But I tell her, we tell her, that getting some things right are worth it. She feels so strongly about it, so fiercely proud of her brother and so deeply understands that him developing diabetes is just PLAIN BAD LUCK.

She yelled this in the car yesterday: it’s just plain bad luck!

If everyone knows it’s her doing — so what? They will also know that they were wrong. She just needs to be brave. And she’s very capable of that, every bit as brave and strong as the brother she loves so much.