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Hello everyone. And hello again. So many hellos indeed that it’s hard to know how I will start this post… Apologies? Reassurances? Thank you firstly to those who sent messages via email or facebook about whether we were okay.

Yes, we are really fine. Truly fine. I just had to let things slide in the middle of what was the busiest teaching and admin term for me in several years. It became a case of only the absolutely essential bits of life survive! And the blog just went — poof! — like dust. Before I knew it so much time had passed. It is only with the New Year now upon us that I can sit back a little and think now I can get back to this. Thank goodness.

Because I’ve missed it. Lots.

***

Catching up info: E is now at least three inches taller than me! Yes, choke in surprise. It has happened so fast that I keep thinking he’s either wearing heels (not likely!) or standing on his toes (also not likely since he gave up dance about a billion years ago). He is now creeping toward his father’s height of 6 foot, which his father categorically refuses to acknowledge. M too has shot up: fits my shoes and also wears the smallest women’s size 6 (uk, that is. American it’s 2 I think?).

What the heck?

But it’s the sheer food consumption that is doing our heads in. Forget monitoring carb intake. Just forget it. The best we can do is try to get him not to eat too late in the night, so that we don’t have to get up and test. He’ll sit down and have 400 g of mashed potato, eight small sausages, and a pile of vegetables. Faster than any of us can finish our meals, he’s done and standing up for ‘more food’. He returns to the table with a cereal bar, a pot of yoghurt, more sausages… Our food bill has gone up by 50% in the last six months. SO alarming. He eats all the time. We go through boxes of cereal bars, probably one per day. He also doesn’t seem to want non-carb, like meat and cheese. He really, really wants carb, big time. His body must just be building itself, putting together the infrastructure, like constructing a building… It’s incredible to watch.

I realise I’m not telling you anything many of you won’t know. But I am really reveling in it: his growth means his diabetes is controlled. Which is a source of intense relief.

And controlled it is. The last HbA1c was again very good. This is not to say that we don’t have days of weird swings and runs of highs and lows — but we are blessed with a young man who is admirably keen to stay in some control. He never does not act on the information his testing kit gives him, and he never (unless out with friends in town) doesn’t test. This is hugely to his credit, and how very lucky we feel in this.

Case in point: yesterday he was inexplicably 16mmols before lunch. It scarcely matters how that happened, and although it was less than two hours since he’d eaten his snack, he still felt the number was too high. So he overrode the pump and gave himself a partial correction. By PE two hours later he was down to 6mmols — he didn’t eat to bolster up for exercise because he was worried about having been high (is this a run of highs? for instance), but within an hour he’d hypo-ed and had to stop. He treated, and by the time he was home he was a nice even 7mmols.

I told his father the story. He’s a good lad, he said. Indeed. Much better to have tried to get things lower than leave a high and allow himself to get insulin resistant. We know by now that if we don’t act quite harshly, he can stay high for hours sometimes, depending on why it’s happened. In this case, it was inexplicable. He rightly thought the mostly likely reason was not because of a previous bolus, but because of feeling slightly ill, or from a cortisol high. It was unusually high even for the middle of a bolus.

As it turns out he probably didn’t need to do this, as evidenced by his quick fall in blood sugar. But better to do what he did. 

***

Enough extolling! Suffice it to say that we press on. Funny night highs continue, and we just tweak the pump when we think the high might have set in…whereupon it goes away and of course he’s too low. Sigh. We’ve had a good enough few weeks at the moment such that we are hardly ever getting up to test. Thank goodness, because we have been on the floor with exhaustion, both of us. E understands this, and is careful not to eat late if he can help it. We also almost always aim to have any pasta or rice earlier in the evening — before 7.30 pm — so that we can test him right at the end of the dual wave, at 12.30am. I confess that staying up even that late is fairly dire. And once last week OH spilled hot tea over himself in bed after falling asleep waiting for the right time to test… But it’s better than a 3am alarm, for sure.

***

While I’ve been away, some folks have carried on an intermittent reflection over on A Place to Talk. And one question that’s come up from Angela is what people think ‘triggered’ or ’caused’ their own or their children’s diabetes?

Medicine knows quite a lot about genetic predisposition and about viral triggering… I can trace I think E’s trigger through to a stomach bug he had in Italy in 2008. Everyone else had it too, though we only had cramps. He had cramps AND a fever, was really quite poorly. Three months later he was diagnosed.

What are others’ theories, and experiences? As Angela points out, it can feel so random, especially, as in her case and many others’, there is more than one child in a family affected?

And of course it can feel unfair. Does feel unfair. Is unfair. And arbitrary. And stupid, stupid, bad luck.

So there.

Any thoughts welcome.

For now: great to be back.


I guess you could say that if it weren’t for this group of folks, I wouldn’t have come back to blogging (okay okay, well I’m glad I did, even if no one else is!). And they are the good people on the Diabetes Support Forum. Also please note the link in my sidebar, pride of place in blog links…

I discovered this forum by surfing Diabetes UK, looking for something, anything to connect with in the early days. It started up in October or November 08 (someone will correct me, I’m sure!), and I joined in February 09 I think (again, one of the moderators will know this if you’re reading!).

And what a connection. The support, advice, information, good humour and sympathy found on this forum is unlike anything I’ve ever experienced, and has saved my bacon more than once. I am a pretty committed non-club person. I really don’t like ‘belonging’. I resist group behaviour in most circumstances.

However. The forum has and continues to be a place to go — really, if truth be told, the only place to go — where everyone gets it. And there are times when you need that more than anything else in the world. You just need someone to get it.

***

E ended up in hospital for a night in September. Pump malfunction, but we didn’t know that at the time and couldn’t get to the bottom of it. We tried everything. We had discovered him sky-high 3 hours after eating. Despite trying to correct these high levels with more insulin, within 40 minutes he was violently throwing up, and had high ketones. And begging, begging for it to stop, for us to help him. It was, I don’t mind saying, completely and utterly gut-wrenching.

There was a chance he had quickly gone into DKA (ketoacidosis, a life-threatening state of high blood sugars), so OH whipped him off to hospital. I stayed behind, because M was sleeping.

It was the middle of the night. The hospital is 30 minutes away. I was beside myself.

I got on the forum, seeing if anyone was awake. And lo, two young ladies, both with Type 1 diabetes, were. Their concern and knowledge was truly like a light in the night. I heard back from OH that E wasn’t in DKA, and immediately let the forum know. Their relief and joy were palpable, seeming to flood back through the computer straight into me. We talked for a while longer, until E was stable.

I will never, ever forget their solidarity through those couple of hours. The whole time, I fought back the feeling of complete desolation and despair I felt the second night E was in hospital at diagnosis…Which was without doubt the worst night of my life.

Only this time, it was different. I wasn’t alone.

**

Telling my daughter the next morning that E was in hospital nearly did me in. By this point we knew he was fine, and coming home… But she began to get ready for school, tears pouring down her face, refusing to talk about it. Dreadful. I made her stay home. I convinced her that she needed to see he was okay. And he was. When he walked in the door, she threw herself at him and squeezed him so he could hardly breathe. Everyone was a bit teary. Of course.

***

It’s incredible how much strength and hope strangers can give you — actually now of course I’d call the forum full of friends… but it’s the way sometimes that a stranger will enter your space, will give of themselves…in perhaps the way that family, for some reason, or even your closest friends, sometimes will not or cannot.

If there’s one gift from this whole life-inside-out turn of events, it’s the sure knowledge and belief in…well I’ll go ahead and say it: humanity.

As anyone who moved over from my other blog will know, I am prone to weeping both on the way to the gym (hearing Obama’s acceptance speech, for instance) and while actually in the gym (endorphins, no doubt).

In general — and I’m sure you’ll understand — I have cried more than I have ever cried in my life these last 15 months, since E’s diagnosis. That’s just the fact of it.

However, I don’t cry as much as I used to, or as uncontrollably, or without warning. Which is altogether easier to manage!

However. Again. I do still often — VERY often — feel tearful in the gym. The harder I work, the more I cry.

I always listen to music there. And I almost always listen to playlists that E has put together and put on my iPod (sorry, now iPhone!). These two are from his original playlist, made for me about two months before his diagnosis. And they are this morning’s gym weeps. I almost had to get off the bike.

Mainly because I love his passion for life. And I won’t let all this get the best of me. Just as he hasn’t right from the beginning.

and

Setting sail

In November 2008 my 12 year old son was diagnosed with type 1 diabetes. The effect of this event on me -- and on our nuclear family -- was like being thrown overboard and watching the ship leave.

'Dealing with type 1' in the family has morphed into another sort of 'dealing' -- a wholesale resituating of parenting, of family dynamics...of life.

At my son's diagnosis I could not to locate a record of what living with a type 1 child in the family is like. I could not see myself or our family anywhere. I longed for a starting point, a resource and a sense of the future. Being a writer, my instinct is to write it. This space, I hope, is a start.

Blood Sugar Ranges (UK)

<4 mmols = low or hypo, life-threatening if untreated
4-8 mmols = within target range
8-13 mmols = high but not usually dangerous
14+ mmols = very high, or hyper, life-threatening if untreated

Bubbles

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Distance Travelled

Disclaimer

I am not a medical professional. Any view expressed here is my opinion, gleaned from experience, anecdote or available research.