You are currently browsing the tag archive for the ‘sibling of type 1 child’ tag.

Worry

Guilt

Envy

Anger

Fear

***

In a funny way, I’ve become quite adept at side-stepping these big abstractions. I used to worry in a kind of hectic, random way. About everything. Now — well now that there’s so much to worry about, I tend to let most things go.

I used to feel guilty about every moment that was my own. Every moment I wasn’t living and breathing diabetes. I used to feel guilty for not having diabetes. Well, life is too short.

I used to feel the sour pull of pure envy when I saw families — young lads, parents, children, out eating what they wanted, talking about the traveling they will do, the nights they spent sleeping on friends’ floors, sleeping in their clothes, a night on the town etc — and thought that will never be us, can never be us anymore. Now I turn away from it. You deal with what you’ve been dealt.

And anger of course is never far from the door. I can feel it prowling. Often. Walking back and forth out there. But my energy is better spent elsewhere. It has burned everything there was to burn.

As for fear. The hardest for me. Primal. At its worst, I don’t want to go out. Don’t want my family to go out. Wake sick, afraid that this arbitrary bad luck will strike us — in so many ways, again and again.

I’m wondering if the fear is always closest to the surface. Last week M woke in the night, desperately thirsty, going back and forth to the bathroom, cupping water in her hands to drink. In the morning, she confessed that she then could not sleep for fear of the big D. Later, E bled her slim finger and tested her. The relief in the room was tangible when the number came up: 5.1 mmols. You’re fine, he said. He said, and smiled. You can’t be anything but fine. And gently laid her hand back on the table.

Advertisements

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!

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.

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!

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.

1) even though you don’t know why something has happened, you know how to make it better — and it gets better. We don’t know why E’s numbers have been so low the last few days. But we have settled things by going for a long term 85% temp basal (lowering across the board), even lowering meal ratios by 15% (eg the amount of insulin to number of grams of carb: this changes in every person, from meal to meal, but usually remains the same for long-ish stretches day to day). And he has stabilised. 

2) the sun is shining.

3) you find your daughter a great pair of shoes that fit for once, and are all European, on sale, and gorgeous and she loves them.

4) you go shopping with your daughter, and she winds scarves all around you a la Gok’s Fashion and discusses things like textured finishes. And she’s only nine years old.

5) you’ve written one poem anyway that begins to starts to seems to get close to some things you might want to say. 

***

Suffice it to say that two nights ago we had a REALLY grim run. E dragged the bottom for hour after hour, with two hypos which made the horrible adrenalin/fear come.

It’s hard to explain this without getting emotional. But it’s pretty awful — really awful — to see one of the three people you love most in the world, and one of the two people you actually brought into the world — in such confused fear. So frightened, and feeling so alone. Because we don’t have hypos, and have never had one. We can’t know what it’s like to be muddled, to be angry and afraid in that way, and feeling not safe. It’s the brain that does this, when starved of glucose. It begins to race adrenalin into the system, which produces panic and fear…

We reduced the insulin big-time, kept giving carb without insulin, and he came up. Eventually. By morning.

And yes, if it weren’t for my children, I would give up my life for him not to have to deal with this. Not to go through this. The everyday relentlessness of it — and oh, as if that weren’t enough, the added one-off panics, the moments of tipping over into frightening lows or sick-making highs.

So yesterday was not a good day. He stayed home from school, completely exhausted. I wrote a poem and tried to answer emails.

We put him on 85%, where he remains.

He made it through his performance last night — which we all attended and enjoyed — and also sang today in a chamber choir competition. He and his sister played and talked for two hours this afternoon. This has happened before: after a crisis, they intuitively want to re-connect.

And yes, his sister. Her day at school yesterday was also pretty dreadful. She cried in Maths and cried during English. She was worried about him. And angry that he was home for the second day this week. That maybe we were taking more care of him than her. And recovering from a cold, trying to understand it all and deal with all this conflict inside her… 

She had a long, honest talk with her father, and her teachers looked out for her.

*** 

She’s okay today. Miraculously, after the unremitting rock bottom two nights ago, somehow we are all okay. Again I say: it’s incredible what you can get used to, how many blows you can take and then get up and enjoy the sunshine.

I started this meaning to sound better….and I hope I do. I feel it. A bit sad, a bit flat. But this is not unusual. I know it will wear off a bit.

And we went shopping. And, I’ll say again, the sun really did shine.

As I’ve mentioned, one of the most remarkable side-effects of all this diabetes-debacle (DD for short!), is the straight-to-the-heart experience and belief in the value of connections. Having diabetes and being a carer of someone with diabetes can be tremendously, tremendously isolating. It’s invisible. At a glance everything seems okay. But underneath, behind the scenes, there is necessarily constant, stressful, vigilance.

Being connected with people who DO understand is as important as setting out your stall and saying hey this is what it’s like to people who DON’T understand (yet!).

So. As a start, my blogroll in the sidebar is now beginning to reflect the incredible range and commitment and energy of some d-bloggers. Check these folks out.

I’m picking up a few more through Twitter…A surprisingly interesting venture, actually. Aside from the haiku-like nature of the entries, which I find inherently pleasing (surprise, surprise), connections have been made very quickly, and I now have people contacting me from all over the world with diabetes-led tweets and blogs… One entry re-tweeted (ah, the lingo!) to me yesterday, about the idea of ‘normal’ in a diabetes context, is just a FAB post.

***
Update on other fronts: E has had a run of great numbers, and we’ve had three nights of sleep! Yay. Just in the nick of time. OH is down with a draggy cold thing, M is home from school with same, and I can feel my throat tickling…

The peculiar thing is two days of an odd number, very high, at 4pm. What’s going on?! This time of day is an almost guarantee HYPO time for E, if we don’t get it just right. He has ALWAYS been this way. So three days ago he was 14.7mmols (big time YELLOW number, ‘hyper’), and two days ago 16mmols (double ergh). Checked that he had remembered to bolus (the insulin with the food) for lunch, and that his/our carb counting was okay. Yes to both. So we adjusted both basal (drip feed insulin) and the lunch ratio (the proportion of insulin to grams of carb). It’s worth saying here that all insulin levels, whether basal or bolus (ratio-based), differs person to person, time of day to time of day, depending on the body and its metabolism etc. Amounts of insulin also change according to things like temperature and time of life/hormones…. Anyway, E’s ratio at lunch is usually 1 unit of insulin for every 9 grams of carb (1:9). We lowered it to 1:8, so that he would get more insulin for his food intake.

So it follows in the upside-down world of diabetes that yesterday at that time he’s plummeted to 4.1 (RED number) and feeling rough with being low. Sigh. The irony of it! We will keep things as they are for today, and if he’s low again, slowly pull back and reduce the insulin once again… It’s a sensitive time of day for him, clearly…

***
Also, for those of you with a fondness for rodents like my daughter, Mimi and Peaches are STILL at the vet’s. This morning however we have good news: Mimi is now very perky, running around, and we hope to have them home by the weekend.

Daughter M is withholding excitement and hope thus far though…This is something which has developed from E’s diagnosis, and is, I’m sure, inevitable in life.

And that is: the knowledge that life as you know it can turn on a dime. That in truth, anything can happen. She knows this deep down in a way that I wish she didn’t. E’s diagnosis completely unravelled her — this is a girl who has always dreaded leaving last year’s teacher, who still, at nine years old, visits her nursery school. Her loves and loyalties are deep and fierce and admirable, and her security comes from physical connection. When her brother’s life changed, her world view did too. She experienced — with an articulacy far beyond her years — and felt — every day, for months — a grief for what she thought the shape of her life was and always would be, and now wasn’t. It’s painful for me to think about. But that’s what happens.

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

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 28 other followers

Distance Travelled

Disclaimer

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