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Keeping a blog sometimes feels a bit like staying in touch with an old, good friend. You think oh I need to say this, or I need to say that. A part of your brain holds ‘blog things’. It usually works quite well.
Until you drop a stitch. And of course it unravels down the whole piece of knitting, putting a kind of empty path through the middle of it. Damn.
So this last week and a bit, I’ve dropped a stitch. At least. And it’s been depressing, to think every day, oh yes I can say this, and I can say that — and never get to it.
Reasons are good ones: writing in the hut; and university work. As well as normal life, but hey.
***
So it’s list time, just to cover bases. This is the worst thing: I can’t just LEAVE IT.
1) new infusions sets are working so well we’re in shock. Insertion is much easier, done in a flash, and since we started with them, we’ve had NO error messages from the pump, MORE stable numbers (generally, see below!), and THEY HURT LESS. So an all around thumbs up!
2) we have however had two completely uncharacteristic missed doses, when we all just kind of forgot to give the insulin — within 24 hours. The first time we caught it quite quickly. E was high, but no ketones and feeling okay. Insulin given, and job done. The second time he’d been running a little high anyway (we think from the end of a cold), and three hours after the missed dose, he was 20 mmols. Ergh. Within a few minutes, he felt bad. A few more minutes, and despite correction insulin being on its way in, he felt positively dreadful. We had to pull over while driving home while he got air. He thought he was going to be sick. And he felt this way for another two hours. For him, there is NOTHING worse than being high with ketones. It took another six hours, running temp basals, for him to come into range. Such is the ridiculously high price of forgetting to do one thing in certain circumstances.
3) We have figured out we think for certain that E actually tends to run slightly LOW when colds are starting and coming out. Unusual I think, but this seems definite now. Then, after the worst is over, he runs high for a couple of days. Oh joy!
4) It’s Sounds New week, which means we have all been rather hither and thither. Esp OH. So I’ve been having to keep about a billion things in my head at once: lunches, drop offs, pick ups, swimming gear, dry cleaners, paperwork. We usually split as much as we can, but this week of the year, it’s always like this — a bit overwhelming! Being a parent and working, being a partner and working — and trying to do a decent, open, sound and not too controlling job of it — is overwhelming sometimes. How’s that for stating the bleeding obvious, as they say?!
5) And yet through all this (and uni work — have I mentioned that?! A bit of a trial to keep up with these weeks, but oh well…), I have been to my hut! Three mornings this week. The work is still coming. There have been big waves. So I’ve made a Big Wave link. I have become aware again — and not for the first time, but for the first time in a long time, 5 years I think — how delicate a quality creativity is. How easily the imagination could be swung from itself, and everything be lost. It’s so important not to disturb the surface — but too, to disturb it, to dip down like a fishing bird, and find something. If you get in there and swim and splash about, you’ve got no chance. So I’ve spent a long time — hours maybe — trailing my fingers in the water: watching, listening, being, making a few notes. And soon enough, as long as I don’t move too fast, I hear a voice — mine and not mine, of course — that is the (maybe temporary) first line of a piece.
I’m so glad that this rich place near the surface hasn’t been wiped out by so many things happening in the last few years. I feel like a poet again, like when I was drafting How to Be a Dragonfly, which happened in a similar rush. To be honest, it’s a source of tearful relief.
***
So, Bigger Waves. Madness, I realise. And sorry about the last minute shift of point of view in this. Like writing a story, I suddenly thought hey I know what I want! I want the pure white froth… But by then it was too late. If it were a story, I would go back and re-do the whole thing with this in mind. But it’s not, so here we are.
I have heard from two parents today: one, H, whose son was diagnosed only 10 days ago.
For both, and for me and us, the lasting through is so hard. The holding-up. The way your life is shipwrecked. And you have to wander around, slowly re-collected, gathering up, all the pieces, new and old.
I find myself being in the position of old hand. 18 months in. Like in grief, you watch yourself move further away from that moment of change, that time of unremitting despair and numbing hard work.
I guess all I want to say is that it’s not that I don’t remember before diagnosis – it’s that I can’t, without the same crush of sadness as I felt at the start. So I don’t take myself there often.
So in that sense, um, I guess I’m not much help. Sorry.
But in every other sense: we help each other. Our children will grow up strong and healthy. Burdened – yes- but like us, with a deep understanding of what’s important.
They didn’t need this. Nor did we. Nor did our families.
Damn.
Thank goodness for small mercies. Friendship of a whole new type, to a whole new degree. Even in passing it means something real.
Hang in there, all of us.
- Posted using BlogPress from my iPhone
Location:Tile Kiln Hill,,United Kingdom
I was going to write something completely different today. Yesterday was my birthday, and — despite E running consistently high now for two days, irritating but welcome growth spurt we think — things have been good: he took his Grade 7 piano exam and it went well. Daughter M won a poetry competition at her school — and played well in a concert last night.
***
Yet. This morning I open my work emails to find one from an ex-student and long-standing friend and colleague: her 12 year old son is in hospital, diagnosed yesterday with type 1 diabetes.
Aside from being heartbroken for her — such a blow, just a blow for her and her family — I was overrun by things I wanted to tell her. This is where I started:
Resources: Children with Diabetes UK, JDRF, and Diabetes Support Forum. Book: Type 1 Diabetes in Adolescents, Children and Young Adults by Ragnar Hanas.
Make sure he gets onto MDI — multi injections. Then say you know all about pumps and you want to get on the list. Ask to be taught carb counting as soon as possible.
DO NOT let them tell you to bring his numbers down mega-slow. It will take a few days, but sitting around 13+ is NOT right. Keep on top of changes to the amount of insulin so that he comes down in few days. We sat with high numbers for several weeks.
DO NOT let them tell you that he can’t eat this, and can’t eat that. We received advice that was more suited to type 2 when E was diagnosed, and it was devastating. Your son can eat a normal healthy diet, with treats etc. He can only really do this when you learn to carb count — so that you can always cover what he is eating with insulin.. Things like brown bread or brown pasta being better is NONSENSE. In fact these are harder to dose with type 1, because they take longer to digest and therefore you can’t be sure that the insulin with the meal has covered them. What you DO need to watch while on MDI are snacks without injecting — these will send his blood sugar up quickly. You need to keep them small or carb free: small packet of biscuits — or better, cold meats and cheese, which have no carb. We can talk more about this later.
Also, I would advise regularly testing before a meal and if you can bear to, 2.5 hours after as well. This will help you quickly learn how his long term insulin (Levermir) is working (before the meal) AND how the short-term (Novorapid) is working (after the meal). When E was diagnosed we were only told to test after eating — and this was patently outdated and darn near useless. We had no idea what was happening with his blood sugars for several weeks.
Get Lucozade in the house — the fizzy stuff, if he likes it. Or small cans of coke. Glucose tablets and jelly babies work well, but fizzy is faster. Also small cartons of apple juice work very well. Get 15g carb snacks for after hypos: pre-packed small packets of biscuits like maryland choc chip or mcvitties digestives. Spread these things around the house — in his room, in your cars, in the kitchen. He will come home with a lot of kit. Empty out a cupboard in the kitchen and keep everything together.
The team at [our local hospital] are very nice, but not always up to the minute. Get yourself onto Children with Diabetes UK AND join the Diabetes Support Forum…. Go to the Parents’ section and put yourself on it. You will find a huge amount of support.
Oh dammit, H. It’s a hard road. I’m so sorry.
Call me when/if you can. I’m here.
Sorry if this is information overload. It will make sense very quickly though, and I wanted to tell you some things.
I’m so upset for you and your family. It will get much better, but…cry all you like. I cried for weeks and weeks and months. And we still cry now.
xxoo Patricia
***
That’s really all I want to say today. The same age as E at diagnosis. She said in her note that she kept up with this blog. And that she used it to learn some things before they went to the doctor’s with what they suspected.
In my head today I am re-running the scenes of diagnosis, and the horrible sense that we thought we were learning when in fact we knew so little. For so long T1 seemed difficult, but doable once we ‘figured it out’. The real sinking heart has come over a number of months, even a year, with the realisation that we will never figure it out. And that some of the initial information we received was inaccurate, plain mis-leading and patronising.
Another time I’ll make a clearer list of what I would have found helpful at diagnosis. It’s so confusing. But for now, well. I wish her luck, and wish, as I so often do, that I could just take this away from our beautiful children.
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.
The low gets worse. It scares him.
It scares you.
You count his breaths.
You can’t untangle this.
Or stop and start again.
He’s hanging onto your hand.
In that darkness you seal the deal:
your death for his unencumbered life.
You are more than ready to say yes.
You lay your palm on his head
like you used to
back when the fever would pass.
When E was diagnosed he stayed in a nearby hospital, about 30 minutes away. It isn’t our local one, but has a paed ward, etc, so that’s where he was.
I’ve since had no reason to go back. All of our consultant appointments are at the local hospital or at our shared care hospital some one and a half hours away.
I went back two days ago to pick up a CGM for E — great news in itself, and more on that later.
The ride there wasn’t great, but I was under some time pressure and that was occupying me. Then when I arrived, it began to hit. I remembered that day. OH had gone ahead with E, and I had joined from work. I remember not being able to find a parking space. And becoming hysterical, screaming and crying at the parking attendant that my son had just been admitted. Literally. I remember being completely and utterly beside myself, so desperate to get into them, although I knew that they would just be sitting there waiting to be seen….
Back to two days ago. I picked up the CGM. No problem.
I got back in the car and started driving out. And was overcome by memories. How I rushed to get back to my daughter, still at school, driving down the getting-dark road. How my father-in-law rang, having found messages from his son left all over. I pulled over to speak to him in that petrol station. My father-in-law, a retired doctor, took the symptoms from me. I sat there and said it over and over. I don’t know what he thought of me… Then, he was quite silent, and said he would phone the rest of the family.
So two days ago I drove back on my own just as I had done sixteen months ago. It was darkening then, and darkening now too.
I wish it had never happened, any of it. And I don’t like going back to that time, though clearly it is never very far away. For me, remembering what things were like before diagnosis is one of the very worst aspects to all of this. Does that sound selfish? And specifically, it’s the memory of how I felt about the future, what I thought the future would be like. I know we can’t predict it. But not knowing is part of the lightness, the hope and possibility of it.
The drive back from the hospital reminded me how very heavy diagnosis is. The weight of it and all it means. The whole future, so many ingredients of that future, barreling in on you, immoveable, endless and permanent. And worse, this future is your child’s. Your child has to face more in the future than you ever, ever did or wanted to. And none of them are positive, or even, I have to say, particularly hopeful.
As parents and carers and believers in advancements and how our attention can help, we search for brightness. Which is our job, and the best we can do, yes.
Over time, we have all pushed our way out from under it somewhat, but I have to confess that with diagnosis a rock became lodged in me. Perhaps like a gunshot, or shrapnel. And it’s like lead, dragging itself to a memory or a feeling, stirring just when I think so much has grown up around it.
And I’m going to share something else. Soon after E’s diagnosis, in one of our tearful heart-to-hearts, my daughter said it all so well. She said, now I know what forever is.
That’s right. And it’s not really a thing to know. It’s so heavy to carry around.
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.
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