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I’m willing to accept that there may be such a thing as being too alert to your cat. So let me state that right off.
However, the last few days with Cleo and the kittens have been utterly fascinating, and make me realise (all over again) how all animals have to negotiate — whether instinctively or deliberately — the development and independence of their offspring. How we may think one thing, but encourage another. How we may wave goodbye and then burst into tears. Etc.
Here’s the thing: two nights ago I was up for four hours trying to settle the kittens with Cleo. She had suddenly taken it into her head that they needed moving. They weren’t safe. Perhaps it was simply that the other basket was too small — which it was. They were like sardines in there.
Anyway, that evening I twice came to the door of the playroom to find her next to a baby with a wet scruff. I deduced (!) that she was trying to move them, and if the scratching UNDER our bed earlier had been anything to go by, she was planning to take them there, where they could not be even slightly contained… Sigh. So I shut the door. At 4am she would not be quiet. She called and called and called and called. She got out and ate. Came back and called. Searched and searched for someplace to put them.
Sigh. I was struck by an idea. I righted a box we had in the room, put a blue blanket in it, and moved the kittens in. I know she likes the blanket. The kittens were HUNGRY. She climbed in and fed. Phew, I thought. Went back to bed. 5am.
Within the hour she was crying again, clearly trying to tell me something. She was out of the box. She didn’t like it. She kept looking from the kittens to me and back again, like do something!
I had another idea. It was an open box, though a table ran along 2 feet above it. I knew, for some reason, that she wanted more privacy. So I took another fleece, and pegged it to the table (under the guinea pig cage, mind you…stay with me), and draped it like a tent around the box.
Hmm….she checked it out. She quite liked it. She purred. She climbed in. And the deed was done.
Now, what’s been interesting from this is that the move to the bigger box meant that for another day the kittens didn’t venture out. They had more room, and maybe didn’t need to. They kind of poked their heads out of the end, then most of the time Cleo would make noises and literally yank them back: your bottom needs cleaning. Etc.
She wasn’t ready for them to go. And they probably weren’t quite ready to go.
Because last evening and today, she’s done something completely different. She has gone into the room and called them OUT of the box. It’s hysterical. Their little heads poke out and they fight to get out of the box, getting stuck, and they tumble around her. She bats them a bit, bites their ears, lets them suckle a little. They stagger about quite happily and explore. After a few minutes, she stands up and walks into the box. And gradually they follow her in, and everyone settles down.
It’s so simple. She knew what was best. She really did. She knew that if she had someplace different for them, they wouldn’t keep wandering out of the box and getting a bit lost before she thought they were ready. She knew when they were strong enough, and encouraged them to get going, to play.
Wow. When the children were little, I always made decisions about ‘what next’ based on what I would call my gut instinct. But I didn’t know that it probably really is instinct, in the flesh. It’s a real, palpable and despite our evolution, necessary thing which pushes us forward, helps development and survival. At each turn — sending my eight year old to get a cup of water from the counter, sending my eleven year old up the hill to buy some bread… or even standing in front of our one year old (we’ve all done it!) holding out our arms (that’s right, walk to mummy) — at each turn, something could go horribly wrong. You dream about everything that could go wrong. Like I’ve seen in Cleo’s eyes — they’ve gone too far! make them come back! But you know it’s your job to say hey come out here. The world is good. The world is full of new things. There’s a bit of it that might be dangerous, yes, and sometimes stuff happens. Don’t I just know that stuff happens. Better to learn to walk and run and play.
Hello everyone!
I’m at last in front of an actual computer to write this (get ready for nice colours). The sun continues to shine — and we had a fabulous break. Yay!
Here’s what went well:
1) LOTS of good numbers, even with at least three days of fairly constant walking/hiking/splashing in cold lakes. (Thank you, not for the first time, the team that made temp basals. A godsend. For half of one day, we put E on a 0% temp basal, eg NO insulin dripping in. And for one night, we put him on 50%, because of exercise. All complete guesses. BUT THEY WORKED!)
2) One, count it, ONE hypo in a week. Out of routine, LOTS of cake, lots of guessing carb.
3) Only one day of inexplicable highs: all day in double figures. Oh well. We just pumped the insulin in, put him on a 120% temp basal, and by midnight he was down again. Growth?
4) Both of my children seemed to grow daily while away. Like plants in the spring with sunshine and showers. I kept thinking they were standing on tip-toe. It was incredibly peculiar. E is now clearly taller than me. His eyes are at my forehead. When he throws his arm around me, I’m like his little sister. Eek.
***
The best day for me was our first real day of walking. We had a close friend staying, and chose Cat Bells to show her and climb with her. We’ve done it twice before, before diagnosis. It was a gloriously sunny day. The way was crowded, but everyone was in good spirits. One of the joys of Cat Bells is the height gained so quickly, and within minutes we were treated to breathtaking views of Derwent Water, Bassenthwaite etc. As we climbed, the view just opened out more and more, til at the top of course it was 360 degrees of mountains and lakes. The weather was perfect: sunshine, not too hot, no wind (even on the tops!).
It was the longest walk we’d tried since diagnosis. The only hitch had been starting high — a forgotten honey on the toast dose! — but with insulin in to correct, and with the hard slog, E dropped from 17 mmols to 6 mmols in 20 minutes! We then put him on a 0% temp basal for the whole walk, and gradually raised it through the evening. No hypos. No highs. More cake.
We all got a little sun, and look about ten times healthier than we have in months I feel.
I also feel that we can do anything now!
I know we can’t. Without lots of planning and thought. And without lots of intervening low times. But the relief of being able to do this without panic, without short term or long term danger is intense.
The relief of being able to enjoy something, really revel in it, without the tight knot of worry or fear… is an amazing feeling.
***
Okay amongst the small things that didn’t go well is a distinct lack of photographs taken by me! Argh! Obviously delirious with joy at our successes…However, in my search for Cat Bells I have discovered a fabulous site: Striding Edge. Absolutely brilliant walks and photos of one of our favourite places in the world (so far!). Nearly 25 years later and we have not tired of it.
Here’s one of the site’s photos of the walk to Cat Bells. It shows a rather busy, sunny time, which is just what we had. A bit of a party atmosphere, actually! Enjoy.
copyright http://www.lovethelakes.net
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
My friend’s son’s diagnosis of course is still at the top of my mind. And I’m struck by something her message to me yesterday said: I know it will be like trying to carry water in my hands.
Indeed.
This seems a particularly apt way of describing the first feelings, like nothing stays with you for long. Like you start off on a walk, with your hands full of the stuff, then you take three steps and they are empty. So you go back and start again.
In our house we use the pedaling a bike slowly uphill metaphor. I think of how the front wheel twists and turns in this situation, how you just about stay on. This is how we feel. Most of the time.
And in another entry, the running for the bus one seemed best: you chase after, then when you finally get on it, you realise you should be on the one way over there, on that road.
***
These are all quite depressing ones, really. There must be some moments of relief. I’m thinking of my friend H here and her son. What to tell them?
What are the moments of your or your friend’s/child’s care like? What images occur to you in the middle of the night, or in the day on your own, or when you think of the people you love? Have the images and metaphors changed over time, or like us, do you have different ones for different times?
I’m just curious. Because I know that thinking through metaphors somehow helps me cope. It helps me express and articulate these complicated sets of feelings as nothing else can. I feel like there I’ve said it. For the moment, anyway!
***
On the home front, after a few days of highs and raised temp basals (more insulin dripping in), we realise that we are back where we started after the last unexplained round of lows. Sigh. Spluttering pancreas, growth spurt, infusion set site? Who knows. Two mornings now of finally waking in target.
What would be the metaphor for this?! Two steps forward, one step back? No, that’s a cliche, and different.
How about following an overgrown path until you reach a sort of clearing. You take a breath, but then realise that the path continues out the other side, and that you must follow it. It’s a bit of a slog, lots of cutting back and hacking through. But you do it. When you arrive a the next clearing, after a few minutes it dawns on you. Yes, it looks familiar. You were here before, only now you’re approaching from another angle.
***
All being well I will update in the next couple of days about the school’s talk with M’s year group, the Bayer Contour USB. And maybe daffodils.
I’ve heard from my friend again, another day on into diagnosis. Her son is coping well (as they do), and the information they are receiving meshes with information I passed to them. Thank goodness.
When I told E about my friend’s son’s diagnosis, he was quiet. He then said, Tell her it gets easier, but it’s never easy.
There you have it.
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.
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 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.
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
Waving and Drowning 