Black Dog Days. Elsie and I, day #269

Today has been one of those days. One of those days I fear. On the face of it, it was just a little bit disorganised, tired, grumpy and clumsy. Stuff had been going wrong all week and I can usually tell how my mental health is by how well I cope with the little surprises that life has a habit of throwing at you.

We had a near miss earlier in the week with the power supply unit for our router. Burned out and smoldering, I had to turn off the power and quickly get it out of the house wrapped in an oven glove. I’m one of these folk who goes around switching things off obsessively when they’re not in use. Thankfully, as I’d been out just bfore it happened and there was noone at home. This left me shaken and stuck in fight or flight mode for the rest of the day.

On top of that, I had 2 sensors for my Freestyle Libre give up the ghost within a couple of days of one, another. To be fair, the sensors didn’t give up the ghost, the adhesive did. I also have a suspicion that I may be allergic to them. Not sure if it’s the adhesive, or if it’s the actual sensor. I’m waiting on replacement sensors and fully intend to continue using them. It may just mean that I have to use it intermittently, raher than continuously. I’ve already had fantastic results with it – fantastic in the sense that I had enough, reliable data, to fine tune my pump with a notceable improvement in my numbers, and more importantly, in how I was feeling.

So, why the black dog days? It’s hard to put my finger on it. Nurses have this thing called Hypothetico-deductivism. I should point out here that it’s not exclusive to nurses, but we use it a lot. It’s basically grand sounding words that mean trusting your gut; experiential learning.  I’ve been here before. Lots of times in fact. I’m getting lots of cues and red flags about my mental health and I trust them. Being incredibly, disproportionatly disappointed or angry when something doesn’t go to plan, for example. See earlier mentioned sensors not sticking when they should. I ignored these cues in the past and ended up in a state I hope never to be in again.

The list of my warning signs includes not sleeping well; Anxiety and stress – That’s the big one.  The problematic one. The most disruptive one.  I find myself questioning and doubting myself all the time. I’m a rubbish partner, parent, friend, boss, colleague, <INSERT RANDOM RELATIONSHIP/ROLE HERE>. I know where this, in particular, comes from and thankfully, after years of living with it, I have strategies to deal with it. Then there’s the catastrophic thinking. Don’t get me started on the catastrophoc thinking.

I also get grumpy and irritable and have a tendency to care less about my physical health.  I had 2 custard doughnuts for my lunch today. Not the best choice I’ve ever made. I also never bothered to change a set yesterday when it was due.  The net result was a painful lump in my abdomen tonight and a BG of 17mmol/l. Thankfully only 0.1mmol/L of ketones.

Talking (and blogging helps). Identifying triggers definitely helps. Recognising when the self help stuff isn’t working and knowing when to ask for help and/or medication helps. Thankfully I have people around me who know when I’m not so well and have the confidence to speak to me about it.

Despite all of this, I’m nowhere near as ill as I have been in the past. Winter is always a bit hard for me. I’m still getting a fair amount of pain in my feet, leg and my hip, with no sign of a physio appointment yet.  I’m also still waiting to get my left carpal tunnel sorted. To cap that all off, my trigger finger in the left hand is back too. Work is busy and I have lots of days where I feel I’ll never get everything done that I need to do. I’m well aware that most of us have days like this. That it’s perfectly normal. That I shouldn’t judge my performance on days like this too harshly.

I found this on Facebook, and thought it summed up perfectly where I am just now.

Don't forget

So, tonight, I’m going to publish this post, have a long bath, have a medicated sleep (OTC stuff only), do my best to stop the negative thinking – I know I can do this, because I’ve been here before and managed.

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Elsie and I, day #88

Where do I start?

Everything was thrown into chaos last Friday, when my son was diagnosed T1.  We’re all feeling a bit shell-shocked.  I still can’t quite believe it’s happened, but it has, so there’s nothing to do but deal with it. The Boy has been fantastic. He seems to be taking it in his stride, but I’ve a feeling there’s a big (understandable) meltdown on the way. I’ve already had a couple and most nights before bed I’m more than a little bit emotional.

We’ve been incredibly well supported by the Paediatric Diabetes team at our local hospital and thankfully he didn’t need to be admitted. There’s been so much to take in, even though it’s stuff I already know. It doesn’t matter that you’ve got nearly 30 years experience dealing with a condition, when suddenly it’s not yourself, but your 10 year old you need to test, inject and carb count for. I’ve always tried to answer The Boy’s questions about my diabetes and I think it’s helped a huge amount. He already understood what Type 1 Diabetes is, including basic physiology and how it is managed.

I’m incredibly proud of how quickly he took responsibility for testing his own blood glucose and injecting his insulin. Without any prompting, he asked when he was going on a pump. So training starts next week. This may change though – going live date clashes with the school show and The Boy is currently mulling over which is better – giving up his big part or delaying go live! I’ll keep you posted.

I really do wish that I could take it away from him, more than anything I’ve ever wanted in my life. It breaks my heart to know that I can’t. All of a sudden I feel like all of my worries and anxieties are trivial and unimportant, and I just want to fix it. I know I’m not alone in feeling this frustration and anger. Countless other parents, including my own, have gone through exactly the same thing. I need to focus on the advantages we have. I’ve already got a fantastic network of people I can go to for help and support and I certainly know enough about diabetes and how the system works to look out for him and create merry hell if things aren’t going as they should be.

As far as things are with Elsie and I, we’ve kind of been bumbling along, things are generally going ok with a bit of a creep up on my overnight and morning readings. I think this down to a shift in my body clock affecting my dawn phenomenon. I know why, but haven’t done anything to rectify this yet. I’ve been working less early shifts than usual and a lot more lates. The net result of this is I’ve been eating later and getting to bed later – often after 2.00am because of the shifts I work. No averages for this post. Technical issues mean I can’t upload data from my pump to the Medtronic site. I’ll hopefully get this sorted soon.

Things to work on: Keep calm! & Basal, Basal, Basal!

Elsie and I, day #50

Today has been a generally good day. After all the stress of the last few weeks I’m beginning to feel like my old self. My GP has reduced my BP meds and I’m feeling a huge difference already.

I’ve spent some time looking at my last few weeks results on Carelink and using the 1800 and 500 rules with my average daily insulin dose. I’ve reduced my insulin to carb ratio and my correction factor. There’s been a noticeable improvement already.  Remember if you work in mmol/l you will need to divide your result to the 1800 rule by 18 to convert from mg/dL to mmol/L.

I also managed a tasty low carb dinner, loosley based on this grilled swordfish with peach & avocado salsa. Peaches are out of season, so I substituted kiwi for them and used cod because it was reduced in the local supermarket. 18g carbs in one serving I reckon. (I used the My Net Diary App to calculate this).

I’m looking forward to the next few days to see how things go and hoping to get some (gentle) exercise done tomorrow.

Elsie and I, days #10 – #16

The last week has been ok. Not fantastic, but not too bad either. There have been a couple of minor (potentially major) fails. Minor, because i was sort of prepared. Had I not been, they would have been fairly disastrous.

  1. First one was something I’ve been assured by others on Twitter that has happened to almost everyone when they begin using a pump. I showered before leaving for work and in my usual routine got dressed, grabbed my lunch and left the house, with Elsie sitting on my bedside table. I never realised until i got to work – some 40 minutes later. No need to panic though. I managed with a spare reservoir and an insulin syringe – with lots of testing and lots of very small injections.
  2. Saturday morning Elsie ran out of insulin at work. I thought 20 units will last me until lunchtime no problem, but it would seem that I either go through 20 units more quickly than I realise when I’m grazing at work or 20u doesn’t really mean 20u. (I’ve a feeling it may be the former). Elsie is now set to start nagging me (gently) at 30u left in reservoir.
  3. Following 2. above, I had a rather hasty set change followed by 24 hours of not so great blood glucose readings. These weren’t off the scale but higher than I’ve been used to recently. I put this down to it being the weekend, not having basal rates set for working early shifts and eating more carbs than usual – weekends usually involve pizza, crisps, a small amount of wine or beer and other things that would have the Dietician foaming at the mouth. I finally paid attention when the cannula site became painful.  On closer inspection, much of the insulin Elsie had delivered was just sitting under the skin. A not so hasty set change quickly sorted this out. I need to trust my carb counting abilities – I’ve been doing it for years and knew that I shouldn’t have had to correct as much as I was doing.
  4. I drove to my Other Half’s last night to discover I had left my emergency bag in The Shire. A brief panic at the prospect of an 80 minute round trip was making me more than a little bit grumpy, but I’ve been  forgetful for a very long time – as you can probably tell from this post – and have got into the habit of keeping spare meters in various places as well as insulin in various fridges. Panic over.

Still feeling great. Still got lots to learn. To top it off, my HbA1c has come down to 7.7% (60.7).  Looking forward to the next 7 days.

Elsie and I, Day #9

My going live date for my insulin pump was 17th February 2014. so today is day #9 by my reckoning – if I finish writing this post before midnight.

After a few days I decided to name my pump Elsie. I quickly got the feeling she, as I’ve decided, was a bit like a gently prodding, well meaning Granny. Reminding me to do stuff quietly and generally keeping an eye on me…

So far it’s been good. Good, but not great. This is to be expected. I’ve also dropped the ball a little.  I had a weekend away walking and indulging myself and my other half as our Christmas present to ourselves this (last) year.

The first five days were pretty hard going. With lots of overnight testing of my blood glucose. The diabetes isn’t a new thing, and I’ve had years of getting to know what happens with my slightly dysfunctional body. I know, for example, that first thing in the morning my liver is likely to go into overdrive, dumping glucose stores into my bloodstream, making me feel like I’ve been awake for days in the Sahara desert – parched and exhausted – usually as irritable as an old rabid sloth with a wasp in his ear.

This dawn phenomenon isn’t unique to me, or indeed other people with diabetes. It’s a natural response to help us get up and going for the day but for me it’s aways been a thing – take enough long acting insulin to cover it and I’m fine through the day but overnight I’m dangerously low and have been known to take hypo related seizures. Sort out the low blood sugars overnight and I feel awful first thing in the morning. Vicious circles here we come.

After 4-5 sleepless nights with me (almost) managing to test 3 hourly overnight and a couple of days of fasting the standard basal rate is almost there.  It’ll no doubt need some tweaking but it seems not too bad already.

I’m slowly starting to trust Elsie, I’ve had years of anxiety about night hypos and getting there with the basal has been one of the biggest thing for me so far. As a shift worker I’ll need to sort out patterns too, but I reckon this will be a fairly straightforward shift of the whole day by a few hours as it was with my MDI regime.  I’ve got that to look forward to over the next wee while.  I would often joke that my default state was tired and hungry. Always exhausted, particularly in the mornings and constantly hungry – all day, every day. The hunger has gone. I still don’t quite believe it and I have far more energy too.

I’ve been known to witter on a bit, so I’m going to finsh here with a few points:

  • Biggest leap of faith – switching off the automatic shut off overnight.
  • Biggest inconvenience – infusion set packing in through the night.
  • Biggest positive – feeling far better than I could have imagined after only a few days, not being hungry and no overnight hypos (yet).