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.

Better late than never, Elsie and I, day #260

It finally arrived, my Abbott Freestyle Libre. After tweeting about it since it was announced at EASD 2014 and I admit, hassling @abbottnews about it for weeks.

I was more than slightly frustrated by the hype that Abbott had created, then it seemed that they were unable to deliver the goods. Following on from that, they quietly started selling the Freestyle Libre, without notifying all the people they had encouraged to sign up for alerts. Putting all of this aside, I was still extremely keen to get my hands on one.

Studiously following other early adopters, as I’ve heard us called on Twitter, the Freestyle Libre experience seems to have been absolutely polarised. It’s either been fantastic, or extremely disappointing in equal measure for people. Lets not forget that this is an expensive piece of kit. Ok, it’s not quite the cost of Continuous Glucose Monitors from the likes of Medtronic and Dexcom, but it’s still close to £140 for a starter pack if you are in the UK. With this in mind, I think it’s fairly reasonable for people who’ve not had the expected performance from their sensor and reader to be a bit disgruntled and have a rant on Twitter.

I have a feeling that Abbott were somewhat taken aback by the initial demand for this product, but it may just have been a clever marketing ploy to whip us all into a frenzy after EASD2014 and keep us hanging by a thread until we were foaming at the mouth with frustration.

My 3 little yellow boxes arrived today, bang on time, as per the text message I got from the courier company. Hat’s off to Abbott for using a reliable courier who knows how to keep customers informed. Customer Service positive #1.

IMG_5294 IMG_5295

I had been looking forward to this moment for ages and couldn’t wait to start. Within 20 minutes of the parcel being delivered I had applied the sensor, as instructed to the back of my upper left arm.  This was incredibly straightforward. Surprisingly, I had a little bit of discomfort, which I wasn’t expecting at all. Having read lots of blogs, and looked at the promotional videos from Abbott several times. Everyone was in agreement with Abbott that insertion was pretty close to a pain free process.  Don’t get me wrong, this wasn’t exactly painful, just a bit uncomfortable.  I wasn’t too bothered by this.  I’ve had far more painful set changes and injections in my 30 years of being Type 1.

I started the sensor which simply needed me to turn on the reader and swipe it over the sensor.  The countdown began:

IMG_5299

After 15 minutes or so, the sensor was still a little uncomfortable.  I never thought too much about this, but put my hand to it to find that it was covered in blood. This explains the discomfort. I’d obviously nicked a little vessel when I put the sensor in. I can’t deny that I was a little bit freaked out by this.  I’ll refrain from reposting the gory picture that I put on Twitter and on the Freestyle users page on Facebook again.  I was imagining, like a set for my pump, that once it was bleeding, the sensor would become unusable. Bear in mind these babies are close to £40 a pop. Ater I had calmed myself down I called Abbott Customer Services.  My call was answered quickly and the rep I got was very helpful. After asking me a few questions about how uncomfortable the sensor was and how much blood there was, he advised me to remove the sensor and told me that he would send a replacement to me. Customer Service positive #2

I had to pick The Boy up from school, so decided to leave the sensor in place meantime.  After an hour it started working.  Variance as been between 0.2mmol/L and 4.2mmol/L. I’ve done fingersticks using the Libre and my Contour Next Link.  The higher variance has always been with the Contour meter.  I’m pleased with these figures.  Abbott advises that a significant variance is to be expected in the first 24 hours. Notably, the largest variance was after a large, high carb dinner with a post prandial high of 14.2mmol/L on the Contour. The discomfort has gone too. I’ve decided to leave the sensor in for the time being.  I was advised by @Colonelblighty that sometimes with CGM, the bleeders worked best and @drivendiabetic that no one had associated bad sensor performance with bleeding on insertion.

So far, I’m pleasantly surprised by how well it appears to be working.  My main aim for using the Freestyle Libre, is to look at profiling, so even with some variance, I’ll still be able to see periods where my blood glucose is rising or falling and will hopefully make it easier for me to fine tune my pump. Oh, and I’m already loving the graphs.

Fingers crossed it continues.

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, 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.

Ramblings of a Stressed Diabetic

My name is John.  I have had Type 1 Diabetes since July 1984. For most of my life with Diabetes, I have been treated with multiple daily injections of long acting insulin in the evening and quick acting insulin with meals. (MDI).

I decided to start this blog after (finally) beginning treatment of my Diabetes with an insulin pump. This was partly to try and share my experience of this as I was reluctant to consider a pump for a number of years.

My life with Diabetes has been relatively uneventful.  I’ve never had a full blown Diabetic Keto-Acidosis – even at diagnosis.  My older sister is also Type 1, so my mum recognised the signs and symptoms relatively early when I was first diagnosed. My HbA1c (rough measure of control) was always relatively good – sitting somewhere between 6-7%. Kidney function is good and I have no diabetes related problems with my eyes. My single biggest problem has been recurring overnight low blood sugars, or hypos.

At times I have had problems with anxiety, stress and depression. I don’t honestly know if this is related to my diabetes or not.  There is certainly good evidence to support that this is the case. What I do know is that when my diabetic control isn’t great, I don’t feel great. Either physically, or emotionally.

Why consider the pump then? Recently I have more and more overnight hypos. These generally leave me feeling terrible for the next day and also make me prone to further hypos; my control has gradually worsened with my HbA1c shifting to between 9-10%; I have developed chronic pain in the joints in my feet and hands with trigger fingers. This pain may or may not be Diabetic Cheiroarthropathy – I’m still being investigated for this; all of these issues were affecting my overall quality of life and more importantly, my mental health. So, I decided now was as good a time as any.

I’m currently on day #9 of my pump regime, the link will take you to my thoughts of how it’s going so far.

I’ve tried to include some links where a more detailed explanation of something may be required. These aren’t personal endorsements of sites and I can’t guarantee the validity of the content of any articles I’ve linked to.

I’ll also try to add a little bit of Tech stuff every now and again.