Not a minute too soon...

When I talk about my transition to life on an insulin pump I always tell people that I never knew how much I disliked injections until I didn't have to do them anymore; then, it became obvious. 

I never minded jabs at all.  I have this vivid memory of back when my family lived in Germany and it was celebrated when, at just four years old, I jabbed myself for the very first time.  I still remember sitting on my parents bed, my skinny little legs dangling over the side.  Due to being little more than a baby and the whole world seeming bigger, my feet were clear of the ground by two, maybe three feet.  My parents and younger brother were there, sat around me.  As I gave myself an injection with one of those old, plastic orange-capped hypodermic syringes, the needle for which seemed metres long, they all cheered and spoiled me with celebrations.  If I close my eyes, I can still see the beige colours of the bed sheets and the 70s patterned carpet.

Last night, as my G4 sensor clung onto my arm after 22 days, still giving me numbers as close as 0.1-0.2 mmol out, but with the adhesive having crapped out on me completely, I decided enough was enough.  I'd given myself a really nasty looking rash (not with the Dexcom adhesive as some people have, but with the plasters I was using in a desperate attempt to secure the sensor for a few more previous days), so decided the time had come to pull it.

(Sorry about the photo grossness, but you know, for the purpose of education...)

I have a rule about sensor use: as my husband and I don't grow a money tree in the garden for me to afford it we have agreed two sensors a month.  This amounts to around £90-100 in any one calendar month which, although still disgustingly expensive (considering I now see this as a fundamental part of my self-management and something I simply couldn't do with out), we are lucky enough to be in a position to be able to fund even that much.  Sometimes, if a sensor doesn't go the full 2 weeks we need (rare), I have to miss a couple of days in between in order to allow coverage for a whole month. Last night,  due to the rash and lack of options to stick the adhesive back on, I had my first sensor-free night in around 73 days.

It sucked.

As I crunched my way through 6 dusty Dextrose tabs to try and bump up my blood sugars after an unwelcome 2.6mmol (46 mg/dl) smacked me in the gut at 2am, I would have given anything to plug back in.  I was having a full-on freak-out about, "What the hell do we do when we have kids and can't afford this anymore", and "Maybe we need to start saving now" kind of dramas that my husband could no doubt do without at 2am.  It was right about then I realised just how much I love my G4: I love it as much as I love not having to give myself jabs.  Perhaps more.   

One day I hope all PWDs (People with Diabetes) will be able to sit around and discuss their CGM readings and talk how much easier it makes all their lives.  While we're at it, I would really like a cure, but that's another post.

As I departed for work today with my new sensor on board and in the two-hour warm-up period, I was happy that no more low blood sugars would creep in today.

Do you have a CGMs, and has it made a difference to your way of life?

Animas SportsDay 2013: I need to find a word more awesome than 'awesome'.....

“There is no power for change greater than a community discovering what it cares about.” - Margaret J. Wheatley

When Animas first brainstormed the idea of bringing together a group of people with diabetes with a common interest in Sports and exercise, they most likely had no idea that only a handful of years down the line a spot on that weekend would become such a sought-after commodity in the realm of diabetes events.

In only its fledgling years, it is fast becoming an event in the diabetes calendar not to be missed, offering the chance to learn from the UK's leading specialists about the physiological impact of sport and exercise.  It teaches us how to manage wily blood sugars when you are half way through your desert marathon run (I'm not even kidding - meet Roddy).  

Learning how to manage those challenges and practice the teachings with a host of medical professionals on hand are just two of the gifts the weekend can offer.  Attendees have the chance to hear motivational talks from people who have achieved the most inspirational goals and last but most certainly not least, participants are offered the chance to come together with others from across the continent to form a community of people affected by awesomeness.  That's right: awesomeness.

So how do you sum up that kind of weekend in a post that isn't the size of an average Dissertation?  It's hard, but here goes:

The talks

The weekend kicked off with a welcome and talk from Dr Ian Gallen, the man heading up the education on the weekend who boasts references such as being consultant to Sir Steven Redgrave during the Olympics (we simply file that under 'legendary').  He explained the impact of different types of exercise on the diabetic body and gave information on how to negotiate those changes with a pump or multiple daily injections.  He told us about the effects of hormones on blood glucose levels and how to fuel effectively during exercise.  His talk, the culmination of decades of work, left everyone keen to get going on the 'trying it out' part of the agenda.  

Saturday offered advice from Alistair Lumb about the benefits of incorporating pumps and - to a lesser extent - CGMs in exercise management.   Later, Dr Chris Kelly gave his talk on comparisons between different diets and maintaining weight loss longer term and to accompany him, your very own Ms Independent (Kelly Clarkson?) gave a talk on my own weight challenge over the last year.  

The awesome Claire Duncan took to the floor to share her story of competing in not one but two half Ironmans (Ironmen?) and a full one (140.4 miles of swimming, biking and a whole marathon to boot!), as well as swimming the channel AND being a regular triathlete.  She told us of the pull she has to sport, and offered words of advice to those who want to get started.  And did I mention she's awesome?

Finally, everyone's favourite Mr Motivator and social media powerhouse Paul Buchannon took the floor to talk about the Great Britain Diabetes Online Community (GBDoc) and how his simple idea of getting people talking to one another and find friendship in the furthest corners of the world led to him founding DOCs in over 12 countries.  What a difference one person with an idea and a bunch of enthusiasm can make...

The exercise

Armed with the tools now firmly stored in our diabetes arsenal, the participants headed off after their more than ample breakfasts to experiment with the advice given and the sports on offer. 

The activities of the weekend included circuit-style fitness, boot camp and spinning, while the afternoon brought Badminton and Volleyball.  On Sunday we had the chance to play a game of rounders, which was evidently more about enthusiasm than skill, although I did manage to hit a ball for the first time since school.  This impresses you, I can tell. 

Other lessons from the weekend included that I ‘volleyball’ in the same manner I ‘Salsa’ and that I am significantly better at smack-talking the other team than I am contributing to the success of my own.

What I really learned about exercise however – including how and when to adjust basals, what recovery snacks are best and how to exercise safely - will undoubtedly assist me in the challenges I hope to embark on in the next few months. More on that, later.

A post with specific lessons will follow because as you can see, there is just too much going on in such a short time to confine it to just one post!

The people

As with most of these events, it is the people who make it what it truly is.  The event saw people of all shapes, sizes, nationalities, exercising experience and sporting prowess come together.  United by diabetes, this year saw a much bigger attendance by our European family members including those from Germany,  Sweden, Switzerland, Finland and the mildly bonkers Danes (who even brought along and demonstrated their own dance?!).

It is the kind of event that starts with people politely asking 'where are you from', and closes with ‘let’s climb a mountain together’.  It is a safe space where everyone there has something in common with you.  It is the only gift I believe diabetes gives us; a universal family.  It allows us kinship with those we’ve never met, and allows us to be friends with people in an instant, simply because they get ‘it’. It brings us community.

As the closing comments were made and with a lump in my throat I felt compelled to speak out.  In the previous day's reflection sessions, Dr Gallen divulged how when he first tried understanding the physiology of the diabetic body during exercise all those years ago, he was told he was ‘mad’ and that it was ‘pointless’. Are we, by extension, then also pointless? Are our goals, no matter how challenging and admirable, also pointless? The people with diabetes who want to climb a mountain?  Those who wish to swim the channel?  Those who aim to lose weight because they deserve a better, happier life?  Those who go on to inspire others?

No, our goals are not pointless; we, are not pointless.  Thankfully, Dr Gallen ignored those comments and years on he and Animas have helped create a community of high-aimers and won’t-settlers, who are achieving their goals because someone understood the value of helping us get there.

To them, I say 'Thank you'.

Exercise: the how-tos and what-nexts

Last week my husband and I were able to steal a few precious days away in Scotland in the run up to the Children with Diabetes 'Friends for Life' event in Glasgow which was, of course, awesome (post to follow). 

I love Scotland - more than I love chocolate - and I wanted to be able to walk the hills and mountains and soak up the (what turned out to be) gloriously rare Scottish sunshine. 

 I made this vlog because it always amazes me just how much Degree level mathematics goes on when a person with Type 1 tries to exercise, so hope this helps you if you too fear mountain-top hypers or valley-deep hypos when you exercise. Enjoy. 

Crazybetes, steel cannulas and I can only apologise for the 'dancing'

 After some major blood sugar wobbles this week I made some changes to my diabetes treatment and added a new weapon to my diabetes arsenal.

I've added a little video to talk about how and why I gave them a try which you can watch here below.



 The cannulas are called 'Sure Ts' by Medtronic and carry lot number MMT 864.

The look like this when you wear them:

And this one is just the box label, in case you have trouble tracking them down.












 
So, as a newbie myself tell me, do you use Sure Ts and if so, whaddya think?

Doing the hard work for me

I've now had my Dex for a little over 3 weeks.  The post about first impressions is still under way because I have been marvelling at it so often that I have yet to find time to say all I want to say about it; I am permanently stuck on my 'amaze' setting at the moment.

But something I wanted to quickly share with you today was just how the Dex proved its value when I emerged from my post-burnout 'lull' and decided to once again brave the gym.

Learning all of the exercise rules all over again - like how long to leave between lowering my basal and starting exercise, or how many carbs I need before I workout - can take a while.  In fact, as it has been a month since I was last in the gym my body has been busy changing its insulin needs at an alarming rate, so I wasn't sure what to expect. 

After a long day of high BGs it was a welcome sight to be under 10 mmol (180 mg/dl) by the time I reached the gym.  But the downward trend at 7mmol made me a little wary so I popped a couple of Dextrose, just in case.

I had been thinking it would just be nice to know what I was when I exercised, rather than relying on being 'OK' during exercise and testing my bloods as quickly as I can after.  So when at 27 minutes in I was facing this little chart, I new that my first day back would need to be treated as a 'work in progress'.

Lucky that I had my Dexcom because only 5 minutes later in the gym cafe, I was facing this little beauty. You gotta love the 'YOUR HEADING DOWN FAST, LADY' trend arrow; it's a pretty good early warning system

Why do I love my Dexcom? 

Because I don't get hypo symptoms during exercise but today that didn't matter; My Dex was all over it.

Dexcom G4 Sensors - Life Tally

It is the diabetes community's worst kept secret that Dexcom CGM (Continuous Glucose Monitor) sensors last well beyond the seven days they are approved for.

While I am not a diabetes professional and would never recommend using a sensor for longer than the approved seven day period, I do bend these rules myself. I may not be a diabetes professional, but I am a professional diabetic; I manage this beast full-time and have had to find ways to make CGM a more full-time part of my self-care.

In the UK, there is no such thing as medical insurance and as yet there is no guidance on providing diabetic patients on the NHS with sensor funding. This will change one day, I hope. But until it does I have decided to fund my sensors myself and at £62.50 for each sensor, wearing them for only seven days is just not an option for me; being more economical with them is the only way I am going to make this work.

In fact, it was one of the reasons I chose a Dexcom in the first place.

So I have made the decision to wear each sensor until:

a) the sensor expires naturally
b) the results become unreliable/inaccurate
c) any irritation occurs (indicating my body may need me to remove the sensor before an infection occurs

I have decided to keep this tally of my Dexcom sensor lifespans out of interest; mainly my own, but I suspect there may be other people out there with an equal interest.

I hope you find it useful

______________________________________________________________________

Sensor one: Sensor expired naturally but remained accurate until the very end. No irritation. Total use - 13 days.

Sensor two: Turned sensor off due to some inaccurate numbers meaning less reliable. Total use - 11 days.

Sensor three: Sensor still very comfortable but '???' symbol appeared at the end of the session and after 4 hours sensor turned off by myself. Total use - 8 days

Sensor four: Extremely accurate from start to finish.  Very comfortable to wear.  ON final day I had one calibration of 5 mmol away from the BG result, and 2 hours later the question marks of doom appeared.  Sensor stopped working.  Total use - 25 days!!!

Sensor 5: 18 days so far - still in use....

Alarming...

Last night I boarded my plane home from Scotland with my pump alarm peeping away in my pocket. Through the day I had acknowledged several of these alarms, squawking away at regular intervals, aimed at informing me that I was running low on insulin.  I 'okayed' the alarm and clipped the pump back on to my waistband, having done the quick calculation in my head that 3 hours travel time would put me back at home as the last 4 units ran dry.

Of course, when I actually met up with Jamie at the airport I was full of the news of the day. I chatted to my him, ate my dinner and went about my evening fun, eventually crashing into bed; worn out from the day's events.

My insulin ran dry at 10pm.

When I awoke this morning and checked the trend graph on my Dexcom G4 (my new favourite thing to do), I saw a beautiful straight line.  It was heading down slightly heading towards the low 4s (70s) so  I pulled out the pump, intending to lower my basal rate at 4am, having seen this trend several nights in a row.

Then I see it: Empty reservoir symbol.

 "Shhhhiiiiiiiiiitttttt!"

Jamie, poor guy, got a slightly rude awakening this morning.

I remembered my calculations from the day before and that I must have been out of insulin for 8, maybe more, whole hours.  I bolted to my kitchen, washed my hands and pulled out my blood test kit, convinced that my precious Dex (Lorraine) had made a mistake.  She was telling me I was 4.9 and fairly steady.

Longest five seconds ever.  

5.2 mmol...

"What?!"

I have no idea how it happened.  My diet has been insanely good recently and I had a seriously busy day on Friday so maybe, just maybe, I was due to have an enormous hypo during the night that didn't happen because of the extra activity and low, low carbs.

I've been over what happened again and again, convincing myself I had more time that I thought, but each time the calculation is correct.  10pm.  I was very, very lucky.  But it has left me thinking: 'why is the alarm on my pump for 'your reservoir will need filling in the next 12 hours', no different to the "holy crap Batman, you're flat out of insulin' alarm, and why is there no escalation of noise/urgency when I don't acknowledge them?

And as this is not the first time this has happened, I'm slowly realising that perhaps this is something I need to look for in a new pump.  I renew in 10 months.

So, what pump do you use, and are the 'out of insulin' alarms different to the 'low reservoir' alarm?

   Type '0'?

Or just a very lucky wally?