Unconventional cock-ups

There is a very good reason the insulin pump comes with a low reservoir warning alarm; we need insulin.  It's kind of the point of an insulin pump.  Without it, us pancreatically defective people have a time limit, and a pretty short one at that.  The low-reservoir alarm is our lifeline to making sure the pump is never out of insulin.  But when your pump is alarming for hours upon hours and - like me - you don't want to change the reservoir early wasting what insulin is left, you can lose track of the dwindling units. 

Last night I managed to go to bed without having stocked up on insulin (I blame the wine) and must have run out somewhere between 8mmol (11pm) and 17mmol (4.45am).  So my super-sleuth skills tell me, anyway.

In my fuzzy haze of high BGs I managed to change the reservoir, find a comfy spot in the bed again and return to the land of nod.

But today my slightly unconventional method of basal-testing (checking your background insulin dose is correct) has revealed that I have in fact been having a series of overnight hypos.  How do I know this?  For the last couple of weeks I have been having sugars of 15/16mmol during the day with no explanation of why.  I had put it down to my body not agreeing with the oh-so luxurious lunch of Ryvita and Cottage Cheese (hell on a plate) I have been adopting as a low-carb higher-protein lunch, but today I have barely strayed from 6mmol.  The only difference, tellingly, is the guaranteed lack of hypo.

I wouldn't suggest that attempting to go it alone without insulin (which works out less than unsuccessfully the rest of the time) is the way to carry out some decent hypo-testing, but in a backward and very unconventional way it has sorted out my little predicament.

It has also proven that I am most definitely and unequivocally, still a diabetic  :)

Flashbacks

When you are a person with diabetes - particularly one who talks like an AK47, mostly about diabetes -  it's pretty normal to run into a few questions here and there:


'How do you control it?' 'When were you diagnosed?' Or, everyone's personal favourite, 'Are you allowed that?' Most of us in the diabetic community, online or otherwise, have the answers which have stood the test of time in a special 'diabetic FAQ' file in our heads.

"I use an insulin pump". "25 years ago when I was four." and "Yes I freakin' well am!"

But this weekend was different. As I boarded my train to the Input Insulin Pump roadshow, my best friend called me.

"Anna, what do I do if a friend who stayed at my house last night just told me they are diabetic, but don't have their testing kit or insulin?"

What?!

As I unravelled the story and discovered that despite my friends attempts to get to a pharmacy to buy some hypodermics, some insulin and a testing kit, her sofa-surfing stowaway was protesting that he was 'just fine'. Of course, having been without any insulin for about 16 hours, and having been drinking the night before the chances he really was fine, were slim.

"He reminds me of you when you were 17."

Of course, I never skipped insulin and I would always tell people I was diabetic, but despite my initial shrugging off that we were anything alike, a flood of feelings came rolling in that left me thinking about this guy, how he felt and why he didn't tell my friend about his condition.

I hated diabetes too. I didnt want to be different, either.

Maybe we were alike. Maybe I was like that.

It's very easy to shake heads and wag fingers at people who do this kind of stuff. How can they? Why would they? But it left me thinking about my own journey. From somewhere on that wavelength, where blood tests were a pain in the backside and injecting was something that separated me from others -  a burden, a punishment - to a place where insulin pumps bring us together and our story is something to share; something that unites us.

My friend knows that just as soon as he is ready, she can give him my number. I will always talk. I will always listen. And when everyone is wagging their finger and playing the blame game, I will remind them that I too walked that path; mine was littered with fear, contempt, anger and isolation.

My pump, and the subsequent introduction to a diabetic community millions strong, brought about my eventual acceptance of the life I would lead and heartfelt gratitude for what you all would bring me.

I hope he too finds that way. Be it now, or tomorrow.

It is never too late.

'InPuT' Roadshows head to Chester!

Well it's that time again; the time for InPuT (the UK's INsulin PUmp Therapy advocacy service) to head out onto the streets and hit your local town to tell you about who can have access to a pump and how to get the ball rolling.  The Luton Roadshow was a resounding success and we've had some fantastic feedback from people who came along. If we can continue increasing the number of people who get to the exhibition, I am hoping there will be dozens more pumps on order by the end of the year - so you should prepare yourself, Mr NHS.

This time, it is the turn of Chester to kindly play host to the InPuT team and we will be coming along to MacDonald New Blossoms Hotel, St John Street, Chester, CH1 1HL between 1pm and 4.30pm with a wonderful bunch of insulin pump companies.  So we invite you to come along and have a good look at some of the pumps on offer in this part of the world, ask questions of those who wear them and get advice on whether or not you can get funding for one.

Here is the poster with full details!

The InPuT team look forward to seeing you there!

'Special' shoes

As you get older things you once would never have considered suddenly begin to seem to be a good idea.  Like, growing your own veg or just having one night out this weekend; getting a smaller TV package to reduce the bill or putting money away for a rainy day.  This year, I began to consider - shudder - 'special shoes'.

Ten years ago I considered this sort of thing for people who had one leg significantly longer than the other and needed something to help them walk better.  Or perhaps for people who have conditions meaning they fall over if their shoes don't have weights in.  This was not something for me. I was way too 'cool' for that.

A few years on with some wisdom in the bank and at my ripe old age of 28 years and 18 months, things have begun to change. Gone are the days when I could wear heels so high I had to be drunk just to stand in them.  Countless times after eventful nights clubbing I would wake up with toes  completely numb thanks to being 'squished' (the only appropriate word) into your shoes for the inexplicable purpose of 'being fashionable'.

Nowadays, after having done my time in the 5 inch heels and matching blisters and having realised that those blisters really weren't worth it, I am beginning to realise the value and importance - for a diabetic - of wearing shoes which actually fit!

Don't get me wrong, my shoes don't look like this:

But I have started to wear shoes described as 'wide fit' which offer decent support and are properly measured. Why?  Because it is a very easy way to give your feet a helping hand - or, foot maybe - towards staying healthy.  My work shoes are now a cute pair of Clark's black ballet pumps with a small 1/2 inch heel and air circulation. Low and behold, they are like a pair of slippers compared to my former cheaper pair!

It's worth pointing out that with 'good' control and at the age of 28 and 18 months, there shouldn't be any reason I should be panicking just yet.  But you have no doubt seen the 'Putting Feet First' campaign that Diabetes UK are running.  The facts and figures about "100 people per week have a limb amputated due to diabetes" and the constant reminder that diabetics are disproportionately represented in the amputation stats countrywide, means I may as well take the easy route to good care wherever I can.  That means checking my feet after drunkenly danced barefoot, wearing decent shoes most of the time and taking care of any hard skin which could disguise a foot ulcer.

Not only am I a lot more comfortable most of the time, but I also now have the benefit of being able to giggle to myself at all those people teetering around in shoes far too high for them with the unmistakable, 'I'm walking downhill' motion about them.  Sexy?  ....Not really!  I'll stick to my 'special shoes' thanks all the same.

Anna (currently oh, so comfy)

Shards of glass and chocolate roses

This weekend saw the wedding of two of my closest friends so Jamie and I hot-footed it to Birmnigham ready to celebrate. Thanks to being amongst friends when diabetes came up - which it inevitably does when the pump is produced from various pockets and nooks and crannies - the conversation started to flow and for once, the eyes didn't glaze over. People were actually interested.


While chatting about it one friend commented how difficult it must be to negotiate a day like this.

"Naaaaaah" I confidently stated, "It's nothing. As long as I test regularly and think about what I'm drinking, it's only the same as everyone else's night, really."

But there it is; I test regularly and think about what I'm drinking. For me, that's normal. Necessary. For everyone else, it's a hassle. So it got me thinking about how differently I really do act. Just how much extra does it take? Well I thought I would write it all down so you can see for yourself. So here it is:

3pm - The wedding is about to kick off so naturally (for me) a test is in order. 12mmol. Drat; a touch on the high side. Thanks to the drinking plans, I need to sort that out. A small correction (extra insulin) later and I'm back on track. It's just a diet coke for me, at the moment. The ceremony takes place. We smile, we well up, we hear readings from our own wedding, we remember.

4pm - The drinking has started, I still feel a little 'wonky', time for another test. 11.3mmol. Ok so I haven't gone down much, but I'm now drinking Gin and Tonic and I haven't gone up. I'll take that, in this instance. We continue to drink.

7pm - Time for the food - better test again. 9.2mmol. Fab, G and Ts obviously agree with diabetes, I better swap to doubles on hearing this excellent news. We continue to drink.

9pm - Dinner was delicious, but thanks to the guest next to me not wanting their cheesecake desert, I am two deserts up and wondering what that means for the blood sugars. 10.3mmol. Well, after 2 deserts, several double gins and a fair bit of emotion, I am pretty happy with 10. We continue to drink.

11pm - I don't test (I am far to busy dancing), but I have discovered that the hearts on that wedding cake are actually made of white chocolate. I eat them. Most of them. I continue to drink.

12.30am - Well, the lack of tests over the last 3 hours no doubt evidences the fact that I am trollied. I am dancing barefoot and can feel the shards of glass from broken drinks flying past my feet. My sugars are 12.2. I don’t even care. It's a final double for me, please Mr Bartender.

1.30am - I am back at the hotel. Despite being very drunk I wash my black, grub-covered feet which are all danced out, so Jamie can check them for damage from shards of glass. They are fine. We stop drinking.

At 2am the night is over. My blood sugars are 8mmol. I give myself a temporary 80% basal overnight, I chow down on a banana and I keel into bed.

So what's the verdict? Is it a pain? Does it change my night? My answer is this:

Yes, we have to make adjustments.

No, a diabetic dancing barefoot is not a good idea.

Yes, I have to blood test more regularly.

But I challenge you to find anyone there who had more fun than I did (bar the bride and groom, hopefully). Congratulations to my wonderful friends Emma and Matt. Your wedding was a gem.

Anna (still dancing barefoot and enjoying every beat)

Thanks for the good times, Mr Clip

'They' always say you don't know what you've got 'til its gone. Well, this week saw the sad demise of my insulin pump clip.

We had some good times. Like when you used to hide on me, making me where a horrendous 'carry-all' bra to bed. Sometimes during exercise classes you'd lose your grip and send Lord Pumpington flying in the direction of an unsuspecting fellow gym-er. How we laughed.

It seems two and a half years was your life-span, and not a day over.

For now, I have to revert to the horrendous bra, and thank the gods I discovered running trousers with a zip-up pocket, just big enough to cater for the pump. It's not as fun as wild gym-flinging, but it makes for an easier ride.

As much as I will miss you, I had to move on; so your replacement is on the way.

Good times, 'old' friend.

InPuT Luton roadshow - a resounding success!

There aren't many things I would give up my Saturday for.  This is my day. In fact, come cricket season I usually relish the days when the husband heads off to a game and I can grab a few hours to myself to batten down the hatches, get some 'me time' and watch a bunch of really girly crap on TV, like 'Road Wars' and 'Police, Camera, Action'.  Tomboy alert!

Well this Saturday was InPuT's first 2012 Roadshow which, as someone who is an avid supporter  of InPuT, I volunteered to help out at.  The brainchild of Lesley Jordan, the roadshows are a way of getting the word out about InPuT, insulin pumps and NHS funding.  Areas were chosen by looking at where in the UK insulin pump uptake was at its lowest and Luton (the lowest in the UK) was an obvious choice as our starting point.  Having had no way of estimating numbers and no idea how many people would want to come along (or even whether anyone had successfully received a leaflet or seen our media build up), I have it on good authority that the whole InPuT team were suffering synchronised insomnia at 3 am, worrying about an empty room filled with some not-so-impressed medical reps, wondering what they could have been doing instead of this, and a rapidly cooling pot of coffee to cater for 40, being slowly chipped away at by the humble three-strong InPuT team! My concerns began to ease however, when the first arrivals showed up 30 minutes before we even had the coffee at the ready.  By mid way through, we had over 20 attendees.

For someone like myself, an extrovert with a penchant for talking about anything diabetes related, chatting to such a wide variety of people was as insightful as it was at times frightening: "My hypos aren't debilitating, but I am too scared to drive any longer".  "My son isn't allowed one as his HbA1c is too high."  I'm not sure if it is poor education on the part of the professionals wreaking havoc in the Luton hospitals or whether the PCTs just don't want to 'give it up', but within an hour I had spoken to 4 different groups, three of whom had a type 1 diabetic with them who by my count, should already be on a pump.  There were conversations with those who would be at a squeeze to fit the criteria (HbA1c consistently over 8.5% or debilitating hypos) and those who have been fitting it for years.  There were children, couples, older people and a family with three generations of it (who I immediately fell in love with when the mother  described them as "a group of five; 3 diabetics and 2 normals").  I had the chance to demonstrate my own pump, put minds at ease that you can't feel the cannula, that you don't have carry it around in a custom made rucksack and that for a girl, your boobs come very much in handy! 

We had superb attendance from the pump companies too, which I feel only served to strengthen the motivation to push for a pump.  Although InPuT will clearly never endorse one pump over another, the unique selling points of all the pumps on offer were out in force.  Medtronic were there with the low-glucose suspend and integrated CGM capability.  Accu-check were there with the Combo pump, a snazzy remote control enabled pump with integrated bolus calculator (no need to rummage through the clothing with this one).   Cellnovo (not-yet-available sexy patch/micro pump) were there showing off their 'smart-phone like' technology.  Animas came with their waterproof pump (hello to the surfers, swimmers and watersports types) and soon-to-be integrated Dexcom CGM.  Advanced Therapeutics (the folks who brighten our drizzly shores with the Dexcom 7+) were also there showing support and I took the opportunity to finally meet the director, someone who had been on the diabetes circuit for decades and is a true time-tested expert in the field.

After three and a half hours of talking away, we had just shy of 40 people come along, of which we estimate 21 people had type 1 diabetes. I would suggest that two thirds of those people at least, should already be funded for a pump. People generally seemed to stay for at least an hour thanks to the wealth of information they could soak up from the reps.  The coffee pot most certainly ran dry.

There were a few laughs as two thirds of the InPuT team near on cleared the Medtronic stand of their Mio's (cannulas complete with disposable inserter) after two failed cannulas of our own (what are the odds?!).  And thanks to me having avoided caffeine for a week and drinking copious cups in my nervous excitement, I was twitching all the way home (and into the early hours).

All in all the day was a GREAT success and certainly something I am prepared to give up my precious Saturdays for.  If those 21 diabetics don't have success (which would surprise me considering InPuT will continue to support them through their applications and offer advice and guidance where we can), the pressure those newly motivated people will put on their diabetes teams will undoubtedly go some distance to changing the attitudes of the professionals and people holding onto all the power.

The power is ours.

Next up, we are coming to you, Chester!

And FYI Anna, find a photo pose which disguises chin-zilla!