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!

INPUT Roadshow heads to Luton!

I can't say how many times I have seen/heard/read people wanting to know more about pumps; how do they feel, what do they look like, how big are they, can I get one?  It's hard to get to everyone at once.  Well, INPUT are starting off the 'getting to everyone' by coming to Luton and are ready for all your questions!  

If you are interested in a pump but don't know whether you qualify, want to have a poke around one first, want to know how to start the process of enquiring about one or just want to ask a question, come along on Saturday and ask any pump related question!

Any questions just let me know and I will endeavour to help out where I can.  I will be there along with members of the INPUT team and a number of the pump companies keep to show off their products.

See you there, everyone!

AP

Uncharted territory - update

A couple of weeks ago I posted about how I was trying to use new areas of my body for my cannula sites, because I am always concerned that one day my poor little sites will have had about all they can take and will become unusable. When I was on MDI (multiple daily injections) I used to use an area on my stomach to inject so often that it ended with lipohypertrophy (say that after 3 glasses of red!). Lipohypertrophy is a thickening of the skin under an injection site which can turn into scar tissue. It does this because the cells response to extended insulin exposure is to grow in mass. Unfortunately for type 1 diabetics or type 2s who use insulin, it means insulin injected into this site also often doesn't disperse properly causing lots of problems with blood sugar control. My problem was that it was totally painless to inject there, so I liked it.


Well, after two weeks of using my stomach for cannula sites I think I must have finally cracked it; apparently the lower stomach (underneath the belly button) causes no problems at all for me. I did have one kinked cannula when I was using a site too close to my hip, meaning when I sat down the insulin was being blocked somehow from getting into my body. But this hasn't happened since I've been using the 'fleshier' part of the stomach. Not that I normally value having 'fleshier' parts, but at least they come in handy.

I guess I have too much - ahem - 'muscle' in other areas; so I will tell my gym instructor, anyway.

Anyway, my advice to anyone who has been using sites as high as the ones often shown in pictures (as below), try using sites a little lower on the stomach. Not that the dude below has any fleshy bits (poser!) but if like me you have an extra inch or 20, why not have a go.  Do it on a day when you can keep a close eye on your bloods, when you are pretty stable (because then you can spot a kinked cannula early) and when you feel like the other sites you use need a break.

Good luck!

Uncharted territory

Site rotation, or moving the cannula around to a new area which has not been used for a while, is a really important part of diabetic management, particularly on an insulin pump.  Why?  Because every time we insert a cannula into the skin for three days to allow for insulin to enter our bodies, we are literally inserting a foreign body into our skin that our immune system will attempt to get rid of.  And it does that through the means of infection and scar tissue.  So kind of my body's immune system to get rid of foreign bodies, which I only have to put there because that very same immune system destroyed all my insulin producing cells.  Thanks for that, body!

Anyway, an infected site looks a little like this:

This photo was swiped from someone else's blog because unlike this rather svelte waistline, I would rather steal than get my wobbles out. But back to the point, it shows what the body can do in just a few short days.  If it were just for some short-lived discomfort, infected cannula sites really wouldn't be that big of a deal.  The problem is in the short term, infected cannula sites cause blood sugar swings, thanks to the body being insulin resistant when an infection is on board.  In the long term, and this is the more worrying for me, the sites become scarred and eventually all but useless for insulin infusion, causing massive problems with management.

Most pancreatically pants people have rules about how long we will use each site; some people go below the maximum of three days while other observe strict rotations, making sure they don't go back to a site for at least two weeks.

In general I only use my arms and 'love handles' (there is a benefit to NOT having a svelte waistline, you know!) because I find these sites the most reliable, the least painful and I have never had a kinked cannula using those sites.  But site rotation is something that does worry me because I want to be able to reap the benefits of insulin pump therapy for years to come.  Unfortunately though, I have never had much luck using my stomach with 6 millimetre, 90 degree insertion (some cannulas come with 45 degree insertion) and when I have used them 9 times out of 10 the cannula kinks at the very beginning, resulting in no insulin getting in and inevitable high sugars.  But I realised yesterday that I have never tried to use the lower part of my stomach.

Why?  No idea.

Challenge?  Count on it!

Today was cannula change day and in true stubborn form, I decided to go into uncharted waters and have a go.

So far things are good; no kinks, no pain and my other sites are grateful of the site rotation.  It is a strange feeling getting used to a new site; almost like the first time I ever wore a cannula.  But other than being acutely aware of where it is, my body seems to have no objection to it, yet.

I will be sure to keep you informed!

Featuring yours truly......!

About a year ago I was bimbling around on the Internet and happened to type into Google, something along the lines of 'Diabetes charities Hampshire', because I really had no idea what there was in my area other than JDRF South. I wasn't expecting to find much, but found myself typing it in anyway.

There had to be more than one diabetes charity, surely?

To my delight I stumbled across a charity based only 15 minutes down the road from me. Small world, ay! They are called the Diabetes Research and Wellness Foundation and despite being a small outfit, they have a big message; Staying well, until a cure is found.

Over the last year I have taken part in their Bootcamp event, have been brought to tears by their message of hope, have done a sponsored walk in their favour and have popped in for several cups of tea with their team. They make a really good cup of tea, FYI.

To my delight, they asked yours truly if I would like to write their tale end news piece for their February newsletter.

Um, would I ever!?!

I chose to write my piece about exercise because that is one of the true keys to success when 'staying well' with the 'betes, so seemed to fit quite nicely with their aims.

Unfortunately they don't have an online version, so I have copied it all down for you below. But check out their website on this link for more info on what they do and if you can, pop in for a cuppa sometime. I'm sure they won't mind......

My name is Anna and I am many things. A daughter, a sister, a wife and a friend. I love to surf and snowboard but can do neither whilst standing up. I love Autumn, Cornwall, black and white photography and animals. I am also a type 1 diabetic, juvenile onset, insulin dependent - the beast has many names. Diagnosed at the age of four, I must have been through every stage of acceptance in the book; I was the child who couldn't understand it, the teenager who fought against it, the young adult who reluctantly accepted it into her life and am now fully fledged (but still very young at heart!) adult who manages to negotiate each day with reasonable success.

For many years I struggled to achieve anything which looked like even basic control. In fact for me, 'stable' was a place you kept a horse, not something you could expect from diabetes. So after fighting against it for far longer than I care to remember, I finally took up the suggestion my team at Queen Alexandra Hospital in Portsmouth made, of trying an insulin pump. Even though the pump is still something which is only available on the NHS for type 1s who meet certain criteria, going onto a pump came with a wealth of information about carbohydrate counting, exercise and cutting yourself some slack when things go a bit 'wonky'. All of which can make a difference without ever having a pump.

Perhaps the biggest realisation for me was about the benefits of exercise. Having avoided it for many years and using excuses like 'my control just isn't reliable enough', starting exercising on a regular basis was one of the turning points in my diabetic control. I started going for walks in the country or strolling to and from work every day, all the while noticing my insulin requirements dropping almost by the day. I found that whilst cycling and for several hours afterwards, I needed only 10 per cent of the insulin I normally need in order to keep my sugars in range. I found that yoga brought my sugars down nicely every time and even my 10-minute cycle to and from work has my sugars in check by breakfast.

Earlier this year a friend even convinced me to try 'Body Combat'. Whatever you are thinking about how intense it sounds trust me, it's tougher! Imagine being with 50 other people while high octane music blares out and an instructor who apparently has limitless energy shouts through a microphone,while you attempt to mimic them (and fail drastically), all the while using moves from martial arts and - if you do it like me - 90s rave. Now also imagine that this exercise propels your fitness, energy levels, self confidence and general well-being faster forward than anything else you've tried.

So what is the key to exercising? As I found out, it is to treat it like an experiment. When trying a new exercise try to eat similar foods before and after and do it at the same time of day. Take a little carbohydrate (like a banana) before exercise to give your body a little boost, even if you need to inject for it. Be confident and don't write it off after the first attempt. It took me weeks of body combat to discover exactly the right formula and now I am at the front panting away, enjoying every minute and reaping the blood glucose benefits.

The message I want to get across is that it doesn't matter what form of exercise you do whether it is team games, high intensity cardio, a gentle stroll or even stretching; moving your body in any way allows your body to use the insulin you either put in or still produce yourself much more effectively.

And frankly, it makes you feel top notch!