Who lives in a house like this?

It’s quite hard to spot a diabetic. We’re a varied breed, not easily definable by external appearance. We come in all shapes and sizes, and most of us don’t even have the added Borg like qualities of a pump to mark us out from a crowd. But what about our houses? I suspect a wander round my house reveals more about my pancreas than if you met me in person.

Let’s go through the keyhole…

We start off in the kitchen where there is the usual mixture of food. Relatively healthy, plenty of fresh fruit and veg, but a noticable lack of fruit juice because it is the food of the devil, causing rocketing blood sugars out of all proportion to the enjoyment of a glass of fresh orange. Nothing remarkable here. But wait, in the cupboard next to the cooker is hidden something that seems to clash with the otherwise normal, balanced approach. There’s a secret stash. A collection of 28 tubes of Fruit Pastilles purchased when they were on special offer. Would you find that many Fruit Pastilles in a normal house?

Diabetes seems to be the domain of the upstairs more than the downstairs of the house. We head up to the bathroom and a quick snoop round the cupboards reveals a couple of urine test pots that I’ve obviously forgotten to fill and take to clinic with me at some point. Plus a bottle of ketone test strips. As they’re 8 years out of date, I’m guessing they must be there for sentimental rather than practical reasons.

The study is where the paperwork side of diabetes comes to life. A repeat prescription request form pinned to the notice board. My clinic appointment letter sits in my diabetes file along with a spare blood test form from 3 years ago that I didn’t use. You never know when it might come in handy I suppose. There’s also a tatty post it note with my blood pressure and cholesterol targets scrawled on it, because I got sick of googling what they should be every time I had a pointless conversation with a Dr’s receptionist who’d tell me they were fine, I’d ask for the numbers and then realise I couldn’t remember what the acceptable range was.

Even the computer isn’t unscathed. The file imaginatively named  “Diabetes” contains info I downloaded about pumps and CGM when I was researching them and spread sheets tracking my HbA1c since starting on the pump. Then of course there’s a huge folder called “ShootUp” which is probably the most interesting of the lot! And even my Outlook that I use for work has a diabetes category where clinic appointments, toe tickles, eye tests and the like are all flagged in blue.

There’s also a dusty looking cable, lying sadly on the corner of the desk. This is the gizmo I plug into my PC to allow my pump to talk to it and download all my CGM data. Judging by the thickness of the dust I don’t think I’ve used this in about 3 years. I hang my head in shame, downloading data has really never been my thing. Perhaps I should put that cable in a drawer.

And finally we arrive at the heart of the diabetic house…the bedroom. My side of the bed is identifiable by the occasional blood spot on the sheets where my finger lick hasn’t quite stopped the bleeding from my bedtime blood test which is always carried out in bed. You can also spot my side because under the bed, within easy grabbing distance, are 20 snack sized boxes of apple juice, purchased on special offer. And sitting on my bedside table are a packet of Fruit Pastilles and my meter. Under the bed is a veritable diabetes fest. Alongside the hypo stocks are two boxes containing all my spare infusion sets, reservoirs, batteries and sensors. The rest of the diabetes junk lives on a shelf in the wardrobe. Apart from the results of my latest prescription which can often be found languishing on top of a cupboard, waiting to be tidied away to their homes.

So, who lives in a house like this? A Fruit Pastille gobbling, infusion set hoarding,  bulk buying, IT literate, data-download hater. Otherwise known as Alison. In a line up of houses and people, it seems you could probably spot the diabetic house before the diabetic person. Who’d have thought it?

Time travel and lantus

The more avid and fanatical readers of this lovely blog will have noticed I’ve been away for the last few weeks. I was holidaying with my wife Katie in the marvellous United States of America, which as the more observant will have noted is on a different continent to the one I live in.

Sadly perhaps, modern science tells us that the world is not a flat plane supported by giant mystical elephants but is instead a boring old oblate spheroid. Bah – modern science may have given us insulin but I’d really rather think of the earth as being propped up by the whole giant elephant thing – seriously, how cool would that be? Though I wouldn’t want to be chap that had to deal with their, uhm, droppings.

Anyway, because of this whole oblate spheroid malarkey (what the hell is a oblate spheroid I wonder?) we have yet another thing to torment the honest diabetic – the time zone.

Designed to ensure half the world doesn’t remain in perpetual darkness while the other basks in sunlight during office hours, the time zone can be a real pain in the arse to the travelling diabetic if you use long-acting insulins like lantus.

I tend to put in my lantus at about 7.30pm evening – usually just before I get stuck into the trough of my evening meal and I rarely, if ever, miss it by more than an hour. Like most diabetics who have been lumbered with the pissing evile for more than a year or so, I hardly ever think about it as my internal diabetic-guardian alerts me it’s lantus time; just like my internal plaque-sentinel reminds me to clean my tusks each evening and morning.

Before I went to the USA I asked my diabetic registrar what I should do with the lantus. She sensibly and logically suggested I just keep shoving it in at UK time each day. So in New York I would bung it in at 2.30 (otherwise known as Chinese dentist time (tooth-hurty – geddit! Ha ha ha ha! Sigh…)) and in St Louis at 1.30.

Simple in theory, but surprisingly difficult in practise. It seems my diabetic-guardian remained permanently jet-lagged throughout and refused to remind me that it was lantus time and I therefore was late with quite a few injections, with my wife suddenly remembering three hours later – “shit! Have you done your lantus?” (my wife never swears of course – this is dramatic licence carefully added to this post to increase the thrill factor).

In actual fact, I didn’t really notice any wildly awful effects of such differing injection times, so maybe it didn’t matter all that much after all. But if anyone has any handy time-zone tips let us all know in the box below. And, yes, I know you pump people don’t have these problems.

Oh, finally, you’ll all be thrilled to hear that my internal plaque-sentinel kept my right with the whole oral-hygiene thing throughout.

A real life diabetes researcher speaks

Theresa Ikegwuonu is a PhD Research Student at the NMAHP Research Unit of the University of Stirling (The Sunday Times Scottish University of the Year, don’t you know!) who is currently running a study into people’s experiences of having hypos and the impact hypos have on their everyday life. Theresa contacted your soaraway Shoot Up to appeal for volunteers for her study but we forced her to do an interview instead.

So Theresa, give us your Dragon’s Den-style pitch for your current research? What’s it all about?

It is really about finding out people’s views of living with diabetes and their experiences of having hypos (rather than the views of health professionals, so to say, you are in charge).

I’m trying to find out about those aspects of people’s lives hypos can impact upon. From work and employment to things like social life, participating in leisure activities and/or even driving.

If you think about the everyday life of people living with diabetes, what ‘strategies’ do they use to deal with hypos, manage their diabetes, and so on.

The really interesting bit is that I am looking at this over a few months to (hopefully) gain some insights into people’s coping strategies and their views of diabetes.

That all sounds very interesting, but what does it all mean to the diabetic in the street?

Well, at this stage, it is just a chance for people to get involved and to tell me about their personal experiences with diabetes and hypos. In the longer term, my research will hopefully contribute to improvements in health care. Also give new insights and a better understanding of what it really means to live with diabetes.

So what attracted you to diabetes research?

My academic background is actually in social work/public health, so this very much focuses around ‘normal’ people, how they go about their everyday life, how I can support them. With diabetes research in particular, it is about long term conditions and how people manage to live with it every day. I don’t have diabetes myself, but I have close family members who do. It is always important to me, that I can personally relate to the area of research I work in.

What do you think are the most important areas of diabetic research today?

Any research that is relevant to people who actually live with diabetes, research that can lead to improvements in health care, research that ‘makes sense’.

Which is more important – a cure or improving everyday quality of life?

As much as it would be fantastic to find a cure, I believe that improving everyday quality of life should be priority. Things like positive coping strategies that help people enjoy their lives can make a big difference. If you live with a chronic condition, you know it can be anything but fun. So supporting people to meet challenges that they face in their everyday life would be key.

Do you think diabetes research can be a little rarefied, having little effect on diabetic’s everyday lives?

If you look at how much diabetes treatment has improved in the last 20 years, e.g. availability of insulin pumps, flexible insulin therapy, precise measurement of blood sugar with modern medical devices; the fact that there are many options to suit different lifestyles, and the amount of information available about diabetes all highlight the important role research plays in advancing diabetes management, and thereby improving people’s everyday quality of life.

Have you carried out any research on yourself? Such as inducing hypos, etc. If so, did you enjoy it?

No, I haven’t. Generally the researcher cannot be participant at the same time; there would be some conflict of interest. I have not tried inducing a hypo on myself, but I’m sure I would be terrible at managing it!

How can we help with your research?

I am looking for volunteers who would be happy to chat to me about their experiences of living with diabetes and having hypos. Participation would involve one interview, keeping a brief hypo diary for a couple of months, and staying in touch with me during the diary time (via phone and email). I especially need male volunteers, as so far the girls have been quicker to respond! Your help would be greatly appreciated – please do contact me at ti1@stir.ac.uk

Comatose and rotting toes – the lighter side of insulin dependency