Monday 24 October 2011

The patient perspective

So a couple of weeks ago I was contacted by someone doing some research into diabetes products who was keen to pick the brains of us opinionated blogger-type folk. As I prepared for my over-the-phone grilling, it got me thinking about how much of a business this diabetes lark really is. Not that I hadn't already picked up on the whole big business vibe, what with CGM in its current form costing anything up to £200 per month to fund for those of us who haven't been able to put forward a successful bid for funding through the 'National Health Service'. Even the humble insulin pump is not yet available to all. In fact, in some places you still can't get an insulin pump if your Consultant or 'specialist' happens to think they are just a fancy gizmo. To find out a little more about insulin pumps and whether you may be eligible for one, check out INPUT's pages.

An equally pancreatically defective friend of mine and fellow blogger over on Shoot Up or Put Up once said that she was happy for diabetes to be big business, because all the time the 'Big Pharma' companies are striving to improve their products or come up with better ones to the last great idea, us diabetics are only set to benefit. In terms of quality of products, anyway. Unfortunately access to them remains a bit of a lottery. Granted, in some areas (such as CGM) it can still be difficult to actually access the products thanks to the hefty price tag, but that is the way the world works in many areas, not just diabetes. In terms of quality the ideas, improvements and developments seem to literally evolve day-by-day.

Unfortunately I can't talk about the topics we covered here for obvious reasons, but it was a great reminder of the development and progress that diabetes research is constantly undergoing. And with that development comes improved products, services and patient experiences. It is always refreshing to be consulted on my perspectives as a diabetic patient and user of (and payer for!) various products which improve the lives of those working hard to manage this condition. To be asked what I think, what I would use, what I wouldn't and where I see the future going, is a good reminder that the patient is at the heart of research more than ever.

At the end of the day it is us, the diabetics and users of these products, that keep these companies in business and urge them to strive for more. When it comes to our health we are demanding - and rightfully so. And if a product comes out which doesn't quite cut it, we will let them know. If a great one comes out, we will use it. This, is the challenge.

Anna - very excited about our future.

Friday 14 October 2011

Getting back on track

Thanks to having a solid month off any decent exercise along with a diet similar to that of Morgan Spurlock in 'Supersize Me', I have needless to say been having some issues getting my blood sugars back into reasonable control. We all need a break from the daily gauntlet that is diabetes and I for one am very much in favour of cutting yourself some slack and remembering just how much living with a chronic illness deserves some well deserved rest now and then. However, a 'break' as far as I'm concerned is a day here or weekend there. A month, is not.

Having a month off changes everything. And boy do I know it! Yesterday I decided to bite the exercise bullet and head back to Body Combat. Whatever you are thinking about the name and how intense it sounds trust me, it's worse! Imagine standing in a room with 50 other people while high octane music blares out and an instructor who apparently has no limit to their boundless energy shouts through a microphone, while you attempt to mimic them (and fail drastically) while doing moves from mai Thai, karate, Thai chi, kickboxing and if you do it like me, 90's rave. Now also imagine that this exercise propels your fitness, energy levels, self-confidence, endorphine-crazed laughter and general well-being faster forward than anything else you've tried.

As a diabetic one of the challenges we face is keeping all those trillions of nerve endings alive and (literally) kicking. One of the ways to do this, is exercise. It gives you much better control long term, increases sensitivity to insulin meaning much less is needed, it helps manage weight, it encourages the heart and blood to get pumping and makes you feel wonderful.

Yesterday however, I did not feel wonderful. In fact I felt a little as though (despite it being non-contact) I'd been karate slapped in the face by the entire Olympic martial arts team. I was puffing like a haggard old smoker, sweating like I was smuggling drugs into Thailand and being taken for my frisking and was about as red as Bill Clinton when Miss L went public.

I'm sure my 6 inch meatball sub three hours before with extra south-west sauce (omnomnom) didn't help, but needless to say I learnt my lesson!

My body needs a rest. Not from diabetes, from me and my month off! A day here or there is OK; a month is not.

So today was soya yoghurt with nuts for breakfast and home made veggie soup for lunch. I've had a litre of water already and planning on making a habit of it.

Wagon, you and I must get re-acquainted. STAT!

Tuesday 11 October 2011

In your time of need

It is no secret that with the run up to the wedding all things diabetes fell by the wayside. It wasn't so much falling off my wagon as being well and truly run over by it! I carried on regardless, as we do, but only did the bare minimum just to get by. The problem is all the time I pay less attention the more blood sugar control - and subsequently the way I feel - starts to dwindle. And so the circle begins; you try less hard so the control begins to waiver, you get bad results so you test less, because you don't want to deal with the numbers. The less I test, the less I want to test. And so it continues. I think they call this, 'burn-out'. It is at times like these that I start to spend less time on the blog, less time thinking about diabetes and less time finding things I want to write about.

With a spare evening on my hands I decided to sit down and try to find something to write about. I read over some of my old posts, remembering how I felt when I wrote them down and seeing if that helped spring my mind into action. Alas, not.

So I decided to look over the comments section, just to see if anyone had stopped by and if so, whether they found my ramblings of any use. Turns out, this was all I needed to remember exactly why this is one of my favourite places to be. It can be easy to forget that people actually read this stuff, because to me it is just stuff I write down on a page. My thoughts and experiences. It can be easy to forget that most of the time we are thinking about diabetes together. We are laughing at it together. We are living it together. Just that we are, together.

Thank you to all those people who have stopped by recently. Because it turns out that while I was ignoring the blog and getting on with everything except diabetes, you were reading it and leaving me comments that remind me why I began this in the first place; because of my diabetes.

Despite my recent burying of head in sand, I don't find it hard to admit that diabetes has brought me a few good things; the odd funny hypo story, a fantastic excuse for why I'm being a grumpy old mare, a wicked sense of humour which enjoys a good security frisk at the airport only to see the look on the face of my frisker as they step back and eye me up and of course the best of all, the odd occasion when I am allowed to stuff my face and it happens to be the day my workmate has brought in her chocolate orange malteser cake (omnomnom). But the best thing by far is the people also doing daily battle with diabetes. Because even when I am ignoring the 'betes as much as possible, the people with whom I share so much are still around. As much as I sometimes wish the diabetes wasn't, I'm glad the people are.

Thanks for stopping by and thanks for leaving your thoughts. It was a hell of a welcome back!


Monday 3 October 2011

On the back-burner

There are few things which could drag me away from my beloved blog mainly due to the fact I love talking all things diabetes. I started this blog because I quite literally ran out of places to leave my diabetic thoughts and this felt like a good place to come, somewhere I could pour out those thoughts and it didn't matter what I said or who was listening. That said, you may have noticed a drop-off recently in the amount of time I've been spending on here and the number of posts I've left.

There is no denying that there was one clear reason which can be summed up in one word; wedding.

Yes that's right last weekend my fiance and I tied the knot, got hitched, took the plunge, exchanged shackles or any of the other old cliched sayings you may prefer. Now, while I know that writing a blog invites people into your world and often others like to join in with both the high (and often low) points in your life because frankly that's why we do things like write/read blogs - to share, I was desperate to avoid the blog about diabetes being hi-jacked by its own author and turned into a blog about weddings/diets/flowers/song choice or so on as I have all too often seen others do. Equally I have had very little time on my hands thanks to any of the aforementioned tasks.

The day was wonderful and everything went off without any hitches other than the intended. But it struck me that even on my wedding day when I should have a million distractions from the blog, I still found diabetic related thoughts, topics and sentences creeping into in my mind.

When I first discovered blogs and one in particular, I remember finding a post all about how to adapt your wedding dress to cater for your pump. The ingenuity with which us diabetics incorporate insulin pumps into their wardrobes never fails to impress me; stitched into wedding dress skirts, attached in little pouches to waistbands or in garters, pockets made in the skirt, tucked into corsets. If the word 'adapt' came with an 'example of' section in the dictionary, these would be in there.

Having been engaged for two years, I had plenty of time to think long and hard about what to do with my pump on my wedding day and considered a number of options, many of which are listed above. But in the end I reached a decision on how I wanted to wear my own pump which I was perfectly happy with. That way was not at all. I know it may seem controversial or ungrateful, but for me I wanted the freedom on my wedding day of not having to carry a remote with me. I didn't want it tucked into my giant Bridget Jones pants or stuffed down my bra. A pocket would have been a good option, but knowing how tipsy I was planning to be (and successfully got to, thank you very much), I simply wanted to be 'free' of it for just one day.

There are many times when I have had to prioritise my diabetes over my wants; when the cakes get passed around at work and I really want a second (and yes, I did have a first!), when I want to just chill on the sofa but know that exercise is a better option, when I really want an alcopop to drink but know that something with diet coke is better on the body.

So on our wedding day I whacked in some long acting insulin in the morning, unhooked my pump as the ceremony approached and simply forgot about it. During the day my blood sugars did rise and having to nip off for injections was a bit of a pain and reminded me how much I don't miss the little buggers. In the end I was glad to put my little robot friend back on again but for me, being able to just take it off and prioritise our wedding and not the diabetes, was the right decision. This post would probably gain more recognition if I talked about what inventive system for through-the-dress-bolusing I had come up with, but this blog was always about honesty.

So honestly, for just one day, I relaxed, went a bit old-school, put diabetes on the back-burner and got on with something else, for a lovely change.

So here it is, the one wedding blog I will subject you to. It's diabetes from here all out.

Off the pump for 6 hours and blissfully fine with it.