Tuesday 13 December 2011

Don't admit defeat, just change your attack

I've never been one for bottles of pills and potions to overcome illness. I don't believe in cough medicine. If I have a headache I drink a glass of water first and reach for the paracetamol later. When I do buy medicines, they often expire before I got a chance to develop that illness for a second time. I believe as much as I can in natural remedies. That being said, I don't reject drugs all together. That probably seems pretty obvious seeing as to survive I rely entirely on a synthetic vesion of the hormone insulin, which I pump into my own body through necessity more than choice, 24/7. I know that without it, I would only have a couple of days to live. But where ever possible, I like to avoid being on any drugs or medications and try to do what I can myself.

So when I was told at the beginning of this year that my cholesterol was just a touch higher than the doctors would like it and recognising that as someone who has put on a few pounds in the years since University, I decided to try and get that level down myself. I fully recognise that I do not have a genetic predisposition to have high cholesterol. I never had it before and in 25 years of diabetes, I was never at risk of it until I got a little *cough* 'cuddlier'. So when being threatened with taking a pill daily for the rest of my life, my first line of attack had to be my diet and exercise. You see I'd love to say I put on weight because I do loads of exercise and am in fact the size of a small rugby player because of my sheer muscle, but the truth is that while I try to embrace the natural natural, I also love Subway. And MacDonald's breakfast. And chocolate, the processed kind. And Subway. And cheese. And did I mention Subway?

So over the last 10 months I lost about 20 lbs, started doing body combat 1-2 times a week, cycling to work and doing cardio DVDs at home. I have tried to change my diet and generally follow a lower carb way of life (although I disagree very vehemently with ultra low carb). I do still have brown rice, potatoes now and then and the occasional slice of chilli bread (omnomnom). Low and behold as my weight and diet improved, so did my cholesterol. Markedly in fact. And I figured I was finally in the clear from the threat of high cholesterol.

That was until my most recent eye exam.

As I sat with the eye doctor I gave her a little run down of my last results as usual; HbA1c of 7%, BP is 90/120, cholesterol is a little high but I am addressing this etc etc.

As she navigated her way around my retina with her painfully bright light which we are supposed to look at, sitting at a distance which in any other situation would be totally inappropriate and bordering on lapdancing, I couldn't help asking her how things were going.

She commented that there was a lot more going on in my right eye than my left, which I was fully expecting. I have had background retinopathy for some time, which is the weakening and dying of veins and capillaries at the back of the eye caused by high blood sugars, which leads to tiny breaks and bleeds (haemorraghes) on the retina. When new veins attempt to grow in order to counteract this, they too will break and bleed. They can eventually lead to blindess but before it does there is huge amounts you can do to stop or at the very least, seriosuly delay it. With the pump and some major work I had managed to get this to a plateau. Things were getting all that much better, but they also weren't getting worse. So imagine my surprise when I asked if there was anything I should be aware of or concerned about:

"Nope. There is evidence of high cholesterol but I would expect that from what you have said."

Ermmm, what? Cholesterol damage in my eyes?? When was that part of the deal?

Call me ignorant, but little did I know that cholesterol has a significant impact on the eyes. I thought the high blood sugars and dying vessels was it. But if that wasn't enough, it turns out that cholesterol plays an enormous role here too. Perhaps this should be obvious seeing as cholesterol causes the blockages to veins and arteries and predominantly sight problems experienced by diabetics are related to vein/capillary deterioration/blockage in the eyes. But I had never actually been faced with this explanantion. It turns out that various veins in my eyes are begining to show 'cotton wool' like evidence that the areas where the veins and capillaries join, are starting to struggle. A good article about it is here, so read if you want to know more about it.

As I do with all things, I go into a state of panic for the first minute. I usually stare blankly at the person delivering the news to me and then start to try and piece together how to tackle it. I couldn't walk away without getting the doctor's thoughts on the Simvastatin, which has been available to me but always refused, for years. I told her all about what I was doing to lower my cholesterol, but asked her for a frank opinion about the pills.

I'm better when things are in plain English.

"Well, a two-pronged approach will always be the best option. Continue with the diet and exercise but in the meantime, why not take the Simvastatin as well? The evidence of high cholesterol in your eyes isn't permanent and can still heal. If you attack this from both angles you will by far have the best chance of stopping this."

"So could I come off them if I manage to get the cholesterol down to a very low level?"


That was the decider. As much as I would love to address the cholesterol issue from every angle other than pills, I am not taking chances with my sight for the sake of pride or wanting to do things 'the natural way'. 'Natural' is not walking with a stick or needing the assistance of a dog. My sight is just too precious to me.

So I decided that rather than view this as a sign of my failure, it is a sign of my determination. After 25 years I have managed to keep all complications at bay. Even the background retinopathy is at a 'young' stage and can still be stopped.

Any war is won by the clever deployment of troops. So I'm sending in some from the North and some from the South. One day I hope to come off the Simvastatin and allow my cholesterol to return to its natural tree hugging status but until then, exercise and diet are my sword and Simvastatin is my shield.

Three weeks in and finally at peace with it.

Tuesday 6 December 2011

How quickly we adapt

Have you seen that John Lewis Christmas advert on TV at the moment, where the doe-eyed little boy is counting the minutes to Christmas, apparently desperate to open his presents, only for us to discover that truly he just wants to give his own lovingly wrapped, crinkled and adorably wonky present to his parents?

Well, in a weird, completely different and only very tenuously related way, it reminds of when I first went on a pump. More specifically, when I first had to change a cannula. Why? Because when I first attached for the first time in January 2010, I was acutely aware of everything about the pump. The pump itself, heavy feeling and enormous. The tubing, which I tucked away as neatly as possible and found myself being somehow telepathically aware of its positioning at all times and most of all, I was aware of the cannula.

"Where is it?"

"Did I just knock it?"

"Has it come out?"

"Should it feel this, well, invisible?"

I knew the exact hour and minute when it needed changing; three days after first putting it on. Of course I couldn't last the full 72 hours,what with me having the patience of a chocoholic in a Lindor factory and vaguely recall removing it at about 2.5 days.

What a difference two years make. Nowadays I have the once clumsy and fiddly process down to about 10.5 seconds flat, need to give it no second thought and funnily enough, if I don't set my alarm on my phone to tell me when to change, can easily go a day or two longer before my immune system and blood glucose tells me it has outstayed its welcome.

I guess it shows how easily we adapt to new situations and also how we also get excited about the silly little things. I suppose it was also the first 'big' challenge I had as a pumper. Could I change the cannula? Would I do it right? Would it hurt? I still remember the questions. The biggest one at the time still being, will this work for me? After all, without successful cannula changes, the pump was a no-go track. Every time I see that advert I think of my own excitement, anticipation and wonky attempt at changing those first few cannulas.

Turns out it was one of the most simple aspects of being on a pump and I had nothing to worry about.

Friday 2 December 2011

Fifth Annual Insulin Pumps Association conference

Last week (apologies for the delay) I was invited by INPUT to attend the Fifth Annual Insulin Pumps Association conference in Manchester. Never one to miss the opportunity to jump face-first into events like this, I gladly accepted and before I knew it was boarding a train to Manchester and syncronising hypos with Lesley of INPUT fame.

On arrival and another spookily timed skyrocket out of (ahem) 'optimal range' on both our parts, Lesley and I were having dinner with some of the many other attendees at the conference including several bods from Roche and some healthcare professionals from a number of different hospitals around the country. It wasn't long before one of the sales managers from Roche had spotted that I was on a Medtronic pump and had begun their sales pitch at light speed. Frankly the Combo pump and blood glucose meter did impress, seeing as I was rifling through my bra for most of the duration of the meal to adjust insulin doses as each delicious (and very non-low carb) course came out, while all those with the combo remote controls were testing and bolusing (taking a shot of insulin for their meal) with ease. Truthfully I think the next pump for me will be a tubing free one seeing as the tubing is, for me, the biggest drawback of pumps in general. But it did show me that while my beloved Paradigm VEO was top of the market (again, just in my opinion) when I got it two years ago (is it really two years already??), it has been somewhat overshadowed by the newer sexier pumps on the market in recent years. Funny how quickly things move nowadays isn't it? Our diabetic predecessors must have been using metal and glass syringes for the 50 year mark before hypodermics came in, and now within 2 years the sexy new pump you once sported is the equivalent of the cassette tape to the ipod or what the horse and cart is to the Porsche.

It was with an eager attitude that I met Lesley for a suprisingly low carb but tasty full English breakfast the next morning and with that the conference was under way.

The exhibitions room was as always packed with impressive stands. But this being the first pump specific conference I had attended I was keen to get stuck in, knowing full well that the newer model Omnipod would be on show and I was hoping, the Cellnovo as well. I'd heard rumours about the Animas display which can be seen at these events and true to form, the most eye-catching stand had to be theirs, with a fish tank fully equipment with water, lights, real fish, plants and yes that's right, their insulin pump (!) suspended mid-tank. Although most pumps posit the same level of waterproofness (fairly confident that isn't in the dictionary) Animas are one of the only (if not the only) pump provider who are happy to guarantee their pump when submerged in shallow water. Great waterproofity? Waterprooficiousness? What IS theword!

There were also displays from Medtronic, Adanced Therapeutics (the company who bring the Dana pump and Dexcom CGM to the shores of the UK), Omnipod and my personal holy grail, Cellnovo.

I had a great chance to have a talk with Gary from Omnipod, who went some way to reassuring me that the teething problems I had experienced when I first made enquiries about their system had now been ironed out, thanks to a multiplying workforce and a chance to get their feet under the British market table. The new pod is certainly smaller than the old one and a contender against the much smaller and sleeker Solo (don't get too excited, its not avaialble here yet) and Cellnovo (watch this space, VERY soon). In truth I still have my doubts about Omnipod but only based on the fact that Medtronic's customer service still is - as far as I am concerned - second to none. That being said, the mention of Medtronic brings me on nicely to the holy grail of the day, the Cellnovo.

For anyone concerned about customer service, one of the head honchos at Cellnovo used to be on the Medtronic team and not just any team at that. She started the whole blogger forum craze and was, from what I hear, absolutely a key player in getting Medtronic's customer service at the very high level it is, which has been continued and pushed forward by their Justin Gray. So for a 'new' company who are just about to release their pump in the imminent future, I have a lot of faith they will do well. This, brings me to their pump.

I have looked at the website god knows how many times, but had until this point never had an opportunity to see it. 'Miniscule' is probably the most fitting term, considering inside it there are hundreds of parts, computers, insulin resevoirs and so on and so forth, that allow it to do it's job. It is technically a patch pump as the pump itself sticks to the skin using a velcro attachemnt, but the tubing between the pump and cannula can be varied allowing you to continue to put it in a pocket if you wish. That may sound like it defeats the point, but I have come across suprisingly large amounts of people who say they would like the option of hiding the pump if they were wearing a slinky dress or tight fitting shirt. I don't share these needs, but completely understand the concern. With the Cellnovo, that is possible. It is also equipped with a smart-phone like handset which allows real time measuring of impact of activity on BGs, acts as the remote control for the pump and frankly for the growing numbers of young people on pumps, will be a fantastic selling point. Considering for the most part young people are already well familiar with touch screen phones and wireless handsets.

It was great to see the Cellnovo and their team in action and provided there are no horror stories about the pump failing or customer service nightmares, I imagine this will be the kind of pump I aim for next, albeit in two years time!

But the reason above all else that I was there,was to attend the conference and hear the speakers. The name of this year's conference was 'From Cradle to Grave' and the overall message of the conference was that insulin pumps can be used in ANY portion of society and at ANY stage of life. We were given case studies of people at end-stage renal failure who were on pumps, babies as young as days old who we were shown photos of (which to be honest I found a bit shocking due to the very tiny body connected to the pump, although the shock was more a feeling of sadness that someone so 'new' had to already live that life). We talked about the benefits for pregnant women, children and pretty much every group you could imagine.

I see a specialist team at Portsmouth who are without a doubt a proactive and insulin pump friendly team without whom I would not have been on the incredible journey I have travelled in the last two years, but without a doubt they had nothing on the speakers at these conferences. In Cambridge they purport to have 50% of all their Type 1 child patients on pumps, which without a doubt blows the NICE benchmark out of the water and deeply puts to shame all those PCTs who are yet to welcome and encourage pumps for their most at risk patients. The word 'proactive' doesn't even begin to cover how forward thinking many of these professionals were. When I arrived at Cellnovo, the chair of the conference was even stood next to me (although I didn't know who he was yet) asking questions about what the benefit to the patient, this pump would have. The benefit to the patient; have you ever heard such madness! In some areas they seem to disregard even the benefit to the PCT, let alone the humble patient!

We had a fantastic talk from Candice Ward from Cambridge University Hospital about where the artificial pancreas project was going and how CGM and pump technology could well be the key components which will significantly impact the lives of diabetics. Although it was clear she felt this was not quite an imminent success, she did intimate that it was on the horizon and creeping closer to us day-by-day. My brain has a little party whenever someone says that.

All in all it was a fantastic day and the messages I took away were:

  • Don't buy it if you are told your clinic doesn't do pumps, talk to INPUT.

  • No matter your age, demographic or favourite day of the week, ASK THE QUESTION OF YOUR SPECIALIST

  • No-one is too young, too old, or 'too far gone' (whatever that means) not to benefit from a pump

  • Cellnovo are the ones to watch

  • There ARE some highly proactive hospitals in the country, so ask about changing if your clinic fob you off.

All in all a brilliant day.

Wednesday 2 November 2011

Parliamentary Showcase

You may have noticed me bang on about INPUT quite a lot these days and for good reason; we are both big time fans of insulin pump. The insulin pump and its real-life pancreas mimicking skills have helped me come full circle from a place where I was frightened of my own future and had quite frankly given up trying a little. Since my pancreas decided it was no longer going to play ball with the rest of my body and would allow my insulin producing cells a very extended holiday (I believe there has been a problem with security at the other end for, ooh, 24 and a half years so far), the insulin pump was my saviour. It has allowed me freedom, better results for my effort, to live more independently, has restored my confidence in my own ability to manage my condition and has opened my world to new opportunities. Not to mention the reduction in complications I was beginning to harbour.

Luckily for me INPUT are equally as fanatical about insulin pumps; so much so, that they spend a huge amount of time lobbying up and down the country for improved access to insulin pumps, awareness raising and taking to task those PCTs (Primary Care Trusts) who have yet to meet the National Institute of Clinical Excellence (NICE) benchmark of 12.5% of people with Type1 diabetes accessing Insulin Pumps. I'm not sure what my PCT is currently achieving, but I know it isn't there just yet.

INPUT kindly invited me to attend the Medical Technology Group's Parliamentary Showcase with them and help them man (well technically woman) their stall and answer questions about the pump and highlight some of the issues faced. This is an opportunity for members of the MTG to set up shop in the Attlee Suite of Portcullis House in Westminster and wait around for MP and parliamentarians to show up ready to impart some wisdom on them.

On arrival there were stalls (wo)manned by us, Medtronic, Heart Research UK, JDRF, Boston Scientific, The Patient Association and The Lindsay Leg Foundation amongst others, each with their own stall packed to the brim with leaflets, diagrams, pie charts and photos to illustrate their cause. As well as being there to answer questions, time was given to focus on the latest campaign of the MTG (last years was insulin pumps) which is UFE, or Uterine Fibroid Embolization. UFE is a non-invasive treatment for Fibroids in women which removes the need for a full abdominal hysterectomy which remains the most common (but not most popular) method of treating Fibroids. Not only does a hysterectomy involve several weeks if not months off work, it is highly invasive, expensive and for women, demands huge psychological adjustment for their female reproductive organs to be all together removed. Just because you may have had babies doesn't mean you want your body dismantled and put out to pasture. Conversely, UFE is minimally invasive and highly effective. Instead of removing the fibroids through a hysterectomy, using a local anaesthetic a catheter is introduced to the femoral artery and fed through to the uterine artery where microparticules are released which find their way to the fibroid cutting off circulation. Within days the patient can be back to work, and within months the benign tumour dies due to the lack of blood and oxygen. It allows women a greater chance or remaining fertile, and for those who have had or do not wish to have children, allows for them to remain completely intact.

Sounds great doesn't it? Well, much the same way the insulin pump are falling behind the expected up take so is UFE. In fact the message from the day was all too familiar; that this superior technology with efficacy far greater than the invasive technologies of the past, is still very much kept on the down-low by many PCTs, rather than making options transparent and clear to the patients, no doubt already suffering from the side effects of the illness they are undergoing.

It was a great day and a positive reminder of all the work being done to educate, increase awareness and improve the experience of the patient, while reducing the cost demand on the NHS. I was glad to be there helping educate and raise awareness about the benefits of the pump and it was a great chance as always to talk all things diabetes with people who were not only prepared to listen, but were actually interested.

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.

Wednesday 14 September 2011

Kinky - but it ain't the good kind!

There aren't many things about the insulin pump I don't like; mainly because it is a genius invention which hundreds and thousands of us diabetics rely upon to make life easier, give us a more normal life, make us feel more in control but mainly because it means I stand much better of chance of keeping my extremities attached. Just the way I like 'em!

There are hassles, including finding places to hide it in a skimpy dress, catching the tubing on a door handle as you rush through it only to be pulled back in a cartoon-like way and becoming almost dog-like in your ability to distinguish one beep from another. But there is one hassle which I simply despise and unfortunately, is one of the very few drawbacks of a pump which can't be controlled. Kinked cannulas.

Even the words will probably make those diabetics out there reading this shudder. Not only does it impede your ability to control your own levels even if only for a few hours, but there is also no way of knowing it has happened until your BGs are horrendously high and you're feeling like a crack addict going cold turkey.

So many times I have been asked what a kinked cannula actually is which is understandable considering unless you have diabetes and an insulin pump, you probably wouldn't know what a straight one is, so this post is about explaining it to anyone who has either never had it happen (well done!) or those who don't wear a pump.

The cannula, which is the part of the infusion set which goes into the skin, is how the insulin gets in. Once it has been inserted, the adhesive tape keeps the set in place and the cannula (a tiny thin Teflon tube) allows the insulin to enter your system and do its thing.

It should look like this:

Now the plastic bit at the top is where the tubing which carries insulin from the pump to the cannula, connects. The material is the adhesive 'pad' which is what keeps it all attached and the tiny Teflon tip will be under the skin and allows the insulin to enter your body.

Unfortunately when a cannula kinks, it looks like this:

Now this tiny little change which to those who don't pump probably looks like no big deal, is one of the pumping community's biggest frustrations. This kink will mean that very little - if any - insulin can enter their system. Despite its name, the pump doesn't actually vigorously pump insulin into the body. Mine in particular very gently 'drips' insulin into the body. So unless I bolus (give a dose for food, for example) a large amount, in which case my pump will alert me to tell me that something is not allowing it to release the insulin, I won't be any the wiser. This is particularly the case when I go to bed a time when I won't be giving any large doses - and means that I will wake up at around 3am with BGs of 20 or more and feeling extremely ill as I did this weekend. Thanks to the pump meaning I have far less 20s these days, it also means that those 20s I do have feel a lot worse.

The problem is, as you can see, the bit which can bend (and to this day I still do not know why) is under the skin. As this is a disposable set, the first I will know of it is when it come out of the skin; and a whole new set is required.

Well there you have it. Unfortunately I have no wise words or positive vibes to end this one. But this was more to explain what they are, and what they look like. Hopefully it will make it easier to understand next time one of us is moaning about a kinked cannula, how they happen and why we can't avoid them.

Thursday 8 September 2011

Diabetes just sometimes happens

I have two distinct memories of being diabetic as a child. During one memory, which must have taken place shortly after my diagnosis, I am sitting on my parents bed, legs dangling over the side. My feet don't even touch the floor because at 4 years old, I am but a pint sized person despite the enormous weight I have just been told I must carry; diabetes. My mother is one side of me, my father the other and my younger brother is peering over my shoulder. I am doing an injection in my right thigh with one of those crude hypodermic needles which strike fear into the hearts of those diabetics who have had the condition long enough to remember life before the swanky pens or even more space-age insulin pump. i remember it feeling huge in my hand as I clumsily tried to navigate the needle into my leg. I remember being very proud of this moment when everyone was watching me do my injection, on my own, for the very first time. I remember everyone making a really big deal out of it and saying how impressed they were. I'm not sure if I realised at the time that the pin pricks would continue for the rest of my life, but I remember feeling impressed and a little smug, because I was the only one there who got such praise.

My other memory is lying on a table at the kindergarten with my German best friend, Davina peering at me with a terrified look on her face, because I have clearly lost consciousness. I remember the hallway where I lay being empty except for us and in my memory, very dark. With us is a person - a man, I think - giving me a Glucagon injection (something which causes the liver to release large amounts of glucose) which is used to bring a diabetic around when they suffer a severe hypo. If I close my eyes I can remember it all. Even how I felt; tired.

These two very different but very clear memories will no doubt stay with me until my mind lets me forget. I don't feel any overwhelming sense of anything when I think about them, but the very different memories highlight that my childhood wasn't like other people's I knew. Four year old children don't normally pierce their own skin with an inch long needle, or need to worry that going to school in the morning may be followed by a lift home from hospital that night.

But all being said and done, there is one truth which shines through when I think of my childhood. One thing for which I am eternally grateful -mainly to my parents - because it is clear to me now just how hard they worked to achieve it. And this is the fact that my memories of having diabetes as a child are few and far between. They do exist, but today diabetes dominates an enormous amount of my time and energy. It demands a huge part of not only my own, but of all the lives of my loved ones. There is never an hour in the day which goes by where I don't think about a blood test, a high blood sugar, the next meal or whether my pump is hidden.

When I was a child however, I remember very little about my diabetes. Instead, I remember playing cricket on the grassy area outside my house - I was always wicket keeper, because I couldn't throw - or catch - particularly well. I remember when I was about 6 I climbed a tree in the garden so high that I cried because I was too scared to climb down. I remember melting chocolate on the radiator in a pan with my older brother and being there for about 45 minutes because as it turns out, radiators don't heat pans all that well. I remember lying on a mattress with my younger brother, while my older brother folded it in half and jumped on us, because this kind of clumsy, violent fun was what made us giggle the most. I remember Christmases, Birthdays, swimming. I remember pretending every horse we drove past in a field belonged to me. I remember trying on shoes which were way to big for me and wondering if I would have shoes like this one day.

I remember being a child. And I remember that diabetes sometimes just happened.

About three weeks ago a friend of mine told me that she had managed to get a job in a school working with two young children and that these children both had type 1 diabetes. She told me that she would be 'looking after them' and was going to monitor what they ate and give them their injections. In truth at first I wasn't quite sure what I thought of the idea, seeing as the way I was given a 'normal' childhood was never to make an issue of my diabetes. It was something we dealt with, but never highlighted. I didn't have someone watching my every move, I just got on with it.

The thing is - and I know this now all too well - I did have someone watching my every move. I had parents, teachers, friends. My parents already had knowledge better than most professionals, about the workings of the body and how their daughter 'worked'. Do you know how your child converts food into glucose? My parents did. My friend will.

It is only because I had other people watching over me and taking away that responsibility, that I was able to build ten million more memories about horses and melting chocolate, than I have about diabetes. That I can look back and say that diabetes didn't take anything away from me. Because my parents took it away for me.

When I talked to my friend today as she eagerly told me about the carb-counting course she would be put on, the injections she would be trained to give and the psychological awareness training she would receive, to help her fully understand the emotions these two children may go through, I realised just how lucky these kids are. Because for them, they now have someone watching over them at school and allowing them to remain children. It means their parents need not worry. They can scuff their knees in the playground with friends and imagine they own pets their parents won't really let them have. They can go home at the end of a day to a parent who is a bit less stressed because their child is in good hands.

We've come a long way since I was young and now we appear to be recognising that having someone take away the incredible responsibility there is in taking injections, doing food calculations and worrying about that next blood sugar, is what allows our diabetic children a shred of the innocence that other children are just awarded.

I don't remember there being a specific person looking out for me at school. I am lucky that my parents just managed it all, somehow. But I ended today feeling thrilled, because I know that there are two very lucky children out there, being allowed to live their lives. My friend will take away some of that responsibility and will make some of the decisions they are too young to deserve. Just as my parents took it away from me.

I know that we are not yet at the point where every school can do this and I certainly don't think that my childhood was lacking in some way. But to see the world moving on and beginning to provide this level of care for at least some of their precious children, gives me a huge sense of achievement. Those children will hopefully just look back one day and remember that lady they used to work with at school. The one who encouraged them in their school work, made them giggle and occasionally, gave them an injection.

They can go on to remember that when they were a child, diabetes just sometimes happened.

Sunday 21 August 2011

A good hard knitting session

As a type 1 diabetic there are many things that frustrate me about the condition; kinked cannulas, ignorant comments, doctors surgery staff (who seem to get paid to raise by blood pressure), people who assume I got it because I was fat (nope, I just love pies) and when my pump has been warning for hours that I'm about to run out of insulin, yet i somehow still forget it and end up going high, to name a few. But perhaps the most frustrating situation for me as a diabetic, is exercise.

There is no exercise which is bad for you and the truth is everybody out there, diabetic or not, should be exercising. Our ancestors didn't get us here by watching 'Come Dine with Me or 'CSI: Miami'. Instead they exercised. A lot. We are taught that any exercise is better than none and we are constantly bombarded in the media by images of morbidly obese people who we are told didn't make the effort to do enough exercise.

But for me exercise has such dramatic effects on my sugars that it is the last great paradox when it comes to my diabetes self-management. This is because when I do gentle exercise, my sugars go down. But with strenuous exercise, they go up. They go up a lot. The technical reason for this is that when you exercise gently, your body uses up the glucose in your body as fuel. However, when you increase the intensity, you put your body into 'fight or flight' mode. The stress of that exercise tells your body (as our Come Dine with Me watching ancestors knew) that you either need to wrestle that mammoth to the ground, or run the hell away from it! What happens, is your body releases adrenaline and cortisol in order to provide you with an extra boost of energy. Unfortunately these two hormones also blunt the body's response to insulin. In a nutshell, it means that when I do something as intense as body combat (a new love of mine and the most intense workout I have ever done) a few hours after the workout, my blood sugars go through the roof, thanks to the tiger-tackling adrenaline my body released earlier, which subdued my insulin response.

The frustration is that even though the exercise benefits me so greatly by increasing my heart rate, strengthening my heart, lungs and muscles and providing that all important circulation boost, the blood sugars of 15mmol (270 mg/dl) when the normal range is 4-7mmol means that all my other body parts such as nerve endings, kidneys and eyes are now being damaged by the excess sugar in my blood stream. Added to this, if I now correct that high blood sugar, that sugar which is in excess to what my body needs, will be stored as fat. Slightly frustrating considering I just hurled myself around a room for an hour for the purpose of improving my health and losing weight.

You could argue that I should just always go for a walk or gentle jog. But for me, when I exercise I like to really feel like I've exercised. A gentle stroll feels about as challenging to me as a good hard knitting session or a really vigorous deep breath! I like to come out shaking, a little light-headed, covered in sweat and itching to come back tomorrow.

Well after several weeks of Sunday morning body combat followed by horrendously high sugars, for the first time today after 4 weeks of trying, I actually got somewhere. Through a process of experimentation, over the last month I have amended just one thing each time to see what might help. I won't go through each week because I've already rambled on enough, but I thought you may find it useful to know that I started this morning off at 8mmol (a little high for me) and am now stable at 7.5mmol (a first after combat). The key for me was:

  • Eat some protein 1-2 hours before I go. I choose and omelette with turkey ham and cheese
  • Take the pump off as late as possible before starting the exercise.
  • Test Blood Glucose (BGs) regularly throughout
  • Put the pump back on asap after the class (previous weeks I left if at home. This time I took it with me)
  • Bolus 2.5 units on finishing (please note this figure is ABSOLUTELY INDIVIDUAL to me! I know this because it is the ratio I need to bring me down from 15 which is where I have been in the past after the class - please do not copy this without knowing your own correction ratio).
So far since the class I have not moved from 7 which as far as I am concerned is a huge 'win'. Next week will be the big test because if I know my diabetes, I will have a job keeping everything the same from week to week. But it is a start. And a good one at that.

Wednesday 3 August 2011

Donning our Lycras

Fundraising can be something of a tricky issue especially in these times, because while most people are happy to give money to a charity close to their heart, simply walking about with a charity collection box won't always cut it. Yes, you may collect some £££s from members of the public you approach in the street but having done it myself, you feel more as though people are paying you to go away rather than happily supporting your efforts. They will often only give a few pence and they certainly won't want to learn about the charity you are collecting for and rarely care which disease, condition or cause you are supporting.

Personally I too would rather pay £50 to take part in an activity or event which I can feel part of, over dropping a couple of pounds I won't really miss into a box I haven't really even taken notice of for a charity I probably didn't identify. You know what they say, nothing comes for free.

So I was rather pleased when I found out that the blast-off bootcamp gang had decided to run a boot-camp for which all proceeds would go to the Diabetes Research and Wellness Foundation. This sounded right up my street and it wasn't long before I had my fellow boot-campees with me in the form of the fiance Jamie and the work-mate Nicole, who in turn brought her daughter Tarron. I roped them all in and signed them up to a Sunday morning on Southsea common. The plan: Sweating our backsides off for diabetes

We arrived to find Sarah from DRWF already there and raring to go along with about 4 or 5 others, all of whom seemed to be much more on first name terms with Mr Fitness than me and my little gang! But nevertheless before long there must have been 16 of us all donning our Lycras, limbered up and ready to go

The first half of the session was made up of circuit training style exercises like squats, lunges, star jumps, burpees (yowzer!) and wobbles (do NOT be deceived, they may sound cute, but they are certainly not!). After about circuit one or two Nicole was already throwing me looks which said "You owe me cakes on Monday my friend!" and the two of us exchanged regular "oh my god's" and "I'm not sure I can get up from here's". But the giggles shared between us as we failed yet another press-up or made funny noises during sit ups was in itself, good for the soul.

For the second half of the session we moved outside to play a series of games like stuck in the mud (remember that? Well Blast Off are bringing it back!) and a game where we all stood in a circle with joined arms while someone had to chase a basketball bib which was attached to someone in the group. While we were out there I kept noticing people looking at us as they parked their cars on the seafront no doubt having a gentle Sunday stroll. I imagine they weren't bargaining on a group of 16 smiling, charging and very flushed-faced lunatics bombing around the seafront! As we progressed with our games I felt the briefest moment of embarrassment as I lolloped around the field, but thanks to the fun we were having and the endorphins flying around my body, I didn't care for long. After a fleeting moment of pride, I got back to my task, not getting stuck in the mud!

We finished our session with some stretches and the mandatory group photo which was sprung on us at the moment when we probably looked our worst - but those moments make for the best photos, don't they? :) As Jamie popped in our £20 I felt shattered, but somehow energised and glad that I'd been involved.

So here it is, the photographic evidence. Although it appears the camera may have been wobbling at the time the photo was taken, I expect it is quite the opposite. I expect we were the ones shaking! You can find yours truly over on the right hand side, matching the bright red DRWF t-shirt I was sporting. Nice picture there, Po! And if you are interested in Bootcamp, I would recommend this one where they won't just shove you in the right direction exercise wise, but also give excellent advice about food options and how to eat in a way which looks after our precious bodies that little bit better. They were certainly good enough to dedicate their own time, effort and exertise in support of those of us with a slightly more uphill battle when it comes to looking after ourselves.

Will you be joining us next time?

Wednesday 20 July 2011

Dropping in on Parliament

Luckily for me I was dropping in on Parliament a week or so before the whole 'phone-hacking scandal' furore which has gone global so things were a bit quieter when I was up there. But nevertheless I was once again invited by Lesley of INPUT fame, to attend the APPG (All Party Parliamentary Group) for Diabetes which happened to have a lovely meaty topic; the artificial pancreas (AP). I'm afraid this week has been a jam-packed one so this post should have been written a week ago but better late than never, here it is.

I met with Lesley at Waterloo station and as always it took us all of 6 or so seconds before we were both eyeball deep in diabetic rhetoric. Not that I'm complaining of course, seeing as I'm sure by now my work colleagues could calculate their own boluses (doses of fast acting insulin), know not to exercise with blood sugars below 4mmol or above 10mmol and are amazingly well-versed on the finer details of the difference between type 1 and 2 (let's just say 'everything').

I won't go through what an APPG is again, but here is a useful source if you would like to know more about what is going on 'behind the scenes' on the diabetes front, including APPGs. Or I gave a run down of the broad details in my last post about the APPG on Improving Patient Access to Medical Technology.

The actual APPG sadly wasn't nearly as well attended as the newly formed Medical Technology one, but really it was all together a different experience. For starters, the true star of the show was 8 year old Theodore Collins, or 'Theo' as he boldly told us. He is one of the children (52 of them in total, if I remember correctly), currently taking part in one of the very first trials into the AP which is being funded by JDRF (the Juvenile Diabetes Research Foundation). Theo gave a fantastic presentation about the trials he has been involved in and described the benefits he felt the AP would bring him; including having to worry less during sport and not having to rely on his 'friend', Lucozade. But as wonderful as the presentation was, I think my favourite moment with young Theo was right at the very start of the APPG when I suspended my pump trying to ward off a very well-timed and contextually ironic low blood sugar. Lord Pumpington gave off his tell-tale triple beep with which all Medtronic customers are so familiar, telling me the pump was suspended, only for Theo's head to whip around and catch my eye. As we exchanged knowing glances it was clear - he was on a Medtronic too. "I'd know those beeps anywhere, Lady "his eyes somehow told me.

But moving on, we were also given a presentation by Sarah Johnstone of JDRF Policy and Communications fame, who gave a passionate description of how JDRF have so far put over £50 million into research focussing on the artificial pancreas and would continue to strive for access for all type 1s to insulin pumps. This was an issue which Lesley had gone into the session with on the tip of her tongue, because - as she put so well - if you don't qualify for a pump, surely the artificial pancreas will be completely out of reach. A contentious issue it may be, but Lesley is quite right that all the technology in the world is a fine thing, but if there are people out there who don't fit the NICE bill then that technology will sit on the shelf, only accessed by those with the [bad] numbers or those with the cash.

But perhaps the most interesting talk was given by Dr Daniela Elleri, one of the researchers working on the JDRF AP project. In its fourth year, the results speak for themselves and certainly the overnight periods are showing how vastly improved overnight control is when the technology of the pump, along with the technology of CGM (Continuous Glucose Monitoring) is combined with the technology of the AP. It also described how rather than trying to create some super-system, the project is incorporating already commercially available products such as our well-known friends the Animas Pump and the Dexcom sensors. It will be interesting to see how that side of things goes, as it would just seem to me that we could end up heading down the route of having a 'sponsored system' involving different charities backing different products which aren't available unless you are loaded. I can imagine it now, "Buy your Dex-Mas Artificial Pancreas, only £500 per month to fund - sponsored by JDRF"! Hmmm.

Anyway, cynicism put aside it was very interesting to hear how far along (or actually, how early on!) the studies really are. It showed pictures of children wearing pumps, with CGM attached and mini laptops in reach - poised to adjust the basal levels on the pump at any minute, according to what the CGM dictates. It was clear that the AP itself is still in the very early crude stages and isn't at present even comprised of one single 'unit', but instead makes those in the trial look a little more like a teenager at a computer gaming seminar; happy, but lost amongs the wires, controllers and computers. But the fact that it is being tested on people already is still - I feel - a reassuring indicator that this will hit mainstream treatment one day. I have yet to meet someone who has a background knowledge of or involvement with the AP who hasn't seen it as the biggest development in diabetes in the last 50 years.

It's almost as exciting as the time we moved on from pig insulin. I know. Goose-bumps ay! :)

Finally we had some time to ask questions and discuss a few issues. We drew to a close and Lesley and I went for the post-APPG cup of coffee (now a ritual in itself) and to discuss the session.

After much to-ing and fro-ing and putting the world to rights, we bid each other farewell and went our separate ways. And as I boarded my train and sat myself down, I recognised that feeling creeping in; hope.

Keep watching people, this will happen.

Thursday 7 July 2011

What's the HcA1c Secret?

I've been a type 1 diabetic now (insulin dependent) for almost 25 years now. In that time I have learnt how to carbohydrate count, how to calculate insulin doses, how to change a cannula and fill an insulin pump reservoir. I've learnt a whole diabetic language consisting of words like pre-prandial (before a meal), post-prandial (obvious, really), nephropathy (kidney damage) and retinopathy (eye damage). I've learnt that fruit isn't always good for you and that sometimes even with all the best efforts in the world, blood sugars will just seem to throw the most enormous hissy fit right about the time I have a 'colourful language' moment.

But all in all I consider myself a 'good' diabetic (as opposed to an evil one I suppose) and I spend an inordinate amount of time each day fixated on adjusting this, weighing that and calculating the other. But despite my best and most dedicated efforts, I have never in my living memory achieved an HbA1c of 7%. An HbA1c (so as not to get all technical) is a magic number that us diabetics have to aim towards and measures the amount of Haemoglobin being carried around the body by the red blood cells. Above 7 = bad. Below 7 = good. 6.5 = Mother Teresa.

Well that is a lot easier said than done seeing as normal life as a diabetic can involve more peaks and troughs than a day at Alton Towers and sometimes all before we get out of bed.

So what can equip us to do this? Well, 18 months ago I was given the first tool I could use; the insulin pump. Thanks to the unique ability of the pump to supply insulin tailored to my exact needs - as much as can be - it was the first component which gave me the opportunity to try and lower my A1c. At the time I was 9.6% and heading for complication city (that's actually a place you know, just north of Bullshitville and south west of Scaring People Shit-less), but thanks the the pump, after 6 months and with no changes other than the pump itself, this dropped to 8.2%.

Good job, pumpy!

The next step was the revelation of the low-carb diet and exercise combination which I discovered towards the end of last year, after reading several blogs, online resources and books all about how eating low carb (and I mean LOW!) and exercising regularly in a certain way had helped people to achieve near normal BG results. After a bit of experimenting, this chick was added to the list of converts and low-carb advocates. I don't claim to manage it all the time. Not in the least because sometimes a big plate of carbs can be just as therapeutic as the perfect blood sugar. But I try where possible to pick low carb options and where we are eating a meal with things like pasta and potatoes, I try to have the tiniest amount possible. This helped me get it to 7.9%

But the final (and unfortunately most problematic component) was the fact that two months ago I was invited to take part in a trial of the new Medtronic Enlite sensors and within just three weeks of wearing the sensors, my average blood sugar had dropped from 8.6mmol to 7.4mmol, and my control had tightened immensely. So when my blood was taken for the HbA1c this week, I had been lucky enough to be rocking the three things I think are key to a good HbA1c.

This time, it was 7.1%. Marvellous.

Unfortunatley I no longer have the CGM to help me on my journey, but once the little fan-fare had finished playing in my head and my Oscar -style speech was over, it still sank in that it IS possible to reach that number.

I just have to prove it's possible without CGM now!

Monday 4 July 2011

HbA1-Freak Out.

Twice a year us pancreatically defective folk have to provide a sample of our finest blood cells in order to have a full MOT and service done. In fact they take 3 full tubes of my finest specimen and if you saw the reaction I give, you would know that I am very protective of those three little tubes (they don't feel little, that's for sure). But I do get a little reassurance from these. Not from the results actually, because if you are anything like me you have to all but bribe your GP/Specialist/Nurse into explaining exactly what things like 'electrolytes' and 'triglycerides' are. The result I don't actually get too involved in. If they call me in for a chat after, I need to change something. If not, I'm good. That may sound a cop out, but when you analyse numbers all day, knowing exactly how many triglycrides you have per milligram or decilitre - and what that actually means - seems unnecessary.

The reassurance I get is from the fact that whoever is unfortunate enough to be waiting to give their special donation to the blood collectors, will probably chuckle to themselves at regular intervals for the rest of the day about that funny young lady at the clinic (yes, young!).

From start to finish my visit at the phlebotomy clinic goes something like this:

(Waiting room) Take ticket, realise I have to wait. Fiddle, huff, puff, fiddle, squirm, stand, make funny noise, bargain with Jamie to let me do it 'next week' through using washing up/housework/sexual favours/good old fashioned begging. Touch arm, freak out about having just touched arm, squirm, huff, eye sight goes a little funny, think I might faint, come back round, bargain again, look at strangers with sort of desperate look on face as though I might offer to do all their washing up for the rest of the week if I am allowed to leave. Squirm, huff, puff.

I go on like this for however long I am in there for with increasing intensity until I am finally called into the phlebomotist's room. Avoiding looking at ANYONE who is mid blood test I head straight for the person who appears free and launch straight into a 'I'm afraid I am a bit of a wimp when it comes to this" and explain my bad experiences as a kid speech, all the while squirming and breathing slightly 'horror-flickishly'. I hope that my bad memories will appeal the the nurses good nature, because frankly I NEED them to be nice to me! They have a massive needle and the ability to jab! It could be Hitler taking my blood and I would still be nice to them at this point.

Throughout my blood test career I have always considered myself the worst patient you would want on a Monday morning and have taken pleasure in the notion that at least everyone else is likely to have a bit of a laugh at my expense because I make such a fuss (but not in a making everyone else scared way).

Well that was until today. Today I met the lady you would never want to have to give a blood test too!

In the middle of my squirming and bargaining attempts in the waiting room, from the phlebotomist's office there came some of the most world class snot-sobbing, shrieking and desperate crying I have ever heard. Everyone in the waiting room starts looking at each other as though they must be using a sword to get the blood sample, but all the while laughing amongst themselves. Problem is for someone who already hates this process, hearing someone 2 goes in front of you having such a freak out makes me all the more likely to pass out. At this point I am seriously considering just running away. Plain old drop my form and run for the door. Problem is as much as I hate this, it needs to be done.

Luckily for me the lady who took my blood was very sympathetic. She wasn't Hitler, there was no sword involved and she even gave me two biscuits afterwards. Lovely.

It's just a shame it never gets easier.

Friday 24 June 2011

Snort, drink and smoke your way to an early grave.

I always said that I would write this blog honestly and openly and would never just write according to which posts were most popular to keep the clicks coming in. Nothing frustrates me more than reading blogs where all people talk about is the wonderful DOC (Diabetic Online Community) and how diabetes has made them grow as a person (I don't feel diabetes has made me grow as a person. I MADE ME GROW. Oh and biology had a little to do with it also). Anyway, I always said that I would write about both the good times and the bad, even if the bad is embarrassing (went out for the day without filling up my reservoir a few weeks ago - marvellous fun that one),or funny (thought I'd gone blind during a hypo) or sad (because sometimes, it is just bloody hard).

Well, I have decided to admit a deep, dark, sordid secret about a huge risk I take with my health. I do so because this habit of mine is well and truly ingrained in my behaviour and no matter how hard I try or how many times I read about people getting off it, I simply can't seem to shake it. And as a person who writes a blog and who you may well be listening to when I tell you my story, you need to have all the facts. I hope you can understand.

So, back to my admission. Any guesses?





Thankfully, my sordid secret relates none of the above. But it does relate to something which causes my sugars to soare each and every time I do it. I have a track record clearer than the shadows on the video of the moon landing. Clearer than the lack of WMDs in Iraq. And clearer than the paper mache on the Roswell 'alien'. Yet I still choose to engage in this activity in a self-destructive way which makes a mockery of the hard work my mother went through to bring my perfect little self into the world.

What is it?

Well, if I told you you should stay away from anything which is packed with anti-oxidants, what would you say? If I told you anything with natural fruit sugar and natural sources of fibre was off-limits, what would you do? If I told you this came from the earth and many countries base their primary economic income on it, what would you think?

Yep, you guess it. Fruit.

I love nothing more than to sink into a giant pot of fruit. Strawberries, blueberries, pineapple, watermelon, honeydew, gala. I could sink my teeth into a blood orange until the cows come home and enjoy every second unflinchingly.

The thing is, if I wasn't afflicted with a defective pancreas and blood sugars who love a good roller coaster style curve I would probably be considered very healthy. I have never in my adult life struggled to get my 5 a day because I love fruit and veg. But the impact of my reckless lifestyle is that my blood sugars - usually relatively stable - go completely haywire.

Every. Time.

My biggest diabetic frustration (other than the fact it picked me in the first place) is that when I eat any kind of fruit I jump from 7.5 - 13mmol (as I have done today). I could take my pancreas, rip it out and go all Tarantino on its ass. Trying to explain to non-D's that fruit is more damaging to a diabetic than a tub of lard is like telling Victoria Beckham that a sandwich never killed anyone and sometimes even accepting it myself is pretty tough. If I didn't need it, my testing kit could easily have been launched from my 4th floor office window today.

Today when I woke up at 6.30am, I was 7.4mmol (133 mg/dl).

At 7.30 before I ate my omellete. I was 7.8mmol (140 mg/dl)

At 9.45, after my omellete and just before I ate (and bolused for) my bowl of fruit , I was 7.0mmol (126 mg/dl).

Then, at 11.15am and after having thoroughly enjoyed my fruit, I was 13mmol (234 mg/dl).

I have read so many accounts of people who pride themselves on having fantastic sugars and swearing by a low carb diet lacking in any fruit, who claim to be healthier than all those who around them. I am sure that I could have kept up that 7.5 trend until dinner tonight had I not wanted that fruit so badly. But that's just it. I want to eat fruit. If we were talking straight up liquorice, sweets, cane sugar and milkshakes I could understand it.

But it's fruit!

I don't know what the answer to this one is and after 24 years, I doubt I ever will. But being honest about the fact that this diabetic issue both infuriates and baffles me, makes it a whole lot easier to manage.

Anna - off to eat a giant piece of melon and screw you Mr D!

Wednesday 22 June 2011

Improving Access to Medical Technology

It's no secret that I love all things diabetes. Except having it that is which is no fun whatsoever, by the way. Other than having the odd funny hypo story or day when I get all under my blood sugar levels under 10 (which seems to coincide with a full moon, strangely enough), having diabetes is the biggest challenge I will ever face in my life. Fact. It can be worrying, frustrating, angering, tiring and annoying to say the least. And when you really upset the gods, these happen all at once.

But in recent years I have learnt that if I harness the energy I put into diabetes and channel it the right way I seem to meet fantastic people, I get involved in projects of which I am terrifically proud and I achieve things I wouldn't have thought possible.

This week was one such week. Thanks to an invite from Lesley Jordan from INPUT (the UK's largest patient advocacy service), I was invited up to Westminster to take part in (well, attend more than take part , really) one of the new All Party Parliamentary Groups (APPG) on Improving Patient Access to Medical Technology.

So what do these APPGs do? Well, until yesterday I wasn't sure myself. But with such a distinct and provoking title, I wasn't about to miss this one. After all, I make no secret of being very grateful for being one of the 'lucky' people to benefit from an insulin pump, but also that I find it frustrating that so many others out there are not afforded the same treatment. So with a title promising to make for extremely interesting participation, I gladly accepted Lesley's offer.

After jamming all my work for Tuesday into Monday, I boarded my train and headed for London feeling very excited but also admittedly baffled that I had somehow been invited to such an important event. I met with Lesley at Waterloo, where we had a quick Subway lunch (low carb and blood sugar friendly of course) and made our way to Parliament.

To give you a bit of background on the APPGs, they are a parliamentary group which are set up for any number of reasons and to discuss any range of issues: there is one for diabetes, there is one for climate change, one for dementia, breast cancer and even one for beer (with over 300 MPs in membership, I might add!). The list goes on. In order to set one up you need at least 20 MPs who are willing to be members of the group, which can be both a positive and a negative. The positive is that you can get some real weight behind you (see earlier beer group comment!) and get some big names into the group. The negative (pessimism informs me) is that it would be a mighty fine thing to put your name to, without really having to get deeply involved. But either way, the point of these groups is to discuss an issue, any issue, which deserves appropriate attention and to raise its profile in parliament. It allows those who attend to be better educated on current issues and hopefully in future to bring about change.

OK, that's the groups in a nutshell. Now for the specifics. This APPG appeared to have 21 MPs (including my local Lib Dem MP and Portsmouth City Councillor......) and in attendance were a number of key people professors, NHS Commissioners (the ones making and re-making decisions about your NHS), representatives from NICE (National Institute for Health and Clinical Excellence), INPUT and The Chairman of the Medical Technology Group (MTG), Barbara Harpham. And what was the purpose of the group? Well, exactly what it says on the tin: to discuss reasons to improve access to medical technology. This particular meet was focused specifically on Orthopaedics, with fast-paced and fact-packed talks by Professor Peter Kay (no, not the rotund dude who owned the Phoenix Club and toured the country with his mate Paddy), but the President of the British Orthopaedic Association, Professor Tim Briggs (Medical Director of the Royal National Orthopaedic Hospital) and Ros Meek (Director of ARMA, the Arthritis and Muskuloskeletal Alliance).

Now you may think all that sounds great and all, but what does that have to do with Diabetes? Well, a lot it turns out. I arrived thinking this would be an exercise in experiencing what goes on in these kind of parliamentary meetings because frankly, at times we all [quite rightfully] question exactly what our government is doing. But it turns out that Diabetes isn't the only disease whose battles are plagued by NHS red tape and procedural flaws. The talks given highlighted the way in which the NHS is fast becoming an emergency service, rather than a health service and that often treatment is simply not given until people are suffering and complications have developed far beyond those seen at the point of diagnosis.

Sound familiar?

As the meeting progressed, I found myself grunting and nodding along more and more enthusiastically in agreement with the points being raised and if the words 'orthopaedics', 'knees' and 'hips' weren't being used, could easily have mistaken the discussion for one about diabetes. In fact I got so grunty I could even have been mistaken for an MP myself - having become quite used to giving a long "urhurumum" when I heard a point I agreed with. Funny how being in a parliamentary meeting turned me into a little parliamentary sheep.

So, the crux of the matter. Do you get a pump - proven to minimise diabetic complications, improve quality of life and offer much better glucose control - when you are first diagnosed? No, instead we need to be suffering debilitating hypos or have a raised A1c (a sure-fire path to complications). You have to be DAPHNE trained and prepped up to the eyeballs before you are even considered for a pump. In fact, Barabara Harpham summed it up perfectly when she pointed out (even though the discussion was orthopaedics) that in the United States there is a 35% take up of insulin pumps, in Europe the figure is 20% and in the UK, worryingly enough, this figure is just 3.5%. THREE POINT FIVE PERCENT!

The big message I took away from yesterday's meeting was that in fact the battles faced by diabetics are worryingly similar to those faced by every other sector of the NHS. And with the challenges faced at the moment, what new barriers will be introduced in order to cost-cut and penny-save.

It could be easy to walk away from a day like yesterday filled with hope that in the next 5 years every diabetic (even those currently ruled out type 2s) will have access to a pump. But politics is just that, political. It is hard to know who was present yesterday in order to take this issue forward and work towards creating a National Health Service which doesn't just meet basic needs (which we all know on many occasions it doesn't do), but offers services and provides technology which can not only improve the lives of the public, but also save huge amounts (we are talking billions) of pounds long term. As Prof. Tim Briggs kept re-iterating, it is about finding the right treatment for the right patient at the right time.

Yesterday was fascinating and the optimist in me sees such groups as a real opportunity to impress the importance of offering patients appropriate and life-saving medical technologies at the earliest possible stage, rather than how the system currently does it, at the point of no return. But I also have to remember that there were only 30 people in that room yesterday. The job is ours to take this forward and continue to impress on policy-makers the absolute importance of making the most of medical technology.

My biggest question resulting from yesterdays meeting was "What's next?", because I am all too aware that the seemingly passionate involvement of the people there yesterday could go no further than be shelved until the next meeting if we don't keep pressing this issue. But the fact is even if yesterday's meeting only served to educate one or two of the MPs in attendance that medical technology is key in saving money, improving lives (both medically and emotionally) and in creating a National Health System we can be proud of, then it is already an achievement in itself.

But the reassuring thing for me was to see people like Lesley in her absolute element and making a bee-line for the Chair in order to dive in and get straight to the nitty gritty. It was reassuring to see that medical technology - which is ultimately going to be the saving of us - being discussed with such passion, and it was reassuring to see Type 1, which dare I say is often forgotten or overshadowed in the media by Type 2, being given such worthy attention.

To see who else out there is fighting out corner, click here.

Saturday 11 June 2011

Sensor update

I have now been trialling the Medtronic Enlite CGM sensor for around 4 weeks and feel that as my trial draws to a close and the time when Medtronic will have to rip the sensor from my tightly clasped hands draws closer, it might be time to fill you in on my experience.

The people at Medtronic have been openly proud (and rightly so) about the improvements they boast on their new Enlite Sensors. These improvements include a 69% smaller sensor and an automatic inserter which not only allows for much easier insertion, but also hides the needle; a big deal if you're jabbing it into a kid or needle-phobe (I know, needlephobic diabetic- tough break! ). Along with this they claim improved accuracy (98% of hypos detected) and a more comfortable wear in general. Big words, I know.

I have now had a full month of wearing sensors and feel I have experienced enough to give you a decent idea of what a difference there is between this and their primitive version, the Sofsensor. I mean, I could have updated after 2 days, but having been so pleased I was offered this trial in the first place, it wasn't going to be all that unbiased was it?

Let's start from the beginning.

The smaller sensor

Having had a chance to directly compare one of the old sensors with the new, I was already impressed with the smaller sensor before I even attached my first Enlite. The sensor was visibly thinner, shorter and perhaps most importantly if you brushed your finger over the end of it, felt like a hair compared to piece of metal. Unfortunately my old laptop has died a technological death, which means I have also lost the photos of what my stomach looked like when I tried to wear the old sensor for 8 days (which is probably convenient for Medtronic - not the best advert I've ever seen). Other than the immense irritation, apparent under-skin bleeding and lump that I was left with, the truth is the accuracy was so poor that it really didn't seem to be worth it.

Well so far this time around although I have unfortunately not been able to get more than 7 days out of a sensor (although some friends also taking part in the trial managed 12), the comfort is not what has stopped me carrying on. In fact, after a full 7 days there was no point at which I felt irritated, sore or even particularly aware that I was wearing the sensor. Compared to the generous 3 days I managed without irritation last time, this difference was huge. I can also advise that the friend who did make it to 12 days told me that she removed it due to waining accuracy, not due to irritation. Not bad for a product with a guide of 6 days, ay.

So it's all round thumbs up on the smaller sensor.

Automatic Insertion

This one is another big thumbs up for me. I don't think I felt particularly repulsed by the other inserter Medtronic had in place, but having said that I also wasn't aware of how much I disliked injecting until my first week on the pump had passed and I realised that ever injecting again appealed about as much as a roll in the hay with Noel Edmunds. The fact is the new device (below) means no more faffing about removing tabs and flaps and worrying that if you unflap the wrong tab before you untab the right flap, you will have lost the sensor all together. With the new inserter you don't even have to touch the sensor until you are removing the needle after it is already in. It has even been designed so that you can remove the sensore from the box and straight into the inserter, without even touching it. The casing is also recyclable, for those trying to ease the load on our plastic planet. Jamie and I now have sensor change day down to a fine art and thanks to the improved adhesion to the skin (by ensuring the sensor is fixed flat to the skin rather than 'flapping about') the wearability factor has gone up ten fold.

The sexy new sensor

The tip of the scary-ass old inserter, spearhead and all!

We like. We like it a lot.

Improved Accuracy

Due to the sometimes wild readings of the old Sofsensor system, I never really worked out how the sensor managed to detect hypos other than by recognising that your blood glucose levels (BGs) were going up or down, which in itself does not necessarily mean a hypo will happen. You could go from 9 down to 6 which is ideal. A hypo alert now would seem premature. So I have been pretty baffled by the new enlite sensors which have at times alarmed when I was seemingly stable or nudging down very slightly. But far for me to be the one to pick it apart, it has been right almost every time. It certainly allowed me to make slight adjustments like snack on a handful of fruit here and there and manage to bump the sugars up. In fact, having had an appointment with my Consultant last week, he has said that he will support my application for CGM funding, because in just 4 weeks my average blood glucose has gone from 8.5mmol (which equates to an HbA1c of around 7%, apparently) down to 7.4mmol. That difference is just within the last 4 weeks, and I am not sure that would have been possible if the accuracy on the Enlite was not so great.

That being said, I am not here to just 'sell sell sell' for Medtronic and I did have one sensor which gave me some strange readings. However, I can recognise that having had a massive hypo 5 minutes before needing to calibrate the sensor for the first time, and then ending up having a series of badly timed follow up calibrations which collided with several meals/hypos, my transmitter was probably extremely pleased when I in fact took the sensor off 3 days early. The thing about CGM is that when it works well, it is possibly the MOST useful diabetes tool we have at our disposal. When it doesn't work, it is also the single most useless tool. I had several times this week when I was told I was 19.1mmol and going up (in fact I was 13mmol), and one incident where it said I was 6.9mmol and rising quickly alarming that a a high was imminent and when I tested I was 3.4mmol and apparently dropping. I did try turning it all off and on again but that seemed to have no effect. So I turned it off. It is most likely that my poor calibrations and frequent hypos were the issue, but I should still tell you so that you can have the full picture.

All round comfort and experience
Well, I have to say that as for all round comfort and experience, things have moved on hugely since the times of the unpredictable and extremely uncomfortable Sofsensor. I may have to go into hiding so that I can eek out just a few precious more moments with my transmitter before Medtronic cruelly and coldly take it back from me, like ripping candy from a diabetic adult. OK OK, so it's only because they were nice enough to give me this trial in the first place that I have had an opportunity to try it, but either way the message is strong: The Enlite Sensors have landed and they mean business.

If you have an opportunity to try one or are one of the people already benefiting (but only slightly) from the Sofsensor CGM system, I really would recommend getting a handful of the Enlite sensors. You won't be disappointed.

Medtronic's claims are not just a selling ploy, they are grounded. Of all the people trying the sensor in this trial, I have yet to find out who has not been impressed. Strong words for a bunch of talk-a-write-a-holics who love nothing more than to pick apart the system.

Anna - heading in the direction of Rio with a backpack full of food and transmitter still attached!