26 April 2012

Diabetes: ignorance is certainly not bliss

I'm sure that many of you will have seen the delightfully sensationalist headlines in the Papers today: "Diabetes will Bankrupt the NHS" and others to that effect. I first stumbled across the story whilst on the BBC News website during my Economics class this morning, and naturally felt compelled to read on following this (rather dramatic) statement.

I understand that there is no denying the figures in terms of cost. Furthermore, I am not for one moment saying that the amount being spent is good; neither for the country in terms of trying to curb spending, and that it reflects the extent of diabetes-related complications. However, what infuriated me was that, just beneath the headline, there was a picture of a person standing on scales (see picture below); moreover, visit The Guardian and just beneath their headline: "Diabetes threatens to bankrupt NHS", you will see a picture of a clearly obese person - the two together practically scream at readers "look at these fat people wasting all our money", not something I have to say I would have expected from a newspaper that I have always respected, and thought steered away from 'tabloid-style' sensationalism.

Diabetes assessment  BBC News Picture
One thing it  does, is immediately isolates not only type 1 diabetics but also many type 2s. I have never and will never be one of those Type 1s who sits on their golden throne and looks down on Type 2s, something I have seen before in forums, comments on newspapers etc... Just as it is completely wrong to believe that certain cancers are always linked to smoking, many type 2s did leave a healthy lifestyle prior to diagnosis. In the case of  nearly all Type 1 diabetics, nevertheless, that 'obesity' picture is both insensitive and so destructive in trying to educate people about the condition. I distinctly remember when we studied Diabetes in Biology for my GCSE course. The distinction between Type 1 and Type 2 was very unclear, and I remember always telling my friend next to me to write "Type 2 Diabetes", as one of the potential consequences of obesity/bad diet. Type 1 is an auto-immune disease, and I always get a sickening feeling in my stomach whenever I read an argument/ hear someone talk about diabetes and imply that it is somehow 'your fault'. Just because 90% of diabetes is Type 2, there are still around 300,000 people in the UK who fall into the 'other category' (Type 1).  I was diagnosed when I was 7 (Juvenile Diabetes) and cannot really remember my life without the condition (condition, not disease). One of my vivid recollections in that first Biology lesson was people turning to look at me when 'obesity' was mentioned, some with looks of confusion on their faces, as if they expected to see some gigantic whale sitting where I should be!

It is very easy to picture diabetics sitting eating burgers and 'denying' the problem - and don't get me wrong, there are many who do continue their lives and ignore the realities. On the other hand, I do not feel it is fair for anyone to pass judgement on those who do struggle with either Type 1 or Type 2, if they have never had the condition themselves. I am certainly no saint, and am presently struggling with low blood sugars and have been warned about the potential 'long-term' impact. But then the same could be said if I was having lots of highs. For many Type 1s (including me) it is a fruitless task to try and maintain control. My diabetes is like a crazy yo-yo that never seems to tire from swinging me back-and-forth. It can be so draining, and many times I do just feel like giving up.

The 'costs' in the articles today referred to complications, yet The Independent article did not even mention the Type 1/ Type 2 breakdown, of which significantly more is spent on Type 2. Additionally, The Guardian only added the statistics in the final paragraph, and only after complaints from on-line readers; the end of the article read: "amended on 25 April 2012 to clarify the different causes and costs relating to Type 1 and Type 2 diabetes." It should have been the first thing written! Otherwise people will have made snap-judgements on the 'wasteful' money. I just found out last week that once I leave the Children's Clinic (this summer) I will no longer receive any funding for the Continuous Glucose Monitoring, and although not essential for me it is frustrating to read about how too much money is being 'wasted', and still I will not have this.  I believe the root of the problem lies largely with the misguided advice of Diet 'experts' etc.. in the last 25 years or so. Whilst they have advocated a 'low-fat; high-carb' diet, they clearly haven't taken into account that this is possibly the worst thing for BG control. Low GI foods cause BG levels to rise so quickly, often why it is better for Type 1s to inject insulin a bit prior to eating foods like Pasta etc... and Type 2s to be more weary about the volume they consume of these types of food. If the 'proffesionals' would focus on changing their tune, and advocating the 'lower GI carb' route, this could see huge steps being taken to help reduce the number of new Type 2 cases. Some of the money could then be invested in other areas of treatment, possibly for Type 1s such as CGM or increasing funding for insulin pumps for; this is still quite low, yet it improves control so much so could help reduce costs that derive from later complications.

The main sense of frustration I took away today was the destructive impact it will have on society's already tainted perception of diabetes. There needs to be a clearer differentiation between the two Types, because apart from the common link of blood sugar levels, both treatment, and often causes, are completely different. Furthermore, the old 'obesity' image that goes with every article on diabetes is just pure ignorance, plain and simple, and I would have expected so much better from the websites that I visited to read their articles on this story, including the BBC. A comment on one of the articles even proposed gastric-bands as 'diabetic surgery', as it makes people 'eat less' - this just demonstrates the hugely inaccurate cultural view of diabetes as a whole, and is something which needs to change.
At the end of the day, I did not play any part in having this condition; it was just the hand I was dealt with and I have tried my hardest over the last ten years to accept that: this is what it is, I can't change it, so I have to make the most of it. However, considering this I hope people will be able to understand the frustration that I share with many others, on being imagined as this 'lazy, overweight, money-wasting' teenager - I'm a size 8 for goodness sake and my favourite food is strawberries! Through no fault of my own, I have a tube inside me 24/7, most likely for the rest of my life, and BG test about 8-10 times a day, not to mention the emotional roller-coaster that is having to live with the constant highs and lows. And although I am not stereotyping Type 2s in any way, shape or form, there are some cases that do stem from diet/lifestyle/obesity - to be grouped with this in one 'generalisation' is therefore quite upsetting.
In my lifetime I really hope to raise awareness of diabetes; I've started already with my peers to try and change some 'diabetes stereotypes', including the: "will you die without insulin?" and "will you have diabetes for life?", some pretty basic things but I'm getting there! And although it is very tempting to feel extremely irritated with them, in reality it is not their fault - there is just so little education. In the US I feel there is a greater sense of understanding, as the condition is so much more common, not just type 2 but type 1. I really hope that in the future this spreads to the UK, and that these stereotypes are removed. The first step, however, is with the media who display such a lack of knowledge and consequently worsen the situation. Diabetes UK are big supporters of improving this, which is why it is so important to show support.

And finally, just to prove my point about the 'stereotype'...

Type 2 diabetes
The photo at the top of the Article by The Guardian


21 April 2012

Frozen Yogurt: A Diabetes Dream!

For the last few years, on the other side of the Atlantic "frozen yogurt" has esculated in popularity, thanks to Hollywood's championing of it as a 'healthy' ice-cream alternative. However, it has yet to take Britain by storm and, after having had my first 'fro-yo' experience a couple of weeks ago, I have just one question: "Why not?!"

My older sister is currently studying for a year at the University of Mississippi as part of her degree, ('Ole Miss' - any fans of 'The Blind Side' will know what I'm talking about!) and this Easter Mum, Dad and I went out for a week to visit her. Ever since she'd told me about the "Ya Ya's Frozen Yogurt" shop in the Univeristy Town, Oxford, (which is literally like stepping through a time portal) it had been on the top of my "to-do" list when we got there; mainly due to it seeming like such an 'American thing' to do, along with drinking a Starbucks iced latte and going to a baseball game!   

So the day before our trip ended, (after having nearly fallen to sleep during the baseball game!) we went into Oxford to Ya Ya's. It was AMAZING! The average serving only contained about 10g carb, which shocked me, and is also made with fat-free yogurt for those 'health-conscious' celebs in Hollywood. The flavours range from Tirimisu, Peanut Butter and Birthday Cake, to fruit ones such as Mango, Watermelon and Apple Pie! And then there's the toppings. I didn't try the more chocolatey ones and the sauces, but they had a huge selection of fresh fruit, including my favourite: Strawberries! I had as my flavours tirimisu, cheesecake and a tiny bit of peanut butter, with fresh fruit and nuts - 15g bolus and my blood sugar was 7 about 2 hours later! And the great thing about it is that you don't get that sickly feeling that sometimes comes from eating ice-cream. It is so refreshing and the perfect snack, and much better for BG control too; ice cream can often send mine high.

The 'Frozen Yogurt Bar'; think Pizza Hut ice-cream machine!

Our frozen yogurt experience was a bit of an epiphany, with my Dad forming in his head a 'global' empire of frozen yogurt, (I suggested we go on 'The Apprentice' for Lord Sugar's £250,000 business investment....) and making my own realisation that there was an alternative snack to fruit that Mr Diabetes wasn't going to throw a tantrum over. Since we've come back my mum's had a go at making forzen yogurt, and it really is the simplest thing to make: non-fat greek yogurt, condensed milk for sweetener and then the fruit/flavour of your choice; we had rasberries, which we blended first. It was delicious and perfect after a filling dinner. It is now going to be my summer staple snack, and I've already made a list of 'to-try' flavours, including green tea and pumpkin! 

There are many benefits to living as a type 1 diabetic in the UK, most obviously not having the financial pressure of equipment. We've only really had that when I've needed strips, so have gone to Boots only to stare with abject horror at the £35 price tag for one box of 50 (that will only last me a week). It does make me appreciate just how lucky I am, that everything I have is paid for (including my insulin pump). The only thing I may potentially have to pay for in the future is the CGM, which costs £60 per sensor, due to a shortage of supply, and even then it is not like it is an essential piece of equipment.
However, in the US there is one great advantage being a Type 1. Everything in stores is labelled clearly with carb/sugar for each portion, whereas in the UK i've had to become an expert at trying to convert things from 'per 100g'. But also in the US, there's great food available for diabetics. Whilst bolus is calculated on carbs, not sugar, things that have a reduced sugar content means that your blood sugar doesn't 'spike' so quickly after eating (my body isn't great at absorbing insulin quickly, so it's not good for me to eat things with a very high sugar content). So we bought some 'sugar free' oreos (continuing the 'US' experience!) which have been great as snacks in terms of maintaining BG balance.

One of the things I hate is seeing my BG rise, as highs for me are always the most horrible feeling;  'breaking the rules' when it comes to eating really isn't worth it, as the after-effect is much worse than the positives before (we've all had that moment when a slice of icing-coated chocolate fudge cake has been too hard to resisit!); for me even a simple snack-bar can send my BG sky-high.  In the US though, there are 'diabetes-friendly' alternatives for nearly everything, that isn't tthe british concept of 'diabetic chocolate' which is disgusting and just as anti-blood sugar as real chocolate!Frozen  Yogurt, therefore, is for me a diabetic's dream. It is absolutely delicious and more fun than ice-cream, in terms of flavours and all the amazing toppings! But it's also healthy, low in sugar - BG friendly and not so filling therefore great for an afternoon snack. I really hope frozen yogurt finds its way across the Ocean to the UK, and if not you might just see a certain seventeen-year-old on next year's Apprentice UK, going on about a 'new, amazing business concept'...!



18 April 2012

That diabetes feeling

Sometimes with diabetes you do just have one of those days. I know whenever I wake up with my BG either low or high, the day has already got off to a pretty negative start. Not only do they naturally make me 'a bit' less tolerant with everyone who is unlucky enough to be around me (poor parents!), but it naturally makes me feel quite down with myself too. It also means that the chances are my BG will be more unstable for the rest of the day, as if it's low there'll normally be a bounceback mid-morning.
More often than not it's high though, so I have to correct - luckily for me, insulin seems to fall half-asleep once it's in me, taking about three hours to work before it acts like it's suddenly been given a can of red bull, causing my BG to plummit just in time for lunch. I almost had a new record low of 1.9 a few days ago (Mr Easter Lindor Bunny is now headless), after being 10.8 before dinner, which wasn't a pleasent feeling!

It is very easy to feel a bit like a yo-yo sometimes, contanstly going back-and-forth, back-and-forth. The trouble is, when I download data from my metre it has quite a high % of lows and highs, but that's only because I tend to test whenever I have warning signs (these have their positives and negatives!). I've got another hospital appointment tomorrow as they're concerned about the number of hypos I'm having, but that's only because I test about every 15 minutes to check my BG is going up - I was always taught "test, test. test!" For some reason though, I don't know if this is just me as I have never really known any other type 1s to ask about this, but I don't find lows as bad as highs. I feel far more out of control with a high, and it takes me far longer to 'recover'. My doctor however takes a very different view! :(

It can be demoralising when your BG just never seems to be in control over a period of time. Since my set change on Saturday, my blood sugar was running slightly high  (10-12 on average). I was correcting but it was constantly high, and I wasn't eating any differently. I was going to change my set, but thought that if my set wasn't working, it would have been much higher. Anyway, I felt pretty awful all weekend and was probably a bit of nightmare to live with to be honest! I did a set change Monday morning as I had reached breaking point, and by 10pm (3 hours later) I was 17 - that's an example of a set not working! After I changed it again though, in a few hours I was 3.6! Because I hadn't had a low reading in a while, I felt absolutely terrible and probably worse than I did this evening. Because of this, I proceeded to over-correct by eating lots of dried fruit, so got the bounceback again that evening. That is one of the really hard things when you're low. Sometimes I feel like I could eat a house, I'm that light-headed and hungry. And because food is like insulin for me and preferring the dawdle than sprint method, as opposed to a steady jog (to be fair, it sounds quite like me running in athletics...) my BG will stay low than suddenly shoot up to the low teens (it's 12 now after the 1.8 earlier).

Today was much better, apart, from this evening - during school all my readings were in range. Nevertheless, sometimes it feels like I can never win.  Has anybody else had one of those days recently, where their BG levels can't seem to be stable? I'm trying to stay positive however; the thing I always tell myself on days like this, before I go to sleep: always keep smiling. It sounds quite cliché I know, but on my desk there's a picture of me just before I was diagnosed, where I look so happy and smiley - I don't want my diabetes ever to prevent me being like that. At the end of the day I am still the girl in that photo, with the same dreams and ambitions as as before diabetes. So I will always look at that and remember to keep smiing - after all, tomorrow is a new day :)



15 April 2012

CGM: Balancing the Pros and Cons

CGM: Balancing the Pros and Cons

I first dipped my toe into the uncertain waters of continous glucose monitoring when I was about 10 (seven-eight years ago) and all I can recall was the insertion seeming at the time like a full-scale operation, and spending 3 days in significant discomfort. When my healthcare team gave me the new veo insulin pump April 2011, so that I could use the Guardian CGM, I was apprehensive to say the least! I knew how helpful it would probably be, but the thought of insertion alone filled me with dread. When I first started the medtronic insulin pump at the age of 11, I was adament I would use the quick-set (90 degree angle - straight-in). From the age of 13-14 I used the silhouette sets that go in at an angle, and just hated it. The CGM sensor reminded me of this, and the first time I inserted it on my own it took 15 minutes and about 10 'back-outs' before it was inserted. First Pro? It was virtually painless! I was quite shocked to be honest. All that worry and it actually hurt less than my normal set change (which I am so used to by now I barely feel it. As for the actual monitoring. I've compiled a summaritive list of all the pros and cons I found, and of course if anyone has any others feel free to share them - this is all personal experience! Hopefully it can help people decide whether or not to try the CGM if they have considered it, or share experiences with other who use it. I decided to write this after reading a similiar post on the Diabetes Forum.  

  1.  Continuous data. Sounds obvious I know! But really, the data is just amazing. No matter if you test 10+ times a day, you can only ever really see snapshots of your BG readings. With the sensor, what I found so helpful was being able to see the swings - how quickly my Blood Sugar was moving up and down. It also allowed me to work out what foods were better than others. For example I am sure many people can relate to breakfast cereal traumas! (Cheerios is off the menu indefinitely I think!) The sensor showed the different sugar spikes that resulted from this. It could also show me how quickly insulin worked. For example if I did a correction, there are arrows on the CGM that indicate if your BG is rising or falling. If the arrows are falling, I know not to give another connection, even if my meter tells me my BG is still quite high. If for example it was 15 and I corrected, and an hour later it was 12.5. Normally I would give another small correction, but when I was on the sensor a similiar thing happened yet it told me my BG was falling - two hours later it was 6, so it was quite good I didn't correct as I could have had a hypo.
  2. Fingers can have a break! Although you do have to test whilst on the CGM (it is very important not to rely too heavily on it, as it certainly isn't perfect... see one of the cons!) You only need to test about 4 times a day. It says to calibrate every 12 hours, but I tend to do every six hours just to make sure. It is nice not to be constantly testing though. Another advantage with this is that there are no errors due to contamination - if you've been eating and your hands have not been cleaned thoroughly, it can result in errors (i've experienced this a lot!) 
  3. Comfortable to Wear: If you're on an insulin pump already, it really is no hassle to wear. Yes, it's a bit more bulky because of the sensor attachment, and the first time I was so paranoid it would fall off! (Best to put some adhesive tape over it, just to make it really secure). It really is tiny though, the sensor. Definitely thinner than the medtronic canulas for the sets. And insertion really isn't as traumatic as I thought it would be! I tend to insert in the top of my thigh, side of my back - used to put it in my stomach but that hurt far more.
  1. It can be irritating! The sensor has loads of alerts available, probably the most common being the predictive alerts. I mentioned earlier about the arrows. The predicitive alerts literally predict a set time before a high or low will occur. My BG is constantly changing at the moment, and so the first night of my most recent sensor I was awoken no less than ten times by my pump beeping with low and high predictions - at no point was it ever really low or high! I eventually disabled the setting at night, but then had another delightful surprise when it went off in an english test! Now I choose for the moment not to have any settings on except the low suspension (that is useful at night), and instead look frequently throughout the day at the graph on the pump screen.
  2. Supply: obviously in some countries it will be expensive as you cannot get the sensors on prescription. In the UK, however, my Diabetes Specialist Nurse told me that there has been a shortage in supply - it took about five months to get a new batch of sensors! Ordered them early December and only just received them 2 weeks ago...! And each batch does only contain about 5-6. This does bring me onto my second con:
  3. Change of Routine: The sensor is amazing, there is no denying that. However, this does have its downsides. The second time I used the sensor it went so well, and about a week later I put in another one and it therefore became routine for me. The trouble is, when I went back to just finger pricks it was really strange, and I did become quite paranoid testing all the time. I suppose to some extent it's comparable almost to going from injections-pump. I couldn't imagine going back to injections now, as the pump is part of me really. I cannot use the sensor all the time simply because of funding, supply etc... but it is hard when you stop using it.
  4. I mentioned above one other thing too: Becoming Paranoid. Although the continuous data is fantastic, it does mean that everything is laid bare - nothing is concealed. I remember at an appointment recently I was telling my consultant how much I hated seeing my BG high about 2 hours after breakfast when I test. Although since I was diagnosed ten years ago it's been drilled into me "test every two hours!" she said to me "just don't test then! Then the reading won't be high!" Logical... anyway, the whole point is that the sensor is always testing, and shows everything in all its glory - good and sadly often bad. The last sensor I did was a nightmare, literally a yo-yo going crazy! It can be a bit demoralising, and you can't just ask the sensor to please not record after breakfast becuase 'I know I go high then...' This links to the first point about the predictive alerts
  5. This brings me onto the final point. The sensor is not always perfect! I don't know where my last sensor was getting data from, but it certainly was on a different planet to my BG meter! Normally the sensor takes about 1 day to 'sync' and then the final day (5) goes a bit off kilter. However, the first night that I mentioned earlier - it told me my BG was 20 when it was actually 8! And then the whole of the next day it went really low when I wasn't low. May just have been a bad sensor, but this is why it is so important to keep testing.

On balance, the CGM is such an amazing development in diabetes treatment; one step closer to closing the 'loop', in that it finally connects Blood Sugar to a certain extent with insulin delivery - the low supension etc.. I hope that in the future it will become more widely available, as for me a definitely found that 5 days wasn't quite enough to get sufficient data, although of course it has been so helpful in seeing patterns etc... When uploaded onto the computer, I can easily see - ok, I'm going low every morning at about 5am, so let's knock back the basal from 3am to stop this. It is fantastic. Yes there are cons, but with time I think those can be eliminated.
So yes! I hope this is helpful for anyone not sure about continuous glucose monitoring, and of course if anyone else has any pros, cons, do reply to the post - the more information the better!

Sophie :)
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