Defense of my trusty pen – by Helen May


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As I’ve mentioned before, I was diagnosed with diabetes in 2002. Until then I knew very little about insulin and how to deliver it. To be honest, I still thought syringes were used. So I was very pleased to see my executive-looking, silver pens. These pens have accompanied me everywhere (up mountains, over sea, along cliffs, …) ever since. They have treated me well. Once I got the hang of using them, they helped me maintain an Hb1AC which the diabetes consultants I see are happy with year after year and, in return, I have tried to look after them.

In the last few years, I started to hear about these new fangled devices: insulin pumps. My immediate thoughts were:

• I do fine with my pens, thank you very much
• Eurgh. Why would I want a piece of machinery stuck to my body?
• What happens at airport security when you’re wearing a pump?
• What do you do with the pump during “intimate moments”?

In other words, “No thanks”…

But recently, I have read more any more about pumps: fellow Diabetes UK bloggers are writing about their experiences and recently, the Scottish government has announced investment into providing insulin pumps to children. So I started to question whether my negativity was a sign of me being stuck in my ways and avoiding change: perhaps a pump could provide even better control than can be gained by me and my trusty pens. So I’ve started to research more about them.

Apologies to all pump users reading this: you know all of this (assuming I have it correct): but I will try to explain my thinking to the pump-less community

First, I wanted to know what a pump looks like. Will it restrict what I wear by showing through a close-fitting sweater? I guess size-wise, it’s not too bad: about the size of a mobile phone. Any smaller and it may be too fiddly to use but it’s big enough that you would see it when I go to the gym. So, size is not a reason to avoid a pump. But the rest of the look is … functional. Insulin pumps are not meant to be fashion items although one suggestion is to wear it on your belt: I picture gadget girl with phone, pump, multi-tool, gps, … hanging around my waist amongst my climbing equipment.

Next, how do they work? From what I understand, they use fast acting insulin which is injected constantly to replace my current long-acting basal insulin. This can be adjusted to manage the need for more or less basal during times of illness (more insulin) and exercise or alcohol (less insulin). Then when you eat, you dial a dose to dispatch the extra insulin for food or as a corrective dose.

So if the pump replicates the pens, why do pumps produce better blood glucose control than insulin delivered through a pen? This is a question I have not been able to find an answer that I am satisfied with. Looking at the research done, it is certainly true that there are improvements in control. Some of these have come about with the extra education that goes hand in hand with the introduction of a pump. But I do not believe this would justify the expense of the pump to the NHS: there has to be more.

It is probably easier to dial up more insulin on a pump than it is to get out my pen from the depths of my bag, attach a new needle, dial up and inject. Maybe, that’s all it is: it’s easier and more discrete so we are more likely to do it. Let’s face it, a disciplined syringe user who sterilises before/after every use could probably maintain good control if they were dedicated to the correct usage.

And finally, are there any other advantages? It was a picture on Daisy’s blog, Diabetic Dais, that illuminated me to another advantage of insulin pumps over pens: some months ago, Daisy posted a picture of her pre-pump used sharps containers. I have often wished I could produce less waste from my diabetes. And by being constantly attached, the pump uses far less needles than my trusty pens. I haven’t found any other benefits yet.

I will continue to read and learn about insulin pumps (although I suspect the only way of really learning is by having one) but, today, I think I would rather lift whatever top I want to wear to inject than be restricted to long baggy tops to hide a pump: I’m happy with my executive silver pens who have treated me well for nine years and look as if they still have a good life left in them … unless I’ve missed something.

If so, please tell me, I don’t want to be left behind because I don’t understand.

Read Diabetes UK’s position statement on insulin pumps.

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I see there is a pod pump that you can attach to your arm. Does anyone use that and what are your experiences ?

I was a type 2 diabetic for the last 5 years howevere for the last 7/8 months I got a very bad BS levels so they think that my diagnosis was not right and I am a type 1 diabetic. Have recently started injecting novorapid and levemir. Reading these blogs is really reassuring and helpful thank you everyone. I am very new to this world of injections but my levels are in normal range now so I am happy about that. I do get hypos at night but as my nurse said it is a trial and error method so I will learn with time how to adjust my insulin. All these terms bolus/basal are new and i am yet to see my dietician to understand how to calculate carbs etc etc…… Thanks everyone

I came back from a meeting with my diabetic nurse today really upset and this blog has really helped. I’ve been T1 for 18 years and always had the Dawn Phenomenon. . My consultant suddenly suggested a pump three weeks ago and since then I’ve been monitoring closely so that they could see whether the pump would help or not. They’ve concluded today that it will help with the high early morning blood sugars ( 4am like clockwork every day). Other than that, like Helen, I can’t see any benefit to the pump and actually think it sounds far too intrusive. Therefore I really don’t want one and did suggest at my meeting whether I could inject Lantus twice in 24 hrs which got a definite no but looking at James’s comment there are insulins out there that you can inject twice so I’m going to speak to them about that first rather than go straight to the pump. Thanks to everyone for their comments – I don’t feel quite so alone.

The main benefit you’ve described though isn’t pump-specific. Why can’t bolus calculators be issued to all those on MDI? The principle is exactly the same.

Hi Helen,
If you have good control and are happy with using pens there is no need for you to look at pumps. You have to meet certain criteria to get one anyway as they are very expensive. Having good control & a good HbA1 would probably not entitle you to one at the moment. I got a pump 16 months ago and I love it. I’ve had diabetes for 35 years and was exhausted all the time, had very low readings at times (in the 1’s), and then very high readings, and felt my quality of life was poor. The pump has given me much better control and as others have said you can easily adjust your basal rate depending on whether you’re exercising, resting or something in between! For baths you can simply remove it. I have the accu chek spirit combo and the pump connects to my handset through bluetooth. The handset checks my blood sugar, I then tell it how much carbohydrate I am having (even with a small snack), it tells me how much insulin I need (to the decimal point!), press a button & I get my insulin. I also use the multiwave setting for when I eat food such as rice, pasta, pizza, it gives you an initial shot of insulin and then delivers the rest over whatever time your pump is set at, or you can use extended bolus if you are having a buffet or meal spread out over a longer time. I aren’t bothered tbh if people can see the pump. I generally wear it on my belt or under a baggy top so no-one is aware, it’s a very small price to pay! I’d never go back to MDI’s but if you have good control on pens that’s fantastic!

I do have to add that while I see the advantages of a pump (and think everyone should be aware of them), I don’t actually use one myself.

Personally I’m not comfortable with the idea of being permanently attached to something. Using pens can be more discreet than a pump and after 14 years of diabetes, frankly I’m sick of having to go through the usual “Yes, I can eat that”, “No, it doesn’t hurt, and would it really matter if it did anyway” and “Yes, of course, I’d be fascinated to find out exactly what your diabetic gran used to eat” which comes up every time people notice you have diabetes. Also, I still have ‘a life’, which means I go to gigs or the beach or catch the Tube – all situations where I’d rather not have a piece of plastic tubing and a needle sticking into me!

It’s for this reason I actually declined an offer of an NHS-funded pump in 2006 (I had problems with all the available basal insulins). I decided in the end to stick it out with Lantus despite the side-effects it causes. However, I do think the NHS and other relevant authorities don’t do enough to highlight pumps – even if the NHS isn’t in a position to fund pumps for everyone, I don’t see why we can’t spell out the advantages so those who can afford them are properly informed. There is a perception that pumps aren’t available in Britain. I am rather sick and tired of constantly reading on US-based diabetes forums messages from UK users whinging that they can’t get a pump because of the Big Bad NHS, as they completely miss the point the only reason many Americans have pumps is because they pay for them, themselves.

Great piece and fabulous comments, which for the first time in ages made me think back to my pre pump days. I’d love to see some stats (if they exist) on how many try pump therapy and revert back to pens. I almost changed my mind the night before my ‘ intro training’. But it was like learning to drive, it soon became automatic to me to run the basics and The world is your oyster in the fine tuning. Yes I’ve had a few weird looks on the beach, but I soon got over that and wear it with pride and gratitude that the technology exists. Without doubt this was the best choice for me, it works best for my manic lifestyle. But we should remember, we are all different. I guess this is pretty similar to a recent debate in my household… just because a kindle exists it doesn’t mean it’s better than a book, (although since that we’ve all tried it and become converts). Perhaps the same applies to the pump and no about of research and replicate your own trial. Good luck to all that do.

Hi Helen

I wanted to write something here as I felt exactly the same as you about the pump.

I was diagnosed in 2000 aged 16. I went straight onto twice daily injections which didn’t suit my active teenage lifestyle (cross country running/netball team/swimming) After two years of struggling on, I was changed over to multiple daily injections using novorapid and lantus. I also went on the DAFNE course which made a huge difference to my life and my control. However, being of runners build (very slight) the multiple injections soon started to give me very sore areas on my thighs, stomach and arms. This, combined with an increase in my competitive sport participation at university started to cause problems – night time hypos, poor insulin absorption, increasing HbA1c… I stopped taking part in competitive sport and generally felt very miserable and resentful of my diabetes.

A particularly bad hypoglycaemic episode whilst on a cycling holiday forced me to reconsider my options for diabetes care. My specialist nurse arranged a trial on an insulin pump and I have never looked back. That was 2 1/2 years ago now and I enjoy the freedom it gives me immensely.

I can tailor my basal rates to my exact demands (it was trial and error at first) depending on the type of exercise I am doing and have run 3 half marathons since starting on the pump – something I would have never considered beforehand.
My job takes me to the Far East several times a year and I have never had any problems with airport security. The pump is magic with coping with different time zones and unfamiliar foods and makes jet lag seem like a distant memory.
The cannulas are difficult to get used to at first, but have made a massive difference to my injection sites and I’m no longer sore, bruised and lumpy.

My pump comes with a handset, so you can administer your insulin in public without anyone knowing…on the train, in a meeting, at the pub…

Like you, I am a little small in the bust department, but do manage to wedge the pump into my bra when I am wearing a skirt or trousers with no pockets. At first I hated it and was convinced everyone could see it, but over time you learn how to disguise it, and I haven’t changed the way I dress at all. At the gym I put it inside a fleece “sock” and pop it into the front of sport bra – its not going anywhere then! People sometimes look at me, but I think it could be easily mistaken for an ipod these days.

If you are considering it, go in with an open mind. It takes work, you’ve got to put the time and effort in to testing and trialling different basal rates until you find what works for you, but once it’s sorted, you’ll be surprised how good it can be.

I had no idea I would speak so fondly of my pump!

Good luck x

Dont think twice, get the pump. I cant add much more to the above comments but as James mentioned the square/dual wave is great for high fat foods. I rarely eat high fat foods and when i do my body takes hours to digest the food so being able to use square/dual wave over anything from 5 to 8 hours keeps the bs level. Also you sound like you have an active lifestyle – this is where the pump has helped me so much. I exercise most days and reduce the basal down to 10-20% for certain classes, ie, boxing, circuits, spin. Yoga and aqua aerobics down to 50% and during long bike rides (100miles) i cut it back to 50% and still take on some isotonic drinks – the pump is so useful for this (you obviously need to test cutting back all the basal rates to suit the individual). I am just about to complete the national 3 peak challenge in under 24hrs in June and i know i need not worry about hypos as i will knock the basal right back to 5/10% and top up on carbs if needed and to keep the energy flow going. Also the sticking the pump down the bra…. i dont have much up top but tend to hang it from the middle of my bra – nobody notices cos i dont have a cleavage!!!! Good luck with your decision.

There are also a few more advantages to pumps which I’m surprised haven’t been discussed here.

The greater flexibility of basal output in a pump is major selling point. It’s been discussed briefly here but I think this needs to be made very clear. Many people with diabetes have what is known as ‘Dawn Phenomenon’ – a process whereby your liver releases glucose into your blood shortly before waking, raising your BG. This can be a major cause of morning hyperglycaemia and is almost impossible to treat using injected basal insulins – particularly if you are someone who has very low basal needs during the night.

On the subject of basals, it’s also worth pointing out that the injected basals are by no means perfect. Lantus has a flat action profile which makes it easier to work with but of course, if your basal needs aren’t flat, you need some other input too. Lantus also has a higher rate of side effects than many basals because of its pH difference. Depending on your doctor, you might find they believe this can cause quite serious side effects ranging from increased persperation to potentially even depression. Meanwhile, Levemir tends to need to be taken twice a day to ensure full 24-hour coverage and for some people it just doesn’t seem to work. And the older isophanes have steep action profiles which can be a nightmare, causing constant hypos, overeating and weight gain. A pump answers ALL of these questions.

Finally…don’t forget the ‘square wave’ bolus function. Foods that are both high in carbs AND fat are obviously bad for you but add a whole new level of issue when dosing. Fat slows down carb release into your blood. Something like a pizza, high in carbs and fat can be very hard to bolus for as the bread will sit in your stomach for hours, pumping out glucose. With a pen, I need to bolus according to the carb intake and then take another 50% again another hour after eating if I am to maintain even basic control. A pump square wave bolus can ensure you don’t get these spikes, giving you more freedom to eat a wider range of foods without compromising your blood sugar control.

First I have to say “thank you”: to Diabetes UK for giving me the opportunity to pose the “what’s so special about a pump?” and to everyone for all their comments.

It’s taken a lot of reading but I think I finally get the different between pens and pump: with a pump you can vary your basal. This is an interesting idea that I had not considered before so need to go away and cogitate. Like many of the people who have commented, I have an active life with its ups (like the adrenalin rush when climbing) and downs (like after a few drinks).

I am yet to be convinced by the size: my bra is not big enough to store a tissue (like my grandmother used to) let alone a pump. And although I am a techy who works with computers, I’m not sure I want to show it off. But you have given me some other ideas to consider.

I am not going to request a pump tomorrow and throw away my executive pens but I am certainly going to think about it again.

Finally, I want to say “Sorry” to Helen W for stealing the limelight from another of her brilliant blogs.

Hi,

As the parent of a newly diagnosed 6 year old I am currently a sponge for information and have found this discussion particularly interesting.

My son is doing fabulously well (and his parents are slowly getting there too!) – his blood sugars are now consistently in the “normal” range and he is getting on with life like any 6 year old boy should. However, having hurt himself injecting early after his diagnosis he is now reluctant to inject and consequently we are making a lunchtime dash to school each day. This is not insummountable and a small price to pay for his health…however pumps interest me as they potential give him back his total independence. However, on the flip side…the talk of cannulas sends shivers down my spine after the night mare we had when he was first admitted to hospital. In my own mind I KNOW it can’t possibly that bad, but it still weighs on my mind!

Our journey is only just beginning and no doubt there will be many questions like these for us to answer.

Marian

My 14yr old son was diagnosed in September 2010. He got control of his ‘numbers’ within three months (he loves numbers so counting his carbs comes very easy to him and his hb1ac was in the low 6’s within 6 months of being diagnosed) and last September he was offered a pump. He thought because his numbers were always really good it wouldn’t affect his bloods but it would make life easier. How wrong we were!!! He received his pump in January and has gone from roughly 5hypos a week to 3 in two weeks. The pump is more exact in the dose of insulin it gives, and the fact that he’s gone from 8 injections a day to 1 every 3 days is a plus. He was worried about it being ‘on show’ but it clips to his waist band of his trousers and hides under his t-shirt. There are loads of skins and pouches that can trendy them up but he prefers a plain leather pouch. The only problem that he has ever had was when our puppies jumped up and caught the tube, but with a little bit of medical tape he rolls the tube and fastens it to his stomach…no more problems! His biggest worry was going to the loo (dropping it into the toilet) so he unclips it from his trousers and clips it to the neck of his t-shirt. He still carries all his other things in a bum bag (or medi-pack if you’re a teenage boy who plays xbox) just in case. Being diagnosed with diabetes changed Shay’s life, but receiving his pump has changed it for the better!!! Give it a try, if it doesn’t work for you, well you can always go back to your pens.

Good luck
Andrea
xx

I think it completely depends on the type of diabetic you are (and im not talking about Type 1 and Type 2) if your diabetes is easy to manage, your HbA1c is normal then a pump will seem like an invasion on your life because you dont particularly need it to stay healthy but for others whose diabetes is brittle, difficult to control, inexplainably erratic or on a lot of small injections a day the pump is heaven sent because it mimics what your body would naturally be doing if it was working properly. I think like Mark posted, that pumps will save your life but only if you needed to be saved in the first place!
Olivia

I feel the exact same as Helen ^^ about the pump, and I was just wondering what you’d do with it in the shower / bath ?

I have been using an insulin pump since September 2010 and wouldn’t go back to injections, it is the best thing I have had to treat my diabetes. It has given me a life I thought I would never have again. My HB1AC control has been alot better and I have been able to do everything I did before pump therapy. I still go walking just adjust the dose of insulin the pump is giving me, I still go swimming the pump can be taken off for that time just adjust the dose of insulin when it is put back on. Work is no problem. Having the pump attached to my body is not a problem the pump just sits in my pocket. Intimate moments haven’t been a problem just take it off. Baths & showers are not a problem either just take the pump off. I love it.

Hi :) I’ve had my pump for over a year now and love it! I was exactly like you before I got it and sometimes I still have days where I’m like I should have stuck with my pens but tbh I wouldn’t change back at all! I’m replying on my phone so if I don’t answer all the questions you’ve asked then I’m sorry! My pump is a nice size I think and tbh as I’m only 18 and go out a lot in tight dresses I can tell you that you can always managed to hide it; leg straps and putting it in my bra has always worked! Sometimes I get the occasional why is your phone inbetween your boobs but no one notices it really! Being on a pump also makes it easier for me to snack during the day as you just carb count what your eating and the pump calculates how much insulin you need! I find it easier when doing exercise as well! Tbh although I have to wear it all the time it’s less hassle than the injections! I think you should give it a trail an if you don’t like it then go back to injections! I know people who have done that :) anyway good luck with whatever you choose! Meghan Brook xxx

Helen,

I feel exactly the same as you do. I was diagnosed in 2004 and have managed to maintain great control through my pens. I started off with two injections of long lasting insulin daily but three years ago I changed to four daily injections and I’ve never had better control. I have read a lot about insulin pumps and how many people find they suit daily life better than injecting all the time. However, like you, I would not like the prospect of something stuck to me constantly under my shirt. Maybe it’s just me but I’m happy with using my pens!

Hi Helen, while i understand your concerns about a new device, all i can say is that my pump has changed my whole attitude to Diabetes. I was not in control of my Diabetes at all when i first registered in Manchester, and because of this, they offered me a pump. Being ignorant to the condition after 21 years, i had no idea what it was or how it worked. With other complications starting to affect my everyday life, i had little option but to have one more go at getting this horrible thing under control, and decided to try it.
The pump basically works by recieving your blood reading direct from the tester, you tell it haw many carbs you are about to eat, and it works out the amount of insulin you need to stabilise your blood, wether high or low. It took no time at all to get my basal and bolus settings sorted, and it takes no time at all to amend them if the need arises. I personally would recommend giving it a test run for a couple of months, it really has chnged, and literally saved, my life.
Best wishes,
Mark

Thank you for making me feel like I’m NOT the only one who just doesn’t ‘get’ what’s so great about pumps!
I was only diagnosed with T1 two years ago & have used pens ever since. My hba1c is consistent and maintained at 6.1, I exercise regularly and my weight is exactly where I want it to be with pens!
I’m the same as you and wonder where the sponteneity would be in those, as you put it ‘intimate moments’, and I just don’t want to be attached to a piece of machinery 24/7.
Friends who wear pumps don’t seem to be able to overcome this for me, so, I’m sticking to my pens….

I was also diagnosed type 1 in 2002, I started on pens, then after 6 months was introduced to DAFNE and about 18 months later got a pump. I have a very erratic lifestyle with 2 teenage kids and also play tennis and take dance classes 5 days a week. The pump means I can control the amount of insulin I take at all times of day. After a class I may reduce the intake by a % for a set amount of time with the click of a button. I can also miss meals if I am running around with no adverse effect. As far as where to keep it, for me it is either a jeans pocket, in the side of my bra if I have no pockets and at night I wear boxer shorts that have a pocket for an ipod(sexy!!) I thought if I had a pump I would never be able to forget that I had diabetes, it has actually made my life so much easier, I wouldn’t go back!

Grwat blog Helen and I totally see where you are coming from! My 9 yr old son Ewan got the pump 3 weeks ago, it’s been like starting all over again for us but his improved BS results speak for themselves!!! The fact he is a young boy takes away your concern of ‘hiding’ the pump as everything he wears is baggy however your very legitimate comment of having a machine attached to you at all times is something we are still getting used to. I put the much improved bs down to the minuscule amounts of insulin that the pump allows you to administer (as little as 0.01 of a unit) / this makes tweaking a very arduous process and at the minute it seems like never ending testing but Ewan seems more free, less restricted and even after two weeks of tears at cannula change time and 2 cannula site infections, he already looks happier and healthier!!!!

I think the biggest advantage of the pump for better control, is the ability of having different hourly basal rates (background/short term insulin). Our bodies (well mine anyway!) require different amounts of insulin at different times of the day. Over an 8 hour period at night, I use 4 different basal rate settings. You just can’t get this type of control/acurracy with a pen.

Hi Helen,

You query why pumps can offer greater control, while seemingly doing the same thing as pens. Simple answer: because of the variable basal (background rate), the pump behaves much more like a working pancreas than pens, which in theory release insulin at the same rate per hour over 24 hours.

Re airport security, you tell them you have one, you walk through the archway scanner, and they swab your pump. Simple!

Intimate moments are also easy – you just unclip it and throw it off someone (just make sure it doesn’t hit a wall or smash anything). Presumably the person you’re getting intimate with will know you wear one and won’t mind knowing you need to do this.