Tuesday, 30 April 2013

Revisiting REPOSE

This blog first appeared on the Diabetes UK blog site on 30th April 2013

It's been nearly three months since I started using my insulin pump as part of the REPOSE trial I'm taking part in, and I thought it was about time I did a bit of an update on how things are going.

I think the first thing to say is that whilst it's only been three months, it feels like a lifetime - and in a good way too.  You might recall that I was somewhat apprehensive about making the switch to a pump, a natural reaction to changing the way I've looked after myself for the last 10 years.  I'm happy to say that, at the moment, those fears were misplaced.

That's not to say that the transition was an overnight success, or that I've not had a few wobbles, but overall I feel like I've had a real, noticeable improvement in how I've felt which can't be a bad thing.

It's hard to say what exactly the cause of that is.  It would be easy to attribute it to the pump because that's the most obvious change, but there are a lot of other smaller changes I've made since I've been on the study which have probably had an effect.

Obviously I've attended a DAFNE course which, as I mentioned in a previous blog was an incredible experience and allowed me the time and opportunity to learn about some of the key things I'd either never been told, or had long since forgotten.  It was also really good to meet other people with type 1 and share some experiences.

I've also been recording my blood glucose levels, carbohydrate portions and insulin doses in a daily diary - something I've not done since I was diagnosed nearly 12 years ago.  I think that must be having some kind of effect as it lets me see the patterns over a few days rather than relying on memory which I've always done in the past.   A knock-on effect of that is that I'm testing my blood glucose more frequently than I ever have - from the dark days of a couple times a week a few years ago to at least five times a day now.  I take my testing kit with me everywhere now and that's certainly something I've never done before.

Having the pump gives me the ability to control my basal insulin more effectively and working through that process has been a real eye opener.  I wasn't previously aware of the "dawn phenomenon" (where your blood sugar can rise as you wake up) and going through periods of carb-free eating to understand what my basal levels should be showed me just how differently my body reacts to insulin at different times of the day.  Discovering I need to double my basal doses throughout most of the morning, just to stay level was a bit of a shock!

Whilst I do feel very comfortable with the pump (sometimes I genuinely forget I'm wearing it and panic that I've left the house without my insulin), I think it's worth looking at a couple of the 'negative' aspects of it as well.

Being wired up to something 24/7 is a constant reminder that you have type 1 diabetes (I joked recently that I'm effectively battery operated these days).  Whilst it's not something that particularly bothers me most of the time, it does make it a little harder to forget on the occasions that you'd like to.

On a daily injection regimen, there was always a small chance that you might inject somewhere that might mean the insulin didn't work as effectively as it should, but it was unlikely that would happen for every injection in a given day.  With the pump, as you place the cannula for three days a time, if you hit an ineffective injection site, all your insulin goes through there for a few days (unless of course, you notice, and change the cannula).  You also run the risk of the cannula not being inserted properly but that's possibly a story for another time.

The overall aim of the REPOSE study is to determine whether insulin pump therapy is more effective at treating people with type 1 diabetes.  Whilst I think it's a quite early to make any definitive statement, I know that so far I feel like it's had a positive effect on me so far and hopefully that will continue into the future.

Wednesday, 17 April 2013

Exercise

This blog first appeared on the Diabetes UK blog site on March 26th 2013

Like many people, I have a love/hate relationship with exercise.  And like many people, I suspect I'm not the only one who finds the hardest part of it is actually getting up off the sofa in the first place.

My particular weapon of choice when it comes to exercising is running.  I remember thinking when I got diagnosed that it was the end of my dream of running the London marathon.  I couldn't see how I could manage something as complex as diabetes whilst doing something as gruelling as a marathon.

Thankfully my specialist care team at the time helped me see that diabetes doesn't have to be a barrier to things if you don't let it.  Whilst I'm sure he might already be one of the most famous diabetics, Sir Steve Redgrave is someone that probably personifies that attitude more than anyone else.

Training for a marathon is a pretty tough business as you can imagine and adapting that regime to take into account diabetes makes it that little bit more complex.  I started by working out a plan for how often I could expect to run.  I suffer from a few other, less glamourous, conditions (mild asthama and shin splints) that hampered me a bit but it gave me a place to start.

After that, I was back speaking to my specialist care team and trying to understand what effect my training plan would have on me.  This was back before I'd been on a DAFNE course so a lot of the information felt brand new (despite how long I'd been diabetic).

The upshot of it all involved running with one pocket full of jelly babies and the other with my blood glucose tester packed in a little plastic zip-lock bag so I could monitor how I was responding to the exertion.  Happily I found I could do about 10 miles before I needed an energy boost and that 4 jelly babies would get me about 4 miles.  That made running on the day a lot simpler!

I learned a few important lessons from that training which I think can apply to any kind of exercise you're thinking about:

  • Always have fast acting carbs with you.  I learned that one pretty quickly after having to abandon a run when I went unexpectedly low
  • Speak to your care team before you try something new, be it a marathon or any kind of physical activity. The hour I spent with a dietician made a world of difference
  • Monitor your BG.  I found that even having pretty good control before I started training, my routine mean things changed (e.g. my sensitivity to insulin at certain times) and monitoring is the only way to understand that
  • Don't be afraid to adjust your doses.  While I was on my two insulin regime, I'd never appreciated I could adjust my basal insulin (nor did I know by how much).  If you're doing lengthy exercise, this could help
  • Do some research - websites like Runsweet are packed with information and tips for all kinds of exercise
  • Make the most of the opportunity.  I was incredibly well supported and raised £1500 when I ran the London marathon.  If you're taking on any kind of challenge, then encouraging people to sponsor you can provide extra motivation for you whilst raising money for good causes.
I think the most important tip is to find something that works for you.  I know that running isn't for everyone but I genuinely believe that  20 minutes of something a couple of times a week not only makes you feel better but can have a significant impact on your quality of life as a diabetic.  I finished the year on an exercise bike in front of the TV as I couldn't run comfortably and that was just as good as dong miles on the pavements.

I'm happy to report that I completed the marathon last April in a respectable, if not earth shattering 5 hours 30 minutes (about 30 mins slower than I would have liked).  My plans for this year are a little more modest, but do include some unfinished business with the Sheffield Half Marathon in May (an injury training for that race in 2008 set me back a lot) as well as four 10km races.

As always, I'm raising money for DiabetesUK and The Children's Hospital Charity in Sheffield (specifically to raise funds for a summer camp for children with diabetes).  I'm aiming to raise £500 this year and if you'd like to contribute, you can do so by visiting my fundraising page (note all money is split 50/50 between the two charities)

Wednesday, 6 February 2013

DAFNE

This blog first appeared on the Diabetes UK blog site on 6th February 2013



As part of the REPOSE trial I talked about last month, I recently attended a DAFNE course.  I'll be honest and say that a couple of weeks beforehand I was still pretty skeptical about attending.  Not so much because I didn't think I'd get any benefit from it, but more that I'd never been given any information about what DAFNE was beyond "it'll help with your carb counting" and couldn't understand how it was a five day course.

That said, after I'd had the pump on for a few days, I was really eager to get started and by the time the course started I honestly couldn't wait.   I didn't feel too apprehensive at the start, as I'd already met half the people on the course when we'd had our pump induction, and I knew that everyone there was in the same position as I was.

I thought the DAFNE course (Dose Adjusted For Normal Eating) itself was very well structured.  We followed a daily timetable with 4-5 sessions per day, building on regular daily topics such as insulin dose adjustment and carb counting/nutrition as well as discussing other topics such as alcohol and exercise.

For the afternoon session on the second day, we were invited to bring along a family member to give them the opportunity to see what the course entails, and to speak openly about their experiences of living with someone with diabetes.  I think that helped a lot as it allowed us to reflect on what those we love have to deal with, which I would guess is a point of view we don't often stop to consider.  I think that afternoon worked really well and having everyone participate in the exercises was great.

What I found surprising (and a tad embarrassing) was the amount of the history/biology about diabetes that I either didn't know or that I'd forgotten.  While I suppose it's all a matter of personal preference, I enjoyed the sessions that touched on that information as I felt like it provided a great base for all the other topics we were discussing.

There were, of course, some more difficult sessions, and the one we spent discussing the long term complications of diabetes could have been uncomfortable to talk about.   We spent the time in two teams, playing a game of which complications could be specifically diabetes related, how they were caused and what could be done to prevent them.  It lightened the mood and allowed us to learn at the same time.

I think as a group we all agreed that being in a safe, open and honest environment with people all in the same situation was one of the best things about the week.  As I may have mentioned previously, I've not actually met anyone with Type 1 diabetes before and so to be able to share experiences, tips and frustrations with a group was such a positive thing.  I was also relieved to find out I'm not the only one who sometimes forgets to change needles and lancets as often as I should!

As part of the course (and over the next two years as part of the trial) we are all recording our BG readings, carbohydrate portions and insulin doses on a daily basis.  We began and ended each day with a review of the numbers.  I think that really helped to build a great spirit in the group and allowed us to share advice with each other.  It was pretty nerve wracking presenting your numbers back to the group for the first time, but by Friday, it was an experience we'd all got into and were going to miss quite a lot.

Being in that environment gave everyone a lot of confidence to speak up and discuss their own situations without feeling judged or under pressure.  That similar feeling when sharing BG levels (some not always the numbers you'd hope for) was valuable in discussing our progress.

It would be remiss of me to talk about the course, the environment and the structure that allowed us all to benefit so much from the week without a mention for our DAFNE Educators.  We were lucky to have three Educators supporting our course all week, two diabetes specialist nurses and a dietician.  Their enthusiasm and encouragement kept us going for the week and I personally think they did so much to help foster the environment that allowed the course to work so well.  Thank you Carolin, Val and Val.

After a full week using the pump with insulin I'm starting to get accustomed to it and DAFNE has put me in an excellent position to feel confident using it and adjusting my doses where necessary.  On a personal level, one of the hardest things I've had to do is learn to curb my desire to try and fix everything at once and adopt a more patient and measured approach to fine tuning my regime.  I'm not quite there yet, but having the confidence and knowledge to be able to make changes should hopefully mean I'll have all my BG levels within target very soon.

As a final word, I'd encourage anyone to follow this link to the DAFNE User Action Group’s e-petition and sign it to lobby for a centrally funded diabetes education programme.  Studies have shown that not only does education help diabetics manage their condition with better glycaemic control and fewer hypos, but that the education will effectively pay for itself within five years.  Please take the time to follow the link and encourage as many others as you can to do the same.

Whilst I may have been skeptical before I started, I'd nopw say I'm a huge DAFNE advocate!  I'd be keen to hear on your own experiences of diabetes education courses, DAFNE or others.


Friday, 18 January 2013

The insulin pump

This blog first appeared on the Diabetes UK website on 18th January 2013


As I mentioned in one of my previous blogs, I'm taking part in a clinical trial.  It's called the REPOSE (Relative Effectiveness of Pumps over MDI and Structured Education) trial and is basically design to determine whether or not insulin pump therapy is more effective at treating adults with T1 diabetes.  The trial splits particpants into two groups, half are randomised to receive an insulin pump and half continue with their daily injection regime.  Everyone then attends a DAFNE course.  You can read more about the trial on the National Institute for Health Research website.

I've been randomised to the pump half of the group and yesterday I spent the afternoon learning how to load operate, fill and attach the pump.  It's currently filled with saline so it gives us chance to get used to wearing the device and having the cannula attached without actually using it to medicate.  It's a Medtronic Paradigm Veo pump which you can find out more about on the Medtronic website

My DAFNE course starts at the end of January and I'll switch over to insulin the night before it starts.  We'll then go through the DAFNE course getting support for the first week before we're left to fly solo.

I wrote in my own blog  before I'd had my hospital visit about how I felt about making the change.  I'm going to discuss my first impressions of having the pump and the "induction" process here.

Firstly there's a LOT to take in.  To get the pump operational, you need to fill a new reservoir, tell the pump to rewind itself (similar to retracting the plunger on a pen), attach the infusion set (i.e. tubing) to the pump and insert the cannula into your stomach.  Of course it's one of those things that will become second nature pretty quickly, but I imagine the first time I try it by myself will take a while.

Secondly, as I alluded to above, there's a lot of stuff needed to make all this work.  The picture below shows you the contents of the goody bag I brough home from the hospital

As you can see, there's a lot more consumables required for a pump than for a pen!

Inserting the cannula was a bit daunting.  As I think I mentioned before, I'm not actually very good with needles and I had a slight flash of wooziness as I was doing it but thankfully that passed.  It's never good to be the one who passes out during the induction!!  I remember having the same feeling the first time I used an insulin pen and now I don't think twice about that.  I think removing the cannula for the first time is probably my last real challenge but as they stay in for 2-3 days at a time, I've not got that far yet!

I don't really notice the pump during the day which surprised me.  I thought I'd be a lot more conscious of the device (currently clipped onto my belt) and the cannula than I actually am.  There's a bout 2 feet of tubing which can be a bit tricky to conceal but it's nothing major.  It was a bit of a broken night's sleep last night but that was to be expected.  I'm going to try running with it tonight and I'm ordering a pouch I can wear to keep it a bit more concealed so I'm less likely to knock it.

Whilst the overall induction process took a lot out of me, I woke up feeling positive about the change.  I've definitely got a steep learning curve ahead of me, but I see it as something to embrace rather than be afraid of.  I'll write a follow up after DAFNE when I've been using the pump to actually control my diabetes and I'll be able to give an appraisal on how well the first week or so has gone.

Tuesday, 15 January 2013

Standing on the edge

"Come to the edge, he said. They said: We are afraid. Come to the edge, he said. They came. He pushed them and they flew." - Guillaume Apollinaire (1880-1918)


Today is a strange day for me.  It's the last full 24 hours that I'll be medicating my diabetes with multiple daily injections (MDI) for the foreseeable future.  Tomorrow afternoon I'll be switching to an insulin pump as part of a two year clinical study aimed at determining what is more effective at treating people with Type 1 diabetes.

I won't go into too much of the detail about the study here.  I'll be writing a blog for Diabetes UK about that later this week (and I'll post it here as well) so if you're curious, you can read that (or drop me a line on Twitter @Broomowl).

This blog is more focused on that greatest of intangible things - feelings.

I genuinely don't know how I feel about it to be honest.  Overall I'm pretty positive about it I think.  As I understand it, the pump will allow me greater control over my condition and allow me to alter my medication much more proactively around things like diet and exercise.  There's also some altruistic benefit I guess as it will help determine whether or not an insulin pump is truly beneficial for people with diabetes.  This should mean that, in the future, people being newly diagnosed with the condition will receive the best treatment possible.

If you've read a few of my blogs before, you're probably familiar with the concern I have that at some point, my daughter will also develop diabetes.  I think the odds are roughly around 1 in 7 so I suppose I'm partly doing this for her as well as me.

The other side of the coin is the fear and the doubt that accompany any lifestyle change.  For the most part, I control my condition pretty well.  I don't struggle to understand what to do or how to comprehend the science behind it all.  I struggle with self discipline.  I'll have some chocolate because I'm feeling a bit down, or I'll forget/not bother to test my blood as often as I should.  It's lazy and there's no excuse for it - I'm my own worst enemy.

But when all that's said and done, with the correct discipline, I can manage my condition pretty perfectly, which is something to be proud of.  But it's taken me a number of years to get to that level and from tomorrow I'll have to start from scratch.

Thinking about it rationally, the principles aren't going to change overnight and the science will remain the same.  I'll just have to learn a new way to practice it.  I don't think it can be quite as terrifying as it was nearly 12 years ago.  I'm also going to be part of a group of people all in the same boat, so I know I'm not alone.

My only other concern is how it will affect the day to day stuff I take for granted at the moment.  I haven't figured out how I'm going to sleep with the pump attached to me yet (though I suspect "not very well" would be a good answer for the first few nights).  I also don't want it to stop me playing games with my daughter because that's obviously a hugely important part of my life.

I think that overall this will be a good change for me once the learning period is over.  There's a chance I might take to this blog a little more frequently to 'think out loud' about it but as a mechanism for ordering my thoughts a little, the blog really helps.  I'm also lucky that I've got a group of close friends that I know I can rely on to help me when I need it.

Thanks for taking the time to read this.

Andy

Wednesday, 2 January 2013

Tuesday, 1 January 2013

2013 - Resolutions and more

Happy New Year!  I hope you're all recovering from whatever you got up to last night.

The first few days in January are usually a time for people to think about what wholesale changes they'd like to make, and then persevere with them as much as possible.  I wrote last year about how I'd been in a similar boat myself a number of times and all my good intentions had fallen by the wayside by late January.

There's traditionally talk of making major lifestyle changes which is usually difficult to achieve.  Not through lack of desire per se, but through the difficulty in overhauling your day to day life and sustaining those changes.  I'm as skeptical as the next man when people say that's what they're going to do, but this year, that's exactly what I'll be attempting.

At the end of this month, I'll be starting a two year clinical study to see if insulin pumps help people manage diabetes better than multiple daily injections (MDI).  This will effectively mean a brand new type of medication, a brand new way of looking after myself and a lot of other changes that affect my day-to-day life.

I wrote in the the very first post on this blog how I do my best not to let being diabetic define my entire life, it's merely a part of who I am as a person.  Whilst that remains the case, a complete change in a medical regime I've been used to for over 10 years will take some getting used to I suspect.

With that at the back of my mind, I've only made 7 resolutions this year but I'm hoping to keep them all (as opposed to the 8/10 from 2012)

1.  Run the Sheffield Half Marathon and the Great Yorkshire Run

As regular readers will know, the Sheffield Half is my nemesis and I'm determined to conquer it this year.  The Great Yorkshire Run eluded me last year as I'd pushed myself a little too much and wasn't able to compete when the day came.

2.  Raise £500 for charity

After raising £1,500 last year, I'm taking an admittedly more modest approach this year (but then again I'm not running the London Marathon this year either).  I'd like to be able to do more for charities that are important to me, but at the moment, I'm not sure how to do that other than run around and ask people to sponsor me for it.  Hopefully I'll meet my target this year

3.  See 12 gigs

This is the same as last year - I just like to be able to have a night out once a month so I'm hoping there'll be some great live shows to see this year

4.  Read 11 books

Slightly more ambitious than last year's 10 - I ought to read more and having got some excellent books for Christmas, I'm confident I'll make this one.

5.  Do a photo-a-day project

This is something I've wanted to do for a long time and I've never motivated myself to do it.  I enjoy taking pictures and I'm probably quite reasonable at it.  I'd like to become a lot more accomplished over the next 12 months and I think this will be a good way to do that.  I'll be posting the results on a separate blog if you want to keep track of them

6.  Keep my weight below 190lbs all year

There's a technicality that means I've got to get my weight back under 190 first (having lost 32lbs last year, a few have crept back on over Christmas).  This one in itself is fairly ambitious as I've never maintained a weigh I'm happy with for more than about 6 months.  I think the fact that I'll be in the clinical trial will help motivate me here.

7.  Run 450 miles

That doesn't sound like too much - less than 10 miles a week shouldn't be that hard when you think about it.  But I'm conscious I could end up injured again and I want a target that is attainable without having to put my body on the line in order to meet it.   I'll be trying for 2/3 runs a week and supplementing that with sessions on the exercise bike at home.

So there you have it.  That's my goals for the year in a few short paragraphs.  It may not sound like too much (and I feel a little like I've copped out), but I think I have to be mindful of what else will be happening this year.

Once again, I hope you all have a wonderful 2013 and that you manage to keep any resolutions you've made.

Andy