I'm just back from my annual review and felt compelled to write a just-for-me blog for the first time in a long time. What follows is pretty much a "stream of consciousness" affair (though I'll be scanning it to make sure it makes sense). It might feel like a mish-mash of previous blogs I've written, so for any regular viewers out there, apologies in advance. By the end, I'll hopefully have done a decent job at articulating my inner voice.
Thanks for reading.
In the last couple of years, I've started to look forward to my annual review rather than dread it in the same way a school boy who's forgotten his homework again.
Gone are the days where I'd spend hours thinking up excuses for why my weight, blood pressure, HbA1c and any other measure you care to mention were all going in the wrong direction. Now I'm in a place where I feel educated enough to spend one of my bi-annual 15 minute slots, discussing my diabetes, any of my problems or concerns and feeling like part of a conversation instead of a lecture. This is, of course, a good thing.
However, what I can't seem to shake is that feeling of despondency as I trudge through a maze of hospital corridors out into the rain and back to my car.
Once upon a time, I'd leave feeling guilt ridden and angry at myself. It got to a point where a consultant pulled out a graph and said "If you don't change what you're doing, this [pointing at said graph] is when your kidneys will start failing". I wondered what the point was. Why was anyone wasting their time on me if I couldn't be bothered to look after myself?
Now it's a different story. Today I left feeling frustrated because I was convinced I'd finally cracked it and that it'd be a bit of a chat, usual questions and checks and I'd be on my way. Not so. Today my consultant (who is without doubt, bloody wonderful), looked at the download from my BG meter and gave that intake of breath through clenched teeth that consultants do and said "look at all these low readings. I'm worried you'll lose your hypo awareness".
Now before I continue to wallow in my hole of momentary self pity, I will say that, of course, she's right. That is a concern, and losing my hypo awareness is one of my biggest diabetes fears. Basically anything you can prefix with "losing" scares me.
Back to my hole... living with diabetes is tough. Not some of the time - ALL of the time. I've had it 12 years and it still kicks my ass. I guess my consultant has a privileged view in some sense as she can look at 3 months worth of data and see the patterns quite easily. I write my BG levels down but I've got a bit lazy at looking for patterns I suppose.
The thing is, high numbers worry me. I know that a lot of high numbers will start to eat away at me and if I can't make them go away I'll feel like I can't look after myself and I'll give up. I've done it before and it didn't work out well. I'm always more likely to go slightly over on my insulin calculations to err on the side of caution because I know it's less likely to lead to a high reading later on. I'd rather have a low reading than a high one (to which my consultant nodded along sympathetically).
I've previously likened having diabetes to walking on a tightrope. Managing it needs a lot of skill and concentration and you need to consider what you're doing all the time. If you lose focus you start to wobble and if you wobble too much you'll lose control completely.
It's easy to cry "no fair" but life isn't fair and I'm not 13 years old any more so I'm not taking that option. I'll keep doing what I've always done - live and learn. There's no silver bullet to make any of these problems go away and so I'll refine my own care and keep working at understanding how my body reacts to this enigmatic disease. As I've said before, diabetes isn't who I am, it's just one small part of me. Sometimes it needs more attention than others but if I'll carry on working to keep the disruption to a minimum.
Wednesday, 16 October 2013
Friday, 11 October 2013
Mental Strength
This blog was first posted on the Diabetes UK blog site
When discussing diabetes, it can be quite easy to revert to familiar topics depending on who you speak to. Talking to other people with diabetes can lead to trading war stories about particularly unpleasant hypos or serious hospital stays as well as what type of therapy they use to manage their condition. Talking to people who don't have first hand experience of diabetes can turn into a discussion about being type-aware or explaining (for what may feel like the millionth time) that yes, you can have a biscuit/chocolate/piece of cake without needing serious medical attention.
What doesn't get possibly as much discussion are the mental aspects of having diabetes. I'm by no means an expert but I think it's important to make time to give these 'hidden' aspects as much consideration as other factors.
I think it can be quite easy to bypass how you feel about having diabetes because living with it becomes such a normal part of your day, you don't necessarily stop to think about it.
What prompted me to consider this quite recently was the set of forms I received as part of my REPOSE 6 month follow up. The premise is quite simple - you're faced with a number of statements and asked to score them on a scale of 1-5 based on your experiences over the last 4 weeks (e.g. very likely to very unlikely, extremely important to totally unimportant etc.)
That sort of process in itself isn't anything new, but what it does offer is a chance to reflect on those moments when you might have felt sad, angry or frustrated and not consciously understood the reason why.
Some of the questions are quite generic and deal with how you rate your quality of life overall, how you feel on a daily basis and so on. Others ask you to consider how living with the specifics of diabetes affects your relationships with the people around you and your day to day activities or future ambitions.
Whilst I wouldn't dream to speak definitively for anyone else, I'm sure that at some point, many people with diabetes have experienced some sense of anger or frustration that relates to their condition and I know I certainly have. What I don't tend to do is reflect on those feelings and either rationalise them or find someone who can help me with them.
If I were to ask you how much you feel burdened about having to think about your nutrition or how frustrating you find the fact that others don't understand your treatment, you might not give them too much thought. Hopefully for the vast majority of people, such things really aren't factors in your day to day life. However, for some people, struggling through on new regime of insulin therapy or coming to terms with a recent diagnosis can leave them feeling stranded and alone.
Whether you've been diabetic for 12 weeks for 12 years, you're bound to go through difficult times at some stage and but it's being able to manage them that is important.
My lowest point came after about seven years after my diagnosis (I'll have been a fully paid up member of the T1 club for 12 years in October). I got to a point where testing my BG and seeing constantly high numbers would make me feel depressed so I stopped testing regularly. I don't mean that I'd test once a day, I'd be lucky if I tested once a week. As a result my HbA1c rose steadily and I was going to 6 monthly hospital reviews armed with more and more constructive excuses and promises that things would be different next time. I'd be economical with the truth with my family because I felt ashamed I wasn't looking after myself when really I didn't want to admit that I either felt too exhausted to do it, or I couldn't remember how. This continued for about 18 months before I eventually came clean and with the help of my wonderful wife, I started to get things back on track.
I'm incredibly lucky that I have a very supportive family and a great relationship with my specialist team that helps me through the tougher times. There's also a lot of other support out there in various other guises and there's also a growing online community of people with diabetes who can listen and help you.
Filling in my 6 monthly review forms has been a cathartic experience and a reminder that whilst things might feel good today, I've also experienced some serious low points and managed to come through them relatively unscathed. If I'd had to fill in the same forms a few weeks after getting my insulin pump, I know for a fact that the answers to some questions would have been markedly different but being able to reach out for support to the right people at the right time has made me stronger.
When discussing diabetes, it can be quite easy to revert to familiar topics depending on who you speak to. Talking to other people with diabetes can lead to trading war stories about particularly unpleasant hypos or serious hospital stays as well as what type of therapy they use to manage their condition. Talking to people who don't have first hand experience of diabetes can turn into a discussion about being type-aware or explaining (for what may feel like the millionth time) that yes, you can have a biscuit/chocolate/piece of cake without needing serious medical attention.
What doesn't get possibly as much discussion are the mental aspects of having diabetes. I'm by no means an expert but I think it's important to make time to give these 'hidden' aspects as much consideration as other factors.
I think it can be quite easy to bypass how you feel about having diabetes because living with it becomes such a normal part of your day, you don't necessarily stop to think about it.
What prompted me to consider this quite recently was the set of forms I received as part of my REPOSE 6 month follow up. The premise is quite simple - you're faced with a number of statements and asked to score them on a scale of 1-5 based on your experiences over the last 4 weeks (e.g. very likely to very unlikely, extremely important to totally unimportant etc.)
That sort of process in itself isn't anything new, but what it does offer is a chance to reflect on those moments when you might have felt sad, angry or frustrated and not consciously understood the reason why.
Some of the questions are quite generic and deal with how you rate your quality of life overall, how you feel on a daily basis and so on. Others ask you to consider how living with the specifics of diabetes affects your relationships with the people around you and your day to day activities or future ambitions.
Whilst I wouldn't dream to speak definitively for anyone else, I'm sure that at some point, many people with diabetes have experienced some sense of anger or frustration that relates to their condition and I know I certainly have. What I don't tend to do is reflect on those feelings and either rationalise them or find someone who can help me with them.
If I were to ask you how much you feel burdened about having to think about your nutrition or how frustrating you find the fact that others don't understand your treatment, you might not give them too much thought. Hopefully for the vast majority of people, such things really aren't factors in your day to day life. However, for some people, struggling through on new regime of insulin therapy or coming to terms with a recent diagnosis can leave them feeling stranded and alone.
Whether you've been diabetic for 12 weeks for 12 years, you're bound to go through difficult times at some stage and but it's being able to manage them that is important.
My lowest point came after about seven years after my diagnosis (I'll have been a fully paid up member of the T1 club for 12 years in October). I got to a point where testing my BG and seeing constantly high numbers would make me feel depressed so I stopped testing regularly. I don't mean that I'd test once a day, I'd be lucky if I tested once a week. As a result my HbA1c rose steadily and I was going to 6 monthly hospital reviews armed with more and more constructive excuses and promises that things would be different next time. I'd be economical with the truth with my family because I felt ashamed I wasn't looking after myself when really I didn't want to admit that I either felt too exhausted to do it, or I couldn't remember how. This continued for about 18 months before I eventually came clean and with the help of my wonderful wife, I started to get things back on track.
I'm incredibly lucky that I have a very supportive family and a great relationship with my specialist team that helps me through the tougher times. There's also a lot of other support out there in various other guises and there's also a growing online community of people with diabetes who can listen and help you.
Filling in my 6 monthly review forms has been a cathartic experience and a reminder that whilst things might feel good today, I've also experienced some serious low points and managed to come through them relatively unscathed. If I'd had to fill in the same forms a few weeks after getting my insulin pump, I know for a fact that the answers to some questions would have been markedly different but being able to reach out for support to the right people at the right time has made me stronger.
Diabetes Week
This blog was first posted on the Diabetes UK blog site as part of Diabetes Week
It's already well documented that living with diabetes can be a frustrating and challenging experience. I remember thinking when I was diagnosed with Type 1 in 2001 that it was so fundamentally life changing that I wasn't sure I'd ever be able to cope with it.
One of my first thoughts was of a boy who went to my primary school who had diabetes as that was probably my only exposure to someone who lived with the condition. I remembered that had carried a vial of insulin and a large hypodermic needle around with him all the time. That memory convinced me I was doomed, that I'd never be able to manage.
Being here 12 years later to write this blog isn't a tribute to my own incredible ability to overcome the impossible, but a real testament to the power of research into treating diabetes and improving the lives of millions of people.
Recently I became involved in a clinical trial called REPOSE (or The Relative Effectiveness of Pumps over MDI and Structured Education for Type-1 diabetes). The aim of the study is to determine whether an insulin pump provides additional benefit to people with Type 1 diabetes versus Multiple Daily Injections. All participants, regardless of the treatment type they are assigned, also complete a DAFNE course to ensure that structured education is provided.
Whilst a recent report showed that the UK is lagging behind the rest of Europe and the US in terms of insulin pump usage in treating Type 1 diabetes, there have been no trials in adults that compare how well patient fare between MDI and pump therapy when combined with structured education. It's important that research like this is carried out to be able to
It's already well documented that living with diabetes can be a frustrating and challenging experience. I remember thinking when I was diagnosed with Type 1 in 2001 that it was so fundamentally life changing that I wasn't sure I'd ever be able to cope with it.
One of my first thoughts was of a boy who went to my primary school who had diabetes as that was probably my only exposure to someone who lived with the condition. I remembered that had carried a vial of insulin and a large hypodermic needle around with him all the time. That memory convinced me I was doomed, that I'd never be able to manage.
Being here 12 years later to write this blog isn't a tribute to my own incredible ability to overcome the impossible, but a real testament to the power of research into treating diabetes and improving the lives of millions of people.
Recently I became involved in a clinical trial called REPOSE (or The Relative Effectiveness of Pumps over MDI and Structured Education for Type-1 diabetes). The aim of the study is to determine whether an insulin pump provides additional benefit to people with Type 1 diabetes versus Multiple Daily Injections. All participants, regardless of the treatment type they are assigned, also complete a DAFNE course to ensure that structured education is provided.
Whilst a recent report showed that the UK is lagging behind the rest of Europe and the US in terms of insulin pump usage in treating Type 1 diabetes, there have been no trials in adults that compare how well patient fare between MDI and pump therapy when combined with structured education. It's important that research like this is carried out to be able to
Annual Review
This blog was first posted on the Diabetes UK blog site
The date of my Annual Review being marked on the calendar has, in the past, struck fear into me on more than one occasion. I've previously likened it to some sort of 'confession', and I've spent time preparing my excuses for the results that are inevitably not within target.
It wasn't uncommon for me to 'blame' a variety of things for why I'd not quite got round to an improved HbA1c or lost a few pounds. A new job, moving house, my daughter being born or just "being really busy at work" all got used at one point or another.
I went through a significant period of time where testing my BG was as a rare occurrence and unsurprisingly, my overall control suffered quite badly as a result. I used to frantically try and cram months of eating right and testing my BG regularly into a week before my clinic appointment. I'm sure you can guess how well that worked out.
The thing is, in actual fact, I think that in all bar one or two of my annual/six-month reviews over the last 12 years, my consultants (and specialist team in general) have always been great with me. They were sympathetic, ready to listen and helpful in a way that didn't feel like I was being lectured.
I guess at the time, I never really appreciated why that was. I took it to mean that they just generally understood that it was a bit tough sometimes (especially when you're younger) and that they knew I was trying. To a degree I think a lot of that was true, but really, in hindsight, it was because there is only so much they can do. The ultimate responsibility lies with me as I'm the only one with any power to change anything.
Of course, any annual review or clinic appointment wouldn't be complete without a sometimes baffling array of numbers, some of which make perfect sense to you, some of which don't. I don't know how it works in other places, but in Sheffield, I get an A4 summary of my results that includes a 12 month rolling period so I can see how well (or not) I'm doing.
As I've got older I've started to pay more attention to the figures beyond my HbA1c, particularly my blood pressure and my cholesterol. At one point I was close to being diagnosed with high blood pressure as every clinic appointment showed some high numbers. I got given a BP monitor to wear for 24 hours which showed that it was only high when I was at clinic - I'm not sure if that's a common problem for some people but it was good to find out it was just clinic that kept putting me on edge!
I know that getting older means that it'll get a little more difficult to keep all the numbers closer to target and that I'll have to work a little harder to do so. But I know what I need to do and sometimes that's half the battle.
The important thing is to make sure you don't struggle on by yourself if it ever feels overwhelming. There are so many different ways to get the support you need, including talking to your specialist team, calling the Diabetes UK Careline or engaging with one of the several online communities dedicated to helping people with diabetes. Being able to talk to someone about how you feel when you have diabetes shouldn't just be a 6 monthly occurrence.
Thankfully my most recent appointment was one where I felt I could talk about my successes over the last few months rather than having to invent yet another excuse. Hopefully that's also the case for the majority of you too.
The date of my Annual Review being marked on the calendar has, in the past, struck fear into me on more than one occasion. I've previously likened it to some sort of 'confession', and I've spent time preparing my excuses for the results that are inevitably not within target.
It wasn't uncommon for me to 'blame' a variety of things for why I'd not quite got round to an improved HbA1c or lost a few pounds. A new job, moving house, my daughter being born or just "being really busy at work" all got used at one point or another.
I went through a significant period of time where testing my BG was as a rare occurrence and unsurprisingly, my overall control suffered quite badly as a result. I used to frantically try and cram months of eating right and testing my BG regularly into a week before my clinic appointment. I'm sure you can guess how well that worked out.
The thing is, in actual fact, I think that in all bar one or two of my annual/six-month reviews over the last 12 years, my consultants (and specialist team in general) have always been great with me. They were sympathetic, ready to listen and helpful in a way that didn't feel like I was being lectured.
I guess at the time, I never really appreciated why that was. I took it to mean that they just generally understood that it was a bit tough sometimes (especially when you're younger) and that they knew I was trying. To a degree I think a lot of that was true, but really, in hindsight, it was because there is only so much they can do. The ultimate responsibility lies with me as I'm the only one with any power to change anything.
Of course, any annual review or clinic appointment wouldn't be complete without a sometimes baffling array of numbers, some of which make perfect sense to you, some of which don't. I don't know how it works in other places, but in Sheffield, I get an A4 summary of my results that includes a 12 month rolling period so I can see how well (or not) I'm doing.
As I've got older I've started to pay more attention to the figures beyond my HbA1c, particularly my blood pressure and my cholesterol. At one point I was close to being diagnosed with high blood pressure as every clinic appointment showed some high numbers. I got given a BP monitor to wear for 24 hours which showed that it was only high when I was at clinic - I'm not sure if that's a common problem for some people but it was good to find out it was just clinic that kept putting me on edge!
I know that getting older means that it'll get a little more difficult to keep all the numbers closer to target and that I'll have to work a little harder to do so. But I know what I need to do and sometimes that's half the battle.
The important thing is to make sure you don't struggle on by yourself if it ever feels overwhelming. There are so many different ways to get the support you need, including talking to your specialist team, calling the Diabetes UK Careline or engaging with one of the several online communities dedicated to helping people with diabetes. Being able to talk to someone about how you feel when you have diabetes shouldn't just be a 6 monthly occurrence.
Thankfully my most recent appointment was one where I felt I could talk about my successes over the last few months rather than having to invent yet another excuse. Hopefully that's also the case for the majority of you too.
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.
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:
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)
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.
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!
 |
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.
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