The long suffering life of a type 1 diabetic...

It always grates on my nerves when I hearing myself described as a person who has suffered with diabetes. You know, that fingernails-on-a-blackboard noise type of annoying. I felt that the word "suffer" implied that I was weak or ill. But I don't look like either of those things, so how can I be a sufferer? Especially when I'm having a good day?

But then, I tried to come up with another way to describe my life with type 1 diabetes I have decided that while I don't like the word, it does seem like it's the best one to describe it.

I considered "survivor", but that word implies that somehow I have left diabetes behind me and it is no more. No such luck! Diabetes is never going to leave my life (unless of course there is a cure).

What about "Conquered"? But that would suggest that I battled and won. And again suggests that my diabetes is no more.

I think I would still prefer for people to use another word to describe living with diabetes but until I, or you, come up with a better word, I will have to suffer the word "suffer".

Finding Help with Carb Counting

One of the many ways people manage their type 1 diabetes is Carbohydrate Counting or Carb Counting. Carb counting has been a successful way to help manage type 1 diabetes while giving us a more flexible lifestyle since the 1990's. But it has only really taken off in Ireland since the noughts.

Carb counting is based on the idea that if the carbs in our food make our blood glucose levels rise consistently, then it makes sense to try and measure them and come up with insulin to carb ratios. It can be a lot of work in the first two or three weeks but after that it most of the work involved does not have to be repeated. 

So, if you are a person with type 1 diabetes and are interested in learning more about carb counting, where do you start?

In Ireland, there are two structured education courses for adults, DAFNE(Dose Adjustment For Normal Eating) and BERGER. 

The DAFNE course originated in Germany in the 1980's as the Düsseldorf Approach. It was designed by the diabetes team at the Diabetes Centre in Düsseldorf, led by Michael Berger. People learned to match their insulin dose to their food on a meal-by-meal basis. The aim is that they can keep healthy blood glucose control without a higher risk of severe hypoglycaemia. 

In 1998, a team from the UK adapted the Düsseldorf Approach creating the Dose Adjustment For Normal Eating (DAFNE). 

There are 6 diabetes centres in Ireland running DAFNE, click here for the list, and the diabetes centre in University Hospital Cork runs a variation of DAFNE, which is named after the original creator, BERGER.

The parents of children with diabetes have the CHOICE programme and that is run in the 5 paediatric diabetes centres that offer insulin pump therapy to their patients.

The six up and running paediatric diabetes centres offering the CHOICE programme are;

• Adelaide & Meath Hospitals, incorporating the National Children‟s Hospital (AMNCH), (Dublin)
• Children‟s University Hospital, Temple Street, (Dublin)
• Cork University Hospital, (Cork)
• University Hospital Limerick /University Hospital Galway, (Limerick / Galway)
• Our Lady‟s Hospital for Sick Children, Crumlin, (Dublin) 

• And soon to be up and running Sligo General

If you don't attend any of these centres, you might have access to a dietitian who would work one on one to teach you carb counting.

If this option isn't available at your diabetes clinic you should be able to find a dietitian who runs a private practise who will instruct you in carb counting, such as the services provided by Diabetes Insight in Cork. 

However, when you call to make the appointment be clear about the fact that you want to learn how to carb count and how to work out insulin to carb ratios.

If you are interested in learning more about carb counting, the wonderful people at InPut Diabetes in the UK have some excellent resources.

Belated Valentines Day Post

I have lived with type 1 diabetes for almost 22 years. My husband and I have been together for 15 years; married 13 of those. And since he came into my life I'm happy to say that I have not lived with type 1 diabetes alone.

He is with me every step! He wants to know as much about diabetes management as I do and often he does. Sometimes, he looks at my record book to help me figure out patterns in my blood glucose levels. It may be my diabetes but my whole family lives with it, especially him. Whatever happens to me affects him in a big way!

About a year ago, I put him through something unthinkable and I hope I feel the guilt always because it reminds me that we are in this together.

It was unintentional, and unfortunate for him, but it taught me a valuable lesson. 

We attended a family occasion. I did all the usual tasks to make sure that I enjoyed the day without stressing about blood sugars. I tested every couple of hours and adjusted for highs and lows. 

Unfortunately, that one last drink, the multiple boluses I gave myself for a 4 course meal and not knowing as much about how alcohol effects glucagon as I do now, led to me collapsing in the shower the next morning out cold.

My husband knew to test my blood sugars and that it was probably a hypo. He also knew that I probably did not have my glucagon kit with me. While he was testing my sugars he was panicking about what he was going to do if it was an unconscious hypo. He didn't want to call the paramedics but he knew he would have to.

Lucky for both of us, I started to come around. I was "loopy" but I was responsive. It probably was the recovery side of an undetected hypo.

One of the first things I said to him was "I'm sorry", not because it was my fault that I passed out, well not really, but that I was sorry he had experienced that panic and terror of trying to figure out what to do.

I spend so much time thinking about myself and how to take care of myself better, so that I can be around for my family for decades and I wasn't prepared for someone else having to figure it out. 

I realised that just because I have never needed my glucagon kit doesn't mean that I should not carry it. Just because there are hospitals everywhere doesn't mean I should rely on someone to bring me. 

I was consumed by the guilt I felt for what he went through because of me.

I now make sure I have an in-date glucagon kit in my purse at all times. I'm pursuing a Continuous Glucose Monitoring System to help with nocturnal hypos. AND I will never, never drink that amount of alcohol again!!! And so far, so good. 

Thank you, marvellous, wonderful hubby for taking on me and my diabetes and for your support and help with it.

A Weekend of pampering PLUS learn to live a healthier life with Type 2 Diabetes

OK, I want one of these!!! The people at HealthSmart and Diabetes Ireland have designed a weekend retreat especially for people with type 2 diabetes who want help to tackle their type 2. one of these for adults with type 1. I have copied all of the information below from the HealthSmart website.

Diabetes Ireland and HealthSmart have developed a weekend break for people living with Type 2 Diabetes, or at an elevated risk of developing Diabetes.

The Retreat focuses on the key elements of living a healthy life; exercise, nutrition, and psychology, which will give participants the tools they need for a long-term balanced healthy lifestyle.

Located in luxurious settings in Trim, Co Meath, the retreat has fantastic facilities and a team of experts to help kick start your health. Besides being great fun; the retreat also offers an opportunity for people living with Diabetes to meet others living in similar circumstances.

During the stay, you will attend workshops to help change your relationship with food and exercise. 

What’s Included:

• 4* Luxury Accommodation
• Body Composition and Food Diary Review
• All Healthy Meals and Snacks
• Relaxing Spa and Thermal Suites
• All Exercise and Activity Sessions
• Cognitive Behaviour Therapy Workshop
• Practical Nutrition Workshop
• Meal Swaps and Portion Control Tips
• Neuro-linguistic MP3 for Mindset
• Long Term Online Support
• State of the Art Online Food and Exercise Diary
• Support Meet Up after Camp
• Set and Achieve SMART Goals

ALL THIS FOR ONLY €375

NEXT CAMP FRIDAY 27TH FEB TO SUNDAY 1ST MARCH

If anyone is interested in the weekend of luxury while learning to take care of your type 2 diabetes call: :086200591780 or email info@healthsmart.ie

The Waiting Game for new Diabetes Devices

A couple of months ago, there was a press release that caused a wee bit of a frenzy in the diabetes online community? This was before the "is it an artificial pancreas or is it an insulin pump" press release, that's currently doing the rounds. Abbott announced the availability of their Freestyle Libre in the UK. 

People very quickly saw that it was a way to test blood glucose without finger pricking and interest from the diabetes community was instant. Myself included.

A few Irish people purchased the Libre from the UK website and posted on social media about how they were doing with it. This created even more interest. Then, it became UNavailable for anyone from the Republic of Ireland to purchase. You can't even access the UK website any more!

I'm sure that a lot of you are frustrated, like me, to read all about the "amazing" new diabetes products like the Libre, and the Medtronic MiniMed 640G insulin pump, the Dexcom Share and lots more current devices that are not available in Ireland.

Last week, I wrote about my pursuit of a blood glucose meter that has bluetooth capability and I came across some information about why there are more devices available in the UK on the National Health Insurance (NHS) than there are available on the HSE (Irish version of NHS) in Ireland. 

As you might imagine, there is a short list of reasons why Ireland doesn't get all of the new devices, but what it really boils down to, is economics.

The type 1 diabetes market in Ireland is minute compared to our neighbours in Britain, at a staggering 400,000. It's estimated that there are only 16,000 children, young people and adults with type 1 in Ireland. The potential to make a profit out of us is teeny. 

This might sound harsh but a business cannot do business without making a profit. It's just not viable. I don't dispute the pharma company's reluctance when it costs so much to break into our markets.

The pharma companies have to have people to sell the product and a support team to help patients use the product. That is a significant cost to them. Then, pharma companies have to jump through some hoops such as random clinical trials to prove the benefits of the product and assess the demand for their product, in order to apply to become available on the HSE in Ireland. This also takes time and money but it is a once off.

And there is one set of standards, procedures and guidelines for us here in good old ROI and another similar set, but not the same in the UK.

This makes me wonder, if there is a way for the NHS and the HSE to work together to make one complete process of the procedure? Could we have the devices and products approved at the same time for both countries, while still delivering high quality medical devices to the patient?

The benefits of having one procedure would range from reducing the cost to the companies of the entrance into the both markets, to a cost savings for the health services with a more competitive market. 

Maybe the problem isn't that easy to solve, but maybe it's worth exploring further?

In the meantime, we, in Ireland, have to sit tight until these trials are completed and until the HSE grants Abbott permission to distribute the Libre under the long term illness scheme.

I'm Catching up with the Decade...slowly

Last November, I got a smartphone, finally. I love technology but I hate change, which is a bit of an oxymoron. So, I fought with myself over and over about upgrading:-D

Now that I had a smartphone I thought I would look into all those amazing diabetes apps to see if I could find one that made life with D a little easier.

I did find one that I had previously tried to use on my tablet but I didn't carry my tablet to all places at all times and this made the data entry annoying.

So I completed step 2 by finding an app I really like. It's the MySugr app. But now, I have my glucose meter, my iPhone, a calculator (yes I know the phone has one but IMO multitasking is juggling 2 or 3 devices not 4!) and my pump. Did I also mention that I still keep a paper record? I know, there’s no hope for me. I’m afraid that with all of these devices I'm actually going to forget to bolus.

Well, I'm finding it hard to juggle all of these devices and it prompted me to looking into a meter that would sync to my phone. Or even better, a meter that was part of my phone! I had remembered a couple of years ago seeing a meter that attached to a smartphone

Google is my friend! And yes, the iBGStar was not a figment of my imagination but it was not available in Ireland. It’s in the UK but not Ireland.

There are a number of glucose meters that could be quite “nifty”, such as the Verio Sync (only available in the US), the iBGStar or the Dario meter, for people with diabetes. Some of these fancy meters are available on the NHS in the UK, some you can buy but none of the ones I was interested in are available on the Long Term Illness scheme (which is the equivalent of the NHS in the UK) in Ireland

It was extremely difficult to find out what meters are available through the long term illness scheme in Ireland.

I got really frustrated with the fact that all the meters I was interested in were not available to me under the Irish Health service’s Long Term Illness scheme. The NHS in the UK seems to have a lot more options for people with diabetes.

I suppose it’s one of the disadvantages of being a small percentage of a small country where pharmaceutical companies don’t consider the cost of setting up in Ireland and getting approved outweighs the potential for making money.

This quest prompted me to ask some questions about what companies have to do to have their products accepted into the Long Term Illness programme. I got some answers and I'm putting together that post for next week….

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