Blood Sugar Trampoline

The Death of the Animas Insulin Pump

Last week, Johnson & Johnson Diabetes, who own Animas, announced that it was “exiting” out of the insulin pump business, effective immediately in the US and Canada. And eventually in the rest of the world.

Once I read all the way down the press release to realise that it was just USA and Canada for now, I was relieved.

Then I was seriously miffed, but not completely surprised. Since the Vibe insulin pump was introduced, a number of years ago, innovation seemed to have stalled within the company. Johnson & Johnson own both Animas and the glucose meter company LifeScan/OneTouch but they didn’t even innovate between these products, not even to do what all others were doing and that was to sync products via Bluetooth or whatever internet cloud magic they choose. One might even say they really checked out of the diabetes industry a long time ago by their lack of interest.

So, what does this mean for us in Ireland? And what does this mean for me an Animas Pump user?

I have been using an Animas pump since my pumping beginnings in 2010. Then in 2014, I upgraded to the Vibe and in 2015 I added the Dexcom Continuous Glucose Monitoring System (CGM) to it. I didn’t choose which insulin pump I would have, it was chosen for me, but I didn’t have any complaints. In fact, it’s been a great relationship!

Now I’m trying to think ahead and I realised that in the not too distant future I’m going to have to find a replacement for my insulin pump.

What are my choices in pumps? Do I actually have a choice, when the only other insulin pump my health service has a contract with is Medtronic? Yes it’s probably a good pump but I don’t want to be forced into it.

BUT it’s not just my pump I need to consider!

This also effects my CGM device. How will my new pump interact with my current CGM, if at all? My Dexcom receiver IS my insulin pump, meaning that my glucose sensor transmits the information straight to my pump. So I need to either get a new receiver device or change CGM’s.

And then, there’s my glucose meter which I was also able to upload to my insulin pump software programme which allows me to create useful graphs that help me make better decisions about my daily care. All of my information, from all of my devices is uploaded to the same place where I can see it all and it was easy!

Will I need to change both of these devices to make life easier?
What will the overall software platform be that I use?

I want to be able to upload/Bluetooth/cloud sync all my devices to the same place!

I want to use whatever d*** device I like best. And I really don’t like that I have to research all of this when managing diabetes is enough work already.

Thriveabetes; What is it? Why do I need it?

My children have been back to school for almost two full weeks now and since their first day back I’ve been spending a couple of hours most days planning Thriveabetes 2018.

A month ago, at our fundraiser, I was asked to explain what Thriveabetes is, why people with diabetes need it and why I was asking people to give money to it.

After my nerve wrecking speech, several people commented on how they had no idea that living with diabetes was so involved and required so much work. Why I keep forgetting this when I talk about my diabetes I’ll never know!

This post is to explain to people who don’t have diabetes, what living with type 1 diabetes is actually like, to explain what our conference does for people with diabetes, why I’m passionate about it and why I need it.

Here’s what I said;

What is Thriveabetes? And why do people with diabetes need it?

To answer these questions I have to, first, take you on a little journey. My journey.

I was diagnosed with type 1 diabetes 24 years ago as a young adult and It changed my entire life. I’d like to be able to say that living with type 1 becomes easier but it doesn’t – it becomes habit.

I woke up this morning, a little groggy because my glucose alarm went off during the night telling that my levels were a little high. So I got up, checked them on my meter, worked out a correction dose of insulin, took it and went back to sleep.

Before breakfast, I checked my levels again; they were in target, so I took my insulin for my regular weekend breakfast of tea and toast also known as 40g of carbs and then ate it.

Two hours later with kids and car packed to travel across Ireland, I checked my levels again to see how close I came to getting it right. The answer was; not in target range, but close enough.

As I visited with my mother and family, I wondered what lunch was going to involve and when it was likely happen. It ended up being a sandwich at a Spar. I checked my glucose levels again. They were a little above my target, so I had to work out a correction dose of insulin plus working out an educated guess of how many grams of carbs were in this particular sandwich. Then I eat. My day, as with all other days, continued like this.

I do all of this out of habit. The numbers are very seldom perfect. But I get on with “close enough”.

Now imagine, that the person with diabetes isn’t you, but your child. So on top of all of those daily diabetes tasks that I do, you now have the added worry of “if I don’t do this “close enough” my child is going to get sick. Again!”.

This kind of anxiety and stress goes on 24 hours a day, 7 days a week, etc. Diabetes NEVER takes time off. Ever.

This is why Thriveabetes is needed!

Thriveabetes is a place where you can relieve some of that stress and anxiety. The power and comfort of being in a room with so many people with diabetes, learning so much about managing daily life with it and knowing that every single person in that room knows diabetes like I do, lightens that load. There is no other place where we can get that.

It’s a day that is organised completely by us; people with type 1 diabetes. We are all volunteers who are dedicated to and passionate about bring people with type 1 diabetes together to share what we deal with every day and to learn from world class speakers.

And that is Thriveabetes. And that is why I need it!

Blood Glucose Darkness

I’ve been using a continuous glucose monitor (CGM) since November 2015 and it has made a huge difference in my diabetes management. It has narrowed the glucose swings so much and it has been a huge relief in my anxiety relating to trying to avoid hypos. And I have worn it 24/7 since I got it.

Last Friday, I had an MRI on my stupid 83 year old hip (another story) and I had to take my sensor off. So I decided to go the whole weekend cgm-free. I thought it would be nice to have a break from the alarms and just see how I got on.

I felt completely blind! I had no idea what my glucose levels were between finger prick checking and it was a huge loss of information. I felt I was making decisions with my insulin without all of the information.

That evening, I went to bed with a respectable glucose 8.8 mmols/L to be woken at 3am by perspiration steaming off my body of a glucose level of 2.8 mmol/L. I tried not to consume the entire kitchen and lay across the couch willing cold air to descend on me and cool me down.

Twenty minutes later, with glucose levels at 4.8 mmols/L and probably shooting for the sky in a rebound high, I had recovered enough to go back to bed. I woke with a glucose level of 11.5 mmols/L which was lower than I expected but still too high. At least, I was spared the high alarm during the rest of the night.

 

I can’t believe that I used to think that I was doing fine on the information provided by 7 finger prick glucose checks per day! Using a cgm has taught me so much about how to manage my diabetes, it has taught me about creating more effective insulin doses and it has given me more power over my life with type 1 diabetes.

This piece of technology is really valuable for people with type 1 diabetes. However, I do realise that it isn’t something that everybody would want or can get. I believe that availability will change in the near future though as more and more health care professionals realise its value in providing information beyond HbA1c’s also.

Weight and W-Exercise Woes

I’m sorry, I couldn’t resist the alliteration.

Over that last number of years, I’ve put on weight!!! I’m not overweight… Yet! I don’t feel overweight but my clothes are tight and I feel frumpy.

I’m frustrated because I’m eating less and less, still fairly active but I’m still gaining weight. I’ve cut down of a lot of my carbs. I’m not willing to go carb free. I exercise a bit – I know I could do more but there are things that I have to do during my day and there are things on the “could-do-unicorn-list”.

The weight loss principle might sound easy, and simple; eat less and move more.  But in reality it’s not. And for people with diabetes who use insulin, even more so.

How We Burn Fat
HOWSTUFFWORKS.COM

When we eat, the glucose and sugar harnessed from carbohydrates are the first fuel sources. The liver stores the glucose in the form of glycogen and releases it into the bloodstream as necessary to keep our body trucking along. Think of your bloodstream as an interconnected conveyor belt that takes necessary nutrients to the body parts that need them. Once that glucose runs out, fat takes over. Harnessing energy by burning fat is referred to as ketosis.”

 

When a person exercises they burn up the glucose in their blood first, which usually keeps you going for about 20 minutes. In a person who does not have type 1 diabetes, when that glucose is used up, the body looks for glucose else where and the liver starts to release its stores. In a person with type 1 diabetes the body goes into a hypoglycaemia (low blood glucose).

It is extremely difficult to get your body to burn fat, when your body goes into the shutdown mode of hypoglycaemia (low blood glucose).

The Vicious Circle in disguise

I’m also frustrated because what I’ve read recently about losing weight when you have type 1 diabetes seem like the are written in a foreign language.

I feel weight management is a common problem for people who use insulin. And actually it’s been proven as the biggest reason people with type 1 diabetes don’t exercise; finding the balance between insulin, glucose and all the other influences on our glucose levels.

So what’s my plan of action. Well, for now, my plan is to keep up with the research and try to find more ways to move while getting all the other stuff done.

I might come up with a better plan but this is all I have left to give for now.

Short Sleeves and Stares

It’s summer in Ireland. But summer in Ireland means wearing a rain jacket a lot of the time or a cardi. However, the weather has warmed up enough recently and has been a bit drier to go out in short sleeves. This feels a little uncomfortable for me.

Why? I wear a gadget thingy on the side of my upper arm. It looks odd and in short sleeves it’s hard to miss. Especially, when I’ve been wearing it for a couple of weeks when I’ve had to put extra tape on it to keep it stuck on and it looks a bit “ick”.

It’s a continuous glucose monitor and it measures my blood glucose levels every five minutes and transmits this information to a receiver screen. This device also alarms when my glucose levels are too high or too low, giving valuable information that helps me improve my diabetes management.

When I first started wearing my CGM two years ago, I was very self conscious of it and would actually wear a cardigan to collect the kids from school just to avoid talking about it. Everybody I met commented on it.

These days, I’m less aware and forget it’s there most of the time. Until I’m walking around the grocery and I suddenly sense that someone is looking at me. Then I do become slightly more conscious of it. But it’s difficult not too because I can feel the looks.

I got into a taxi last year and the driver asked me if it was a bomb? So I’m always wondering if that’s what other people are thinking, especially going through airport security. Most people don’t say anything though. The strangers don’t approach me they just look.

I can live with the looks now and I’ve worn short sleeves more that I did last year. I’ve gotten over how self conscious I was of it at the beginning. Because it’s fricking awesome in what it does for me and my type 1 diabetes.

And maybe some day it will be the reason that another person with diabetes comes up to me and says “Hi”.

2016-09-09 img

DxAmsterdam – The Complete Round up

This is the third and final post about DxAmsterdam.

My first post didn’t really relate to #DxAmsterdam at all but my experience of going through airport security to get to and from Amsterdam

My second post was published on Thriveabetes and was an update on the reimbursement status of the Freestyle Libre.

And this post is a complete round up of the weekend.

Friday afternoon, despite a dawn flight from Shannon airport, I arrived too late to be part of the organised bike tour of Amsterdam and to be quite honest I was relieved. I’m a nervous cyclist at the best of times but with so many people, cars and bikes everywhere in the city, I think I would’ve had a nervous breakdown.

I met up with my fellow European bloggers at the welcome reception that evening. It was familiar face after familiar face as soon as I walked into the room. However, only one or two of those faces I had met before. I love social media!!! It makes you feel like you are friends already. AND I have to say a very, very big thank you to Adrian Long (@AdrianLong3) for starting the Twitter message group so that we could do preliminary introductions in advance of the trip.

Next up was a presentation by a local volunteer organisation, much like Thriveabetes, who have their own support and information website and amazing projects. EenDiabetes.nl, which means One Diabetes Foundation, is run by a team of volunteers who write really good blog posts and are worth a look.

It’s founder, Mattias shared how he saw a need for a support hub for young adults with type 1 diabetes, being one himself, and started a private Facebook group which then evolved into a website. Does that sound familiar? 😀 This would have been an extremely valuable brainstorming session but, sadly, we ran out of time to complete it. We need something like this for our 20 + year olds with type 1 diabetes.

I loved that the host country did a presentation on what they are doing and why they started it. And it gave us an idea of what living with type 1 diabetes is like in the Netherlands.

We mingled afterwards over a buffet style dinner. A number of us soldiered on into the night, even though we’d all been up early to travel, there was huge enthusiasm to mix with fellow bloggers and find out more about diabetes in each others’ countries.

It all starts with a dream: Claire Lomas’ Story

Saturday was an early start too but it was SO worth it. We were joined by Claire Lomas, MBE from the UK and her husband, Dan. Claire’s life turned upside down on 6th May 2007 when she became paralysed from the chest down in a horse riding accident. “Claire was a Chiropractor and top level event rider when this freak accident left her unable to do the things she loved. Over time, she found strength and courage to rebuild her life by finding new interests and work as well as raising hundreds of thousands of pounds for research.”

You might be wondering how she raised that money for research? Well, in 2012, she walked the London marathon! Click on her website please!

Yeah, I know! And then!!! She showed us photos of her baby girls and that was the end of me holding in the tears. Claire spoke passionately about her journey from the day of her accident to when she found herself again.

She told us that people only see the not walking part of being paralysed. They don’t see any of the other problems, challenges, and health challenges, such as the loss of bodily functions below the chest, or accepting how much you body has changed in appearance and the wasting muscles. Such an amazing woman!

Claire also said for a long time she focused on what she couldn’t do and it was frustrating and disheartening. It was very difficult to find something to get up for in the morning. Then she started thinking about what she actually could do, even if the were little things, she started taking every single opportunity that came her way and decided to try everything. Claire’s talk lead us nicely into our next presentation.

#Dreambeyond: Inspiring others to dream

This was our introduction to Abbott’s Dream Beyond Ambassador programme which came about from a survey where it was discovered that 67% of parents of children with diabetes believe that their children’s lives are limited by it. In my experience of hearing stories from the Irish diabetes community I believe it will serve to educate healthcare professionals also. The stories we’ve heard from the professional type 1 diabetes cycling team; Novo Nordisk’s Team Type 1 and how “12 of the 18 guys in the 2016 team, were told by their doctors you’ll never race a bike again – that it’s just not possible with diabetes.” Well guess what!

Our next speaker, Josu Feijoo from Spain is aiming to be the first person with diabetes in space. He is being sponsored to travel under Richard Branson’s Virgin Galactic space programme, which hopes to take two pilots and 6 passengers into orbit in 2018. Will Josu be abroad? We have to wait and see. Wouldn’t it be amazing to have the last glass ceiling of type 1 diabetes smashed to smitherings.

However, I’ve found lots of evidence that first person with diabetes in May 2006 was Geri Winkler, Austria, the first insulin dependant pwd and Will Cross, United States, the first person with type 1 diabetes. I’m struggling to find an official record of Josu’s climb that isn’t a media article but maybe he just hasn’t gotten around to it.

The power to dream: Life coaching session

Then, we had some personal development time with Personal coaching from In2Motivation on how to get to our dream/goal/objective/the thing that I want. And how to figure out what type of dreamer am I; explorer, planner, director, together and what I need to be more of. Our speaker told us that “Sometimes only changing one word opens a new door.” How our obstacles can sometimes be opportunities; Moments to pause, think or recharge. It was interesting and thought provoking.
Capturing the world through pictures: Photography learning tour
Next up was a Walking Photography Tour. I must say this is one thing I don’t do enough of – take photos. This is where I got my first real taste and smell (!) of the real Amsterdam and I might add took most of my photos. It was great doing this with other bloggers because that meant that there were numerous prompts for photos and I was actually in some of them!
Going further into diabetes monitoring: real-world data and innovations

We then had two presentations from Abbott representatives on the Freestyle Libre, how it’s impacting diabetes management and further developments to expand its connection to smartphones and software. I wrote about this here.

As we sat in this bright room that afternoon, I was struck by the high number of people in the room who were wearing some form of glucose sensor tech; be it a Libre or a CGM. There were 25 bloggers attending this event and we all had type 1 diabetes. I think that in the greater diabetes community this observation is very much the reverse. I’m usually one of the few people in the room who wears an insulin pump and/or a CGM. So for me to be in a room where I am not unusual was very nice. I think bloggers are such motivated people that they actively seek out better devices and information to better manage diabetes.

Quantitative Self Conference

Sunday, we arrived into an alternative universe full of people who love data, love to measure things like food, exercise, sleep, productivity and just life. This was the Quantitative Self conference where everything is quantifiable. I attended the “Measuring Food & Metabolism” workshop. The workshop was facilitated by a gentleman who took photos of his food to record what he was eating to help him improve his health. This was great for him because the simple act of taking the photo made him more aware of what he was eating and reluctant to eat junk food. However, the pwt1d in the room were waiting for what came next. What did he do with the photos? Well, this is where we took over the workshop, suggesting a multitude of apps to measure nutritional information and we gave a little lesson on what type 1 diabetes actually is. So one up for us in the diabetes awareness area! Wahoo!

After a quick bite to eat most of us boarded a bus back to the airport where a bunch of us got to hang out for a number of hours until our flights. For me, it was not being ready to say goodbye and face the long journey home solo. I’ve only had three opportunities to meet up with fellow bloggers and I don’t know when my next opportunity will be to consort with fellow “trouble makers” like myself. I just hope there is one:-)

Time to Travel with Diabetes

It’s summertime and the living is easy, fish are jumping and people are travelling, Including me! I specifically want to share my most recent travel experience by air.

My stress levels ramp up a couple of notches at the thoughts of traveling through airports. Airports equal airport security and as a person with diabetes I have a lot of organising to do to make this go as smoothly as possible.

I’ve travelled quite a bit but there is always something unexpected about it and I’ve just realised that I don’t travel very often by myself. I mostly travel with my well-travelled husband and two children and that is a very different experience – divide and conquer and all that.

Last weekend, I travelled to Amsterdam to attend the DxAmsterdam bloggers event sponsored by Abbott (more on that next week – it was great though and I learned lots). I had a couple of short flights, I travelled very light and no checked bags.

I thought I had covered everything; toiletries and cosmetics were in a clear plastic bag, medicines in another clear plastic bag, laptop easy to remove, no liquids… Or so I thought. Big, big sigh!

The first short flight was easier than expected, and boy did I savour this experience. In my home airport, I declared my medical devices and walked through the metal detector. IT DIDN’T BEEP!!!! So I could keep on walking. I didn’t have to volunteer for the pat down. I didn’t have to explain that I couldn’t go through any body scanner or why some pumps can and some don’t. I got to feel like a normal traveling person!!!

I did however make up for that seamless experience in my connecting airport where I had to do security all over again because I had to change terminals. I had to do the explaining, the intimate pat down, I had forgotten to take my camera and my glucagon out of both of my bags, so they had to be searched. I had a yogurt for my breakfast which was considered fluids and over the 100ml size, so that was confiscated but at least I had other food. So, so much to think about with diabetes and airport security.

The return trip was a bit smoother but still stressful. This time the trip to the airport was with friends; all who had diabetes:-) There were about seven of us going through security together. We all got held up for a variety of different reasons but not significantly.

I approached the body scanner and told the security agent I didn’t want to go through it. She was so nice and said that it was my choice and she didn’t mind which choice I made, at all.  They did not have traditional metal detectors, so I was given the pat down search but I wasn’t taken away to a private area and it wasn’t overly intimate. I knew my bags would get flagged because they were packed very tight and the x ray machines have trouble seeing through overlaid items. But the agent had a quick look though and everything was fine. Onwards! All seven of us met up after security and it seemed we all had similar experiences and we all have similar anxiety and stress levels about it.

The next airport I did solo. Again, I had to go through airport security on my connection as I was changing terminals. This time I was ready for them. I removed a couple of additional items from my bag into a separate tray to make it easier to see through on the x ray. It did the trick. My bags went through and didn’t need to be search. This airport had both a body scanner and a metal detector so when I was directed towards the body scanner I said that I couldn’t go through it because of my CGM. I could go through the metal detector though.

This airports procedure is to call in the manager when someone opts out of the body scanner and I had to wait until he became availible. I had a very long layover so at least I didn’t have that stress.

When the manager arrived, I explained again why I was opting out and he asked if I would agree to a search. Sure! Then, he had to find two female agents to perform the pat down and swab of my pump and CGM. At this point, my bags had been abandoned at the end of the x ray machine so another agent was trying to reunite them with their owner. I could see them and him and identified myself, and the manager asked if the agent would gather them up and keep them behind the desk until we were done. I have to say even though this airport gave me the full works both times I went through the agents could not have been nicer about it. They were all so lovely!

The pat down was uneventful and I thanked everyone for being so nice and not making the experience any worse than it already was. I was almost home and I let the stress go.

My next flight is in July when I’m flying to the US with my family. Here are a couple of things that I will be doing for that trip;

Insulin Storage – when I travel to the US and I’m going for a couple of weeks I bring a flask. Yes, a thermos. And use reusable ice cubes. It works and it works brilliant! The ice cube are still a little bit frozen 24 hours later, which is usually when I get to my final destination.

I get a new Doctor’s Letter every couple of years.
You never know when you are going to need this or if ever. I never needed the doctor’s letter until I started travelling with an insulin pump but I always had it. It pays to have it. I always make sure that my letter clearly states what devices should NOT go through what. I have been questioned a couple of times and on this occasion I was clear that I knew that the manufacturer states that my insulin pump cannot go through x-ray and that my CGM cannot go through any body imaging scanners because of the transmitter and that this instruction comes from the manufacturer.

I always bring some extra supplies.
One plus half times of supplies. Some sites recommend that you bring double of what you need but this takes up so much space. I definitely bring twice as much insulin because I once had it spoil in the heat. But the rest I just bring maybe a couple of days extra supplies.

Airport Security – Try not to stress too much about this. Know your rights, stay calm and polite (this can be a huge challenge), if you run into one of those people who makes you not want to be polite ask for that person’s manager.

This information isn’t really useful to anyone but I just thought it was considerate and worth mentioning;
We usually fly with United Airlines AND they have Nutritional information on their meals!!!!

On my last trip to the US I came across Sharps boxes in the bathroom of Newark Airport!!! How cool is that?

 

There is loads of information on really good diabetes websites and here are a couple I found really useful;

Diabetes UK Travel Tips
Good Blood Glucose Management on Long Trips from Insulin Nation
Medtronic Travel Information
Animas Travel information 
Diabetes Ireland Travel Tips

Travelling

Diabetes Blog Week – Day 4 What brings me down

This week is the 8th Annual Diabetes Blog Week and my second year participating. Diabetes Blog Week was started by and is still instigated by fellow type 1 Karen Graffeo in Connecticut who blogs at Bitter~Sweet Diabetes​.

This week is as a way for Diabetes bloggers (well over 100 participants from ALL OVER the World each year!) to share a huge variety of perspectives on issues relating to our illness. Learn more about Diabetes Blog Week here.
#DBlogWeek

Diabetes Blog Week – Day 4 – What Brings Me Down

Today let’s revisit a prompt from 2014 – May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks again to Scott for this 2014 topic.)
I seem to be in a good place with my diabetes management at the moment, as I’m blogging less about my own diabetes experiences and more about what is going on in my wider diabetes bubble.

So my “What Brings me Down” blog post is more about all the things that are frustrating, overwhelming and make me want to cry in the world of diabetes advocacy.

However, there is one area that does bring me down recently. Several nights, not in a row, of CGM alarms disrupting my sleep are bring me down. Is it just a phase or is it a new trend? Being overwhelmed with the night time alarms not being consistent so I can’t use the information to make changes is bringing me down.

Oh and the thoughts of doing basal rate checks is bring me down too. I’ve no problem doing, no, I’ll correct that to, I have the least resistance in doing basal rate checks at night. Go figure that one!

My anxiety levels elevate a bit when I consider doing basal rate checks during the day because I’m always running around and I “chauffeur” during the day (school dropoffs and pickups). So, and please don’t be horrified by this, but in my 7 years on an insulin pump I have not done basal rate test in daylight. But since I learned more about Sugar Surfing last weekend I have a renewed ambition to tackle this.

What seriously brings me down is trying to explain what living with diabetes is like for me and not receiving compassion or understanding. Being met with the challenge of lack of knowledge and being met with a lack of empathy because the tabloid media and some health care professionals continue to reinforce the myth that diabetes is a self-indulgent condition and therefore deserved.

What brings me down is trying to fundraise for anything related to diabetes, especially to improve diabetes health care services in Ireland, in a world that doesn’t seem understand or want to understand why we need those things. What brings me down is how heavily we rely on our own community to fundraise when we are such a small one.

What brings me down is hearing that a new, much needed, health care professional has (finally) been appointing in a diabetes clinic only to find out that a vacancy or funding is pulled from another clinic in another part of the country. Case and point here;

“– In Waterford, the vacant Consultant post there was advertised last year and we have to wait over 6 months for interviews to be held and possibly up to a further year for the post to be filled.

– Following the transfer of a Consultant from Sligo Hospital to Limerick University Hospital, nothing is being done to date to recruit a replacement in Sligo.

– In Galway University Hospital, we are waiting for interviews to take place for the vacant Consultant post there which was recently re-advertised following the withdrawal of a successful candidate who was returning from abroad and who had accepted the post in 2015 and was due to start in 2017.” Source Diabetes Ireland

What brings me down is the fact that our health service published a standard of care document for children with type 1 diabetes in December 2015 and have absolutely no progress or indication that it will be implemented any time soon.

And finally, what brings me down is the fact that there is NO standard of care document for adults with type 1 diabetes and even if the health service ever gets around to publishing the delayed since June 2016 document for us, I feel like it will never, ever be implemented and I am on my own to advocate for myself.

It’s the never-ending-ness of the work needed in the diabetes advocacy world and the constant two steps forward, one step back and sometimes two steps back, that brings me down the most.

But I suppose it keeps me distracted from my own type 1 diabetes getting me down.
:-S

Spring is in the air.. and here come the hypos

Spring in my garden

Has anyone noticed their blood sugar/glucose numbers dropping lately as the Spring temperatures tease us?

Welcome to Spring, where it’s hot, it’s cold, it’s summer one day and winter the next.

We are having our first spell of warm weather this year. It is gloriously sunny and warm… and no rain. This little bit of sunshine gives everybody all sorts of excuses to be outdoors because we have been hiding away from the rain and greyness for months.

The temperature increased by more than a couple of degrees. And then … So did the number of low blood glucose events/hypos I’ve been having.

Not only that but I took a figary to spring clean during this warmness. I didn’t planned it, of course, and on this rare occasion, I didn’t think about my diabetes. It needed to be done and I had the motivation, so I just did it.

I don’t know how many glucose sweets I topped up by or how much chocolate I ate to prevent hypos. Or how many extra centimeters I added to my hips:-(

Temperatures go Up, so insulin doses should come Down.

Empowerment and Diabetes – My Journey

Last May, I was asked by the organisers of the Future Health Summit to give a presentation on how I became an empowered person with diabetes. Some friends asked if I could blog about it.

The reason for my topic choice was because the theme of the conference was Empowering the Patient, Information, Choice & Accountability and I decided to focus on Empowering the Patient element for my presentation. I feel like I am one, that diabetes does not have power over me, I have a lot of power over it.

The journey towards being an empowered patient didn’t happen overnight, for me. I would like to think that a person with diabetes diagnosed today would find empowerment much quicker than I did. But the two core elements that were pivotal in my journey didn’t really exist when I was diagnosed. Those elements were Diabetes Education & Support.

Obviously my Journey Began with diagnosis 23 years ago – 1993. Diabetes Education was extremely basic in Ireland back then, if it existed at all!

My diabetes management involved;

  • – Injecting a fixed amount of insulin twice every day
  • – Eating the same amount of food at the same time every day
  • – Checking Blood Glucose levels just twice every day
  • – And I was taught How to recognise & treat a hypo

For those first 6 years I felt like I blindly coasted through my diabetes care. I did what I was asked to but I had no idea why I was doing any of it, except to stay alive.

So what changed? What prompted me to get on the bus to empowerment?

This is going to sound corny but it was love. In 1999, I met this bloke.

Phil

This is Phil. We weren’t going out very long but he already had notions about our relationship and we weren’t going out for very long when he asked me for books or leaflets where he could learn more about helping me manage my diabetes. I was stunned! And for three reasons;

  • – He was the first person I met who didn’t expect me to educate him on something I barely knew myself.
  • – That the relationship was moving a bit faster than I had thought and
  • – that I had nothing, absolutely nothing to give him when it came to information.

What I did have was access to the internet at work. So the next day, during my lunch break, I “AltaVista’d” type 1 diabetes. If you don’t know what AltaVista is, google it! 😀

I couldn’t believe what I found – the list of websites containing information was so long. I found all of these organisations with websites that had tonnes of practical information such as the Joslin Diabetes Centre and the world’s leading research organisation, the JRDF. I had never heard of these places before.

I started reading all of this information before handing it over to Phil and it got me thinking that there might be a better way to live with diabetes. But that thinking got shelved for a while as this journey is not an express route and it required a couple of transfers to reach my destination.

1st Transfer–Diabetes Education

You’ll be happy to know that I, very quickly, realised Phil was a keeper and by 2003, we had been married a couple of years, had moved to US and we were thinking about starting a family. As soon as my endocrinologist heard this he marched me off to a dietitian to learn about counting carbohydrates, insulin dose adjustment and sliding scales.
Family 1family 2

I had been diagnosed 10 years by the time I found diabetes education which now seems too long. But this knowledge gave me some of the control over this thing called diabetes for the first time. And I felt supported; supported by my diabetes team and supported with knowledge. I didn’t realised it then but my diabetes team in the US was the first I experience of patient centred care.

2nd Transfer–Diabetes Peer Support

The 2nd transfer on my journey towards empowerment was finding peer support.

By 2007, we had moved back to Ireland, had our second baby and I was increasingly frustrated and unhappy with the diabetes care I was receiving. In June of that year I found myself at my lowest point after leaving the most humiliating diabetes appointment I’ve ever experienced. But it propelled me into action. I knew there had to be someone out there who would make me feel listened to.

I went home and remembered a recent newspaper article about a new branch of Diabetes Ireland being set up in Clare. I called the number in the piece and the lady who answered was a fellow person with type 1 diabetes. What are the odds? She had had her second baby around the same time as I had and we were both new to Clare. We instantly connected and during the course of that conversation we realised that we both wanted to meet more people like us and to do this was to set up diabetes support groups.

By the end of 2007, we had diabetes support groups and they continue to be a source of information, motivation and inspiration for me. And they, with some information from Diabetes Ireland helped me find a diabetes team that works amazing for me.

support group

Destination Reached – Person Empowered

This is where I feel my journey towards empowerment was completed. I had reached my destination.

Yes, I took the scenic route to being an empowered person with diabetes. An empowered person with diabetes who can drive her own diabetes. And I became that by finding two very simple, very basic diabetes resources but yet they are not accessible to everyone with diabetes in Ireland.

The first necessity is Diabetes education is as important as giving someone who wants to drive a car lesson and some theory. Would you really put a beginner in the driving seat of a car without it? And not just structured diabetes Education, like the university style of lectures. This education has to be an ongoing 2-way conversational style of learning, where a person with diabetes can grow in confidence, drive their own diabetes and the instructor takes more of a back seat each time.

The second is Diabetes Support and for me that comes from three sources;

  • At home – I may be the person with diabetes but my whole family lives with it. The more supported I am at home the more successful I will be in my diabetes management.
  • My Diabetes team – My journey has taught me that I need a health care team who listens to me, acknowledges all that I do to manage my care and doesn’t just focus my failings. A team that continues to teach me and a team that continues to learn.
  • My diabetes Peers – the most undervalued, underused resource available for people with diabetes today. Who else knows what it’s like to live with diabetes than other people with it. We learn so much from sharing our experiences, so much that can’t be taught in a hospital appointment.

So while my journey towards empowerment has been completed, my life with diabetes journey still continues. And I hope to continue that journey for many, many decades.

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