Blood Sugar Trampoline

Living with Diabetes is like Parenting

My life is finally slowing down after a number of weeks of events, diabetes awareness “stuff” and children being off school for mid term break. I have so many blogs posts in my head and no time to write them. But soon…

In the meantime, while I was fast asleep, my husband had a moment of inspiration about living life with type 1 diabetes and what common human experience might come close to describing the type 1 diabetes experience? Yes, there are a lot of questions to ask about why I was asleep and he wasn’t but not for publishing online 😉

So here is a guest post from my hubby.

Gráinne was away at a conference recently, presenting the “patient experience” to a group of 100 almost entirely healthcare professionals. She came home the first evening very excited by not only how well her talk was received, but the general tone of the conference in general.

I’m sure she will fill in details about the conference in a separate post, but I wanted to write a quick blurb about something that struck me at 3am (don’t ask): how does anybody gain insight into the life of a person with type 1 diabetes in an effort to build empathy?
The intellectual approach of explaining all the things one does to manage type 1 is important but somehow inadequate.  Living with (and sleeping next to) a person with diabetes (PWD) can give you some insights, and loving a PWD to the extent where you have some of the same fears and worries they do at a very emotional level yields a whole new level of insights.
But such experiences are hard-earned and not wholly practical. To start with, I’ll take issue with others sleeping next to my wife on anything other than an exceptional basis 🙂
What struck me is there is a very common human experience that might come close to describing the type 1 diabetes experience: parenthood.  I may not have diabetes, but I live with somebody who does.  And…I am a parent of two pretty amazing kids.
What can parenthood do to help build empathy for those living with type 1?  Let me share a partial list:
1. Say goodbye to a reliable full night of uninterrupted sleep.
Even in her pre-CGM days, Gráinne would wake up in the middle of the night not feeling right. Her sugars could be high or they could be low, or she could just be coming down with something. Regardless she had to check her sugars and then decide how to react to the information.
I wouldn’t say it’s quite like having a newborn baby, but it’s pretty close to having a 6 month old baby who can’t reliably settle. But without the option of seeing if the baby will be able to settle herself…and without the possibility that the 6 month old baby will grow out of it.
2. There is no rulebook.
 
A new parent is often desperate for a manual on “how to be a good parent.”  What you learn as a parent is that every child is unique and has their own set of needs. You just need to figure out what works best for the child in front of you at the time. And of course what works for a two year old is not what works for a twelve year old: the “rulebook” for parenting is forever changing.
Type 1 seems to work in much the same way. There are so many variables in life that what worked for you last week may not work for you this week. You just take on whatever challenges type 1 throws at you, and deal with them in the best way your sleep-deprived, hypo-affected brain can manage.
3. Frequent guilt.
 
We’ve all as parents done things that we regretted. Maybe it was giving a punishment that was in retrospect overly harsh. Or maybe we’re worried that we’re being too lenient, or not helping our child learn lessons the hard way because we’re spoon-feeding them the answers.  Or maybe our child is struggling in school, or struggling socially, or trying really hard in a sport that they love but are lacking the skills to be really good at…and we feel somehow responsible for this and guilty that we’re failing them as parents.
If you have type 1, guilt about “not managing your diabetes” seems to be there. Always. That bit of extra chocolate you had because it looked nice? Unless you accounted for it perfectly (and see point 2: you probably didn’t account for it perfectly because there is no rulebook), you’re probably going to see the result of that “indiscretion” in your blood sugars. Not getting the HbA1c result you hoped for?  More guilt and self-loathing.
4. Low-grade worry.
As parents, we often worry about our children’s future. Some of these things are those over which we have control (and feel guilty about doing “wrong”). Others are longer-term things over which we have no real control: is the planet going to be habitable by the time my grandchildren are born? And every so often, we think about our own mortality: what would happen to our children if Gráinne and I were to die unexpectedly?
These aren’t necessarily things that keep us as parents up at night (those are more the “guilt” topics!), but they are the things that can weigh on the mind of a person with type 1. Mortality is a much more real presence in the life of someone with type 1: the very medication that is needed to keep you alive can also kill you (or worse).
5. Lots of “outside” advice
 
New parents (and experienced parents!) are often awash in advice, both solicited and unsolicited.  It is advice commonly wrapped in “you should” and “never” and “always”…very emotionally charged terms.
 
Have you ever talked to a mother who wants to breastfeed but wasn’t able to make it work for whatever reason?  Feeding her baby with a bottle can bring on a whole world of emotions with that simple act of providing nourishment to her child, and that’s before the very “helpful” commentary from some well-meaning individual: “breast is best!”
The world of diabetes management is awash in advice, much of it from medical experts and some of it from crackpot experts who read an article about “how cinnamon can cure diabetes” or some other such thing. But much with parenting, what a PWD must do is learn to figure out what advice is helpful to them and use that, whilst figuring out how to deflect and ignore advice that does not.
There are more parallels between “parenting” and “managing type 1 diabetes,” but this has hopefully given a taster based on my perspectives as a “diabetes insider-but-outsider.”
There’s one thing, however, that is DRAMATICALLY DIFFERENT FROM BEING A PARENT.  Parents do not have any sort of scorecard. I mean okay, if you have killed your child violently are severely neglecting them to the point their health is in danger, you’ve clearly failed as a parent…but beyond that parenting is pretty much a “pass” sort of proposition…our children grow up, leave the home, and succeed (or fail) largely on their own effort, merits and socioeconomic position.
But in the world of diabetes…there are all sorts of numbers. The most notable one has been mentioned here a few times: HbA1c, or the “time-weighted average blood sugar over the past three months.” Doctors have historically focused on this number which is about as useful for an individual as the Body Mass Index (which is to say: not terribly useful).
With the advent of CGM and FGM technologies, they’re now starting to focus on “time in range” which is arguably a better indicator of overall diabetes management and overall health, but it also somehow fails to account for the fact that there are just so many factors over which a PWD has no control.
That’s the thing: most PWD who are armed with the best of knowledge, tools, and medicines will struggle to achieve their target HbA1c or time in range.
Imagine if we were to devise a “parenting index” for each and every parent, as a value between 0 and 100, and we set it up in such a way that it’s pretty much impossible to get a 100, or even an 80. Why? Because your children have a mind of their own, you can’t control them 100% of the time, there are people other than you influencing their lives, and you’re human so will make mistakes.
But you as a parent know that “100” is the best possible score, and so you try really really hard to get 100…you’re trying to do everything the experts say you should be doing, you’re spending lots of money and time to achieve perfection and love your child like no parent has ever loved their child.  But year in and year out, you struggle to get a score over 60. Your best ever score was a 77.
And now ask yourself: Are you a failure as a parent?

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.

My Insulin Pump Dress Challenge

I don’t do dresses very often, much to my husband’s disappointment. I just prefer having pockets to shove stuff into and I hate when my legs are cold.

But there are occasions where a dress is called for or, in the case of last Saturday night, I’m sick of looking at them in my wardrobe and never wearing them.

When you have type 1 diabetes and wear an insulin pump where to put it in your dress does present a challenge, for me anyway. I know lots of women have figured it out for themselves but I am still searching for the solution that works for me.

Over the last seven years of wearing an insulin pump, I’ve tried a couple of different ways to wear it but none have worked really well especially when sheer tights (also known as pantyhose) are involved.

The first thing I tried was one of those thigh support bands. My mother found it in her “magic” rubbish box (don’t ask. But I suspect every Irish house has one). It was really old and it worked reasonably well. I folded it over and slipped the pump in the fold. It did slip down when I wore tights but very slowly. Then the older it got the more the elastic in it turned to dust.

This summer, I bought a new one but even though it was the largest one I could find it was so tight it cut into my leg and was extremely uncomfortable.

I knew I was going to wear a dress again last weekend so I came across really wide elastic and Jimmy-rigged a thigh band out of it. However, I only tried it out tight-less and was too jet lagged to give it any more effort.

So on the night, when I was all dressed up and heading down the hotels stairs my jimmy-riggery slid down my leg like it was a child on a slide! So, I tried to relocated the pump into my bra and without giving you way too much information there just wasn’t any room in there, it was uncomfortable and it made a lump. But I was going to live with it.

Until my husband said there’s a Tesco near here, let’s just pop in and see if we can find something that might work. I was thinking that one of those arm bands that joggers wear to store their phones might work and it did. It was comfortable but I still felt it was unsightly.

Photo credit Conway Photography.
Pete, Pam & Cayden Kavanagh, then me with Phil

I’m still on the hunt because I’d prefer a thigh solution and I would love some suggestions with photos and links if possible.

Begin!

 



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

Diabetes Cured- What I’d Do First

I don’t know how long it took me to realise after my diagnosis of type 1 diabetes that what people were telling me about the cure being found in five years was total tripe! But I did! Not only that but I actually gave up all hope of it. Not in a bad way, I just got on living my life with diabetes and tried new treatments and didn’t spend much time thinking about a cure.

That is until I heard Aaron Kowalski speak at the Friends for Life UK conference in 2014. This talk was the most EXCITING and positive that I attended at this conference and I came away with a solid belief that the next best thing to a cure (either the Artificial Pancreas or Beta Cell encapsulation) is probably more than 5 years away but it’s close.

By the way, there is a Friends for Life UK conference happening this October and I believe there are less than 100 tickets left which can be booked here.  Find out more from their Facebook page.

Anyway, back to a diabetes cure and what if there was, some day, a cure? What would I do first?

I’ve struggled with an answer to this because there are so many things I could do, like eat a whole chocolate cake in one day but I feel like I really wouldn’t truly feel happy after the first slice. but what would I do first and most enjoy?

Diabetes Ireland’s Research Section

Then it came to me in a dream a couple of weeks ago and I remembered to write it down. I was on a very long, leisurely and invigorating walk. It was somewhere beautiful like the Burren, the view was spectacular. I was carefree and felt weightless. I was not one bit worried about my glucose levels at all. I didn’t have my glucose meter or supply of glucose with me – my rucksack so light. It was a good dream! It was a dream that made me feel happy when I woke up.

It was a dream where I didn’t feel lost if I woke up tomorrow morning and my type 1 diabetes was gone. I’ve been doing diabetes over half of my life and a lot of what I do is habit. I do glucose checks without thinking. Not only that but my blogging, advocating, reviewing educational material for pharma companies & event organising takes up so much of my life and I love doing it. So what would do instead? I suppose the answer is anything. And whatever I wanted.

Now I was on a roll and I thought about what it would be like to eat when I was hungry I may even enjoy food again. Be enthusiastic about delicious food instead of seeing meals as math problems.

Or What would it be like to go to the beach and not worry about sand getting into my medical devices or trying to keep test strips and insulin cool? What would it be like to go through airport security like a person without diabetes-oh wait that actually happened 🙂 see here. What would it be like just do something spontaneous?

What would it be like to have all that space in my brain that’s currently occupied by diabetes related decisions?

What would it feel like to not know what my glucose so levels were every minute of the day, but still know that they were normal???

Well now I’ve opened the can of worms I can’t seem to stop.

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

My life with diabetes this week

It’s been a busy week in my diabetes world and before I launch into it I would like to disclose an event I am attending this weekend.

I do a lot of volunteering in the diabetes blog space, advocating space, diabetes event organising etc. Because of the volunteering I do, I was asked if I would allow my name to go into a hat to select the Irish representative to attend Abbott’s European Diabetes Exchange forum (‘dX’) which is being held in Amsterdam, Netherlands from Friday 16th June through to Sunday 18th June.

And because of luck, my name was the one that came out of that hat.

The mission of dX is to create a place where bloggers from all over Europe can meet and exchange ideas in a fun and engaging way, and discuss matters that affect the diabetes community. This is the third year of this event and the theme is focusing on the importance of people with diabetes achieving their dreams:

DREAM BEYOND: YOU’VE GOT THE POWER!


I am very excited about attending this conference to meet other diabetes bloggers and advocates from all over Europe. I’ve already connected with some of the them through twitter. But also I’m excited because unlike other company blogger events the agenda for this one is about helping us become better at what we do without it costing our own personal health. This is something I have struggle with for a couple of years now.

Abbott are paying for my flights and accommodation but all thoughts and opinions will be my own. I will be tweeting, probably not much though, using the hashtag #dXAmsterdam2017 and I will have lots of news to share with you in upcoming blog posts and of course, I will be very interested to hear how the Freestyle Libre is doing in Europe.

And now for my week in diabetes….

 

FOCUS GROUPS

Last week, I was asking myself “why am I volunteering for something else that I CLEARLY don’t have much spare time for?” as I found myself getting up at a not so reasonable hour in the morning to catch a train to Dublin to attend a HSE Focus Group session.

I had asked myself several times why I was going, and was I really a good representative as a health service user? What was I really going to get out of it?

Well, it turns out it was really interesting, really informative and I really, really hope that we have helped shape our health service for the better.

And focus groups work well because people are gathered in a room away from distractions. The information shared in a group like this just can’t be captured on online surveys, emails, or instant messages. So much information came from sharing our experiences, but so much more information came from listening to others and comparing our experiences. It was eye opening! We may live in an online world but some things cannot replace having face to face contact.

“You really don’t know, what you don’t know” from the Dunning Kruger Effect.

 

MY LIFE WITH TYPE 1 DIABETES WITH AN INFECTION

My diabetes related story comes from the train journey to attend this focus group meeting. People with diabetes are susceptible to more infections than people who do not have diabetes because bacteria LOVES glucose!! I’m sure that’s the scientific reason.

As I write this post I am uncomfortably aware that my husband’s aunt reads my posts religiously and I may be over sharing.

I don’t often travel by train but the universe aligned and it made more sense for me to train it on this occasion rather than drive. And it was so much nicer! Plus, I could do some writing while i travelled. Bonus!

About an hour from Dublin, I felt a little bit off, a bit flushed and some chills. I felt a certain twinge that I needed to go to the bathroom. And when I did I realised that a full blown UTI was flaring up. And it caused me to double up in pain. Thankfully, it was a spasm and eased. I sat in my seat trying to weigh up whether I should turn around and travel home on the next train or trying to manage the situation for the 4 hours I was going to be in Dublin.

I decided that I would push on as I had had worse UTI’s and adopt a wait and see attitude.

I used to get UTI’s a lot, like a couple of times a year. And they would just suddenly go from zero to horrific in an hour. They also, ALWAYS seem to happen outside of GP surgery hours, which meant a trip to the out of hours GP service in the middle of the night and scrounging for antibiotics.

Thankfully they’re not as frequent now and I seem to be able to keep them from becoming horrific all of a sudden with over the counter treatments. Except for this day where I’m trapped on a train, in a room with strangers, stealing everyone else’s water, legging it to the bathroom at every break. The worst part of the trip home was the transfer to a 30 minute journey in a carriage where the toilet was out of order. It was excruciating! I want to thank the lady who sat opposite me and kept me distracted.

Once home I have a supply of over the counter treatment which started to work immediately and thankfully I’m recovered. And AMAZINGLY my glucose levels didn’t seem too out of whack during this infection.

Til the next one…. 🙁

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