Blood Sugar Trampoline

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

Social Media & Information Blindness

I’m beginning to feel like I am becoming blind to information if it’s not being blasted at me on social media. If it’s not a flashy click bait image. And I think it’s making my brain die slowly.

Photo credit Pixaby.com

Last week, my husband told me, (and I heard him tell me!!!, not the nod and yes response), that our broccoli in the garden was ready for picking and we shouldn’t buy any for a number of weeks. Shortly after being told this, like an hour, I was doing the shopping and saw that broccoli was half price. What a bargain, I thought and bought it. What happened to my brain? Where did that piece of information go??

Is it that I’m so used to having instant information and that information is so easy to retrieve at any time on any device that my brain has forgotten how to retain information?

Ireland in the 80’s it was so easy to inform people and be informed. We only had two tv channels (rural Ireland that is – No Sky channel for us), two national radio stations and maybe one weekly local newspaper, we did have a couple of daily national broadsheets too. this meant was it was extremely difficult to be unaware of anything newsworthy and if you needed to get a public information message to the people the telly and radio were both sure things.

These days though it’s extremely difficult to reach out to people with information. Unless, of course, you spend a large fortune in advertising and then there are still people who are unreachable.

When something changes in the diabetes health service how do we let people know?

In the last few years there have been at least three major changes that affect people with diabetes in Ireland. This is just off the top of my head.

  1. In 2014, the HSE rule which prevented people with diabetes from holding both a medical card and a Long Term Illness book was changed to allow it. This meant that thousands of people with diabetes had to be informed that they now needed to apply for the LTI and should not be paying a prescription charge for the diabetes supplies and medications. I’m still coming across people in the diabetes online community who haven’t been informed of this!!!
  2. In April 2016, Restrictions were placed on blood glucose meter test strips for people who do NOT use insulin. See here.
  3. Most recently, April 2017, the change in the sugar content of Lucozade in both UK and Ireland. Every diabetes organisation and group carried this news and it even made it into mainstream media in both countries. There were posters in diabetes clinics (however, we are all looking down at our phones) all over the country. And there are still people who have not received this information, even though they are actively engaging in social media for their diabetes information. There are also people living in this world who even if you put the information right under their noses they still won’t see it. And given my broccoli evidence above this could be me!?! Aaaahhh!

This makes me hugely worried for the all of those people with diabetes who do not engage online for diabetes information. We tend to forget that a very large portion of the diabetes community is not engaged online at all. We can’t rely on the diabetes medical teams to reach every single person who attends their clinics with new information – it’s just not feasible or even possible. Someone will always slip through.

I think this is why offline diabetes peer support can play a huge role. We can help make sure noone falls through!

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.

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

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…. 🙁

Ireland Insulin for All

A few weeks ago, I went to an event in the Diabetes Ireland care centre in Dublin. It was the launch of their 50th year anniversary, which I wrote about here.

Chairperson, Hilary Hoey mentioned that the first Annual General Meeting took place on April 2nd in 1967 and it was there that the committee declared their first mission was to make insulin free to people with diabetes.

Two months later it was!

And in 1971, all other diabetes supplies were included on the newly launched government sponsored Long Term Illness scheme, which every person living with diabetes avails of today.

Hilary also said that people with diabetes were the first group of patients in Ireland to come together and take control of what they needed to manage their health.

I will never take this for granted! But I can’t stop thinking about all the people with diabetes in the world who still don’t have access to the basics of insulin and test strips. Even those, living in the richest nation of the world, are struggling to pay for their insulin. The only way I know how to help is to blog about it and stand in solidarity with my fellow people with diabetes around the world.

I’ve been thinking a lot about where the journey of insulin began, how it got here and how we might help improve access for ALL.

Over the Christmas holidays, I read the book BREAKTHROUGH: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle. I found it fascinating; I couldn’t put it down.

The book begins its story in 1919 with how the idea of reproducing insulin came about and follows all the key players; Frederick Banting, Charles Best, Eli Lilly and Company and Mr. and Mrs. Charles Evans Hughes, one of the city’s most highly respected and recognizable citizens, and their daughter, Elizabeth, who was one of the first patients to receive insulin.

Back in 1922, those who were treated first were the patients who could afford to send their children to places like the Joslin Diabetes Centre. Those who survived long enough to be treated were those who could afford to send their children to specialised hospitals. It would seem that the world hasn’t changed all that much between the haves and the have nots in one hundred years.

Renza from Diabetogenic talks in her post a few weeks back about being conflicted between her excitement about new technologies in diabetes treatment and how most people in the world won’t have access to them.

It’s odd to think about how the world has changed and how it hasn’t.

Yes, in those 95 years since insulin was first manufactured, the majority of the world’s population of people with diabetes do have access to insulin. We are grateful BUT we should never forget about those who do not have access. We need to fight for them. They need us to help them fight for them. Let’s try to remember that!

We can do so by supporting organisations such as;

  • International Diabetes Federation’s (IDF) Life for a Child Program
  • Sign T1 International‘s Type 1 Diabetes Access Charter
  • Donate any unwanted, in-date insulin in your fridge to UK organisation; InDependent Diabetes Trust (IDDT)  who are part of the Insulin for Life Program
  • Support JDRF’s #Coverage2Control which calls on US health insurers to provide three things for people with T1D to help them control their disease, including: 1) keeping out-of-pocket costs for insulin and diabetes management tools predictable and reasonable, 2) giving people the freedom to choose the insulin pump that’s right for them; and 3) covering all life-saving technology, including artificial pancreas systems.

 

From the book jacket of BREAKTHROUGH: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle (St. Martin’s Press: September 2010: hardcover) by Thea Cooper and Arthur Ainsberg.

1922: The first patient, Leonard Thompson a 14 year old boy with type 1 diabetes is given the first medical administration of insulin. Previously patients with type 1 diabetes would be put nto starvation diets and would have only months to live. Leonard lived another 13 years before succumbing to pneumonia.

1922: As news of insulin’s success spread, Banting and Best begin receiving letters asking for help for others with type 1 diabetes. Banting and Best improve their techniques for the production
of insulin and Eli Lilly becomes the first insulin manufacturer.

“In 1918 Elizabeth Hughes stands in the kitchen of her family’s elegant townhouse in New York City, fiercely gulping water from a glass. She is the daughter of Charles Evans Hughes, one of the city’s most highly respected and recognizable citizens. Although Elizabeth doesn’t yet know it, she has what was then an unerringly fatal disease – juvenile diabetes mellitus. In a few short months, what had been a happy, active childhood will be eclipsed by the mounting symptoms of ravenous hunger and insatiable thirst.

In Toronto, a surgeon named Frederick Banting and a student named Charles Best succeed in purifying insulin from animal pancreases. Within months this miracle is nearly derailed by scientific jealousy, intense business competition, and at least one fistfight. In a race against time and a ravaging disease, Elizabeth becomes one of the first diabetics to receive insulin injections. As less fortunate children die, the discoverers work with a little-known pharmaceutical company named Eli Lilly and Company to make insulin available.”

My Diabetes Blog Anniversary

Last Wednesday was the 7th anniversayof the day I published my first blog post. It felt good, yet so nerve wrecking. I wrote a bit about my diagnosis, taking control of diabetes and how I found myself where I was back then.  I still don’t know the answer to Why diabetes? And why Me?  Here it is….

Why Diabetes? Why Me?
24th May 2010 – Grainne Flynn

When I was diagnosed with diabetes, it was 1993 and I was a 20 years old student; living the typical student life.

That all changed with diabetes. For a very long time I only knew what I absolutely needed to know about diabetes to survive. I fought it but not in a good way. My attitude was that diabetes was not going to get in my way! My friends and family would ask about it and how I was getting on, I replied “fine”. I had no idea of how I was doing, health wise, my medical team didn’t talk my language, I didn’t asked questions, and I didn’t want to be there.

What changed? I met my now husband who had decided I was worth having around for a long time, and convinced me I was worth it.

I started internet searching for information on diabetes to give to him and I started learning about diabetes for myself. Things like how exercise affects my blood sugars, about how insulin works once I inject and how food affects that process and lots, lots more. I even met another person who had type 1 diabetes who I couldn’t push away because she was the wife of my husband’s friend.

Through this friendship, I realised how important it was for me to have people my own age around me who knew what having diabetes felt like.

I’ve come a long way since then. I started a support group for people with type 1 diabetes in my home town in 2007 and my diabetes family has grown quite a bit. People call me with their stories and I listen, hoping that in some way I’m helping them. I wished that I had had someone I could’ve talk to in the beginning but knowledge about diabetes was poor back then.

Now, I want to inspire people to go out in search of the knowledge they need to live a great life with diabetes. I want to encourage people to start reading the numerous books on the subject and to find other people with diabetes on the internet or in their area. More and more supports groups are forming around the country and if you don’t have one in your town yet then find us on the internet. We’re here!

Why Diabetes? Why me?

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