Blood Sugar Trampoline

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!

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…. 🙁

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

Diabetes Blog Week – Day 3 The Blame Game

This week is Diabetes Blog Week which is in its 8th consecutive year. This is 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 multitudes of D-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 3 The Blame Game

Have you experienced blame and judgement from your healthcare team or someone else in your life – friend, loved one, complete stranger. Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had. Now, the game part. Let’s turn this around. If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself? Let’s help teach people how to support us, rather than blame us! (Thank you, Brian, for inspiring this topic.)

I tend not to judge the friend, acquaintance or complete stranger too harshly when the say something that doesn’t particularly sit well with me. I find when I use this moment as an educational and awareness one we both walk away happy… I hope.

However, I actually feel a lot of judgement from a select few people with type 1 diabetes on all that I do to manage my diabetes. I was reminded of this by these words:

“You know, someone at my work has diabetes and they don’t seem to have all the things you have to manage it. Maybe you should try to simplify what you are doing. You don’t need all of those things.” from Diabetogenic.

I immediately thought of a conversation I’ve had that was so similar but this conversation was with a person with type 1 diabetes.

It was during the time that we were organising the very first Thriveabetes Conference. We sent out press releases to every media outlet we could think of, and a researcher from a very well known radio programme called me to, you know, do research. I immediately launched into my Thriveabetes “Sales” Speech about the power of peer support in helping people with type 1 diabetes and why I believed the event was so important.

It was only when I talked about the mental burden that living with type 1 diabetes can sometimes bring that this person revealed that she was a person with type 1 diabetes. She went on to challenge what I had said by saying that she disagreed with my personal experience of living with type 1 diabetes. She did not feel that way at all. She said that just got on with it, diabetes didn’t get in the way of her life at all and she didn’t think about her type 1 diabetes much at all. I did respond that I thought that was great for her but my experience and a lot of people I knew shared my views.

She made me feel like a failure! She implied that I was doing way too much to take care of myself and making a big fuss about an illness that she found easy to manage. I choose to believe her because I don’t know this person. Who am I to challenge her about how well she manages her diabetes? But I felt I was not getting the same respect.

It was so hurtful! And I didn’t know how to respond! I think that I may have gotten her back up a little with whatever my flustered response was because we never got a call back to do an interview.

This wasn’t the last time that similar conversations have happened. But I now feel that I handle them better. I jump in straight away with compliments on the diabetes knowledge and commend them for finding their way. I express my mild jealousy on how easy they have it. If this person allows me to explain a little about how I feel, that should be all I need. I hope that this is enough to illicit a smidge of respect and understanding that not all people with diabetes are the same.

Thankfully, it’s only a few select people that I have had these types of interchanges with, and the Diabetes Community is overwhelmingly the best bunch of people to hang with whenever possible. As experience at the recent #SugarSurfingDublin workshop 😀

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.

Type 1 Diabetes and Pregnant

I’m going to be an auntie again, after a 7 year gap in the birth of nephews and nieces. It’s going to happen any minute now. An-ny minute!!!

And like any good big sister I’ve been sharing valued advice about the last days of pregnancy. I’m sure it’s very welcome advice too:-D OMG, I can’t wait to kidnap babysit this small baby.

ONE MOMENT PLEASE! Sarah, please tell baby to get the head down, engage and one big whosh from in there:-)

WHERE WAS I? All this sisterly advice has prompted me to remember being pregnant myself all those years ago and what I wish I knew then. It’s also one of the questions most asked by young women with type 1 diabetes. In fact, I remembered being asked by two young women, separately, but during the same event. I’m only too happy to share this because I didn’t have anyone to ask before either of my pregnancies and I really wish I had.

These days, there are a couple of books written by women who have been there, namely “Balancing Pregnancy with Pre-existing Diabetes: Healthy Mom, Healthy Baby” by Cheryl Alkon, and Diabetes Daily’s “Pregnancy with Type 1 Diabetes: Your Month-to-Month Guide” by Ginger Vieira and Jennifer Smith.

And there are a number of great blogs and private community groups on social media where you can have a chat to others; have a look at SixUntilMe, BelowSeven,
Diabetes Sisters Pregnancy Section, Diabetes Forecast’s Real Life Stories and the Facebook group – Type1 Diabetes, Conception, Pregnancy & Motherhood in Ireland.

What I remember most from both of my pregnancies;

Two days before the birth of my first baby. HUGE!
  • I felt like I was eating ALL. OF. THE. TIME.

– I would eat my meals, get full half way and then have to force the rest of it down because I had taken my insulin before I started eating. That eating for two stuff is pure nonsense – my stomach shrank! I could only eat small amounts at a time.

– Then I would have to eat In between meals to bring my blood glucose levels up from hypo levels.

  • I wish I had acted on my instinct to take half my meal bolus before eating and half after if I needed it. And I also wished I was using an insulin pump and not Multiple Daily Injections at that time so I could have adjusted my background insulin to avoid hypo snacks between meals.
  • The anxiety of of having a tiny developing human attached to your dysfunctional body and to deliver a healthy human.
  • Being very tired during my first pregnancy and napping a lot. I remember being totally exhausted and wiped out during my second pregnancy.
  • How different it was giving birth in an Irish hospital compared to an american hospital. In one hospital I was treated like a queen and my husband was included every step of the way. The other I felt like I was in the way and I had to insist that my husband not be forgotten about.
  • At my first prenatal appointment I was given a printout of all the appointments I would have over the pregnancy, what would be done at each appointment and why. It was awesome! It showed me that they had a procedure for high risk pregnancies. My second pregnancy felt a bit like my OBGYN was making it up as he went along and my Endo didn’t really want to be involved that much at all. I did refer to the print out during my second pregnancy but none of the tests were done of No. 2.
  • I did not have an insulin pump or cgm for either of my healthy pregnancies. So I remember checking my blood sugars A LOT!
  • There were lots of medical appointments but I didn’t mind. I had more ultrasounds that a “normal” pregnancy and that was a huge perk!
  • Both of my babes were born by elective caesarean because my doctors suspected that I was having large babies. Even so, my first birth was an amazing experience filled with joy and excitement.
  • My second birth was not so. I felt like I was just in the way; that the theatre staff were getting frustrated with me for just being there. Only for a really good anesthetist my son would have been whisked off for a 24 hour blood glucose observation without me being able to hold him. He suggested that I could nurse my son while I was in recovery rather than allowing that staff member to rush him off. That was the best.

Today, my oldest baby will be thirteen next month; Yikes! My youngest is 10. They are both healthy, beautiful and outstanding young people. Neither has diabetes and for this I am grateful.

For anyone who is starting on your journey towards starting a family; it’s so worth it!

Having a good and understanding medical team makes a huge difference in being able to cope with all of the anxiety of having a tiny developing human attached to you.

Ask lots of questions-your doctors and nurses have all done this numerous times but you haven’t. So it’s up to them to answer all of your questions with patience and kindness even if it’s the tenth time they’ve been asked that question that day. Maybe even preempt a couple of your questions.

And most importantly, do a pre-conception clinic to get your body ready for this amazing journey 😀

Diabetes Discrimination in Career Choices

Lucky for me, or maybe for the world :-O, I never aspired to be an astronaut or an airline pilot for my career. But I have met just a few people with diabetes who did. In particular, a couple who all they wanted in life was to fly airplanes. But when they were diagnosed with type 1 diabetes they ruled it out.

At the Diabetes Hands Foundation MasterLab 2016 conference there was a fantastic presentation on “Diabetes Discrimination in the Workplace”  that prompted me to feature this issue. I’ve divided it into two posts though as it was getting a bit long.

The first of which is how diabetes may affect your career choice. The second post will feature discrimination in your workplace and what your rights are.

Did you know that it’s only since 2015 that a person with type 1 diabetes can apply for An Garda Siochana in Ireland? But there are still difficulties for people with type 1 diabetes who want to join the defense forces, emergency services, railway workers and some careers at sea? What this probably means is that no one with type 1 diabetes has succeeded in passing the fitness tests to qualify for any of these careers. (source; Diabetes Ireland). But other countries don’t have these restrictions. Why can a person with diabetes be a member of the police force in the US and not be in Ireland? Well, it’s because these rules are being challenged in those countries and winning!

In the UK, some NHS Ambulance Trusts, still have restrictions in place on people with diabetes who wish to be ambulance crew. But these restrictions are being challenged.

In the US a person with diabetes CAN be a firefighter or a police officer! You CAN be a commercial pilot in the UK and Canada but not in the US. This is being challenged also.

My point is if you have a dream, if you know what you want to do with your life, don’t let people put you off. If you feel that you are right for any of those careers, then go for it! Where there is a will there is a way!

Here’s the video from MasterLab 2016 – well worth a watch!!

I had hoped to publish part 2 of Diabetes Discrimination along with this post but Ha! Intentions were good but time did not cooperate. Part 2 next week!

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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