Blood Sugar Trampoline

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!

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:-)

Irish Blog Awards Long list

Aaaageees ago you may remember that I ask for you to nominate this blog and the Thriveabetes blog for an Irish Blog Award. Well, guess what!!!!

We all made the long list!!! Both Thriveabetes and Blood Sugar Trampoline are in the Best Health & Wellbeing Blog category. And Blood Sugar Trampoline is also in the Best Blog Post category. I’m afraid I could not pick from all the amazing blog posts from all of you to nominate one for Thriveabetes.

So what’s next in this award process.

Well, now I have to wait and see if we make it onto the short list and the judging criteria for this is;

  • Is the blog regularly updated (at least once a month on average)? Yes
  • Does the design support or interfere with the reading experience? Yes & No, I think?
  • Is the blogger passionate about and knowledgeable about the subject? YES! YES!!!! and YES!
  • How easy is the blog to navigate? Uuumm yees?
  • Is the blog responsive to PC, mobile and tablet browsing? Yes

If we make the short list the next stage will be some of the dreaded Public Voting. And I suck at it!!!

“The shortlisted blogs will be opened up to a Public Vote so the more you promote your entry the better.
The Public Vote is worth 20% of the overall mark (the other 80% is decided by our judging panel). To help you out we will send you “vote now” buttons which you can use on your blog and social media.” from the Littlewoods Ireland Blog Awards webpage.

While awards don’t make the blog it would be nice to create more awareness of diabetes and the support available for people living with diabetes. You can never have enough awareness, and that is for sure.

Download (PDF, 692KB)

Things I’ve Learned about My Diabetes with a CGM

I have been using a Continuous Glucose Monitoring device (CGM) for six months and I feel that I have enough information now to share what I have learned about my diabetes management in those short months.

A couple of weeks ago I shared how I came to get my hands on this little golden nugget and you can read about that here.

So here it goes, in no particular order, what I have learned.

Rapid acting insulin is not that rapid at all!

If my blood sugar levels dare to go ⇑ and beyond, it could take up to 4 – 6 hours for the insulin to bring them back to normal. It is a major exercise in patience!!! And can lead to rage bolusing (i.e. getting extremely frustrated and bolusing more that reason dictates).

Before CGM, I would take a correction dose of insulin, go to bed, only to wake up in the morning to realise that it hadn’t lowered my levels as much as I had hoped and I had spent at least 8 hours with elevated blood glucoses levels.

Breakfast Blood Glucose

Hypo treatments don’t work fast either.

Glucose, even in its purest, most rapid form doesn’t work fast enough. This can lead to over treating but thankfully the CGM can help curb the overtreatment.

Angle of Arrow Interpretation ⇑⇒⇓⇖⇗⇘⇙

Interpreting what the angle of the arrow next to my blood glucose reading, means in terms of where my blood sugar levels are heading is not that easy but after a bit of trial and error can be achieved.

The alarms can be annoying.

The alarms! The alarms, in the beginning, were, can be annoying and did interrupt many nights of sleep. But they are there for a reason. And very good reasons at that.

The alarms are very useful learning tools.

I tried not to get frustrated with the alarms, especially the low glucose one, which I have set at 4.4mmols. This give me enough time to prevent an actual hypo and I’m still rational enough to decide how to deal with the impending train wreck.

Mostly I use the alarm as learning tool on how to adjust my insulin dose to avoid them. And it’s worked. Six months ago my high blood glucose alarm was set at 16.6 and now I’ve gradually brought that down to 13.3, it only very occasionally goes off (touch wood). They are especially helpful for dealing with days out of my routine and for food that I don’t have very often.

I’m self conscious about my gadgets and gizmos.

Since the weather warmed up I’ve been wearing short sleeves and my sensor, which is placed on my upper arm, attracts a bit of attention. This does make me think about wardrobe choices a bit more and if I really want to talk diabetes.

I sleep less.

This is both good and bad. Bad because I might be woken several times a night because of the alarms and good because I know that I will never have a hypo again without being aware of it. Sleeping through hypos was a huge concern of mine and the reassurance that my CGM gives me is invaluable.

Sometimes my CGM is not reliable.

Just like any other piece of technology I have noticed that there are times where I should double check my CGM reading with a finger prick check. The times this most often happens is usually the first day of a new sensor and when my blood glucose levels are rising quickly or falling quickly. So I still do 7 finger prick tests a day.

My blood glucose levels are within their targets 65% of the time.

Finger prick blood glucose tests give you a snapshot of where your levels are at that point. The CGM tells you where your blood glucose levels are ALL of the time. It’s the difference between having a photo or seeing the whole movie/book. Now that I have a starting point I can try to increase that percentage and spend more time within a healthier blood glucose range. I also appreciate knowing that number is over 50%.

My CGM does influence my behaviour.

That little graph display does influence my behaviour around food and it also helps me stem the spike in my post meal blood glucose levels. It influences decisions about my treats, such as helping me determine should I choose a full bar of chocolate, just 2 squares of the good dark stuff or on warm sunny days the ice cream. My cgm really helps me spend more time within my blood glucose target range.

It has helped reduce my HbA1c!!!

Yes! I had my lab work done at the end of May and I have had the lowest HbA1c that I have had in four years and the time before that I maintained close to this level while I was pregnant with my first child 12 years ago. I have not been able to stabilize this level at any other time. I have been using an insulin pump for 6 years and hadn’t achieved a lower number. Insulin pumps should be available to those who want them and it should be very much about a personal choice. But CGM’s, in my opinion, are way more valuable a tool for managing diabetes and should be strongly encouraged. Even if it’s just for a couple of months. I know they are expensive but in the long run they would reduce the number of hospital admissions for both hyper and hypoglycemia.

 

All in all, I am never giving this device up! Knowing where my blood sugars are at any given time has been so reassuring and relieved so much anxiety.

On a promotional note, I attended a presentation by Thriveabetes 2016 keynote speaker, Gary Scheiner on “Making the Most of Your CGM” where I learned lots of useful information and he has published a book on it, “Practical CGM“. You can register for Thriveabetes 2016 here.

The Blood Sugar Train Wreck

This train wreck started with a decision to skip the spud at dinner, in my opinion. We were having Chicken Maryland and so there was enough carb on the breading to double my usual dinner carb count and I decided to forego the mash potato.new doc 86_1

This middle/2nd dip below the blue line in my photo opposite shows the low blood sugar after dinner.

I, mostly, eat low to moderate carbs to help maintain good blood glucose management. It’s a decision that I made for myself and I would never try to make it for anyone else.

Having said that, the real, real reason I skipped the spud was to have an ice cream. :-S It was a Saturday and I like to have a special treat on the weekends. Being a stay at home mum, it kind of lets me know there is something different between weekdays and the weekends.

I feel like I’m digging a bigger hole for myself here!

Anyway, here comes the second questionable decision. My blood sugars plummeted after dinner and I was so SICK TO DEATH of eating glucose tablets that I opted for chocolate and jellies instead. I know! I know! Not the smartest idea. (Another big hole) I can’t even use the fact that my hypo was affecting rational decision making because it didn’t.

Lots of jellies!

Ok, now the predictable happen. ↑↑ Yep, blood sugars doing the opposite of plummeting, which eventually lead to rage bolusing because insulin does NOT work as fast as I would like it too.

Next up, the rocket train down again. At this point, I took 5 glucose tablets, I usually only take 2-3, to make sure it was well and truly taken care of and that I would not wake up again before I was suppose to.

There is no lesson in this post. I’m just frustrated!!!

But I survived! I learned! And I shall not beat myself up over it:-)

My Day in Food

This week I’m  taking part in the 7th annual Diabetes Blog Week, which runs from 16th to 20th May. Founded by Karen at Bitter Sweet Diabetes.

My Day in Food – Wildcard

WARNING – this post will be boring!!!

I feel like I’m the only person with diabetes in the world who doesn’t cook. I hate cooking!!! It goes back to my childhood where as the eldest girl it was expected that I would cook and I do NOT like being told what to do. 

It was also enabled by my husband, who when we met was vegetarian – I was reared on meat, potato & veg. I also am not a big fan of the spud either – am I really Irish!?! Anyways, he insisted on cooking and I didn’t put up much of a fight. 

So here’s what someone with diabetes, who does NOT cook, who would be me, eats on an average day. And it will be, as expected, very boring!

BreakfastMost mornings I go for the low calorie porridge. On weekends I go crazy and have 2 slices of wholemeal toast (dripping in butter😋😋😋) with two cups of tea. Can’t function without a cup of good old Irish tea.

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Mid Morning Snack; At least 2 cups of Coffee ☕☕ 

Lunch; Weekdays; Salad, protein, rye crackers for crunch! 😋😋😋😋 And a piece of fruit – whatever’s in season. On weekends; 2 egg omelette with whatever is in the fridge plus cheese, a slice of bread & a piece of fruit.

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Mid Afternoon Snack: Tea this time. ☕☕ at least

DinnerCould be anything! I am married to a wonderful man who DOES cook and is very, very good at it. In exchange I do LOTS of dishes – it’s actually in our pre-nup. This dinner is wholewheat spaghetti with a cooked from scratch tomato and a smoked sausage called cabanossi. And it was DE-licious!

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Dessert: Every evening I have a little something nice like Chocolate or ice cream. Plus a last round of Tea. I know, I know but there are worse things out there and I don’t have problems sleeping – so why not!

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And that’s it! Like I said, it’s not very interesting but it has minimum impact on my blood glucose levels and it’s what I like and what works for me. Find what works for you:-)

The Clinic Appointment Fantasy

I’m  taking part in the 7th annual Diabetes Blog Week, which runs from 16th to 20th May. Founded by Karen at Bitter Sweet Diabetes.

Today’s topic is The Healthcare Experience
Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with health care. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

I think I’m one of those few people who has changed my diabetes healthcare team more than the average person with diabetes. My current count is 7 clinics/endos. Is that a lot? It feels like a lot!

I could tell you all the things that have been said to me that made me walk from all those clinics/endos but that’s just too depressing. Instead I am going to focus on what my ideal clinic appointment would be like.

Over the years, I have collected a few requirements that I liked from each clinic/consultant to compile my “wish list” of how I would like my appointments to go. It goes something like this;

  1. Parking – you would think that when they built these giant hospitals, or even now that they are redeveloping them that they would build the multi storey car park first?!? I spent 40 minutes one day driving around until I got a space in a housing estate about ¼ mile away. IT’S A NIGHTMARE!!!
  2. The Waiting Room – I recognise that not waiting at all is a bit too much to ask, so wouldn’t it be nice if the waiting room was more sociable? I mean it’s a mini-support group right there. And what if there was tea and coffee available? I drive 1 hour to my clinic – I’d kill for a cuppa! There isn’t even a vending machine at most clinics I”ve gone too. Insomnia coffee
  3. The person who does the health checks should identify him/herself as what she is, as well as her name. Sometimes it’s a nurse, sometimes its a healthcare assistant – I would like to know.
  4. The doctor-in-training I see next, I would like them to listen more, I know I will probably never see you again but find out more about me and learn from me. Start a personal file on me in addition to my medical file.
  5. My endocrinologist – we will be seeing each other twice a year for a lot of years, so get to know me. My favourite consultant, who actually left me and not the other way around, always greeted me with a very firm handshake and a very hearty “How are you doing?” She actually meant it! And asked after my family. It was like being met with a hug.

Clinic visits are just so clinical. I spend so much time going through my team’s recommendations one by one, explaining why I don’t think they are going to work. I need to feel listened to. I would love to leave that building having met one or two new people in the waiting room, maybe even a friend, with a feeling of “I can do this” as I leave and have received a pat on the back NO MATTER WHAT!

NOTE: I also should point out that I am one of a minority who already has an insulin pump and a CGM. If I didn’t have either of those devices my list would MOST definitely include access to them. Some Irish diabetes clinics don’t even have insulin pump programmes or structured diabetes education and I am helping Diabetes Ireland advocate for these basic necessities.

The Other Half of Diabetes

This week I’m  taking part in the 7th annual Diabetes Blog Week, which runs from 16th to 20th May. Founded by Karen at Bitter Sweet Diabetes.

Today’s topic is The Other Half of Diabetes and I asked my other half, Mr. Blood Sugar Trampoline, who goes by the name of Phil, if he wanted to write something. I’m so thrilled he accepted. And speechless because…. well read for yourself.

 

The short version:

I’ve learned that we cannot control my wife’s diabetes any more than we can control world hunger, but by taking a proactive role towards improving the healthcare environment and by supporting her empowerment, my anxiety over her health is not much different than my anxiety over my own health…and we’re stronger as a couple because of her diabetes. 

The longer version:

Next week, Gráinne and I celebrate our fifteenth anniversary of married life together.  It has been a richly rewarding journey so far, and I look forward to continuing the journey for many many more years to come.  I met her a few years previous, playing together on a softball team.  I can’t say as to when exactly I became aware she had type 1 diabetes; what I do remember is that as I began to learn her management regime, it seemed to my science-trained brain to be something fairly anachronistic…not that I really knew anything about medical best-practices for managing diabetes.

Back when I was 12 or so (in mid-80s USA), a boy in the grade behind me developed type 1 diabetes.  All the more we were told was that he was sick, he’s better, but he can’t eat any sugar.  “Here, try one of these diabetic candies!”  Yuck.  A decade later, I discovered a colleague had type 1 diabetes, she gave me a short primer that basically involved “testing blood sugar” and “injecting insulin.”  But I was otherwise ignorant.

It turns out, Gráinne didn’t really seem to know a whole lot more than me – she knew there was an HbA1C number, along with her periodic blood sugar measurements, that were supposed to be “good” but was quite difficult to hit.  And she knew that she needed to somehow adjust her insulin dose to her current blood sugar readings.  She certainly didn’t know much (if anything) about carb counting.  As to what causes diabetes, how it affects the body, how behaviour and diet interact…these were all things that she wasn’t learning from her doctor.

So I asked her “where can I learn more about this?” And I asked myself “how do we fix it?”

I suspect my reaction to diabetes is similar to PWD who are scientifically-minded and wanting to get on top of this thing…only I have the luxury of not having the terror that is “I am going to lose my vision and my limbs and die in childbirth.”  (I failed to mention that as part of my diabetes education, I had seen Steel Magnolias, which frankly could be an entirely separate blog post.)

Certainly, there are echoes of my thinking in how a college roommate (and fellow physics major) took on his wife’s type 1 diagnosis in her late 20’s.  “This is surely just a simple function of carbohydrate, metabolism, insulin, and time that results in a blood glucose reading of X…”

As I am sure many of you were shocked to find out, it turns out it’s not quite so simple.  Fats, the kinds of sugar (including alcohol), fibre, hormones (stress and otherwise), circadian rhythms, fatigue…and other variables like insulin that can go off, injection site, temperature.  OMG this thing is so damn FRUSTRATING.  And it’s not even my body it’s happening to.

About a year after getting married, we moved to Minneapolis for a few years of “getting to know my people.”  We took advantage of the healthcare system there – my former colleague gave us a brilliant referral to a team of diabetes care professionals who really helped Gráinne learn some better tools and techniques for managing her diabetes.  For me, the most important outcome of this was that Gráinne started to become empowered in her own management.

When we moved back to Ireland, it was as if we stepped back in time.  There was no medical team looking after body and soul…just arrogant doctors who got upset when you didn’t do everything you told them (eating the same food every day?  Seriously?).  It didn’t seem that Irish doctors really understood the fact that diabetes is not a simple equation.  She has changed doctors way more frequently than is the norm in Ireland, seeking to find a fit as good as what she found in Minneapolis.

We can choose to see ineffective institutions as the enemy, playing the part of “victim.”  The doctors are to blame, they’re being paid the big bucks and are experts, they don’t know what they’re doing, they’re hurting me more than helping me.  OR, we can choose to believe in the humanity of the individuals within these institutions and work to allow that to be expressed; the problem may be less with the individuals and more with the environment in which we all find ourselves.

So, in addition to shaping Gráinne’s personal environment, we set out to improve the environment for everybody in Ireland.  We did this by getting involved with Diabetes Ireland (then called the Diabetes Federation of Ireland).  You learn a lot when you get out of a “selfish” mode of working – perspective builds empathy.  Community is empowering – there is great power in numbers. When these numbers are singing in concert while they’re rowing in one direction, bureaucratic and institutional inertia can shift.

As a person I love deeply, I of course worry about Gráinne’s physical health.  Her diabetes doesn’t weigh on my mind anywhere near as much as it does on hers, but it’s there.  Hypos scare me too (and selfishly, I’m glad Gráinne found that a CGM suits her…nighttime hypos she slept through are scary on a whole other level).

But being totally honest here, the thing I worry far more than her physical health is her mental health.  If Gráinne is stressed, that stress will invariably become my stress, and our family’s stress.  If this stress were chronic, life would be pretty damn miserable for all of us.  Chronic health conditions can wear you out.  Ask anybody with Lyme disease, MS, Crohn’s, HIV, chronic migraines, or frankly any other chronic condition.  But in some ways, type 1 diabetes is different.

 Type 1 asks its patients to undertake medical decisions multiple times per day, without consulting a medical professional, using nothing more than education and wits.  If you make the wrong decision you could end up in a coma or dead.  Or, if you make less-wrong decisions but do that a lot over time, you could end up blind or limbless.  And then there’s the possibility of making the “right” decisions (i.e. one the medical professional would suggest), all of this bad stuff could happen to you anyhow.

What can I do to keep her head healthy?  I try to make sure she knows she’s supported, and I try to “nudge” her in the direction she’s looking but hesitating to head.  (As her confidence has built, there’s been much less nudging.)  Sure there are down times, frustrating times.  She sometimes needs to vent, I can do nothing but sit there and listen, and give her a hug.

But that’s not “diabetes life,” that’s “life life.”  It just so happens we have this extra topic of stress and frustration that most other married couples don’t have.  But we also have this extra source from which to build strength.

 When we said our marriage vows fifteen years ago, we already knew some of the “sickness” part.  We’ve been incredibly fortunate to be able to leverage that sickness into a source of strength and bonding.  If I could cure her diabetes, I would in an instant…but in some strange way I don’t think I could imagine life without it.

 

Phil & I don’t really talk about diabetes much, I suppose after 15+ years of being together there are somethings that you don’t have to say but sometimes we might forget. Thank you Phil and here’s to another fun-filled 15 years.

Phil, with some other woman :-) helping out at Thriveabetes 2015
Phil, with some other woman 🙂 helping out at Thriveabetes 2015

Diabetes Summit & Future Health Summit Dublin

I am extremely honoured to have been selected as a patient speaker at the upcoming Diabetes Summit which is part of the Future Health Summit on Friday 27th May. The Future Health Summit runs over two days, May 26th and 27th, in Dublin’s Citywest Convention Centre.

The Future Health Summit is actually a series of 15 separate summits covering areas such as mental health, medtech, oncology, wellbeing at work, clinical leadership, diabetes, ehealth, and homecare.

The Summit director David Neville expects 1,500 delegates to attend. There are seven patient forums, more than 100 speakers, over 120 exhibitors, and 15 separate summits being run. He also says “The conference is focused on how we care, what we eat and how we live”.

I will be participating in the Diabetes Summit, which is chaired by the Clinical lead of the National Clinical Programme for Diabetes and Consultant Endocrinologist, Dr. Ronan Canavan and co-chaired by Dr. Anna Clarke, Health Promotion and Research Manager with the Diabetes Ireland.

My fellow panel will include;

Future Health Summit Diabetes agendaDr Neil Black, Endocrinology & Diabetes Physician, and Lead Clinician, Electronic Care Record Implementation in Northern Ireland.

Prof Philip Home-Professor of Diabetes Medicine, Newcastle University. Former Chairman of the International Diabetes Federation (Europe). In 2009 he was Programme Chair for the IDF World Diabetes Congress in Montreal.

Professor Gerald Tomkin – Director of the Diabetes Institute of Ireland at Beacon & Endocrinologist, former president of the Irish Endocrine Society, the Irish Hyperlipidaemia assoc.s. Former Chairman, and now President of the Diabetes Federation of Ireland.

Dr Richard Lee Kin-Specialist Periodontist. He is founder of the Mint Clinic in Adelaide Rd., Dublin 2, dealing exclusively with the management and treatment of gum disease in adults and children .

And of course, me, Grainne Flynn-Patient Speaker.

With a panel discussion with all speakers chaired by Dr Eva Orsmond and Prof. Donal O’Shea.  No intro explanation needed for either of those. There is more information on the schedule.

 

Patient Workshops

There are also patient workshops taking place on Friday 27th May, one in particular of interest is the “Living with Diabetes- Personal Empowerment, Information, Choice and Ownership”. Speakers for this workshop include;

11.15 am  – “Living Well with Diabetes, A Personal Experience  – 10 Keys Tips”. Kate Gajewska who is a health psychologist, lives with type 1 diabetes and is a scholar in Population Health & Health Service Research – SPHeRE Programme

12.00     “Making Best Use of Your Professional Diabetes Review”  Prof. Seamus Sreenan, Consultant Endocrinologist at Connolly Hospital and Medical Director of Diabetes Ireland.

Professor Seamus Sreenan will advise individuals to better prepare for their hospital appointments and maximise the benefit of that appointment for the person with diabetes.  Professor  Sreenan is Clinical Director, 3U Partnership, Consultant Endocrinologist at Connolly Hospital and Medical Director of Diabetes Ireland.

Both presentations will be followed by a question and answer session.

 

When you book this event, your ticket gives you access to the open talks at the Summit  (tickets priced at €539). Admission to the workshop is €10 registration fee for members, or €40 to include 2016 membership of Diabetes Ireland. To register call  Diabetes Ireland on  1850 909 909.

Now I have to take care of a “Procrastination Monkey” by rounding up the “Panic Monster”. This very entertaining video will explain more:-)

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