Blood Sugar Trampoline

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.

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.

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.


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 😀

Diabetes Blog Week – The Cost of a Chronic Illness

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.

“Karen created this annual week-long blog carnival as a way for multitudes of D-bloggers (now more than 100 participating each year!) to create an unprecedented sharing of perspectives on issues relating to our illness. You can learn more about this effort, and sign up yourself if interested, here.”

The Cost of a Chronic Illness

Insulin and other diabetes medications and supplies can be costly. In the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care? (This topic was inspired by suggestions from Rick and Jen.)

I’m one of the lucky ones. I was born in Ireland. I’ve lived there most of my life. But I’m not lucky because I live in the Gorgeous Green Kingdom. I’m lucky because 50 years ago a bunch of people who live with diabetes got together at a meeting and said that their mission was to provide free insulin for everyone living in Ireland who needed it. (Yes, we pay for it through our taxes but really, it’s free.) And two months later it happened.

Then in 1971 all other diabetes medication and supplies became free. This is why I am lucky.

I’ve been following the American coverage of the cost of insulin with a broken heart and feeling of helplessness. And I know that there are countries in the developing world where a vial of insulin is a number of days of walk away from the people that need it.

I did have difficulty accessing diabetes technology in the form of an insulin pump and a cgm and diabetes education is still difficult to access here but this seems so insignificant compared to not being able to afford or get your hands on insulin.

I read the book “Breakthrough: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle” over the Christmas holidays and it detailed those first few years where Insulin production was unstable and there wasn’t enough for everyone. Neither of the manufacturing companies couldn’t make it fast enough. Access to insulin was because there wasn’t any.

My diabetes doesn’t cost me anything but my time. This is sometimes a bit of a weight on my shoulders as my clinic appointments happen when I am supposed to be collecting my children from school. But it’s also a huge relief.

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.


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.


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!


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!


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 Importance of Diabetes Language – My Own

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.

Language is so important in all aspects of life, isn’t it. Sticks and stones, and all that, really is a load of BS (and I don’t mean blood sugars). We advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes.

But last year, I realised that I have not been including myself in that advise – I, quite arrogantly, thought I was exempt. I mean, how could I, a fellow person with diabetes, offend other people with diabetes! Turns out, 23 years of living with diabetes only makes me an expert in MY diabetes.

I ventured out of my type 1 diabetes bubble last summer and met so many people who were just like me, except different – they had other types of diabetes. I listened to how they felt about their diabetes and about how people with type 1 diabetes inadvertently made them feel. I’ve always been concerned about how I was overshadowed and neglected as a adult with type 1 diabetes but realising how people with type 2 diabetes felt when all they get in mainstream media is judgement and stigma while people with type 1 diabetes gets sympathy and empathy.

How many times have I stated that type 1 diabetes isn’t caused by lifestyle? More than I can count. Since last year I have been very aware that I’m not doing anyone, least of all anyone with diabetes, any favours by using this language.

Language matters and I’m starting with my own. Since last year, I choose words that will not confirm any opinion that any diabetes is caused by being overweight or any factor of lifestyle. I explain my type 1 diabetes as what it is and not what it isn’t. I won’t say that my diabetes isn’t caused by lifestyle. I say it has no known cause.

I explain that type 2 diabetes has no known cause either. It has risk factors and I list ALL of them starting with the lesser known ones.

23 years of living with diabetes may seem like a long time but I still have a lot to learn.


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 Blog Week

Super excitedI’m sooooooooooooooooooo excited about taking part in my very first Diabetes Blog Week, the 7th annual Diabetes Blog Week, which runs from 16th to 20th May. I’ve admired Karen at Bitter Sweet Diabetes for a number of years so I’ll say it again. I’m soooooo excited! 

We are all kicking off Diabetes Blog Week by talking about why we do what we do.

I write a blog because is a form of therapy for me – even since my early teens I used writing as a way to feel better about the world and about life. The making it public came about because I have too much to say and I like to listen. I’m part of a real-life diabetes support group and I need to zip it at those meetings. I do still talk and share at them but it’s my one opportunity to hear about other people’s’ experiences and diabetes stories, and so I zip it as best I can.

So, Blood Sugar Trampoline is where I let it rip – nicely;-).

The most important diabetes awareness message I want to share is that the diabetes community needs to raise their voices if they want to improve our health service. At the moment, our health service is under resourced and inefficient. But the voice of the patient is a powerful one and a lot of us don’t realise that.

I’m passionate about fighting for the health service we, men, women and children with diabetes, deserve. It’s a big task and it’s a slow one. We have a lot of work to do in Ireland to improve our health service for people with diabetes and we only have only organisation trying to do it all. They are doing the best they can with their limited resources they have but they need us to help them. My husband told me back in 2007, that one of the ways you can make an organization better is to be part of it.

I hope that in some small way Blood Sugar Trampoline will inspire more people with diabetes to advocate for themselves and others. Many hands make light work!

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