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.
#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 😀

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.”
#DBlogWeek!

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.

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.

The Hard Diabetes Changes

I’ve been using an insulin pump for almost seven years and it’s unlikely that I will go back to injection pens. However, I know that things change over time and how I feel about things also change, so I will never say that I will never go back to injection pens because the future is unpredictable.

This week, I have been thinking a lot about all the times I’ve changed the way I manage my diabetes and how difficult some of those changes were. 

I remember when I was transitioning from pens to my pump and that period where I was “practicing” with it. I swear I just wanted to throw it against a wall it was so annoying. But I was also doing twice the work; I was injecting the real insulin with my pens and calculating pretend insulin doses with saline in the pump. It took twice the time for no extra gain. I did that for three days.

I sat in my kitchen one of those three days and thought to myself what if, after all I went through to get this pump, I actually hate it? What if it drives me batty? Why am I changing everything? And the horrifying thought of what if it doesn’t help me?

Then I reminded myself that very few people around the world give their pumps back – they continue to use them and are happy with it. I had seen this research on the internet. I also reminded myself that if I didn’t like it that I could go back to pens. I reminded myself that change is always hard.

I remember when, after living with type 1 diabetes for 6 years, I changed from two injections per day to four! I remember thinking “how is this better?” when it was suggested. I didn’t want to do it but my research told me it was a better way and it was worth trying.But it was better.

I remember when my first blood glucose meter became obsolete. I think I used it for 5 years!!! I know, it was crazy! It was a pain to try a new one. Not to mention changing to new test strips. But it was a good change.

I remember when I went from checking my blood glucose twice per day to four and then to seven. That was a pain but, again, worth it. I learned so much about managing my insulin doses to match the needs of my body from all of those tests. Now, it’s simply out of habit that I still maintain those 7 tests.

I remember when I tackled proper carb counting and not just guessing – that was a lot of extra work for a couple of weeks. Again worth it.

I was not happy with the results I was getting in my life with diabetes and even though change is always going to be difficult at first, it’s worth remembering that some changes are worth it. Some were not worth the effort and I didn’t continue with them. But doing nothing was not an option. If I didn’t try I would never know if it was better.

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!

Blood Glucose Diary Faker

Renza from Diabetogenic wrote this piece on “fudging” our bg numbers in our blood glucose diaries and it fuelled my fire. It’s such a coincidence that we both attended conferences where the “Fake” blood glucose diary of a person with diabetes was held as an example of a “bad” patient! Renza’s piece is well worth a read on how she handled the situation and spoke up for all of us. She rocks!!

My experience was more of the sitting quietly at the back in disbelief that this was how this conference was beginning. The conference I attended focused on changing the way care is delivered to young adults with diabetes.

I was diagnosed as a young adult – age 20. The instant I saw that photo and heard those words I had vivid flashbacks. I remember doing that! I even remember why! I remember that every out of range blood glucose number in my diary was questioned, I felt interrogated and I never knew the answer. Back then, there was no carb counting and no one told me that if I ate more food but still took the same amount of insulin that my blood glucose levels would be higher. It wasn’t bad behaviour or poor choices – it was ignorance. I remembered being lost, feeling so isolated and not knowing anything about diabetes, let alone how to manage it. I remember that I never felt I could ask for help with my diabetes from my health care team.

I did it because I didn’t want to be judged or reprimanded for something I thought had no control over. I was letting my diabetes team down.

This conference, supposedly, about health care professionals finding a better way to deliver care but this made me feel like the reason young people with diabetes were not doing well was their own fault.

What should have been said, and said clearly, was that if a person with diabetes feels they have to hide their blood glucose numbers from their diabetes team the patient is the one being failed. That the diabetes team are to ones letting the patient down. That your reaction to people’s blood glucose diarys need some work. That the fact that a patient has actually written down their blood glucose numbers at all is an achievement to be celebrated. That you, despite your best intentions, are being judgemental.

Thankfully, these days, I am much older and wiser and more assertive these days. And of course, there’s the fact that I don’t care very much what other people think of me. I do ask for help – it’s not always available but I keep asking. I also have a team that seem to be a bit more open to conversation about what I need. But I am a little perturbed that 20+ years later, young people with diabetes STILL feel that they have to cheat to pass their diabetes test?

Oh and BTW, I ALWAYS use the same pen to write down my BG numbers cos I keep the same pen in the case with my bg meter!! So this is not an effective way to flush out or prove a diary is being faked.

Pen stored inside Blood Glucose meter case. Photo credit Blood Sugar Trampoline
Pen stored inside Blood Glucose meter case. Photo credit Blood Sugar Trampoline

How many people actually use a written diary these days not anyway? Aren’t we all uploading to software programmes or using Apps?

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.

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)

Treasures from the Diabetes Online Community

Every now and again the DOC sends you something wonderful in real life, or in this case someone wonderful, who you would never have met otherwise. And I feel lucky that I’ve had a couple of those opportunities already this year.

On Saturday last, I met one such person; Gina Gaudefroy. I don’t know how Gina found me last year but she did and sent me an email. We exchanged some of our stories in a couple more emails. Gina shared that she is originally from Limerick but now lives in California. She is very involved in her diabetes community and in participating in many clinical trials. Her diabetes clinic is one of the few participating in the Bigfoot Biomedical Open APS trial and the ViaCyte transplant trials.

Last week, she messaged me saying she was going to be in Ireland, staying in Co. Offaly and could we meet? Hold up! My first question was what the hell are you doing in Offaly, very close to where I grew up? My Irish nosiness kicked in. It turns out that Gina’s father comes from there.

I waited until she arrived to quiz her more about her ancestors, in true Irish tradition. And gave her some of my family history to return with so that she could determine if anyone in any of our families knew each other. And yes! Not only do we have diabetes in common but her father’s people know my people!

Our paths may never have crossed or a connection made if it had not been for social media in particular the DOC. Our diabetes prompted us to connect personally but now we have lots more reasons to stay in touch. 😀

Gina & Me
Gina & Me
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