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 :-D

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.

Type 1 Diabetes and Pregnant

I'm going to be an auntie again, after a 7 year gap in the birth of nephews and nieces. It’s going to happen any minute now. An-ny minute!!! And like any good big sister I've been sharing valued advice about the last days of pregnancy. I'm sure it's very welcome advice too:-D OMG, I can't wait to kidnap babysit this small baby.

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

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

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

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

What I remember most from both of my pregnancies;

• I felt like I was eating ALL. OF. THE. TIME.

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

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

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

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

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

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

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

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

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.