My Diabetes Checklist

I have lived with Type 1 Diabetes for 23 years. I know how lucky I am to not have any diabetes complications…. so far. And yes, a decent HbA1c does play a role in that, but more than we want to think about it, some of it is down to luck. However, it is a lot of hard work to pull off a decent HbA1c and people are very often surprised when I tell them all the things I do to try to achieve that. Maybe I make it look easy? Or maybe they’re wishing for something easy, but the easy life died along with our pancrea.

So, how do I manage my diabetes?

Managing diabetes is not as simple as taking my insulin and forgetting about it. I don’t just think about my type 1 diabetes at mealtimes - I can’t afford to, so much can happen in between meals.

In my opinion, managing diabetes is about balancing medication and physical activity with carbohydrate intake and stress levels.  Even if I lived every single day the same this would be difficult because of the variables like stress, illness hormones, climate changes, etc.

Here is the “Magic” list of things I do to “manage” my diabetes.

• Blood Glucose monitoring:
  • at least 7 times a day. Before I take insulin which would be every time I eat. And I check about 2 hours after to be reassured that I didn’t take too much or too little insulin.
• Taking insulin:
  • I take at least 3 bolus infusions daily through my insulin pump. I may do an extra fraction of a unit in between those times if needed. My basal/background insulin is delivered continuously through my insulin pump.
• Carbohydrate counting:
  • I’m hopeless at eyeballing the amount of carbohydrate on my plate so I weigh it. I find that my measuring the amount of carbohydrate, my insulin to carb ratio is more accurate.
• Record keeping:
  • there’s a lot to keep record of. I’m a recent convert to a smartphone so I haven’t completely let go of pen and paper to keep track of everything, but I do use an app that makes me feel good about logging information and sends me a weekly email with how I’m doing.
• Physical activity:
  • I held off on exercising until I got my insulin pump and my children starting school made this easier too. My resistance was due to fear or unwillingness to deal with the initial hypos while on multiple daily injections (MDI). However,  the more I read about the longest living people with type 1 diabetes, the more I realised that exercise seemed to be one of their key elements to good control.  Plus, when my joints started to get achy that was an added incentive.
• Attend multiple medical appointments:
  • I used to see my endocrinologist 3 times a year, but this seems to be reduced to oncer every 8 months. I’m not sure how I feel about this. I also visit a podiatrist & optician annually through the National Diabetic Retina screen programme and the community podiatry service.
• Upload my insulin pump and CGM data to a computer programme:
  • I do this at least once every three months and definitely before a clinic visit.
• Prepare thoroughly for my clinic visit:
  • by having my blood work done well in advance, I collect the lab report from my GP and keep a copy for my own records. I make a note of any questions I want to ask and make sure that I have time to ask it.
• A good support system is important to me.
  • My husband is crucial in this; he needs to understand diabetes as much as I do. I’m also a member of a Type 1 Support group and I draw comfort from meeting others just like me who speak my language. I also participate in many diabetes online groups.

• Making sure I know as much as I possibly can about my diabetes;
  • I draw motivation from reputable diabetes websites that I can relate to and by reading stories like that of Bob Krause who lived in San Diego and at the age of 90 has lived with Type 1 diabetes for 85 years and is still hale and hearty. I read about Nat Strand who won The Amazing Race, Charlie Kimble race car driver.
• Making time for all things diabetes related while not letting it take over my life.

Diabetes is frustrating at times but I’m not about to give up. I’ll give it my very best because I have soo much to live for. All of this may sound like it consumes a huge amount of my time but the more you do it the less time it takes.

50 Years Living with Diabetes in Ireland

A couple of weeks ago I wrote about attending Diabetes Ireland’s Health Awareness Exhibition in Dublin and that I was most looking forward to attending the medal ceremony to people who have lived with diabetes for 50 years. Read more about the other happenings on the day here. It was SO worth the 3 hour drive with kids in tow. There were 16 of these soldiers receiving medals. Each one was called up to receive their medal and Kieran O’Leary, Diabetes Ireland CEO, gave a brief biography of them.

As I watched each of them receive their medal I was struck by the fact that by the time I receive mine, living 50 years with diabetes won’t be such a big deal, such a monumental achievement. It will be the norm.

What all of these guys went through from boiling glass syringes, from the embarrassment of testing their urine for glucose to the restrictive dietary regimen. Remember, when these guys were diagnosed they were told that they would never eat sweets again and that they could eat diabetic chocolate.

Out of the 16 medalists, only 3 (well technically 4, cos two women were sisters;-) have a family member with diabetes, either before or after.

Speaking to Kieran O’Leary afterwards, he told me that Diabetes Ireland would like to make this an annual event. They realised that this year only three endocrinologists put forward nominees for medals and that there are many more people who have lived for 50 years with diabetes and more out there.

I would also like to see a 60 year medal as my friend Stan, from Clare is already at that mark and my friend Pauline is nearly there.

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My Thanksgiving Blood Sugar Battle

I’m not American. Nor do I live there. But, I am surrounded by them; married to one and both of my children are US citizens. And so Thanksgiving features strongly in our household. This year, we had an Expat Thanksgiving and celebrated it on the Sunday after the actual day so that none of us were working. It was lovely and it was lovely to be with our american friends living in Ireland.

However, as a person with type 1 diabetes, dealing with celebration feasts are a huge challenge. This one turned into a 24 hour challenge in that the high blood glucose levels wiped me out the next day. Maybe, this is why the Americans make thanksgiving a four-day weekend?

My approach to big meals, like this one, are to have a little of what I love, a very small amount of what I don’t consider worth the insulin, just to be polite, and maybe even skip the potato, because, well, I’m Irish and we had them Every, Single, Day growing up.

My blood sugars did reasonably well, considering. But this year, about four hours after pie, when I thought I was a little in the clear, they started to climb and climb and then hover. It was 2am when my CGM alarmed for the last time and I could get to sleep. I woke the next morning as if I had been out all night.

Monday morning, I had planned to treat myself to a morning of retail therapy in the city and to finish off the last of my christmas shopping. I thought about not going because I was too tired. Then, made myself go because it would do me good and maybe I’d feel better for it.

It did not work! I persevered because I had driven all the way there but when the toy shop told me, after waiting in line for about 8 minutes, that their computers were down and could not issue a gift card, I decided that I had made a serious effort. It was time to go home.

Had this been any other day. Had I not been battling blood glucose numbers the night before, I would have been productive on a superhuman level. My daughter finished early from school and so I only had one school pick up in the afternoon. I thought to myself “Great! I’ll have at least an hour or more to do some writing this afternoon”. That didn’t work either. I could even concentrate on scrolling through my facebook feed. And that doesn’t require any concentration but I still couldn’t do it.

I gave up! I put the iPad down, the phone down and put my head down on the couch with lots of blankets and took a nap! And actually, in between the “Mom, where is the….” and the “Mom, can I….” I did actually nap.

Sometimes, you have to give diabetes a win so that you can prepare yourself to fight the battle again another day.

My Mental Health Mattered to My Diabetes

I was 20 years living with type 1 diabetes before I hit THE wall. The wall where I was done with it! Every blood glucose test was a nightmare, and no amount of insulin brought my blood glucose levels down to a respectable number. I’d had enough of diabetes and it needed to go away RIGHT NOW! You may not know what I’m talking about, if you are one of those people who just gets on with diabetes management, without feeling an overwhelming mental burden, you are lucky. But I’m asking you to continue reading, just in case you ever do hit a wall such as this. Maybe not a big or hard wall. It could actually be more of a “I just don't feel like getting out of bed today but I have to, so I will” wall. But if that day turns into a week and then maybe a month. It may affect your diabetes, even if it’s not related to your diabetes.

If this happens to you, you have to figure out a way to get around it, over it or through it and that needing help is not a failure in your capacity to manage your diabetes.

Four years ago, the only thing that kept me holding on and got me out of bed each morning were my children, my amazing husband and being an active member of the Irish Diabetes online community.

They didn’t even know that they were holding onto my hand so tightly so that I didn’t fall off the cliff and plummet to my death. But they were! Well maybe my husband did but no one else knew.

My story is long and I've written it countless times before but now seems like the right time to publish.

Four years ago, at 19 weeks pregnant with our much longed for third baby, I was told, very compassionately, by the doctor, who performed a foetal anomaly scan, that my baby’s brain had not fully formed and that the condition was “not compatible with life” and that my baby’s heart was not beating any more, and it broke me. I didn't know it then, but it was going to be a long time before I would be fixed again.

I could give you all a day by day account of what happened between that day, the 19th May and the early morning hours of the 25th May when our baby boy came into to world sleeping. But I won’t. I will just tell you about the nurses who took care of me, who cried with me and helped me get through those first few days. My husband who held my hand and helped me breath through the labour pains. And my endocrinologist who told me that under no circumstances was I to blame myself or my diabetes, that I was to forget about my diabetes for three months and then she would help me get back from where I was lost.

My Wall was grief. I made it through the physical healing stage, where simple, everyday tasks, such as driving the children to school or just being alive and breathing, were extremely difficult to accomplish. I don't know how many times I nearly drove into the car in front of me. This lasted about two months, then functioning became easier but a fog of sadness descended and it would not lift.

Not only was I struggling with my grief but I was struggling with losing the dream of adding to our family. I was now 40, pregnancy was not going to be easier, I was older, with type 1 diabetes. How high risk was too high of a risk? This was the first time ever that diabetes was influencing my decisions. My brain was a spaghetti junction of thoughts going backwards and forwards of “to hell with it” and “no, it not worth the risk”.

In the following months, it became easy to smile on the outside but inside my heart was broken and I was just sad. Extremely sad. All of the time. I had panic attacks, but I didn't know what they were at the time. I couldn't sleep. However, I did all of the things that were habit in looking after my diabetes - I never once stopped taking care of it. But my diabetes was not behaving and was having a full blown tantrum, like it was the child I lost. In hindsight, I feel that it was telling me that it wouldn’t behave until I took care of what needed to be taken care of; my head and my heart.

I knew that I needed to talk to a professional. I knew that my diabetes was very much out of control and that I couldn’t risk allowing it to continue that way. But it was 16 months after we lost MJ, that I found someone to call, recommended by a very good friend.

I remember calling her and making the appointment vividly. Because she said that I had overcome the biggest challenge; making the call. That the next steps wouldn't be so difficult. She was right. I felt that I had taken my first step back to finding my “happy” again. I felt like a little patch of fog had cleared to let one ray of light in. And, I kid you not, after months and months of crazy blood glucose bouncing around, they fell into a decent pattern again from that day.

Living with type 1 diabetes requires a lot of mental energy and if your brain is dealing with a trauma, stress, anxiety, grief and sadness, doesn’t it stand to reason that you’ve got nothing left for diabetes? And...your diabetes doesn't like to feel neglected and ignored.

If your head in not in a good place, you may not be able to put your diabetes in a good place. Diabetes is challenging enough at the best of times. Your mental health matters! And it matters to your diabetes!

So, there may be a day, a week, a month and maybe more where you may feel this. And these are the things it might help to know;

1. Mental health isn’t always about being diagnosed with a condition, disorder or illness. It is about your emotional well being. Every single one of us will experience tough times in our lives and sometimes we will not know how to make it through those tough times.
2. If the feelings of “the blues” continue for weeks then it's a thing that must be dealt with.
3. Taking care of your diabetes is about taking care of your mind and well as your blood sugars.
4. Know that talking to someone will help. “A problem shared is a problem halved”
5. Know that, sometimes,  your nearest and dearest; your parents, your family, your friends, even your husband may not be the best people to talk to. You won’t be completely honest with them about how you're feeling because you don’t want them to worry about you more than they already are. They want to protect you and you want to protect them.
6. You may have to pay someone to listen to you. But guess what? They don’t judge! They don’t say “snap out of it” or ask “how can I help” when you don't know the answer. They actually have a degree of some sort in how to get you to figure out how to help yourself!!! Yeah!
7. That the stigma attached to seeing a mental health professional is nothing compare to the hopelessness, the exhaustion of diabetes, the depths of despair or sadness that you feel now.

Ask for help! It is there. And here are some good places to start; Jigsaw  Your Mental Health Spunout.ie And lots more.

Diary of a CGM Sensor

At the end of November, I will have been wearing my Continuous Glucose Monitoring System (CGM) for one year. And I really don't know how I lived with type 1 diabetes without it? I know that I am unusual in that I get 21 to 30 days out of each sensor I wear. Or maybe my immune system is just completely useless altogether? So, I thought I would take a photo diary of the life of one of my CGM sensors and take you through what it looks like.

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Hypo Feelings and Heroes

Hypos, or low blood sugars happen! They do. And they happen no matter how much time and effort I put into trying to avoid them. But have you ever asked yourself “How do my hypos affect everyday life and how do I feel about that?”

“More than 9 out of 10 people alter their insulin doses out of fear of hypos”

“50% of people worry about hypos often or all of the time”

Before last weekend, I had never asked myself either of those questions. And then, I attended Medtronic Europe’s first Diabetes Community Exchange conference in Barcelona, Spain, where one item on the agenda featured research on this very topic.

To be honest, I was completely sceptical about this hypo awareness programme because I felt it was a bit like preaching to the choir. I mean, dealing with hypos is one of the first things that people with type 1 diabetes are warned taught about when we are first diagnosed. And so, I thought “Of all the things to spend money on?”.

BUT!!! When I saw the research surrounding how hypos make us feel, it prompted me to explore my own feelings around hypos. I realised I had never asked myself either one of those questions before. And I'm quite surprised at what I discovered. I hate them! And I hate the way they make me feel.

Not the symptoms of a hypo but the emotions I feel as they happen or afterwards, the;

- Frustration at having to stop what I'm doing or break concentration to treat them. - Fear and anxiety I feel at the prospect of them even though, I find them easier to fix than high blood sugars. - Resentment when they interrupt a family day out. - Resentment that I had to tell my then 8 year old son, rather sternly, to please stop asking me questions. I'm low and need sugar. In effect I had to tell him to go away. - Hate that I felt I had to teach my children as toddlers how to call the emergency services just in case mom doesn't wake up. - Anxiety when we decide to go for a family walk in the park or woods and how hypos always, still seemed to catch me out. - Hate that it makes family and close friends feel uncomfortable. (I once had a hypo in my endocrinologist’s office and even she panicked. Think about it - how often has she seen a hypo in real life.) - Hate at how some friends react in an unhelpful way and can be hurtful. I tend to still deal with my hypos discreetly in these situations. - I used to think hypos didn't affect anyone but me but that's a big fat lie and I hate that.

Now that I knowing how I feel about hypo I think it makes me a stronger person to deal with them. I can prevent these negative feelings from festering and becoming a monster. And it does feel good to blow off some steam.

The #HypoHeroes campaign and dedicated website is full of useful information but it doesn't just focus on the physical aspects of hypos; it incorporates the emotions around experiencing hypos, especially in the “Behind the Mask” zone. It has some real life videos of people talking about what happens when they or their child with type 1 diabetes has a hypo. It also offers helpful information to minimise the impact on your life. This website is very well researched, very well thought out and it is supported by IDF Europe. #HypoHeroes gets its official launch on World Diabetes Day, November 14th. Well done Medtronic!

It's also worth mentioning that if you nominate a hypohero a donation will be made to IDF Europe from Medtronic, who will use it to support people with diabetes all over europe.

Medtronic Europe’s Diabetes Community Exchange conference included diabetes bloggers from all walks of life representing Austria, Belgium, France, Germany, Ireland (that’s me), Netherlands, Russia, Sweden, Switzerland, England and Wales. All amazing bloggers, diabetes community leaders and advocates. And one actual D-friend I knew beforehand; I got to hang out with our recent Thriveabetes speaker, Gavin Griffiths, properly. He got to meet the not-so-stressed-completely-exhausted me:-D

Medtronic get a very large, bright gold star for a very well organised event, for being so considerate in getting all of us there and for taking care of us so well. For me, there was a good balance of time to decompress privately and social time to get to know the other bloggers. They even included a workshop specifically for us to think about how we cope with our own diabetes. As bloggers, we tend to focus on what other people need for their diabetes rather than what we need to take care of us and our own diabetes. This workshop was provided by Rosie Walker from Successful Diabetes.

As to be expected, when a company sponsors an event, there is a product pitch, but they did leave it til last and it wasn't compulsory to attend. It was the new stand alone, connected Guardian Connect which I will feature in a separate post.

DISCLAIMER; Medtronic paid for all of my travel expenses from Ireland to attend but did not influence my opinions. My invitation came through IDF Europe and I am very grateful and proud to have been their nominee.