Thriveabetes; What is it? Why do I need it?

My children have been back to school for almost two full weeks now and since their first day back I've been spending a couple of hours most days planning Thriveabetes 2018. A month ago, at our fundraiser, I was asked to explain what Thriveabetes is, why people with diabetes need it and why I was asking people to give money to it.

After my nerve wrecking speech, several people commented on how they had no idea that living with diabetes was so involved and required so much work. Why I keep forgetting this when I talk about my diabetes I'll never know!

This post is to explain to people who don't have diabetes, what living with type 1 diabetes is actually like, to explain what our conference does for people with diabetes, why I'm passionate about it and why I need it.

Here's what I said;

What is Thriveabetes? And why do people with diabetes need it?

To answer these questions I have to, first, take you on a little journey. My journey.

I was diagnosed with type 1 diabetes 24 years ago as a young adult and It changed my entire life. I'd like to be able to say that living with type 1 becomes easier but it doesn't - it becomes habit.

I woke up this morning, a little groggy because my glucose alarm went off during the night telling that my levels were a little high. So I got up, checked them on my meter, worked out a correction dose of insulin, took it and went back to sleep.

Before breakfast, I checked my levels again; they were in target, so I took my insulin for my regular weekend breakfast of tea and toast also known as 40g of carbs and then ate it.

Two hours later with kids and car packed to travel across Ireland, I checked my levels again to see how close I came to getting it right. The answer was; not in target range, but close enough.

As I visited with my mother and family, I wondered what lunch was going to involve and when it was likely happen. It ended up being a sandwich at a Spar. I checked my glucose levels again. They were a little above my target, so I had to work out a correction dose of insulin plus working out an educated guess of how many grams of carbs were in this particular sandwich. Then I eat. My day, as with all other days, continued like this.

I do all of this out of habit. The numbers are very seldom perfect. But I get on with "close enough".

Now imagine, that the person with diabetes isn't you, but your child. So on top of all of those daily diabetes tasks that I do, you now have the added worry of “if I don't do this “close enough” my child is going to get sick. Again!”.

This kind of anxiety and stress goes on 24 hours a day, 7 days a week, etc. Diabetes NEVER takes time off. Ever.

This is why Thriveabetes is needed!

Thriveabetes is a place where you can relieve some of that stress and anxiety. The power and comfort of being in a room with so many people with diabetes, learning so much about managing daily life with it and knowing that every single person in that room knows diabetes like I do, lightens that load. There is no other place where we can get that.

It's a day that is organised completely by us; people with type 1 diabetes. We are all volunteers who are dedicated to and passionate about bring people with type 1 diabetes together to share what we deal with every day and to learn from world class speakers.

And that is Thriveabetes. And that is why I need it!

Parenting and Adult-ing with type 1 diabetes

When my children were younger, I was asked a couple of times about how I balance life as a mum and life as a person with type 1 diabetes. It was definitely a challenge to juggle parenting with anything but that's not news to any parent. Now that my children are older (13 & 11) I can look back on what were the tough parts and what were the “advantages” of being a mum with type 1 diabetes.

I still can't believe that my dysfunctional and broken body created two healthy and outstanding humans. I never forget how lucky I am and always remember that not every one who decides they want to be a parent gets what they want and sometimes it doesn't happen the way you thought it would.

Being a mum is a challenge and it's wonderful! I love it!!! I can say that now because I don't lose as much sleep these days as I did when they were younger. ;-) In fact, there has been an occasion or two where I'm asleep before they are.

Being a person with type 1 diabetes is a challenge too! Actually at times, it's a nightmare, completely exhausting but mostly it's a giant pain in the backside.

So what's it like to combine the challenges of being a mother AND having type 1 diabetes?

Well it's doable. And hopefully, you have adjusted to life with diabetes before motherhood is thrown in there or vice versa.

I had type 1 diabetes before I became a mother. So while diabetes didn't effect my decision to become one, it did make me hesitate and come up with a plan for how it would happen and how I/we would try to manage my pregnancy. Once, myself and my husband decided that we were in a good place to start a family, we didn’t jump straight into trying. Instead, I made an appointment with my endocrinologist to talk about how we would get my body ready for it and how my dysfunctional body was going to grow a healthy human successfully.

I've written a couple of posts over the years about what pregnancy was like with type 1 so I won't bore you again. You can find one here, one here and another here.

How does type 1 diabetes affect motherhood?

There may be an element of “the grass is greener on the other side” here. So, I could be wrong about this but I feel that mums with type 1 diabetes don't think quite the same as mums who don't. Mums who don't have diabetes seem to forget that they need to take care of themselves, as well as their baby. They seem to neglect their well being without life threatening consequences.

As a mother with type 1 diabetes, the first time I had a hypo while my baby was simultaneously screaming crying, it made me realise that diabetes has to stay high up on my list of priorities. It was well up there when I was growing this tiny human, but then I was so exhausted from it and new baby life I thought I could let it slip down the list a bit. But no, that was not to be.

Type 1 diabetes and being a mum is an all hands, whatever hands are available, condition. It means realising that when my diabetes needs attention it needs to get my attention first.

It means that family fun days out may get interrupted by low blood sugars despite elaborate planning. It means that dinner might get delayed because of low blood glucose levels.

It means that I can't answer 300 toddler questions right now because I have to treat a low. It means considering if you want or should teach your child to use a phone and dial 999. In my house, it meant that my preschoolers taught their class mates about carbohydrate while the teachers taught healthy eating. That was kind of a Mum-Pride moment though!

It means that at dinner time, we wait for everyone to sit at the table before we eat but we don’t wait for mum because she has to check her glucose levels and work out her insulin.

It means that there is always, ALWAYS, a concern that I won't get to see my children grow up. It means that I will alway feel I owe it to my children to look after my diabetes as best as I can so that it never takes any more of me from you. It means that I worry that you will be burdened with looking after me and my diabetes when if I am unable to do it as I get older.

However, I feel that being a mother with type 1 diabetes means that I have taught my children about the value of health, that being good to yourself means eating nutritious food and being active. Being a mum with T1D means that I know a little more about nutrition than the average person. In my warped sense of thinking I feel that my diabetes has made me a better parents and my children healthier.

Blood Glucose Darkness

I've been using a continuous glucose monitor (CGM) since November 2015 and it has made a huge difference in my diabetes management. It has narrowed the glucose swings so much and it has been a huge relief in my anxiety relating to trying to avoid hypos. And I have worn it 24/7 since I got it. Last Friday, I had an MRI on my stupid 83 year old hip (another story) and I had to take my sensor off. So I decided to go the whole weekend cgm-free. I thought it would be nice to have a break from the alarms and just see how I got on.

I felt completely blind! I had no idea what my glucose levels were between finger prick checking and it was a huge loss of information. I felt I was making decisions with my insulin without all of the information.

That evening, I went to bed with a respectable glucose 8.8 mmols/L to be woken at 3am by perspiration steaming off my body of a glucose level of 2.8 mmol/L. I tried not to consume the entire kitchen and lay across the couch willing cold air to descend on me and cool me down.

Twenty minutes later, with glucose levels at 4.8 mmols/L and probably shooting for the sky in a rebound high, I had recovered enough to go back to bed. I woke with a glucose level of 11.5 mmols/L which was lower than I expected but still too high. At least, I was spared the high alarm during the rest of the night.

I can't believe that I used to think that I was doing fine on the information provided by 7 finger prick glucose checks per day! Using a cgm has taught me so much about how to manage my diabetes, it has taught me about creating more effective insulin doses and it has given me more power over my life with type 1 diabetes.

This piece of technology is really valuable for people with type 1 diabetes. However, I do realise that it isn't something that everybody would want or can get. I believe that availability will change in the near future though as more and more health care professionals realise its value in providing information beyond HbA1c’s also.

Even The Best Laid Plans Go Awry - Insulin Pump Site Failure

I wrote a post a couple of months back about traveling through multiple airports and how I fared with my insulin pump and my cgm (continuous glucose monitor) at each one. You can read it here. It was a good practice run for our trip to the US in July. I had everything ready.

But, as the whole world knows, the best laid plans can sometimes go awry. Type 1 diabetes it is no different.

The night before our flight to America I did a set change on my pump. This means I change to a new cannula site and fill up a new insulin reservoir. I know I really shouldn't do set changes at night because of the risk of pump site failure but my mornings are usually rushed and it makes more sense for me to do it at night.

Plus I have the added security of wearing a CGM. I was definitely glad for it on this occasion.  My cgm (continuous glucose monitor) alerted me to high glucose levels so I did not wake up in DKA (Diabetic ketoacidosis) and miss my flight.

When The first alarm went off, I figured it was travel related stress. And it's not unusual for my glucose levels from dinner to linger into the night. The second time, I thought that's odd, my glucose levels have gone up. I did a second correction bolus of insulin. But when it went off a third time at 5am and my glucose levels weren't going down at all, I wasn't taking any more chances. I inserted a new pump site and did a new correction bolus of insulin and, thankfully, an hour later when it was time to get up and get out to the airport my glucose levels were coming down.

I dread to think how I would have felt if I hadn't been using my cgm. I had a pump site failure once before from a bent cannula before I my days of using a cgm. I woke with a glucose of 25!!! And I felt so sick for most of the day, even though I had figured out the problem by lunch and started using my emergency Novo pens. I can't bear to think how I would have dealt with that if it happened the morning of our flight. In Short, I don't think I would have been on my flight that day!

Thankfully, I've only had two insulin pump site failures in the seven years that I have been pumping. The most recent one could have put a real damper on my holidays if it wasn't for the cgm (continuous glucose monitor). The "what if" makes me shudder.

My Insulin Pump Dress Challenge

I don't do dresses very often, much to my husband's disappointment. I just prefer having pockets to shove stuff into and I hate when my legs are cold. But there are occasions where a dress is called for or, in the case of last Saturday night, I'm sick of looking at them in my wardrobe and never wearing them.

When you have type 1 diabetes and wear an insulin pump where to put it in your dress does present a challenge, for me anyway. I know lots of women have figured it out for themselves but I am still searching for the solution that works for me.

Over the last seven years of wearing an insulin pump, I've tried a couple of different ways to wear it but none have worked really well especially when sheer tights (also known as pantyhose) are involved.

The first thing I tried was one of those thigh support bands. My mother found it in her “magic” rubbish box (don't ask. But I suspect every Irish house has one). It was really old and it worked reasonably well. I folded it over and slipped the pump in the fold. It did slip down when I wore tights but very slowly. Then the older it got the more the elastic in it turned to dust.

This summer, I bought a new one but even though it was the largest one I could find it was so tight it cut into my leg and was extremely uncomfortable.

I knew I was going to wear a dress again last weekend so I came across really wide elastic and Jimmy-rigged a thigh band out of it. However, I only tried it out tight-less and was too jet lagged to give it any more effort.

So on the night, when I was all dressed up and heading down the hotels stairs my jimmy-riggery slid down my leg like it was a child on a slide! So, I tried to relocated the pump into my bra and without giving you way too much information there just wasn't any room in there, it was uncomfortable and it made a lump. But I was going to live with it.

Until my husband said there's a Tesco near here, let's just pop in and see if we can find something that might work. I was thinking that one of those arm bands that joggers wear to store their phones might work and it did. It was comfortable but I still felt it was unsightly.

I'm still on the hunt because I'd prefer a thigh solution and I would love some suggestions with photos and links if possible.

Begin!

Weight and W-Exercise Woes

I'm sorry, I couldn't resist the alliteration. Over that last number of years, I’ve put on weight!!! I’m not overweight… Yet! I don’t feel overweight but my clothes are tight and I feel frumpy.

I’m frustrated because I’m eating less and less, still fairly active but I’m still gaining weight. I’ve cut down of a lot of my carbs. I’m not willing to go carb free. I exercise a bit – I know I could do more but there are things that I have to do during my day and there are things on the “could-do-unicorn-list”.

The weight loss principle might sound easy, and simple; eat less and move more.  But in reality it’s not. And for people with diabetes who use insulin, even more so.

“How We Burn Fat HOWSTUFFWORKS.COM

When we eat, the glucose and sugar harnessed from carbohydrates are the first fuel sources. The liver stores the glucose in the form of glycogen and releases it into the bloodstream as necessary to keep our body trucking along. Think of your bloodstream as an interconnected conveyor belt that takes necessary nutrients to the body parts that need them. Once that glucose runs out, fat takes over. Harnessing energy by burning fat is referred to as ketosis.”

When a person exercises they burn up the glucose in their blood first, which usually keeps you going for about 20 minutes. In a person who does not have type 1 diabetes, when that glucose is used up, the body looks for glucose else where and the liver starts to release its stores. In a person with type 1 diabetes the body goes into a hypoglycaemia (low blood glucose).

It is extremely difficult to get your body to burn fat, when your body goes into the shutdown mode of hypoglycaemia (low blood glucose).

I'm also frustrated because what I've read recently about losing weight when you have type 1 diabetes seem like the are written in a foreign language.

I feel weight management is a common problem for people who use insulin. And actually it's been proven as the biggest reason people with type 1 diabetes don’t exercise; finding the balance between insulin, glucose and all the other influences on our glucose levels.

So what's my plan of action. Well, for now, my plan is to keep up with the research and try to find more ways to move while getting all the other stuff done.

I might come up with a better plan but this is all I have left to give for now.