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.

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.

Short Sleeves and Stares

It's summer in Ireland. But summer in Ireland means wearing a rain jacket a lot of the time or a cardi. However, the weather has warmed up enough recently and has been a bit drier to go out in short sleeves. This feels a little uncomfortable for me. Why? I wear a gadget thingy on the side of my upper arm. It looks odd and in short sleeves it’s hard to miss. Especially, when I've been wearing it for a couple of weeks when I've had to put extra tape on it to keep it stuck on and it looks a bit “ick”.

It's a continuous glucose monitor and it measures my blood glucose levels every five minutes and transmits this information to a receiver screen. This device also alarms when my glucose levels are too high or too low, giving valuable information that helps me improve my diabetes management.

When I first started wearing my CGM two years ago, I was very self conscious of it and would actually wear a cardigan to collect the kids from school just to avoid talking about it. Everybody I met commented on it.

These days, I’m less aware and forget it’s there most of the time. Until I’m walking around the grocery and I suddenly sense that someone is looking at me. Then I do become slightly more conscious of it. But it’s difficult not too because I can feel the looks.

I got into a taxi last year and the driver asked me if it was a bomb? So I’m always wondering if that’s what other people are thinking, especially going through airport security. Most people don’t say anything though. The strangers don't approach me they just look.

I can live with the looks now and I’ve worn short sleeves more that I did last year. I've gotten over how self conscious I was of it at the beginning. Because it's fricking awesome in what it does for me and my type 1 diabetes.

And maybe some day it will be the reason that another person with diabetes comes up to me and says “Hi”.

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Social Media & Information Blindness

I'm beginning to feel like I am becoming blind to information if it's not being blasted at me on social media. If it's not a flashy click bait image. And I think it's making my brain die slowly.

Last week, my husband told me, (and I heard him tell me!!!, not the nod and yes response), that our broccoli in the garden was ready for picking and we shouldn't buy any for a number of weeks. Shortly after being told this, like an hour, I was doing the shopping and saw that broccoli was half price. What a bargain, I thought and bought it. What happened to my brain? Where did that piece of information go??

Is it that I'm so used to having instant information and that information is so easy to retrieve at any time on any device that my brain has forgotten how to retain information?

Ireland in the 80's it was so easy to inform people and be informed. We only had two tv channels (rural Ireland that is - No Sky channel for us), two national radio stations and maybe one weekly local newspaper, we did have a couple of daily national broadsheets too. this meant was it was extremely difficult to be unaware of anything newsworthy and if you needed to get a public information message to the people the telly and radio were both sure things.

These days though it’s extremely difficult to reach out to people with information. Unless, of course, you spend a large fortune in advertising and then there are still people who are unreachable.

When something changes in the diabetes health service how do we let people know?

In the last few years there have been at least three major changes that affect people with diabetes in Ireland. This is just off the top of my head.

1. In 2014, the HSE rule which prevented people with diabetes from holding both a medical card and a Long Term Illness book was changed to allow it. This meant that thousands of people with diabetes had to be informed that they now needed to apply for the LTI and should not be paying a prescription charge for the diabetes supplies and medications. I’m still coming across people in the diabetes online community who haven’t been informed of this!!!
2. In April 2016, Restrictions were placed on blood glucose meter test strips for people who do NOT use insulin. See here.
3. Most recently, April 2017, the change in the sugar content of Lucozade in both UK and Ireland. Every diabetes organisation and group carried this news and it even made it into mainstream media in both countries. There were posters in diabetes clinics (however, we are all looking down at our phones) all over the country. And there are still people who have not received this information, even though they are actively engaging in social media for their diabetes information. There are also people living in this world who even if you put the information right under their noses they still won't see it. And given my broccoli evidence above this could be me!?! Aaaahhh!

This makes me hugely worried for the all of those people with diabetes who do not engage online for diabetes information. We tend to forget that a very large portion of the diabetes community is not engaged online at all. We can't rely on the diabetes medical teams to reach every single person who attends their clinics with new information - it's just not feasible or even possible. Someone will always slip through.

I think this is why offline diabetes peer support can play a huge role. We can help make sure noone falls through!

Time to Travel with Diabetes

It’s summertime and the living is easy, fish are jumping and people are travelling, Including me! I specifically want to share my most recent travel experience by air. My stress levels ramp up a couple of notches at the thoughts of traveling through airports. Airports equal airport security and as a person with diabetes I have a lot of organising to do to make this go as smoothly as possible.

I’ve travelled quite a bit but there is always something unexpected about it and I’ve just realised that I don’t travel very often by myself. I mostly travel with my well-travelled husband and two children and that is a very different experience - divide and conquer and all that.

Last weekend, I travelled to Amsterdam to attend the DxAmsterdam bloggers event sponsored by Abbott (more on that next week - it was great though and I learned lots). I had a couple of short flights, I travelled very light and no checked bags.

I thought I had covered everything; toiletries and cosmetics were in a clear plastic bag, medicines in another clear plastic bag, laptop easy to remove, no liquids… Or so I thought. Big, big sigh!

The first short flight was easier than expected, and boy did I savour this experience. In my home airport, I declared my medical devices and walked through the metal detector. IT DIDN’T BEEP!!!! So I could keep on walking. I didn’t have to volunteer for the pat down. I didn’t have to explain that I couldn’t go through any body scanner or why some pumps can and some don’t. I got to feel like a normal traveling person!!!

I did however make up for that seamless experience in my connecting airport where I had to do security all over again because I had to change terminals. I had to do the explaining, the intimate pat down, I had forgotten to take my camera and my glucagon out of both of my bags, so they had to be searched. I had a yogurt for my breakfast which was considered fluids and over the 100ml size, so that was confiscated but at least I had other food. So, so much to think about with diabetes and airport security.

The return trip was a bit smoother but still stressful. This time the trip to the airport was with friends; all who had diabetes:-) There were about seven of us going through security together. We all got held up for a variety of different reasons but not significantly.

I approached the body scanner and told the security agent I didn’t want to go through it. She was so nice and said that it was my choice and she didn’t mind which choice I made, at all.  They did not have traditional metal detectors, so I was given the pat down search but I wasn’t taken away to a private area and it wasn’t overly intimate. I knew my bags would get flagged because they were packed very tight and the x ray machines have trouble seeing through overlaid items. But the agent had a quick look though and everything was fine. Onwards! All seven of us met up after security and it seemed we all had similar experiences and we all have similar anxiety and stress levels about it.

The next airport I did solo. Again, I had to go through airport security on my connection as I was changing terminals. This time I was ready for them. I removed a couple of additional items from my bag into a separate tray to make it easier to see through on the x ray. It did the trick. My bags went through and didn’t need to be search. This airport had both a body scanner and a metal detector so when I was directed towards the body scanner I said that I couldn’t go through it because of my CGM. I could go through the metal detector though.

This airports procedure is to call in the manager when someone opts out of the body scanner and I had to wait until he became availible. I had a very long layover so at least I didn’t have that stress.

When the manager arrived, I explained again why I was opting out and he asked if I would agree to a search. Sure! Then, he had to find two female agents to perform the pat down and swab of my pump and CGM. At this point, my bags had been abandoned at the end of the x ray machine so another agent was trying to reunite them with their owner. I could see them and him and identified myself, and the manager asked if the agent would gather them up and keep them behind the desk until we were done. I have to say even though this airport gave me the full works both times I went through the agents could not have been nicer about it. They were all so lovely!

The pat down was uneventful and I thanked everyone for being so nice and not making the experience any worse than it already was. I was almost home and I let the stress go.

My next flight is in July when I’m flying to the US with my family. Here are a couple of things that I will be doing for that trip;

Insulin Storage - when I travel to the US and I’m going for a couple of weeks I bring a flask. Yes, a thermos. And use reusable ice cubes. It works and it works brilliant! The ice cube are still a little bit frozen 24 hours later, which is usually when I get to my final destination.

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I get a new Doctor's Letter every couple of years. You never know when you are going to need this or if ever. I never needed the doctor's letter until I started travelling with an insulin pump but I always had it. It pays to have it. I always make sure that my letter clearly states what devices should NOT go through what. I have been questioned a couple of times and on this occasion I was clear that I knew that the manufacturer states that my insulin pump cannot go through x-ray and that my CGM cannot go through any body imaging scanners because of the transmitter and that this instruction comes from the manufacturer.

I always bring some extra supplies. One plus half times of supplies. Some sites recommend that you bring double of what you need but this takes up so much space. I definitely bring twice as much insulin because I once had it spoil in the heat. But the rest I just bring maybe a couple of days extra supplies.

Airport Security - Try not to stress too much about this. Know your rights, stay calm and polite (this can be a huge challenge), if you run into one of those people who makes you not want to be polite ask for that person’s manager.

This information isn’t really useful to anyone but I just thought it was considerate and worth mentioning; We usually fly with United Airlines AND they have Nutritional information on their meals!!!!

On my last trip to the US I came across Sharps boxes in the bathroom of Newark Airport!!! How cool is that?

There is loads of information on really good diabetes websites and here are a couple I found really useful;

Diabetes UK Travel Tips Good Blood Glucose Management on Long Trips from Insulin Nation Medtronic Travel Information Animas Travel information  Diabetes Ireland Travel Tips

https://www.diabetes.ie/living-with-diabetes/living-type-1/managing-diabetes/travelling/

My life with diabetes this week

It’s been a busy week in my diabetes world and before I launch into it I would like to disclose an event I am attending this weekend. I do a lot of volunteering in the diabetes blog space, advocating space, diabetes event organising etc. Because of the volunteering I do, I was asked if I would allow my name to go into a hat to select the Irish representative to attend Abbott’s European Diabetes Exchange forum (‘dX’) which is being held in Amsterdam, Netherlands from Friday 16th June through to Sunday 18th June.

And because of luck, my name was the one that came out of that hat.

The mission of dX is to create a place where bloggers from all over Europe can meet and exchange ideas in a fun and engaging way, and discuss matters that affect the diabetes community. This is the third year of this event and the theme is focusing on the importance of people with diabetes achieving their dreams:

DREAM BEYOND: YOU’VE GOT THE POWER!

I am very excited about attending this conference to meet other diabetes bloggers and advocates from all over Europe. I’ve already connected with some of the them through twitter. But also I’m excited because unlike other company blogger events the agenda for this one is about helping us become better at what we do without it costing our own personal health. This is something I have struggle with for a couple of years now.

Abbott are paying for my flights and accommodation but all thoughts and opinions will be my own. I will be tweeting, probably not much though, using the hashtag #dXAmsterdam2017 and I will have lots of news to share with you in upcoming blog posts and of course, I will be very interested to hear how the Freestyle Libre is doing in Europe.

And now for my week in diabetes....

FOCUS GROUPS

Last week, I was asking myself “why am I volunteering for something else that I CLEARLY don’t have much spare time for?” as I found myself getting up at a not so reasonable hour in the morning to catch a train to Dublin to attend a HSE Focus Group session.

I had asked myself several times why I was going, and was I really a good representative as a health service user? What was I really going to get out of it?

Well, it turns out it was really interesting, really informative and I really, really hope that we have helped shape our health service for the better.

And focus groups work well because people are gathered in a room away from distractions. The information shared in a group like this just can’t be captured on online surveys, emails, or instant messages. So much information came from sharing our experiences, but so much more information came from listening to others and comparing our experiences. It was eye opening! We may live in an online world but some things cannot replace having face to face contact.

“You really don’t know, what you don’t know” from the Dunning Kruger Effect.

MY LIFE WITH TYPE 1 DIABETES WITH AN INFECTION

My diabetes related story comes from the train journey to attend this focus group meeting. People with diabetes are susceptible to more infections than people who do not have diabetes because bacteria LOVES glucose!! I’m sure that's the scientific reason.

As I write this post I am uncomfortably aware that my husband's aunt reads my posts religiously and I may be over sharing.

I don’t often travel by train but the universe aligned and it made more sense for me to train it on this occasion rather than drive. And it was so much nicer! Plus, I could do some writing while i travelled. Bonus!

About an hour from Dublin, I felt a little bit off, a bit flushed and some chills. I felt a certain twinge that I needed to go to the bathroom. And when I did I realised that a full blown UTI was flaring up. And it caused me to double up in pain. Thankfully, it was a spasm and eased. I sat in my seat trying to weigh up whether I should turn around and travel home on the next train or trying to manage the situation for the 4 hours I was going to be in Dublin.

I decided that I would push on as I had had worse UTI’s and adopt a wait and see attitude.

I used to get UTI’s a lot, like a couple of times a year. And they would just suddenly go from zero to horrific in an hour. They also, ALWAYS seem to happen outside of GP surgery hours, which meant a trip to the out of hours GP service in the middle of the night and scrounging for antibiotics.

Thankfully they're not as frequent now and I seem to be able to keep them from becoming horrific all of a sudden with over the counter treatments. Except for this day where I'm trapped on a train, in a room with strangers, stealing everyone else's water, legging it to the bathroom at every break. The worst part of the trip home was the transfer to a 30 minute journey in a carriage where the toilet was out of order. It was excruciating! I want to thank the lady who sat opposite me and kept me distracted.

Once home I have a supply of over the counter treatment which started to work immediately and thankfully I’m recovered. And AMAZINGLY my glucose levels didn't seem too out of whack during this infection.

Til the next one…. :-(