Blood Sugar Trampoline

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).

The Vicious Circle in disguise

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”.

2016-09-09 img

Diabetes Cured- What I’d Do First

I don’t know how long it took me to realise after my diagnosis of type 1 diabetes that what people were telling me about the cure being found in five years was total tripe! But I did! Not only that but I actually gave up all hope of it. Not in a bad way, I just got on living my life with diabetes and tried new treatments and didn’t spend much time thinking about a cure.

That is until I heard Aaron Kowalski speak at the Friends for Life UK conference in 2014. This talk was the most EXCITING and positive that I attended at this conference and I came away with a solid belief that the next best thing to a cure (either the Artificial Pancreas or Beta Cell encapsulation) is probably more than 5 years away but it’s close.

By the way, there is a Friends for Life UK conference happening this October and I believe there are less than 100 tickets left which can be booked here.  Find out more from their Facebook page.

Anyway, back to a diabetes cure and what if there was, some day, a cure? What would I do first?

I’ve struggled with an answer to this because there are so many things I could do, like eat a whole chocolate cake in one day but I feel like I really wouldn’t truly feel happy after the first slice. but what would I do first and most enjoy?

Diabetes Ireland’s Research Section

Then it came to me in a dream a couple of weeks ago and I remembered to write it down. I was on a very long, leisurely and invigorating walk. It was somewhere beautiful like the Burren, the view was spectacular. I was carefree and felt weightless. I was not one bit worried about my glucose levels at all. I didn’t have my glucose meter or supply of glucose with me – my rucksack so light. It was a good dream! It was a dream that made me feel happy when I woke up.

It was a dream where I didn’t feel lost if I woke up tomorrow morning and my type 1 diabetes was gone. I’ve been doing diabetes over half of my life and a lot of what I do is habit. I do glucose checks without thinking. Not only that but my blogging, advocating, reviewing educational material for pharma companies & event organising takes up so much of my life and I love doing it. So what would do instead? I suppose the answer is anything. And whatever I wanted.

Now I was on a roll and I thought about what it would be like to eat when I was hungry I may even enjoy food again. Be enthusiastic about delicious food instead of seeing meals as math problems.

Or What would it be like to go to the beach and not worry about sand getting into my medical devices or trying to keep test strips and insulin cool? What would it be like to go through airport security like a person without diabetes-oh wait that actually happened 🙂 see here. What would it be like just do something spontaneous?

What would it be like to have all that space in my brain that’s currently occupied by diabetes related decisions?

What would it feel like to not know what my glucose so levels were every minute of the day, but still know that they were normal???

Well now I’ve opened the can of worms I can’t seem to stop.

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.

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

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…. 🙁

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.

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?

Diabetes gone Wild on Holiday

Diabetes on Holiday

It’s summer, which means for a lot of people it’s holiday time. “They” say that diabetes never takes a holiday but what “they” don’t tell you is that when you take a holiday you should be warned that your diabetes will behave as if it’s gone wild in Ibiza and partying like it’s 1999.

I took a holiday for the last couple of weeks. I didn’t go anywhere though. My brother in law and his family were visiting from America, hubby took ten days off work and the kids are on their summer break, so I decided it was a good idea to take a break too. No emails, no posting, very little facebook and twitter (let’s be honest – zero facebook while FFL was going on in Florida was just out of the question:-)

We did lots of day trips, lots of sightseeing, lots of driving, lots of eating out and almost no downtime. One day there could be lots of walking, the next was lots of time in the car. This is my diabetes worst nightmare!

Diabetes gone Wild on Holiday
Diabetes gone Wild on Holiday

My high and low blood glucose alarms went off a lot! Food that I thought might be low carb turned out not to be. Trying to schedule bathroom breaks around optimal blood glucose checking times was challenging. It was all exhausting. My diabetes broke all of the rules, even the ones that I had it well trained in. It decided that all bets were off.

For the biggest part, the holiday was soo much fun with fun people. But I’m ever so glad to be chillin’ at home with the kids for the rest of the summer.

The Blood Sugar Train Wreck

This train wreck started with a decision to skip the spud at dinner, in my opinion. We were having Chicken Maryland and so there was enough carb on the breading to double my usual dinner carb count and I decided to forego the mash potato.new doc 86_1

This middle/2nd dip below the blue line in my photo opposite shows the low blood sugar after dinner.

I, mostly, eat low to moderate carbs to help maintain good blood glucose management. It’s a decision that I made for myself and I would never try to make it for anyone else.

Having said that, the real, real reason I skipped the spud was to have an ice cream. :-S It was a Saturday and I like to have a special treat on the weekends. Being a stay at home mum, it kind of lets me know there is something different between weekdays and the weekends.

I feel like I’m digging a bigger hole for myself here!

Anyway, here comes the second questionable decision. My blood sugars plummeted after dinner and I was so SICK TO DEATH of eating glucose tablets that I opted for chocolate and jellies instead. I know! I know! Not the smartest idea. (Another big hole) I can’t even use the fact that my hypo was affecting rational decision making because it didn’t.

Lots of jellies!

Ok, now the predictable happen. ↑↑ Yep, blood sugars doing the opposite of plummeting, which eventually lead to rage bolusing because insulin does NOT work as fast as I would like it too.

Next up, the rocket train down again. At this point, I took 5 glucose tablets, I usually only take 2-3, to make sure it was well and truly taken care of and that I would not wake up again before I was suppose to.

There is no lesson in this post. I’m just frustrated!!!

But I survived! I learned! And I shall not beat myself up over it:-)

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