Diabetes Awareness - What, Why?

Have you seen those posts on Facebook where you copy and paste a message that supposedly creates awareness for a heartbreaking illness without actually giving us any information about said illness? I come across them a lot, usually not for diabetes though. And then I saw this from a lady I had met recently. Now this is Awareness!

You see, no amount of copy and paste onto my facebook profile page will create any awareness if I don’t mention something I know about that illness.

This post prompted me to delve a little deeper into what exactly do the words “Diabetes awareness” mean to me and why do I want to create awareness around diabetes?

WELL, FIRSTLY, WHAT IS AWARENESS?

The definition from the Collins English dictionary of “Awareness” is having knowledge. So creating diabetes awareness is to inform people about it. And “Since informing the public can effect change, Raising Awareness is often the first activity an advocacy group engages in”- Marie Ennis-O’Connor, patient advocate.

But why do I want people to know about diabetes? Why would they need to know?

Is it because I want sympathy? Is it because I want people to know exactly how hard my life is? No, that’s not it for me.

I’ve begun to realise that there are different types of “audiences” for diabetes awareness and that my message changes depending on what group I’m with. Such as, if I’m talking to a local TD I’m usually asking for funding to improve health services, so I need to outline how much is saved through this investment and how quality of life with diabetes is improved.

LET’S BREAK IT DOWN; WHO NEEDS TO KNOW ABOUT DIABETES?

- My family and friends, - General public at large (i.e. The Masses) and - People who make decisions around our health service. - People living with diabetes.

WHAT AND WHY DO THEY NEED TO KNOW?

Each of these groups needs different information and for different reasons.

Diabetes Awareness for; people who know me. AKA Friends and Family.

This kind of awareness is very personal. And it revolves on what to do and say around me. This can be very tricky and even very dangerous. My husband has learned that if he asks me how I am and I say “Fine” that it’s code for “I am not fine at all!!! And God knows what mine field you might enter?”

For me this is a huge area of awareness. It involves teaching people not to be members of the diabetes “police” and not asking if I can eat that? To making sure you know how to administer a glucagon injection if I lose consciousness.

WHY? I teach my nearest and dearest all that I know about my diabetes so that they can support me in it.

Diabetes Awareness for; Members of the General Public.

Since starting my journey in diabetes awareness I have learned that a lot of people do not know that Diabetes can happen to anyone!!! Any age, any health, AN-NY. BODY. It’s a completely random condition, especially Type 1 Diabetes!

Everyone should know a couple of key pieces of information about diabetes, it may reduce your risk of diabetes complications and maybe even save a life.

WHY? A lot of people have type 2 diabetes and haven’t been diagnosed yet, which can lead to a life altering complication of diabetes being diagnosed first. If people with type 1 diabetes are not diagnosed quickly, they can end up in a critical condition in hospital. So, if I’m chatting casually to someone I don’t know and diabetes comes up in conversation I will outline the following;

- The signs and symptoms of type 1 diabetes (The 4 T’s; Tired, Thirsty, Thin, Toilet) - ALL the risk factors of type 2 diabetes (Over 40, Family history, High BP, High Cholesterol, low exercise and overweight for your height) https://www.diabetes.ie/are-you-at-risk/ - How serious diabetes is but that you don’t have to let it take over your life. - Then I will rinse, repeat, rinse and repeat.

Diabetes Awareness for People who make decisions around our health service; our TD’s, Hospital Managers, Our Health Service and our Department of Health.

This is a minefield! Our health service in general needs so much investment that we have to get in line with everyone else. And trying to impress on people who make decisions about funding our health care and the people who implement its delivery usually requires hard evidence such as research on how an improved health service for people with diabetes can improve and save lives, it also requires knowing how much it’s going to cost.

And sometimes, because of our low numbers in type 1 diabetes, we need the help of the general public to effect change.

Diabetes Awareness for People living with diabetes

This is the most straightforward diabetes awareness message, and it’s just to let our fellow D-Peeps know where they can go to find out everything they need to know to help them manage their condition. But most importantly that they are not alone and they can do this.

When I was first diagnosed with type 1 diabetes 24 years ago, I did not know anything about it. Not a thing! And I thought “why would I have needed to know?” Well, now I do know why people need to know about diabetes and why. A little knowledge is a powerful thing.

Just in case and then it did...

When you plan for the unexpected and then the unexpected happens you never feel more grateful for the time you spent on the “just in case” supplies. Last week, our family took a road trip across the country to GO TO IKEA!!!! It was very exciting as we were finally converting our Playroom/home office to a Teen Cave… home office (I’m not sure we’ve told them that yet? ;-s Oh well. Oops!

After a very long, but successful day, we were on our way back west. Our plan was to stop at the infamous exit 23 on the M7 to have dinner. However, a few short minutes after we drove passed exit 22, there it was! About two kilometers of red brake lights. Quickly we flashed our hazard lights on to warn the cars behind us that we were all coming to a complete stop.

And there we sat for two and a half hours!!!

We watched the fabulous sunset, our thoughts never straying too far from what had caused this stop and hoping that no one was hurt and we watched the emergency vehicles and personnel travel back and forth.

I monitored my blood glucose very closely on my CGM as my alarm letting me know that my levels were dipping below 4.4mmols/l (79 mg/dL). I managed to keep it above 4.0mmols/l (72 mg/dL) but I didn't want to aggressively bring it up as I didn't know when dinner would happen. When we did get to eat, I wolfed down fast food and so was kept away a lot that night with high blood sugars. Sometimes there is just no winning with diabetes! But you know what, I wasn't willing to eat something as large as a human any more. I wasn't hungry any more.

I planned for a “just in case”, I worked with what I had and it all worked out better than it might have than if I hadn't.

These two and a half hours gave me so much time to be grateful for some coincidences and for some good planning.

• I never take a car trip without some snacks. Even, if I end up not eating it, I still do it. We had a box of Lidl Bread Sticks and when my blood sugars were 4.4 mmol/l those breadsticks kept them from dropping any further. But slowly. As well as keep hungry children content.
• Always use a bathroom when the car stops! This lesson was shared with me by my husband’s Aunt and is always remembered. Two and a half hours is still a long time and I was still very glad to eventually see the bathrooms of Exit 23.
• I always carry glucose tabs in my glucose meter case. Always! If I ever get disoriented they are there staring at me and hopefully I will recognise them as the solution. And I always carry a spare pack in my handbag because you never know when you might need more that your usual amount. I was so glad that I had them if I needed them.
• I’m so grateful there were two adults in the car and that I wasn’t driving.

Even though something like this has only happened to me once before and is unlikely to happen again. It’s worth being prepared for the “just in case”; having a couple of snacks and some glucose in car whenever you take a roadtrip.

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.

Scary Diabetes Heart Stuff

Last week, our local type 1 diabetes support group organised a talk on heart disease and it’s association with type 1 diabetes (with a great speaker and a good crowd - thanks to all who attended). I feel that out of all the complications of diabetes it’s not talked about as much as the diabetic retinopathy, foot disease or kidney disease complications.

Yet, I also feel that it’s the sneakiest of all the complications. There are warning signs for diabetic retinopathy, foot disease or kidney disease and, in today’s world, it is possible to maybe halt the progression of these complications.

But unless you are paying close attention to all the risk factors; high blood pressure, high cholesterol, family history and the lifestyle factors, it can seem like it comes from nowhere. Not to mention that better glycemic management is linked to weight gain, which increases our risk again! Yeah, right - how can we win?

I also was under the impression that because I eat healthily and exercise I had that box firmly ticked and didn’t have to worry about heart disease. That heart disease related more to people with type 2 diabetes. A cholesterol level of 5.7 told me otherwise.

And then I found this; “Heart attacks and other cardiovascular complications cause the death of nearly 3 out of every 4 people with type 1 diabetes, compared with just 1 in 4 people in the general population.” according to a Swedish study published online September 18 2015 in medical publication; Lancet Diabetes & Endocrinology.

Dang it - I should always question what I think I know!

Our speaker was very concerned about giving us negative and scary information. But I was like "bring it"! I was not scared or running from the room hysterically. And I was surprised at my reaction.

All this information might seem like it’s scaremongering. But I was not scared or running from the room hysterically. P.S. I do firmly believe that fear is not a good motivator for anybody!!!

When I was younger, I really didn’t want to hear about the worst case scenarios. Those nasty complications that would happen to me if I didn’t do as I was told. I didn’t want to know about what could happen down the road.

Well, I seem to be at that point “down the road” where information, even scary information, gives me power over it. At our presentation, I was calmly thinking to myself “it’s good that I know this” and “it’s not going to catch me out because I know this scary diabetes heart stuff now”.

It feels strange now that information about what were once “scary diabetes complications” is now information that gives me power over my diabetes. This information empowers me to stay healthy… but I was also ready to hear it.

This Is How I Do Diabetes Clinic

This post was inspired by the Diabetes Dominator - Danielle Hargenrader and her video series This is how I do Diabetes. Thank you so much, Danielle. My recent visit to my diabetes clinic took five hours door to door. This is probably not unusual for many people attending outpatient clinics in public hospitals in Ireland. However, for someone who has good management of their diabetes and is a very low maintenence patient; it seems a bit ...  uumm, Not Sensible.

Here's how my visit went;

I left my house at 1pm and an hour later I pulled into the queue, yes queue, for the car park at the hospital. I queued for fifteen minutes before I squeezed my Mazda into a parking spot. I had 15 minutes before my scheduled appointment and after sitting for an hour with more sitting in my future I walked over to the main hospital building used the bathroom and got a coffee. Input to replace output ;-)

I headed back over to the diabetes clinic building and I was called by the healthcare assistant for blood pressure and weight in within minutes. Then back to waiting room where I noticed a sign “Be quiet, clinic in progress”. Eemm ok! What parties have I been missing?

I’m really glad the my clinic has free WiFi - definitely helps pass the time. Most of the time I like to be disconnected from the internet when I leave the house but not for huge chunks of time in a waiting room.

A loooong time later, I took an open slot with the dietitian. What else was I doing? I was going to ask to see one anyway to get advice on areas that could help reduce my cholesterol. So this was a long educatio session, maybe 20 minutes.

AND, back to the waiting room. At this point, I was making small talk with some of the other patients there. It was an insulin pump clinic so we all had that in common. We chatted about different blood glucose meters, some of the apps that come with them, the Freestyle Libre and other CGM’s.

Another long wait later, I was called by the non consultant doctor for review. This really didn’t go anywhere. or add any value to my visit. It took me a couple of tries to log into my online records. And while I took over her keyboard, she took a call. Once I had pulled up my reports, she pointed out how my blood glucose range was very wide. Somethink I alread knew and we actually quite recent. She then asked me a couple of generic questions, you know, how many hypos do you have on average, per week, and such.

About 10 minutes later my non consultant doctor asked for the Consultant to review my case. I’m not really sure why. And then we waited for that to happen.

Once my consultant came into the room the appointment progressed much quicker and was more beneficial to me. I got to discuss all the things I needed to, got all the answers I needed and a prescription for last weeks statin too.

I used bathroom once more, checked my blood glucose and drove out of the car park at 5pm, arriving home to my door at 6:05pm

In total that's two hours in the clinic, one hour drive each way and time for parking, coffee and loo break. Time actually spent with a healthcare professionals was approx. 45 minutes.

That’s really my whole day gone. And I had organise to have my children collected from school as it was an afternoon appointment.

5 hours to be healthy!