Insights, Inspiration and Setting Direction - Diabetes Organisation Summit

Insights, Inspiration and Setting Direction - Diabetes Organisation Summit

The Novo Nordisk European Diabetes Patient Advocacy Summit was created for patient organizations from all over Europe to gain Insight, Inspiration, Inspiration-and Direction Setting. We heard best practices from other diabetes organisations and the two day conference identifying challenges and barriers in our own countries and what to set as a priority in our countries.

Freestyle Libre4All 6 months Later

Freestyle Libre4All 6 months Later

Over six months ago, the Irish health service, the HSE, launched the reimbursement of the flash glucose monitor, the Freestyle Libre, to people with type 1 diabetes aged between 5 and 21 years.

It has been almost 9 months since the HSE announced that the reimbursement scheme would only be open to people with type 1 diabetes aged between 5 and 21 years which led to over 19,000 people signing an online petition to remove this age restriction.

When Taking Insulin Make Sure Brain is Awake

When taking insulin in the morning MAKE SURE BRAIN IS AWAKE AND ENGAGED. Aaarrrg!

I gasped as I completed my insulin dose! Crap! I just realized I used my non exercise day insulin to carb ratio for my breakfast. I wasn’t even distracted by questions from young people, I just wasn’t fully awake.

IMG_0240.jpg

Thankfully, I noticed it right away and instead of the paramedics giving me a lift home after my walk by way of the hospital, I decided to reduce my background insulin for 2 hours to counteract having more insulin than I needed. Then I adopted the wait and see approach. What other approach is there when you live with diabetes?!?

I did avert a nasty hypo, in fact, my glucose levels were a tad on the high side. So, I corrected and moved on.

From this point forward, I will most definitely MAKE SURE MY BRAIN IS AWAKE AND ENGAGED when taking insulin in the morning.

#LifewithDiabetes

Hypo Hell and other Afterlife Terrors

After this hypo happened last February I wrote it down how I was feeling as a way to cope with the aftermath. It really shook me up and felt like a hellish experience. It really shook me up and felt like a hellish experience. I found it today when I was looking for some inspiration for this weeks blog post and the feelings I felt then are still with me six months later. So here is the Hypo Hell and other afterlife terrors.

3 February 2018

I could feel the full force of this hypo by the time I was in the kitchen making my breakfast. This one actually snook up on me: I haven’t had a hypo this bad in a number of weeks maybe even months because I wear a continuous glucose monitor (CGM) and it usually gives me a “heads up” so I can ward it off. But this time there was no warning.

The dilemma for me when a hypo presents just before a meal is if I can wait until I’m going to eat anyway instead of having to gobble a couple of glucose tabs (i.e. extra calories) I don’t need. But this one was not going to allow that so I reached for two glucose tablets (6 grams of fast acting carb) to at least take the edge off.

About 5 minutes later, I was trying to eat my toast slowly so as not to slow down the fast acting glucose. I did feel that I wasn’t dropping any lower but I did need the sweat to stop dripping from my forehead and my brain to defog. So I sat trying not to use said brain for 15 minutes.

What happened in the next couple of hours was really what left me feeling wretched - the rebound high. I had taken my usual breakfast insulin dose because I figured that the glucose tablets were enough to correct the low. What I didn’t factor in was the steroids I had on board that have made me very insulin resistant and needing to up my mealtime insulin by quite a lot to keep me in range.

As I started to feel nauseous while grocery shopping I found a place to do a finger check and I was 22 mmols (396 mg):-O I took some more insulin and this time I was more “generous”.

After an hour I could see my cgm arrow point ➡️ and I was reassured. The next hour the arrow pointed down and I was thankfully coming back into range to have lunch. But the rest of the day was very much about being a bit of a couch potato with a sore head.

I really don’t understand how people can think that managing diabetes with insulin is easy! If it’s so easy you can have mine. Seriously!

My Diabetes Driving Licence

A couple of weeks ago I noticed that my driving licence was due for renewal this month. Thankfully, the very next day, my renewal form arrived in the post, so that was nice, something I didn’t have to do.

However, I’m a little embarrassed to find out that what I’ve been telling other people with diabetes for the last couple of years about being able to get a ten year licence has been wrong. The way the guide is written for healthcare professionals means they can’t- they can only choose the one-year or three-year option for renewing.

Taken from the Medical Fitness to Drive Guidelines

Taken from the Medical Fitness to Drive Guidelines

“If meets medical standard a 1 or 3 year licence may be issued.”

Well, Fine! (Said with attitude) I’ll grumble a little about having to do this every three years it is, after all in the best interest of public safety including my own. I’m used to doing the extra to be safe.

Here’s what totally not at all FINE! Now I have to pay twice what a 10-year licence costs.

The 10 year driving licence renewal costs €55, the 3-year licence costs €35. I pay over €11.60 per year and my fellow drivers without medical conditions pay €5.50 per year. And that’s before I calculated how much more I have to pay in GP fees to have my fitness to drive form signed.

€11.60 versus €5.50

Another way to look at these figures is that over the next ten years I will pay one and a half times more: paying the NDLS €116 and my GP €150 making my ten years of licences cost €266 versus €55 + €50 = €105.

€266 versus €105

I complying completely with all that is necessary for me to be a responsible driver. I use my meter to check my glucose before and during a long drive. I make sure there is glucose in the car. I wear a continuous glucose sensor that alarms if my glucose levels are dropping and I pull over if they are.

In the UK, if you have a medical condition short term licence it is free to renew.

This is unfair! Why am I, and others, being financially penalized by the Irish National Driving Licence Service because I have diabetes?