Diabetes Blog Week 2014 - Day 6 - Saturday Snapshots

This week is Diabetes Blog Week.

Each day diabetes bloggers around the world will be writing a blog post on the same topic. You will be able to see who is taking part and what the daily topic is at Bitter Sweet Diabetes.

This is the first year that I have taken part and I've found it extremely challenging. They certainly aren't topics that I would normally choose to tackle, but sometimes it's good to be outside of your comfort zone!

Todays topic: Saturday Snapshots

Back for another year, let’s show everyone what life with diabetes looks like! With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures. Post as many or as few as you’d like. Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.

My response:

The highs and lows of diabetes

Diabetes kit

Weighing up what to eat - Anything is possible

Test anywhere and everywhere... including at the Royal Garden Party :)
I must have forgotten to switch off my mobile phone!

Diabetes Blog Week 2014 - Day 5 - Diabetes Life Hacks

Diabetes Blog Week 2014 - Day 5 - Diabetes Life Hacks

This week is Diabetes Blog Week.

Each day diabetes bloggers around the world will be writing a blog post on the same topic. You will be able to see who is taking part and what the daily topic is at Bitter Sweet Diabetes.

This is the first year that I have taken part and I've found it extremely challenging. They certainly aren't topics that I would normally choose to tackle, but sometimes it's good to be outside of your comfort zone!

Todays topic: Diabetes Life Hacks

Share the (non-medical) tips and tricks that help you in the day-to-day management of diabetes. Tell us everything from clothing modifications, serving size/carb counting tricks to the tried and true Dexcom-in-a-glass trick or the “secret” to turning on a Medtronic pump’s backlight when not on the home-screen (scroll to the bottom of this post). Please remember to give non-medical advice only!

My response:

I'm a newbie to type 1 diabetes so I don't have many tips to share, but I've made plenty of mistakes! When I make a mistake I look for ways of reducing the chances of it happening again. So here are three things I've learnt to do so far:

Fast and slow acting insulin pens

• Injecting the wrong kind of insulin
  
  On a couple of occassions I've injected fast acting insulin when I should have injected slow acting insulin. On one occassion I didn't even realise I'd injected the wrong type and happily went to sleep totally unaware. Thankfully? I woke up an hour later, sweating, shaking and shouting out for hypo treatments and after the biggest "hypo monster" feeding session ever, I settled back to sleep.
  
  Having had a few horrible experiences like this, usually while I'm tired, away from home, I started to use different coloured pens for the different types of insulin I use and I associated a phrase for each one.
  
  My slow acting insulin (Levemir) is placed in a blue pen and my fast acting insulin (Apidra) in a silver pen.
  
  
  (Ice Cold) Blue - Slow acting
  Silver (Bullet) - Fast acting

My bag of life.
This holds everything I need to stay alive!

• Leaving the house without my diabetes kit
  
  I might have had type 1 diabetes for a few years now but it still doesn't stop me leaving the house without my insulin sometimes or worse still, leaving the house with my insulin pen only to find there's only a few units left and beautiful triple chocolate muffin sat in front of me! Enforced carb free (and therefore usually food free) days aren't the best. Although if it does happen it's handy for checking your basal rates :)
  
  So now I have stores of my equipment everywhere. For example, at work I have a full set of needles, lancets, test strips, a spare bg meter and a catridge of fast acting insulin in the fridge.
  
  I have also invested in a "bag of life" or man bag to hold all my diabetes kit in one place including a copy of my repeat prescription and insulin passport etc.

• Leaving insulin in the hotel minibar fridge
  
  I was on holiday in the arctic circle travelling around Norway and Finland and my last night in Norway before flying to Iceland for a week was in Tromso. In the morning I got up, had breakfast, finished packing my bags and checked out of the hotel. Once the car was loaded with my luggage, I drove to one of the museums before finially driving to the airport to catch a flight via Copenhagen to Keflavik in Iceland where I would spend just over a week before finally flying home.
  
  Arriving at the airport I located the car hire company I would be returning the car to, started unloading my luggage and finalising the paperwork... and then I realised... I'd left all of my insulin cartridges in the hotel fridge!
  
  I quickly reloaded the car and drove the not so insignificant distance back to the hotel, praying along the way that my insulin was still in the fridge. Thankfully it was! It was then a mad dash back to the airport, hand over the hire car AGAIN and check in, just in time, for the flight. A somewhat more stressful couple of hours than I'd anticipated at the start of the day!
  

  

  This could be a life saver!

  
  Now when I go travelling from hotel to hotel and country to country I take with me some yellow post-it notes with one word written on them.... INSULIN. I place one of these on the door to my hotel room so I see it when I've leaving the room. I also place one on my luggage bag. Hopefully I will never be in the position again where I have over a week of holiday left and no insulin on me :)

Diabetes Blog Week 2014 - Day 4 - Mantras and More

Diabetes Blog Week 2014 - Day 4 - Mantras and More

This week is Diabetes Blog Week.

Each day diabetes bloggers around the world will be writing a blog post on the same topic. You will be able to see who is taking part and what the daily topic is at Bitter Sweet Diabetes.

This is the first year that I have taken part and I've found it extremely challenging. They certainly aren't topics that I would normally choose to tackle, but sometimes it's good to be outside of your comfort zone!

Todays topic: Mantras and More

Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day.  Or more specifically, a hard diabetes day. Is there something positive you tell yourself? Are there mantras that you fall back on to get you through? Is there something specific you do when your mood needs a boost?  Maybe we've done that and we can help others do it too?

My response:

Most probably the easiest topic yet - the #doc!

When you see people struggling with their first cannula change; or they've injected the wrong type of insulin and are unsure how to proceed; or they've just hit a low point because of a constant stream of highs or lows; or they've recevied a HbA1c result they're unhappy with - the list goes on - you see members of the community engage, discuss and help to resolve the issues and concerns. Some even go as far as to ring up and talk people through the process over the phone! It is simply amazing the support people give each other.

Many of these things happen outside "normal" NHS hours, when GPs, practice nurses and DSNs have finished work for the day and you realise that without the #doc many of these people would be presenting at A&E or ringing 111.

It's a community that most probably doesn't realise how strong and powerful it is.

When a community gets behind a cause things tend to happen. Who would have thought that the #ourD community could improve the advice published online by the likes of WebMD and Boots? That's exactly what they did, by challenging the quality of the advice given and providing constructive alternatives ,WebMD and Boots changed their website within days! We shouldn't be ashamed and We shouldn't be ashamed - we aren't now! shows how that happened.
Every time I read this article I feel proud to be part of a #doc that helped make positive changes, change that will make a difference.

As a community we could come together and create even more positive change - now that's some carb free food for thought!

Diabetes Blog Week 2014 - Day 3 - What Brings Me Down

This week is Diabetes Blog Week.

Each day diabetes bloggers around the world will be writing a blog post on the same topic. You will be able to see who is taking part and what the daily topic is at Bitter Sweet Diabetes.

This is the first year that I have taken part and I've found it extremely challenging. They certainly aren't topics that I would normally choose to tackle, but sometimes it's good to be outside of your comfort zone!

Todays topic:What Brings Me Down

May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

My response:

The dreaded buffet!

Many of my blog posts to date have covered some of the things that "get me down".

I've touched on the lack of spontaneity around food.

A recent example of this was when I attended a Christening and the obligatory buffet food that was served after the service.

Whilst everyone else went up to the table to fill their plate, I was sat trying to work out what my meal was going to be, how many carbohydrates it would equate to and what were the chances I'd go back for more.

By the time I had worked out the calculation and injected the appropriate dose of insulin, most people had already sat down and were engrossed in conversation... just as I left to fill my own plate. It can feel quite isolating (as well as stressful) when you are in social situations and have to work out carbohydrates for food you wouldn't normally eat.

Applications such as Carbs & Cals and MyFitnessPal help but it still takes time and energy. A growing number of coffee shops, fast food chains, restaurants and bars are now providing carbohydrate information too and I have tried to document them to help myself (and maybe others too) when out eating: Who helps you carb count when eating out?

The other main area that I find difficult is the lack of control, or perceived lack of control.
The repeated highs or lows, the hungry "hypo monster" and those "If I'm injecting, I may as well make it worthwhile" moments.

I won't dwell too much on these today as I'm sure you have all had these moments. They can all chip away at your positivity.

When you have to sit and wait in the passenger seat of your car for 45 minutes whilst you become road legal (just so you can drive the 20 minute journey home after work) it can be difficult to see the positives in the experience... BUT the #doc is great therapy... they are there when you are low (in both senses of the word), they are there when you are high and most importantly they understand what you are going through... then it's not so bad and you see all the amazing people you have come into contact with because of your diagnosis.

Diabetes Blog Week 2014 - Day 2 - Poetry Tuesday

This week is Diabetes Blog Week.

Each day diabetes bloggers around the world will be writing a blog post on the same topic. You will be able to see who is taking part and what the daily topic is at Bitter Sweet Diabetes.

This is the first year that I have taken part and I've found it extremely challenging. They certainly aren't topics that I would normally choose to tackle, but sometimes it's good to be outside of your comfort zone!

Today the topic is "Poetry Tuesday"

This year, Diabetes Blog Week and TuDiabetes are teaming up to bring out the poet in you! Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes. After you’ve posted it on your blog, share it on the No Sugar Added® Poetry page on TuDiabetes, and read what others have shared there as well!

My response:

Understanding Hypers - Which dose to revise?

Click, Stab, Test - Sigh.
Calculate, Record,
Inject - Don't cry.

Finding the patterns.
Looking for clues.
Considering options?
Is it time to revise?

Click, Stab, Test - Sigh.
Calculate, Record,
Inject - Don't cry.

What am I doing?
Why am I high?
Will I do exercise?
Is it time to revise?

Click, Stab, Test - Sigh.
Calculate, Record,
Inject - Don't cry.

What is the reason?
Could I be ill?
What justification?
Is it time to revise?

Click, Stab, Test - Sigh.
Calculate, Record,
Inject - Don't cry.

Now I am low.
A hypo to solve.
Was it a miscalc?
What's gone awry?

Click, Stab, Test - Sigh.
Calculate, Record,
Inject - Don't cry.

Diabetes Blog Week 2014 - Day 1 - Change the World

This week is Diabetes Blog Week.

Each day diabetes bloggers around the world will be writing a blog post on the same topic. You will be able to see who is taking part and what the daily topic is at Bitter Sweet Diabetes.

This is the first year that I have taken part and I've found it extremely challenging. They certainly aren't topics that I would normally choose to tackle, but sometimes it's good to be outside of your comfort zone!

Todays topic: Change the World

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you.

My response:

Lots of things get me fired up! The hard part is trying to focus on one thing at a time, to feel like I can make a difference, taking one battle at a time rather than spreading myself too thin and acheiving nothing.

Education and knowledge are most probably top of my list currently.

The shocking reality of diabetes in England and Wales (and no doubt the rest of the UK and beyond) is that very few people with diabetes have been offered structured education:

• Just 2.2% of those with Type 1 and 12.0% of those with Type 2 (who are newly diagnosed) have been offered structured education.
• In the total diabetes population only 1.6% of those with Type 1 and 4.5% of those with Type 2 have been offered structured education.

For a variety of reasons even fewer people with diabetes are recorded as actually attending structured education:

• 0.6% for Type 1 and 3.1% for Type 2 for those who are newly diagnosed.
• 1.0% for Type 1 and 1.4% for Type 2 for all people with diabetes.

It is no surprise (given the lack of education provided) that very few "targets" are met. Those who live with diabetes need the tools to manage their condition and it would seem very few get the training and support they really need.

Source: National Diabetes Audit 2011-2012

Given the evidence base shows that the cost of structured education more than pays for itself in the medium to long term, I fail to understand why it isn't offered to more people. It would reduce the overall cost of diabetes to the NHS and improve the quality of life for those living with this long term condition - a win/win situation and despite NICE guidance and QOF targets I have yet to see much movement in improving these shockingly bad figures.

One of the reasons @OurDiabetes and the #ourD weekly tweetchats was launched (with @ninjabetic1) was to allow others in the online community to host tweetchats on topics that mattered to them. I hope it helps the community to share information and knowledge with each other (as well as being a support network) and it's been interesting to see what fires the community up.

#ourD is inclusive in nature. Everyone with an interest in diabetes is welcomed: from PWDs, to parents, to HCPs, researchers and even MPs! What is most interesting is how the same topics, regardless of diabetes perspective, keep coming up: Education, Stigma, inaccuracies in the media and mental health. I hope #DBlogWeek will help shine a light on all of these topics and more.

Sources

1: National Diabetes Audit 2011-2012 (England and Wales data)
2: The cost-effectiveness of the Dose Adjustment for Normal Eating (DAFNE) structured education programme: an update using the Sheffield Type 1 Diabetes Policy Model
3: NICE guidance on structured education
4: QOF changes for 2013/14 to 2014/15 (page 5: DM014)

Eyes Wide Open

Today was my retinal screening day.

I'd asked and obtained the last appointment slot available as I knew my eyesight wouldn't be up to much for a many hours after the screening.

In previous years I'd been asked to attend hospital but because of where I now live, the hospital team come out to my GPs surgery. It's the first time I've seen the GP waiting room so full of people - most of them there for the last appointment slot of retinal screening - clearly we all wanted a productive day at work before it was ruined by the procedure :)

The screen chimed and told me to visit Room 1. I sat down and the lady introduced herself, explained where she was from, what she would be doing and why - very impressed, a good start!

The usual pre-test questions and assessments were done:

• What's my name? What's my date of birth?
• What's my mobile phone number? Where do I live?
• What's the date of my dx? ...always a fun having to explain this. The system says 2011, not 2009. I guess it depends on whether they want the incorrect or correct dx date :)
• Am I attending any eye hospital? Have I had any work done on my eyes in the past?
• What line can I read on the board through each eye?

...and then it was time for those "lovely drops" of Tropicamide 1% to be placed in my eyes.
I was handed a tissue and told to look up so the drops could be administered.

With the drops in my eyes and liquid dibbling down my face, my eyes started to sting but after about 15 seconds the stinging started to fade.

I was handed some leaflets and told to go back in to the waiting room until I was called again.

I find it amusing they place drops in your eyes which makes it hard to read and then provide you with reading material to explain what has just happened, what to expect and what to do if a "rare occasion" occurs. Given my drops went in at 3:30pm I'm not really sure they've thought through what I should do if the "rare occasion" event actually occurs! Should I wait until 9am the following day? I think not!

What's happening and what to do if problems occur

This time, my pack of reading material also included a Diabetes UK leaflet on the 15 healthcare essentials which I thought was a nice touch.

As I waited the 20 minutes required, I watched as each person in the waiting room was called in to get their drops and finally I was called back in to the room.

This time the lights were switched off and I was asked to sit in front of a machine to allow two photographs of each retina to be taken. Just a few minutes work was required and the procedure was complete.

Being cheeky I asked if I could take a photograph of the images they'd just obtained and as usual I got a quizzical look. I "suggested" it was so I could show my wife what they looked like (not quite true but easier to explain!). Bemused she turned the laptop screen towards me and I took a photograph... the only problem is it's difficult to know if the photograph is in focus! How did I do?

My Eyes! My Eyes! My beautiful big red eyes!

Next steps

The images will now be reviewed by someone that knows what they are doing (hopefully) and a summary report on the state of my retinas will be provided to my GP and they will also send me a copy of the letter.

Timescales? I forgot to ask that! #oops