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

Getting the view from the other side - How do you get copies of your medical records?

In previous blog posts I shared my diagnosis story.

I had some gaps in my memory and I didn't understand how my diagnosis from type 1 diabetes on admission changed to type 2 diabetes on discharge.

I thought it would be interesting to find out if I could obtain information and gain answers to my questions by requesting all of the records detailing my stay in hospital.

Requesting access - challenge accepted!

Requesting copies of your medical files is a fairly straightforward process... once you know how to do it!
My stay in 2011 was at Doncaster Royal Infirmary and if you want to see how hard it is to find out the process, I suggest you spend a few minutes now trying to find details of the process from their website.

To make it easier I will give you a head start. This is the website for Doncaster Royal Infirmary and there is a lot of information detailing (for example) how Freedom of Information requests are dealt with. If you are interested in details around FoI requests you can find that here: Doncaster Royal Infirmary FoI request information.

When you have given up trying, please come back here and I'll share with you a secret :)

Gaining access to your records is not done via a Freedom of Information request.
To gain access to your records you need to send in what is known as an "application for subject access to health records", which for living individuals is covered under the Data Protection Act 1998.

Now that you know the mechanism for requesting medical records, you might want to try again to find details of the process on their website. Any joy? No? Me neither!

I still don't know how you obtain this information from their website without resorting to Mr Google. Mr Google is a friend of mine and helped me find this link to a document on their website: Processing Requests for Access to Health Records Procedure.
It was from this document that I worked out my first step was to fill in the form provided in appendix A and send it in to the Health Records Manager at the hospital.

You might want to see how easy your own hospital makes it to understand the process you would follow to obtain copies to your own records and share your successes and/or frustrations here.

Interesting Discoveries

Reading the documentation I found some interesting facts:

1. They can charge a fee of up to £50 to obtain copies of your medical notes and they can take up to 40 days from receipt of payment to provide them.
2. If you only want to view them at the hospital and you don't want or need your own copies, you can do so for £10.
3. If the Department of Work and Pensions ask for copies of your medical notes, they will be provided with them for free and within 10 working days of receiving the request!
4. Your request will be logged in your case notes: "ensure that a record is made in the health record that subject access has been allowed / limited to relevant sections of the notes. Hospital casenotes will be stamped on the front inside cover to indicate the date and scope of access".
5. and you might not get everything you requested if they judge it "might cause serious harm to the physical or mental health of the patient or any other individual, or where a third party might be identified." There is also no requirement for them to disclose that information is being withheld.

My Request

I rang up the department before filling in the form to double check I was doing the right thing and they were very helpful. They confirmed the process (and the fees!) and pointed out it would be much cheaper (£10) should I wish to review my records with a HCP at the hospital (who would be able to explain the records to me).

I wanted my own copies, so I filled in the form and sent it by first class post and then waited for a response.

I received a letter (within the timeframe allowed) telling me that it would cost £26.25 to obtain copies of my records and that I could pay by sending them a cheque or by card or cash if I paid in person at the cashiers office. I decided to ring up and see if I could pay by card over the telephone and it turned out that I could.

They said they would transfer me to the cashiers office and then check 15 minutes later to see if payment had been made. If it had, they would send the notes out to me by 1st class post.

The following day I had my hospital notes!

• Did they answer my questions?
  No and possibily created more questions than answers.
• Did they help me remember certain things?
  Yes they did.
• Did I learn anything new?
  Most definitely!

In my next post I'll show you some of the things I learnt and some of those observations "from the other side".

...and now I am 1

In part two of my diagnosis story I'd been living my life as someone with type 2 diabetes and made big changes to my diet and exercise patterns. I'd lost a lot of weight and continued to do so. At my quarterly appointments I'd been encouraged by the progress I'd made, but the requirement for pills hadn't gone away. Slowly but surely it was getting harder and harder for me to keep control of my blood glucose levels and with my motivation based around working towards a no pill solution, it was upsetting to see myself failing and requiring more and more medication.

In an attempt to minimise the tablets (and ideally remove the need) I looked at the two things that really were in my control - exercise and food. I had already increased my exercise levels and I was regularly going on 10+ mile hikes at the weekends, at work I was using the stairs rather than the lift to get to the twelfth floor etc and so that left the only other variable - food.

This is how the gamification of my condition led to some "interesting" choices.

I understood that eating carbohydrates increased my blood glucose levels and that the medicine was getting less and less effective at bringing my levels back into range. Therefore, if I eliminated or reduced the carbohydrates from my diet then I'd minimise the blood glucose highs.

Foods started disappearing from my diet...

All fruit except berries (raspberry and strawberry) caused bg highs - REMOVED!
Pizza would cause bgs to run high for days - REMOVED!
Pasta - REMOVED!
Eventually it would be the same for rice - REMOVED!

... you get the idea, a lot of foods disappeared from my diet!

In the end I was eating three small meals a day with no snacks inbetween.

If I was really hungry in the evening I would sometimes relent and have something from my choice of three "cheat foods":

• Cheese and two crackers (4.5g of carbs per cracker)
• 50g salted peanuts (9.8g per 100g of peanuts)
• Options Hot Chocolate drink (5.4g of carbs per sachet)

In the morning I would weigh 30g of All Bran and 40g of semi-skimmed milk (17g carbs), I had a small ham salad sandwich for lunch (40g carbs) and then a small meal at night which had to be less than 70g of carbohydrates but ideally much less (c30g).

Towards the end of my time as "Type 2" I was eating less than 1,000 calories per day and less than 100g of carbohydrates, but I was getting lots of praise for how much weight I had lost.

At the end of March 2012 I knew something was very wrong but I didn't know what. I felt a complete and utter failure. My medication was being increased, my carbohydrate intake was being reduced and yet I still couldn't control my blood glucose levels.

The most disturbing thing was that I was started to feel tired and not wanting to do things - exactly the same feelings I had before being hospitalised in 2011, but this time I knew why I felt this way and that scared me. It felt like I was on a path back to hospital and no matter how many constraints I placed around my food, no matter how much exercise I did, diabetes was going to win.

I started to do my own research, to try and understand what was happening to me. I made slow progress because I didn't have the energy to do much after work.

Carb free eating in Iceland
Can you tell what it is?

Before going on holiday to Iceland I rang Helen (the nurse at the GP practice) to talk about my numbers going adrift and what I should do given I was out of the country for the next couple of weeks. I told her I thought the gliclazide wasn't providing any benefit and asked if should stop taking it, but it was suggested that maybe I was coming down with a cold or something and I should leave it a bit longer. If my numbers continued to drift up I should increase my gliclazide up to the maximum allowed, 160g in the morning and 160g at night. Unhappy at this prospect I went on holiday.

Needless to say, despite the increased physical activity, the walking in the mountains, the hiking up volcanic craters etc my numbers did continue to rise and so did my tablet taking.

On my return from Iceland the research continued and I read something that made me sit up.
I immediately went and dug out my discharge letter and read it again - there it was "urine +ve for ketones/glucose" - was I type one and presented in DKA back in 2011? I recalled the initial assessment of Type 1 on arrival at the hospital. I continued to read and came to the conclusion I needed to ask for a GAD and c-peptide test in order to settle it.

I went in to see Helen and she agreed to the GAD test but said they didn't do c-peptide tests. It was a start and might be enough. Easter was coming and I was warned it could take a bit of time for the results to come back. A HbA1c test was done at the same time and obviously that result came back much quicker. My HbA1c results since hospital were as follows:

HbA1c in 2011: March(diagnosed) 11.8%, June 6.4%, September 5.7%
HbA1c in 2012: January 5.8%, April 7.8%

About three weeks on and I still hadn't heard anything about the GAD results. I was told I should find out on the Monday 23rd...

Needless to say the 23rd came and went with no information.

One benefit of losing so much weight was that I believed my sleep apnoea was no longer a problem. I asked for an overnight test to be performed. On the 27th April I picked up a pulse oximeter machine and over the weekend stopped using the CPAP machine and instead recorded my oxygen and pulse levels with this...

A Pulse Oximeter unit for overnight tests

The blue thing in the bottom left of the picture goes on your finger and sends light through your fingernail to measure oxygen levels and sends the information to the machine in the top right of the picture which you wear on your wrist.

The waiting continued...

Waiting for the GAD result...

Waiting for the Pulse Oximeter result....
 
Whilst I waited, the blood glucose control got harder and harder as did the food control.

On May 7th I shared this post online:

Apologies for the length of this post. Not sure really why I'm posting, I know I just have to wait and see what happens and deal with whatever the result is. I guess I just need somewhere to vent a little and waiting isn't something I'm good at! lol.

Since diagnosis last year I thought I had this diabetes under control, but clearly not!

I have changed my diet and reduced my weight from 122.6Kg to 85Kg (6 stone) and still reducing.
My HbA1c results had been good, at just under 6% for the last few tests.
Until recently I was on just 80mg of Gliclazide and having regular lows at around 5pm, so I was about to discuss a reduction in medication, but then overnight something happened.

No longer were my results under control, despite no changes to my diet, drugs or exercise programme.
I waited a week to see if this was just a blip before ringing up to discuss. I was told to wait a little longer in case I was coming down with a cold or something, but that wasn't the case.
It was agreed to up my Gliclazide from 80mg in the evening to include a further 40g in the morning.
I tried that for about 10 days and then it was upped to 80g in the morning.

There was no positive impact on my numbers, in fact it was continuing to creep up, so it was upped to 240g of Gliclazide a day. Still no impact, so finally it was upped to the full 320g, 160g in the morning and 160g in the evening.

So my numbers now fluctuate between 14 and 18mmol/L each day and are pretty much stuck there. Whether I have 100g of carbs a day or 200g of carbs, my numbers just won't get any lower. I've had a couple of days of feeling really rough but my body seems more accepting now of running with high blood sugars... although I know I'm still not doing as much as I would normally, I have that "can't be bothered" feeling in me.

So the current thought is that I was mis-diagnosed and that maybe I am Type 1 after all. When I was first admitted to hospital they thought I was type 1, I had ketones in my urine and the sudden nature of it all pointed in this direction, but by the time I left they had settled on type 2 - no doubt due to my age and weight. So I went in for a HbA1c and a GAD antibody test.

The results of the HbA1c came back at 7.8% (no surprise given that my own readings each day had shown I was outside of the 4-7 mmol/L range) and I am still awaiting the result of a GAD antibody test - unfortunately it seems that for this test it takes several weeks for a result to come through.

It seems odd to be hoping for a positive result but I'm starting to worry about it coming back negative.
I (kind of) understand what will happen if it comes back positive and I can deal with that... at least I think I can

If it comes back negative though, I'm not really sure. They could try adding more drugs into my regime - although they haven't told me what other drug options are available or give up on oral drugs and switch over to insulin.
These options just seems shocking to me, one year into a T2 diagnosis having lost (and continuing) to lose weight, to be in a situation where I can't control it with diet and oral alone... that doesn't seem to bode well for the future.

I can see myself getting close to coming of the rails completely, thoughts like "have a biscuit, you're numbers are out of control anyway" are starting to creep in to my head and (I think as a result of the increased dose of Gliclazide) I'm feeling a lot more hungry between meals than before. So far (in the main) I have resisted, but there have been a couple of occasions already when I have given in and more worryingly although I might have had a short term spike with these "indulgences" they haven't really made much difference - by the time I get to my pre-meal reading there is no indication of a slip up - making it harder to stick to the regime.

I'm sure other people have been in this situation and I'm just looking for a little bit of advice on how others coped with being in this situation.

Many thanks (and sorry for the moan),
David

I rang up the following day to see if the results had come in, they hadn't but I was told to come in the following day and it would be sorted.

Waiting for the results...

That night I came home from work, shattered and hungry. I tested my bg level and saw it was in the 20s. I just sat in the kitchen staring at the meter reading until the screen switched off.

Do I eat now and possibly end up in hospital?
Do I not eat and go to bed hungry?
What if tomorrow they tell me I'm not type 1 and I really am type 2, because I can't live like this?

After sitting for what seemed like an eternity, on the verge of tears, I ate a piece of cheese and went to bed.

The following day I went to the surgery and, when I saw Helen, she told me that the results still hadn't arrived. She rang the lab whilst I was sat there. The GAD result was positive, I was type 1 after all!

finally!

I thought I was prepared for the news. It's was (bizarely) what I wanted to hear and yet it was still a shock to actually hear it.

Helen spent time teaching me how to inject, how I should tweak my background insulin doses, gave good advice on colour coding my pens, made sure I had a backup pen etc and that day, in the consulting room, I did my first background insulin injection in my leg.

I was so tired that I knew if I didn't write down some of these things I'd been told I would easily forget, so I recorded this:

A happy ending?

Well at this point things were looking up. I finally had a correct diagnosis. It meant new challenges ahead, but it also meant I could eat properly. With the weight loss it was confirmed that I no longer needed a CPAP machine for my sleep apnoea...

...the first set of tablets were removed...

...and I started to get better at injecting myself...

On the 14th I was introduced to one of the DSNs who could start me on my fast acting insulin (Apidra). The meeting didn't start well.... "Hi David, so you're type 2..." "Er, no!", but at least I had a full toolkit for living and things seemed to be going ok.

It was amazing how quickly my numbers came back into range.

My bg values before and after type one diagnosis

The relief was huge, but it wasn't quite a happy ending. To get the happy ending I was going to discharge myself from my consultants care - a story for another blog post!

Maybe this isn't the end of the story, maybe this is just the beginning!