Wednesday, 12 March 2014

Living as Type 2 - part 2 of my diagnosis story

In my first blog post about my diagnosis story I finished just as I'd arrived home after a week long stay in hospital. I'd left with a diagnosis of type 2 diabetes, a mountain of drugs and not a clue what this diagnosis actually meant. Arriving home, shattered, I had a shower, went to bed and slept through the entire night for the first time in a week - no vampire mites checking my blood glucose readings!

15th March 2011 - What do I do?

The following morning I woke up and started the pill popping exercise that would become a fact of life. For someone that didn't take tablets even for headaches this was a huge mind shift.

But what next? Do I just go back to work and carry on as if the last week hadn't happened? Would the pill popping "fix me"? Was that "it"?

Despite a good nights sleep I was still tired and I certainly wasn't up to going in to work, but I'd have to at some point. I'd have to eat at some point too, but what was safe? Surely if what I ate previously put me in hospital then if I carry on eating that stuff I'd end up there again? Given I didn't have any cereal in the house I had two pieces of toast with my pills (on the basis I had toast for breakfast in hospital) whilst contemplating all these things.

So many questions and no answers. I picked up the phone and rang my GP surgery as soon as it opened and asked if I could see someone. The practice nurse who dealt with diabetes agreed to see me that afternoon and pleased with myself for getting an appointment I switched my attention to the internet. I searched the internet to find out what diabetes was all about and more importantly what it would mean... to me.

In the afternoon I saw Helen. Helen spent a long time talking to me! I have no idea what her diary actually looked like for the day but I must have messed it up significantly, but I didn't even have a hint that I'd done that at the time.

After I'd summarised what had happened to me over the previous week and Helen had recounted how she'd tried to get hold of me at the very time I was being hospitalised, she talked me through Diabetes 101.

Helen spent time to explain what type 2 diabetes was, how I could manage the condition, gave me a blood glucose meter, showed me how to use it, the best practice on finger pricking, talked about targets and not being too aggressive in bringing my numbers down to more "normal" levels, gave me reading material created by Diabetes UK, sorted out my prescription, told me how often I'd be seeing her and why. In short, everything I needed to go from frightened uneducated patient to empowered, more relaxed patient. It wasn't information overload, Helen told me everything I needed to know and nothing more - and I soaked it up!

I can't describe how much that one meeting impacted me. It was the most compassionate thing that has happened in my care. I could never repay the kindness shown to me that day. Helen has a special place in my heart because it and I dread to think how my diabetes management would have gone without it.

I went home and fell asleep - sleeping was going to be a regular feature of my day for a while, but the following day I started my first bg diary...

The first page in my book recording blood glucose results

Typical me decided that the logbook didn't capture enough information to be useful and so I added times and details about the food I'd eaten, so I could understand the impacts of time and different foods on my bgs. Data analysis? yummy!

My first supermarket trip post dx

That night I went to the supermarket and if there was a store detective following me around, they must have wondered what was going on - I was there for hours!

I should have called it Operation Minimise Carbs rather than weekly food shop.

Every food item purchased was selected after comparing every other product in its class. If I was buying yogurt, I picked up every brand available and compared the carbohydrate content of each until I had identified the lowest carb content yogurt available to buy. If I was buying cereal, it was the same. If something had a carbohydrate content 0.1 grams less that the one in my hand then the newly identified product was selected. Nothing that went into the trolley was based on price, calories or taste. Carbohydrate content was the only criteria for selection and later in my type 2 "phase" certain products were rejected if the lowest carbohydrate product was deemed too high. This was a numbers game, pure and simple - given my day job is all about numbers I had the best condition I could wish for - and this was a numbers game that I could win.

17th March 2011 - Posting in a forum

I should most probably acknowledge the impact of the drugs I was taking. The combination of Metformin and Glic was causing me significant discomfort, with regular trips to the loo! Something that would eventually start to settle down, but ultimately I was switched onto a slow release version of Metformin which helped significantly.

Between the sleeping and toilet visits, I spent my time reading everything I could find about diabetes, both online and in print. The thing that worried me the most was that I couldn't find anyone with similarly high blood glucose readings and it felt like I had an insurmountable challenge. I fought an internal battle about sharing my worries online and eventually decided to post them in a diabetes forum and see what kind of response I would receive.

Just out of hospital with type 2
Hello everyone,

To cut a long story short, I've only just come out of hospital having been admitted last week as an emergency - not very pleasant! I had started the process of finding out what was wrong with me with the doctors, but events overtook all that.

I was on a sliding scale drip for most of the time I was in hospital and had the joys of having some potassium tablets to get my potassium levels back in order. My level was just short of 27 when I was admitted.

Anyway, now that I'm back home I have been to see the nurse at my doctors practice.
I have been provided with a testing kit etc and I'm on 80mg Gliclazide in the morning and 1000mg Metformin in the morning and 1000mg in the evening.

My numbers seem much higher than anyone else here, which worries me somewhat.
Perhaps that is down to the recent diagnosis(?) My 1c test in hospital came back as 11.8%

I completed a full testing regime yesterday

before breakfast: 18.3
2hr later: 22.6
before lunch: 18.5
2hr later: 23.4
before dinner: 16.9
before bed: 19.6

This mornings reading as 18.4

So I have a long way to go!

Slight confusion on how to approach things, the practice are saying to make sure I have carbs with every meal, this site less so. I guess I'm just going to have to see over the next few weeks how things pan out.

When the responses started coming back saying not to worry and that others had been in similar positions, I felt a huge sense of relief. Knowing others had managed to control their diabetes and regain their life meant I could do the same. This wasn't a journey others hadn't travelled and I wasn't alone!

My sleeping throughout the day however was cause for concern. I couldn't go back to work if this was happening so I spoke to Helen over the phone and it was agreed that I should increase my Glic dose slightly and see if that helped. It did and the following week I was back at work.

March 25th - Making progress

Refinement to my diet continued based on the results I was seeing. Every morning I weighed my portion of All Bran. Through a little bit of experimentation I settled on a small brown ham salad sandwich for lunch - something that has been my meal at work every day until just very recently! Meals were carefully selected and many involved cold meats, a small jacket potato with salad followed by a yogurt.

After seeing the dietician I followed the "If I'm hungry, drink first and wait 20 mins" rule. I also stopped watching television in real-time. I recorded everything and fast-forwarded through the adverts so it didn't trigger hungry thoughts with all the food adverts.

Slowly progress to the "green zone" was happening...

I had a lot of what I called "false hypos" as my body adjusted to the lower numbers. I was getting the effects of a hypo, shakes, sweats and hunger whilst being in double digits(!) and I had to feed the "hypo" with a token gesture of food before it would calm down.

By the end of the month I had finally managed to get my first result in range and a celebratory Chinese meal was on the cards!

...but when I saw the effects it did to my bg control I knew a Chinese takeaway was really going to be a naughty treat!

Type 2 training

I was given some type 2 diabetes training, two half day sessions in a group setting called DOTTIE (Doncaster Type Two (Diabetes) Informative Education).

The first was held in a local fire station meeting room and the DSN educators weren't happy that I was testing my blood glucose and tracking the data, or that I had questions about how my numbers were reacting. They quickly closed down the conversation and stopped others on the course asking for meters to learn how food affected them. We were type 2 and the only number we needed to worry about was our HbA1c results, this would be enough to gain an understanding of our "control".

The first session focused on food groups and what a healthy plate looked like and the second was held at the hospital and focused on exercise as well as pointing out advice such as I was allowed cut my own nails - something I didn't even know was a topic of discussion in the world of diabetes!

Did I learn anything useful? No, but I did end up with a bag full of junk leaflets and a simple pedometer to help motivate me into exercise. The pedometer was useless, but I did start using the RunKeeper app on my phone to track my walks.

Hypos, chocolate and diabetic chocolate

By April my blood glucose readings were significantly improved and I realised I needed to consider how I would actually treat a hypo should one occur. Until now my numbers had been high enough not to give this too much thought. My first idea was Lucozade, which I bought on April 4th and (amazingly) needed to use on April 7th - good forward planning!

...but as you can see, another option had also been bought - chocolate!

I was eating three very controlled meals a day, all snacks (healthy or otherwise) had been removed from my diet and I had eaten no chocolate since coming out of hospital. I was happy to "work through" a hypo to have the reward of chocolate - a terrible link to make! I looked forward to hypos because they were the only opportunity I'd allow myself to eat chocolate.

Of course people knew of my love of chocolate and so they tried to help. One friend bought be some very expensive diabetic chocolate. The gesture was in good faith and I accepted it with the kindness it was given, but thankfully Helen had warned me about the perils of "diabetic" products on that first visit and I certainly didn't eat it!

Lucozade didn't cut the mustard either, it was too bulky to carry around and a bottle was too much to drink. Dextrose tablets were easier but not exactly an inspiring choice and so chocolate became my default option to resolve hypos. Dextrose tablets were my last resort, my backup option, should chocolate not be available.

Easter - I had an egg!

When Easter arrived I decided to cut myself some slack. In previous years I'd have happily eaten a number of creme eggs and Easter eggs over the Easter period. This year I had one small chocolate egg and more importantly, rather than eating it in one sitting, I ate it over a week! But eat it I did.

Losing weight

Despite eating a small Easter egg and treating hypos with various chocolate bars, I did manage to lose weight. Each visit to the GP surgery confirmed I was losing around 3kg a month. I put this down to my strict regimen of 40g of cereal in the morning, small ham salad sandwich for lunch and small evening meal with a yogurt pudding - no snacks, just hypo treatments when required... my chocolate medicine! Occassionally when the hunger in the evening was too much I'd either have a couple of Jacobs crackers with cheese or a handful of salted peanuts.

...and obviously chocolate medicine was not looked upon in a favourable light :)

June 15th - First results since hospital

In June I had my first HbA1c review since hospital and the results were good. I posted them online:

First set of results after leaving hospital
Just got back from my first review after leaving hospital at the end of March.

The good news is:
  • my HbA1c is down from 11.8 to 6.4
  • I've lost over 6kgs in weight
  • My own tests before meals are now always in range (even in the mornings)
  • urine tests have come back all clear
The only down side is that although my cholesterol has come down from 7.5 to 6.0, I've been put on 40g of Simvastatin to help get it down to a more normal level... so that's another tablet to add to the collection I already take.

Booked in for another blood check at the end of July (to make sure liver function doesn't go awry apparently) and I've been warned of the potential muscle ache side effects.

So lots of things to be happy about, but I can't help feeling disappointed at the moment.
I was however extremely disappointed. I was doing everything I could to reduce my medication and by the end of the meeting I had more! I posted to clarify the reason why:

Thanks for the positive feedback.

I'm sure I'll get over it, but having put my heart and soul into making a difference I think I have to acknowledge that I can't do this all by myself and medication is going to be a fact of life going forward. As someone who isn't used to taking any pills, not even for headaches, it's a bit of a shock even though deep down I know this... most probably a bit of denial about this has just been popped!

I really thought I'd go in today and be told well done, keep it going, come back in 3 months time and we might be able to reduce your meds. I suppose I got most of that, but I'd much prefer not to need the medication.

June 23rd 2011 - Prescription troubles

So I plodded along and then suddenly, out of the blue, my prescription changed!

I went to collect my repeat prescription today to find that they have halved the normal quota of testing strips to 50 a month. I only had my annual review last week and nothing was mentioned then. I thought the pharmacy had got it wrong. Thankfully I noticed it was a change on the prescription so went back to the doctors and no explanation was given. The woman on the desk has just made a note that 50 strips doesn't cover 3 tests a day and I should see what they do when I next need to order... couldn't see the Doctor or Diabetic Nurse... so I'll find out in 2 weeks time!

Pointed out that it is illegal to drive with a hypo and given I'm going low-ish at the moment around 5pm they could potentially put me in a difficult situation if I can't test if I'm safe to drive or not. They didn't seem that fussed about that.

Hopefully this will all be sorted when I next ring up otherwise I'm going to have to make a bit of a scene... fingers crossed.

Thankfully my normal amount of test strips was reinstated.

August - It's my birthday!

When my birthday came around, there was no victoria sponge cake or chocolate cake to celebrate, but I did switch my usual pudding of yogurt to this...a small celebratory gesture to my birthday.

October - Flu jab

In October I learnt that not only did I get the delights of free prescriptions, but I also was entitled to free flu jabs! It was the first time I'd had one and although the injection itself was painless, the resulting sore arm was annoying for a few days.

Nov 19, 2011 - Thinking about Christmas

Then Christmas approached. I love Christmas and I love Christmas food. The realisation that I wouldn't be having a "normal" Christmas was a low point. I'm usually very careful about the words I use when posting online, but today I used the word 'depressed' and that is not a word I would have normally used. My mood was clearly low.

I went to the supermarket today and I was looking at all the Christmas food.
This is going to be my first Christmas since diagnosis and it's already making me feel depressed!

At diagnosis I said that there would be three days in the year where I didn't worry too much about what I was eating: Easter, Birthday and Christmas.

In reality I had a treat for Easter and my birthday, but I didn't eat anything like what I would "normally" have done.

But Christmas food, wow, I love Christmas cake, Christmas pudding with the white custard, mince pies, the quality street chocolates, gingerbread, the kp salted peanuts, the works!

Apart from the salted peanuts though, I can't see me being able to eat any of these things without significant damage to my bgs.

So how do people deal with Christmas, because in reality it's more than one day you have to deal with and any Christmas food looks lethal in the post-diagnosis world?

There were no magic solutions, it was either eat and be dammed or opt out of the Christmas delights and keep control. I opted out and Christmas was, well, just not Christmas.

I remember finally relenting on New Years Eve and eating a single mini mince pie. I immediately regretted doing so as the taste wasn't worth the amount of carbs it cost me and that was the end of my brief attempt at eating Christmas food.

Jan 14 - Nearly 1 year on...

As I approached my one year anniversary and spurred on by my latest HbA1c result, I shared my thoughts on how I'd managed so far:

I was diagnosed with Type 2 diabetes back in March last year. Back then I was discharged from hospital absolutely petrified, not knowing what I should do and more importantly what I could eat! The only advice I was given was to "eat healthy". Thankfully I have a wonderful (non-diabetic) diabetic nurse at my GPs who I made contact with the following day and she gave me a crash course in life post-diagnosis, gave me a testing kit and sent me on my way.

Then I found this website and forum. At first I freaked out a little bit because I couldn't find anyone posting with numbers as high as mine, but after posting a number of you posted your experiences and provided me with encouragement. After that I didn't feel so alone and at sea. I cant tell you how much that helped me - so thank you all!

I went on the two day course run by the local health authority - didn't find that useful at all and disappointingly found it very patronising. In fact I think the advice I have been given by the NHS has (in general) been terrible and if I followed what they told me to do on eating particularly, I would most probably be in a similar situation to when I was discharged. Thankfully I have educated myself using regular testing before and after meals, working out what I can eat and in what kind of proportions. When I've not been sure about something I have come here and found plenty of ideas and advice.

I don't know if anyone else does this, or indeed if it is medically "correct", but now when I'm looking at new foods, I take a look at the carb content to gauge the overall impact of eating it and the sugar content to see what the "instant hit" element will be... seems to work for me but I'm not endorsing it in any way! But if it is a new food I do test pre- and post- meal so I know if I want to eat it another time whether it really is possible or not.

So, what's changed since March? Well I'm half the man I used to be (lol), my weight has reduced from 122.6kg to 91.5kg - ok, not half but certainly significant - at least I think so (ie. nearly 5 stone in old money).

My H1bac reduced from the 11.9% at diagnosis, to 6.4% in June then 5.7% in September and 5.8% this January - I was expecting this last result to be worse because I have relaxed the rules slightly around my food and it did include the Christmas period... although it really does seem that the long term health risks really do control my short term desire to eat certain foods  I would still love to eat a whole diary milk chocolate bar - maybe one day that dream will go away too.

So, what are my plans for the coming year? Well I plan to get my weight down to 72kg which would get my BMI into the green zone and to maintain my H1bac around the 5.7% range.

Why have I told you all this? Two-fold really...

1. To say thank you to you all. Many of you are a real inspiration to me and you share your knowledge of the condition so freely, it is a real benefit to me and no doubt many others.

and 2. I hope my own small success story may help others in some small way to realise that gaining control is possible and when you do it is the greatest feeling going.

best wishes for the new year and thanks again

One year on

...and when March finally arrived I summarised the challenges I still faced:
If you asked me a year ago I would have told you I had no willpower - and indeed I didn't - not sure I do now... my behaviour is more controlled by fear lol. I used to laugh at the re-sealable giant chocolate buttons packs... I mean who would need that facility??? Now whenever I feel the urge to eat something naughty I think about the possibility of losing my eyesight and that usually does the trick. Usually NOT always. I also don't have anything in the house I know I can't resist, such as a white crusty loaf, cakes, custard etc.

There are a couple of things I really struggle with still, one is when I'm staying in a hotel and go down for breakfast. Given my choice is 40g of a cereal such as bran flakes or a cooked breakfast I find it difficult to justify the price I'm paying and with everything out on show I always want to have more than I should, like having a yogurt with my cereal. I manage it, but always come away grumpy  The other is meals out, particularly if they bring bread before the meal and definitely the fact I can't have a pudding!

I also have a number of "cheats" creeping in which I'm now trying to kick.
One of them is eating salted peanuts or cheese when I'm feeling hungry, particularly when my numbers are in the 6-10 range. They might be good on the carb front, but by every other measure they are a big failure.

The other is eating two chunks of diary milk when my numbers go below 4 since it is the only time I can get away with eating some. I've come across Jordans Country Crisp Chocolate cereal which seems to be better for me in getting a chocolate fix although it is 70% dark chocolate rather than milk chocolate. I'll see how that goes.

So you see, we all have our battles to fight but in the main I feel I'm winning the war - I hope you do too because it really is worth it.

Things seemed to be working out ok, a routine was in place, but things then started to go a bit wrong! The final part of my diagnosis story will explain exactly what went wrong and how I finally got my correct diagnosis.