I started taking Nifedipress MR10 tablets on Friday night. I was told I should start taking them now to ensure there wasn't any adverse reactions before going to Iceland for my holiday.
They are supposed to alleviate my Raynauds symptoms and they have caused a few side effects.
I got a constant headache, it started on the Friday night and (thankfully!) went away on the Sunday. Friday night was a restless night but that too has settled down. Only one side effect remains - the impact on my blood glucose control.
My blood glucose readings have gone in to double digits and it takes a lot of correction doses to bring them back into range.
Having read the PIL (Patient Information Leaflet) that came with the drugs I had a few concerns too.
Despite the questions I asked beforehand about impacts on my diabetes control (which were dismissed) the PIL states that it should be prescribed with special care/not at all if the patient has diabetes. It also mentions that urine tests can be affected - I don't know if that includes ketone testing.
Sunday night I had my usual #hurtyhands or more precisely painful fingers and I decided I should ring my GP in the morning for advice.
Monday morning and on-route to work my Raynauds triggered again and I spent the morning trying to stop the pain. So I rang up with some questions.
My GP surgery has an interesting method of booking appointments. You ring up, explain your issue to the secretary and they decide if the GP will ring you back or not later that day. If the GP then decides you need to come into the surgery they will book you in to see them that day.
After explaining my situation it was agreed that the GP would ring me back.
The GP rang and so I explained the situation again.
I wanted to know if I should wait longer for the drug to take effect, in which case I would increase my insulin doses to deal with the higher readings and give it time to make a difference. If the drug should already be working then I was going to stop taking it and ask what the alternative option suggested by my consultant was (oh to be able to read that letter!).
Unfortunately my GP said (paraphrased) the following:
"Well these are just for when you are on holiday so, if you like, reduce the dose to once a day and when you are on holiday increase it back to twice a day. Don't worry about your blood glucose readings being in double digits because it's only for a couple of weeks"
I re-iterated that the dose wasn't helping with my Rayaunds currently but, if I needed to give them more time to work then I'd work out my insulin doses to better control my blood glucose... and the GP reiterated that I could reduce my dose to one a day until going on holiday, take two from that point and if I felt it wasn't working stop taking them. I tried one more time and then gave up.
I put the phone down not really knowing what to do. I didn't bother asking about the impact on ketone urine tests because I couldn't get a sensible conversation on the first question.
My choices
1. Do as the GP says:
Reduce my current dose to one tablet per day - I'm not sure why. I think maybe my GP believes this will reduce the increase on my blood glucose readings.
Increase my dose back to twice a day whilst on holiday and accept the double digit blood glucose readings that follow - I'm not happy with that idea.
If the drug fails to work then stop taking them and suffer the pain whilst on holiday.
2. Just stop taking them now and suffer the pain whilst on holiday.
3. Carry on taking the current dose in the hope they "kick in" at some point and adjust my insulin dose to bring my blood glucose levels under control. If they do "kick in" then I can enjoy my holiday.
I hate flying solo and if I'm going to be in pain on my holiday then I'm not sure I really want to go!
My frustration is at an all time high and my engagement is at an all time low.
When will I find a GP that actually lets me be involved in my care? Allow me to be involved in the decision making process about me? Allow me to see the information they hold about me and my conditions?
I recently blogged about visiting my new consultant at Sheffield, where a diagnosis of Raynauds was given. A letter explaining the details of this diagnosis and the possible (and recommended) drug therapies available to me was sent to and received by my GP.
I have yet to see this letter and I suspect I never will!
I only know my GP has a copy because I rang on Tuesday to discuss my other constant gripe with them... that of stopping me from ordering a repeat of my insulin, test strips, needles and lancets every three months - you know, those minor things that keep me alive! They "resolved" that issue by setting the system to require a review on, yes you've guessed it, the 18th June 2014!
At the end of the conversation I asked if they'd received the letter from the consultant and, when they said they had, I asked for information on the drug recommendations so I could decide what I wanted to do.
After mulling over the options, speaking with my DSN and an impending visit to Iceland looming (which is currently in the grip of some horrendous snow blizzards) I decided I should consider having the drug as a backup for those days when my hands just hurt that little bit too much.
As I was going to the GP surgery today to pick up my latest prescription, I asked the receptionist if it could be arranged. She looked on the system, pulled up the letter from my consultant, read it all and then suggested the GP should give me a ring next week as they didn't work on Fridays. So it has been agreed the GP will ring me on Tuesday to discuss how I can best make use the drug once it's prescribed. This is good. I will get valuable input from the GP and will have it on my prescription before I travel to Iceland.
What annoys me most is that I'm not allowed to view the recommendations provided by my consultant in the letter to my GP about my condition. The GP and the receptionist are the ones that control this information and they relay what information they chose to me - I feel totally disempowered and, as a result, totally disengaged with the whole process. The end result is I suffer more.
What happened to the "No decision about me, without me" idea?
Surely for that mantra to ring true I should have access to the same information the GP is given?
Wouldn't it be sensible for me to be the recipient of the letter and my GP cc'd on it?
Why can't I be trusted with this information about me? Am I not clever enough to understand it?
Must the only way I access this information be via translation and summary from the GP and their receptionist?
I want to be involved! I want to understand my health and my care! I want to be a part of the decision process! Surely this is a good thing? Better outcomes occur when patients are involved and engaged, so why am I constantly shut out?
I have a new piece of fitness tech - the Garmin Vivofit!
I previously owned the Fitbit One and managed to lose it somewhere between Eurostar security in Paris and boarding the Eurostar train back home! Fitbit were great and replaced it for free but I managed to lose it for a second time whilst shopping at the Meadowhall shopping centre in Sheffield.
I had planned to replace it with the Fitbit Force but, after a number of reports about skin irritation and still no sign of it being released in the UK, my eyes turned to Garmin.
I already have a Garmin Forerunner 220 and heartrate monitor for tracking my hiking/walks and, having been impressed with the quality and reliability of it, Garmin moving into the self tracking space was an interesting development.
As soon as I saw it available to purchase I put my order in and on Wednesday this week it arrived. In the box came the Vivofit, two different sized wristbands, USB ANT+ receiver and some leaflets.
In the box...
What's good about it?
You don't have to recharge the batteries. In theory the batteries should last for over a year before they need replacing - obviously I can't confirm this yet!
You can leave it on your wrist, even when swimming!
It can link with a ANT+ heartrate monitor for additional information
The wristband seems much sturdier than the Fitbit equivalent
You are reminded to get up and move when you've been sat down for too long
It learns your current activity level and then assigns an attainable daily goal - better motivation to hit those targets!
What's not so good?
It doesn't link with MyFitnessPal (for example) to provide calories burnt to calories eaten
It has no silent alarms - I used this feature on the Fitbit One to remind me to take my background insulin
It doesn't have a backlight so you need to make sure you've put it into sleep mode before you switch the lights off
It's doesn't count flights of stairs
..and the terrible - Missing steps!
Today I went to the supermarket and I noticed that not a single step had been recorded as I walked around the store. As soon as I put the trolley back in the trolley park and walked back to the car the step count started to go up! Clearly it wasn't counting my steps due to the angle of the device when pushing the trolley around the shop.
Summary
So far I'm pleased with the purchase. There are clearly some niggles Garmin need to resolve and I'm hoping integration with systems like MyFitnessPal will be available soon and issues on capturing steps like the issues today at the supermarket can all be resolved with software updates.
However if Fitbit manage to resolve the issues
they have with their Force product and finally release it in the UK then I think they'll have a product that's ahead of the game. However Garmin is catching up fast and will certainly give them a good run for their money!
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.
regards,
David
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?
thanks,
David
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
David
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.
David
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.
This blog entry is an attempt to put down a narrative around my journey to a diagnosis of type one diabetes. There is nothing deeper to this than sharing a story – a very long story! So long in fact that I'll be splitting it over three blog posts. I learnt at school that every story should have a beginning, a middle and an end, and so with that in mind this is how these blog posts will be split.
"To begin at the beginning" - Dylan Thomas
Where does my story start? It probably starts a week or so before being hospitalised on the 9th March 2011.
Back then I was big. Very big in fact! I suffered from sleep apnoea, which was treated with a CPAP machine at night, but other than that life was good.
At work the culmination of around two years worth of work was coming to fruition. A large business intelligence release was being implemented that required me to put in some rather long hours. The team delivering this project spanned three continents, so I was getting up at 6:30 and working from around 8am to about 1:30am the following day – every day, including weekends!
It was because of this workload (and a lack of knowledge about diabetes) that most of the warning signs were ignored or missed, until things became extremely critical.
Rationalising the Irrational
Symptom one – Thirst
The first symptom I ignored was thirst. Looking back on it now it was obvious that something was wrong. It was an unbelievable, unquenchable thirst – yet at the time it just didn't register.
I started taking frozen bottles of water to work and as they slowly thawed out throughout the day I had a constant supply of nice cold water to drink - as the pressure of project delivery increased I didn't need to get up from my desk for drinks. Nothing wrong with that surely? Water is good for you, right?
But it didn't stop there. Water wasn't quenching my thirst. I starting drinking even more throughout the day trying to find that one drink that would alleviate the thirst... the one drink my body was craving for. I drank 500ml bottles of Naked green machines – fruit juice is good for you – right? Then it was milk (I never liked drinking milk before and now I'm correctly diagnosed I still don't). One evening I overheard someone in a restaurant ordering a lemonade... suddenly I wanted a lemonade… anything and everything, but nothing satisfied my thirst.
Symptom Two – Toilet
The sudden and immediate need to urinate... that makes sense given I was drinking so much more, yes?
Symptom three – Tiredness
I was so very, very tired. Getting up in the morning was getting harder and harder. I was falling asleep whilst relaxing watching television or playing on my computer. Understandable given I was regularly working 16-18 hour days. Get up, get ready, go to work, come home, eat, do some more work, go to sleep. Being tired would be normal after doing this several days in a row and I’d been doing this for a lot more than that. I just dismissed this warning sign thinking I'll catch up on my sleep once the project was completed.
Symptom four – Sight
Then one morning I woke up and went to put my glasses on, I fumbled dropping them on the floor. Once retrieved I put them on and my vision was still blurred! Cursing under my breath I got my glasses cleaning cloth out and cleaned my glasses (thinking the drop had put greasy smears on my glasses), but that didn't help and I assumed I'd scratched the lenses - I'd need to go and get some new ones from the opticians.
Taking some "me time" away from the project I went to a local shopping centre to see an optician after normal working hours, hoping I could get an immediate appointment. No such luck, they were fully booked. I asked the receptionist to see if my glasses were scratched since I couldn't check them myself... without them I can't see for toffee! They said they were fine but sometimes eyesight can shift and I shouldn't be concerned, just book an appointment. Well I clearly needed new glasses so went to another optician hoping to get an appointment, but no joy. The earliest appointment would be the following week. Having been told this kind of thing happens, I decided to deal with the problem after the project completed. It was annoying, but not disastrous.
I noticed that sometimes I could see better without my glasses and I just muddled along and was sure that this was just another factor contributing to my tiredness.
The wake up call
I'm not sure what happened over the weekend but enough was enough! Something was wrong and I decided I needed to see my doctor - work would have to deal without me for an hour or two.
I saw my GP on Monday and after listening to what I'd shared with him, dipping a test strip in my urine sample and looking at the colour, he told me that he wanted a fasting blood test done and I should come back tomorrow morning so they could take a blood sample. He then asked me what I considered to be the strangest question a GP has ever asked me:
"What are you going to do if your symptoms get worse?"
After getting over the initial surprise of the question I told him I'd come back to see him.
"No, you will go to the hospital!"
I left somewhat bemused with this rare encounter with my GP, quite frankly he was a little bit odd!
The following day I got up, went to the GP surgery and they tried to take a blood sample. They couldn't do it. I was offered the choice of going to the hospital or coming back to the GP surgery the following day. I decided to go to the hospital. More time away from the office but at least it would be over with! Thankfully they managed to obtain a sample from me at the hospital and sent me on my merry way. I was told the results would go to my GP and he would inform me of the result.
Symptom Five – being sick
That night I woke up to be violently sick. It must have been something I'd eaten!
In the morning however things had got worse. I didn't have the strength to stand up and have a shower. My wife went to work and told me to drink lots. I stayed in bed, called work to say I wouldn’t be in and promptly fell asleep.
I woke up in the afternoon, feeling awful.
I rang my wife to tell her I needed to go to the doctors and she decided to come home from work. Before I hung up I asked her to buy me an isotonic drink on the way home – maybe that’s what my body wanted.
On arriving back at the house she handed me an energy drink (she couldn’t find an isotonic one). I drank it straight away and things (unsurprisingly!) got worse. My wife rang the doctors but because it was a Wednesday afternoon they weren't available, they were doing staff training. Instead we were directed to the emergency doctor in Doncaster. After finding out where to go, my wife helped me get dressed and put me in the car.
Emergency Doctor
When we arrived in the car park my wife pointed to a door and told me to go in and announce my arrival as they were expecting me, she would come and find me once she’d parked the car.
I managed to go through the door and then I stopped. There was a sign telling me were to go, but I couldn't understand what it was telling me. I could read it, but I couldn't understand it. The sign was an up arrow (i.e. go straight ahead). All that was going through my head was "If I have to go up the stairs, I can't".
My wife noticed I’d stopped, got out of the car with the engine running, came in and pointed me through the next set of doors where I promptly came to a stop again. Do I go left or right? I couldn’t decide. She pointed me to a receptionist window, told me to go there and went back to the car.
I got to the window and knocked on it. Two members of staff were sitting in the room behind the glass talking to each other. They looked up and then carried on talking. I knocked again. The strength in my body was disappearing and the only way for me to stay at the window was slumped against it, with my head in my arm, resting on the ledge. They did nothing.
When my wife came in and asked me if I’d announced myself, I said no one had responded – she wasn’t happy! The people in the room had left, so she helped me to a chair and went looking for someone to come and help.
Eventually we were called in to the GPs room. I could hardly talk. My mouth was so dry my tongue was sticking to the roof of my mouth. I can’t remember what tests were done, but I do remember the doctor talking to my wife as if I wasn’t in the room.
What he said was a surprise:
“Your husband is very ill. It’s serious, he could die and he needs to go to hospital now.”
Followed by:
“I’m new here, so do you go home and ring 999 or can I ring 999 for you or…?”
In all honesty it was my response that still upsets me now, not what the doctor said.
My response was – nothing. Absolutely nothing. I didn’t fight it, I didn’t demand that he should talk to me, I just didn’t feel anything. It was like I was just a husk. I’d already gone and was viewing these events unfold in front of me like an uninterested observer.
I know I was extremely poorly but I’m still ashamed by my response. I thought I’d fight for my own life but I know now that the reality is, that when the option was put in front of me, I didn’t.
After a short discussion we were told to wait in the reception area whilst he went off to find out what the procedure was.
At this point I just wanted to lie on the floor and go to sleep. In all honesty, the only thing stopping me doing this was that I knew my wife wouldn’t be impressed if I did. I tried everything in my power to stay awake. Being an internet addict I posted something on Facebook…
…but I felt myself slipping away.
Eventually the doctor came back with some paperwork and told us we could go directly to the critical care unit – there would be no need to wait at A&E but, he wasn’t sure which entrance to use or where it was located in the hospital!
The Hospital
My wife decided to drive me there rather than wait for an ambulance and helped me into the car. On arriving at the hospital she left me while she found out if we were in the right location. She returned with a wheelchair because I didn’t have the strength to walk anymore.
Taking me into the hospital a nurse introduced herself and did a finger pick test, let out a loud “ooo!”, apologised and said “You’ve been a little bit naughty not looking after your diabetes haven’t you Mr Cragg!”. The puzzled look must have said it all.
I must apologise for the next bit because it’s all a bit hazy. I have big gaps in my memory. Even now, the bits people have told me, I still don’t remember.
At some point I was taken to a bed and a doctor/consultant came to assess me. Something in the admission notes about my slurred speech meant I had to go through a series of tests as I tried to explain that it was due to my dry mouth. Stand up, walk in a straight line, touch my nose with my finger etc. It was around now (I think) I was told I had type 1 diabetes and given my age it was somewhat unusual. I would “be of interest” – great, just what I wanted to hear at this point in time!
I vaguely remember they had difficultly putting in a cannula (maybe because I was extremely dehydrated? There were numerous attempts …and it hurt!). I must have been hooked up to a sliding scale at this point too.
My Dad had been alerted to my hospital admission by my sister (she'd seen my Facebook post), but he didn’t know which hospital I was in. He’d rung around all the hospitals in the area and none had a record of me being admitted. Eventually he managed to get in contact with my wife and then travelled over to see me. I don’t remember him visiting that night :(
The only memories I have were the moans and groans from other patients in pain.
I do remember my Dad visiting the next day. He came with me when I was taken by wheelchair for my ultrasound scan to check my kidneys and later that day he pushed me to the diabetes ward where I would spend the rest of my time in hospital.
Once on the ward I was put in a 4 bed bay. The person who had been in the location I was placed in was chatting to others on the ward whilst waiting for someone to pick them up. He gave me his remaining credit for the bedside television. I thanked him but knew I wouldn’t be watching TV – I was too tired.
No one told me how the ward worked, I had no idea what to expect, I didn’t even know anyone’s name, but eventually dinner arrived - apparently I was having the dinner ordered by the man who had left earlier! I don’t think I ate much.
If I thought I was going to get any sleep, I was very much mistaken. Every hour a nurse came, wiped and dried my finger, used the most horrendous lancet device (it clearly had just one setting – painful!) and took a blood test. This happened throughout the night, every night and I called them the vampire mites. They never told me what the reading was for, what the reading on the machine was or meant, but they wrote it on a chart and placed it back in the corridor out-of-reach - no sleep for me other than the occasional 15 minute dose! When my condition improved I learnt more about them and some of the nurses were happy to share the numbers with me when asked. I nicknamed one of the nurses “shiney” because she was always happy and that happiness shone out and infected other people around her with that same joy.
So what else do you do when you are too tired to read, too tired to watch TV, too interrupted to go to sleep and attached to a machine that means you were stuck in bed? I listened to music. When I find myself in difficult times I gravitate to a particular song or set of songs and play them constantly on repeat – this was definitely a difficult time! I can’t explain why I find it helpful, but it is. The songs I listen to always reflect my feelings in some way, be in it the words or more usually the music itself.
I listened (in the main) to just four songs whilst on the ward:
“Wake Up” – Morning Obs – Breakfast – Select lunch & dinner – Sit in chair – Bed Made – Lunch – Medications – Dinner – “Lights Out”
Occasionally things happened to disrupt the routine and not always in ways I wanted!
My potassium levels started to drop and so for the rest of my stay I was taking potassium tablets. They put them in water, they fizzed away and they tasted like nothing I’d ever experienced before!
A few failed attempts to take me off the sliding scale…
…and couple of hours later…
Clock watching
You knew when it was the weekend because the ward went quiet. Really quiet! Unnervingly quiet! When Monday morning arrived the flurry of activity was palpable. A consultant walking the ward with entourage in tow making his presence felt by patients and staff alike, firing off clinical decisions as he moved from patient to patient. I became an educational piece for a nervous student and once they'd all gone it felt like a collective sigh of relief was released by everyone involved - routine restored!
During my stay a lot of blood work was done and it always proved difficult to find a vein. Sometimes doctors were called to do it, sometimes I was told to put my hands in a bowel of hot water and wrap my arms in towels to keep them warm before they tried.
One doctor came to take my bloods and when they realised I wasn't "tagged" they had the integrity to raise the issue with the ward nurses. The doctor apologised to me for taking this stance but I respected her for doing so – I wish I could tell her that now but I can’t remember her name. The nurses told her I would be “processed” properly by the following day but it never happened. I was never "tagged" during my stay!
Finally the day came when I was allowed to leave.
I was told that if they completed the remaining tests I would be allowed to go home. Two hours later nothing had happened and I started to get worried. I’d already given up my bed and was sat in the day lounge on the ward waiting for news.
Eventually I was taken for one of my tests - retinography. I was told I would be taken by wheelchair despite being capable of walking and it was useless challenging this decision. The reason I had been waiting over two hours was because they were waiting for a porter to take me to the right location! When I eventually got there they placed some drops in my eyes, handed me a booklet to read whilst the drops did their magic and placed me in the waiting room. The problem I had was that once the drops had been applied I found it very difficult (if not impossible) to read the booklet! All I could easily see was the RNIB logo on the back – not very reassuring! Some time passed and I was taken back into a room were photos of each eye were taken and after waiting for a porter (again!) I was taken back to the ward.
Other bits and bobs quickly followed and I was told I’d be going home. My wife came to collect me and then we both sat in the day room on the ward waiting for pharmacy to deliver the drugs I’d be taking home with me. It turned out the discharge letter had been printed at 1:27pm yet we were still in the hospital after 7pm!
Discharged
Finally I had a whole stack of drugs in my hands and it was time to leave.
At this point I had the sudden realisation that I would be on my own and this caused me to have a little panic. What was I supposed to do? No one had really told me anything about my condition and so I asked the question. The response came back: “You are Type 2. Eat healthy and you’ll be fine” – and that was it, all the advice I was given.
Given how late it was we decided to eat in the hospital canteen and as I shared in a previous blog post, I was scared.
“It was dinnertime when I left the ward. I went, with my wife, down to the hospital canteen and looked at the food on offer – I nearly cried.
Before hospitalisation I had been eating a healthy diet, so what did healthy mean? I looked at everything on offer and I didn’t know what healthy meant anymore. I felt that a wrong decision now could mean I'd be going straight back on to the ward before I'd even left the hospital grounds.
After a long time of indecision I chose a lasagne with salad and then tentatively started to eat. It was the hardest meal I’d ever eaten, not because it was horrible – far from it – it was much better than the food I had on the ward! It was the hardest meal to eat because I was eating it in fear.
I left most of it on the plate claiming I was full. I didn’t want my wife to know the real reason… I was scared.”
So I thought I had type 2 diabetes and I had absolutely no idea what that really meant, but at least I was home!
Postscript
You can read part two of my diagnosis story here: Living as Type 2
Being Type 1 aware could save someones life
and remember... this can affect adults too!
Song Translations
Although you don’t need a translation to the Icelandic songs (I feel that listening to them evokes the emotions), here is my attempt to translate the lyrics for those who are interested:
Andvari (zephyr)
There is no translation, the words are meaningless, the voice is just another instrument in the song.
Svo Hljott (So quietly)
I lean against you, in calm
Everything stood still, and you
You sang to me so quietly
In the moonlight I see you, hunched over
In the moonlight you turn into blue dusk
I thank you for the hope you have given me
I thank you for the hope…
Svefn-g-englar (sleepwalkers [englar = angels])
I am here once more
Inside you
It's so nice being here
But I can't stay for long
I float around in underwater hibernation
In a hotel connected to the electricity board
and nourishing
But the wait makes me uneasy
I kick the fragility away
and I shout - I have to go - help
I explode out and the peace is gone
Bathed in new light
I cry and I cry - disconnected
An unused brain is put on breasts
and is fed by sleep
Sleep angels
Grow Till Tall (this doesn’t really need translating, but you might have difficulty with the accent!)
You'll know, when's time to go on
You'll really want to grow and grow till tall
They all, in the end, will fall
Grow till tall, they all, in the end, will fall
They, in the end, will turn and fall
