Sunday, 9 March 2014

Half way to dx

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:
…and like my music, ward life was on repeat too.

“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

You'll know, you'll grow
You'll know, you'll know
You'll know, you'll know
You'll know

You'll know