making Diabetes work

This is a tricky blog to start.

I try to be very positive about living with Type 1 Diabetes, but sometimes it's a real struggle, because it can be difficult. Sometimes whatever you do, doesn't work.

Work. This is what I have been struggling with most over the last few years. The working 9-5 that good ol' Dolly likes to sing about. It has seriously taken it's toll on my Diabetes. 

My T1 doesn't like stress. It reacts badly. My liver pumps of glucose like i'm drowning in the Atlantic struggling to stay afloat. And to be honest, that's what work has felt like at times.

I have been working as a Project Manager looking after graphics, and packaging for retailers. It's highly stressful, deadline driven, seat of your pants kind of work; Staying late to hit deadlines, commuting long hours, eating lunch at your desk, not testing blood sugars because you're in big corporate client meetings, hypo's on the tube, the bus, the walk home, trying to smile and be nice to people when you blood sugars are over 15mmol, filling in spreadsheets and forgetting the last half hour because you're hyper, feeling tired all the time!

So I should quit my job and find a new one, right? Ok, so I did that... twice. Same thing happened. Trying to manage this on Multiple Daily Injections of Humalog and Lantus insulin, was impossible for me. I tried, my Diabetes Specialist Nurse and I battled for 3 years tweaking ratios, changing Lantus basel rates. Things often improved for a week or two, and then would return to chaotic numbers:

Here's my chart from after Christmas - shockingly, this was an improvement (personally, I like how a Hypo sneaked in there amongst all the Hypers!). Surprising to know that I managed to achieve an Hba1c of 7.2% in February with numbers like this. It just goes to show how misleading Hba1c numbers really can be!

the working dead

At work in February, myself and my employers came to a mutual agreement that my health came first. I was moving house (also stressful), my commute was increasing, and this was just not manageable. I was so so tired, and so upset every day. I felt like the working dead, but with too many crazy emotions running wild, and a confidence level somewhere 20,000 leagues under the sea.

I was able to keep it fairly under control during work hours, but was falling to pieces outside of work. This was taking it's toll on my family and friends, my social life and ultimately my future. Having my eyesight, feelings in my fingers and toes, and avoiding heart disease, kidney failure and other long term diabetes complications seemed like a good idea to me! So I gave work the elbow!!! 

I was lucky enough to be in a position where I could afford to take same time off work, try to get things under better control with the support of my friends, my family, my Consultant and Diabetes Specialist Nurse. I was already on the list for trialling an insulin pump. I hoped that being able to control the Basel rates throughout the day would get my blood sugars in line. Using an insulin pump means that you can fine tune the basel rate, rather than having one flat does of Lantus to last 24hrs. My body (and my Diabetes) wanted more Basel insulin in the morning, during working hours, but then a lot less in the late afternoon and evening, which Lantus could not achieve. Here's my chart average for May - a bit good, a bit bad, but an improvement on before:

I trialled my Medtronic Paradigm Veo in June after being at home 'not currently working' for 3 months. It was great. Right for the get go. I love the flexibility of the basel rate, the temporary basel rates I can quickly and easily adjust if I suddenly find myself in an unusually stressful environment are just fantastic.

My insulin sensitivity has come right down, I can now roughly feel my blood glucose rising above 10mmol. I've been able to cope much better with the recent heatwave interfering with how quickly my body absorbs insulin. It's just great.

Then I had a call, someone found my CV online, and asked if I'd be interested in freelancing as a Project Manager? After some discussion with my family, I said yes. I felt more confident in myself, more balanced on the diabetes front, more in control and ready for something new.

BG Chart or tube map?

Last week I started freelancing at a lovely firm in the City. So far I am really enjoying it. I'm feeling confident and getting great feedback on the work I am doing. My blood sugars have been a little wobbly due to the recent heatwave (god it's hot on the Tube!), but they seem to be getting there, and I'm really pleased.

I'll let you know how I get on with them :) My Hba1c is due in mid September - keep your fingers crossed!

My Diabetes Family History, and other stories

My headlines this week:

1. I've had a pump for almost a month
2. I went to visit my Grandma
3. I met some other Type 1's at Alton Towers

1. I've had a pump for almost a month

Hello there, so I've had a pump for almost a month. It's great, I love it. Easier than injections that's for sure. Last week my own machine arrived, so I set it up all by myself by copying all the info over from the one we set up at the hospital. All works fine so far! 

Got a lovely new BG meter the Bayer Contour Link which 'Talks' to my Medtronic Paradigm Veo pump - so cool. My friend asked if it's like I'm Iron Man, and I suppose I kind of am!

2. I went to visit my Grandma

Last week, I went to visit my Grandma in Derbyshire. She lives about 6 miles away from Alton Towers (but more on that later...). She was showing me some photos of her recent trip to visit family in Germany, where she is originally from. I asked her about our family history of Type 1 Diabetes.

As far as I know, we currently have four people with Type 1 Diabetes within our family, however, three of these are in the German part of our family, and I am the only one here in the UK. I've made a family tree so you can see where we all fit in. I've marked the people with Type 1 in bold, with little blue circles after their name:

My mum's cousin Gerthienrich was the first person in our family diagnosed with Type 1 Diabetes. This was in Germany before the Second World War, when he was 2 years old. My Grandma told me about how it was really difficult to get insulin for him during the war, and you'd never know if it would be the same kind of insulin that you had before. These days if we want to know our blood glucose level, we prick our fingers and a machine tells us within 5 seconds, but back then, she said they had to collect urine over 24 hrs and then boil it up to test the glucose level. All Gertheinrich's food was carefully measured and controlled, and my Grandma said he used to get very upset when he was hungry, but had already finished his food and wasn't allowed any morel.

It makes me very glad that I was diagnosed in more recent times. Gertheinrich's younger half brother Christian also has Type 1 Diabetes. The only son of my great Aunt not to have Type 1 is Ludwig; he has six children, one of whom was diagnosed with Type 1 a few years ago, in his early twenties.

I'm the only one on the British side of the family with Type 1. I guess we shall have to wait for the next generation of our family to see if there will be any more. My Grandma said that her grandfather (my great great grandfather) died suddenly, just before my great grandfather was born. We suspect he may have had Type 1 Diabetes as well, but back then it was not diagnosed or possibly even recognised. There was no medication for it either, as insulin had not yet been discovered.

3. I met some other Type 1's at Alton Towers

The reason I'd gone to stay with my Grandma was that she lives really close to Alton Towers, and James and I were off to meet up with fellow Twitterati @OceanTragic (Kev) and @Type1dadDerekck (Derek) and their families. It's not often I get to spend much time with fellow T1's, so I jumped at the chance to go to Alton Towers and meet Amy and Chloe.

Amy had just got her pump and was getting used to it like me. She has a great Spi Belt to keep it in, which is funky pink camo colours! Chloe is waiting for her pump which will be in the next few months hopefully. It was great to stop and check blood sugar levels in synchronisation, and estimate carbs collectively :) After a misjudged estimation of how many carbs there are in doughnuts, Amy and I then had synchronised hypos! But were soon back up and running again ready for the next ride!

Kev had discovered that if you have a medical condition such as Type 1 Diabetes, you can go to Guest Services at Alton Towers with a letter form your hospital, and be given a red wristband and a ride pass which means you can jump all the queues for the rides! Finally, a plus side to having Diabetes!!! 

Queue times with red rider wristband, on a warm sunny Saturday in June:

Oblivion: 5 minutes

Nemesis: 5 minutes

Air: 10 minutes

Thirteen: 5 minutes

You get the idea - they mark your card usually with 30 mins or an hour until you can go on the next big ride in the park, but you need that time to get your stomach back in place! You have to sit in the designated 'red rider' seats usually at the back of the ride with your 'carer' - this is so in case of an emergency, they can find you first and get you off the ride, like if it gets stuck... which the new 13 loop roller coaster 'The Smiler' did... which Chloe on board... and then for Amy... who'd removed her pump.

If you have an insulin pump, you need to remove it before going on any big fancy roller-coasters, because of the magnets used to keep the carts on the tracker, and the inevitable G force of being thrown in a million directions really fast. Most of the rides have luggage drop of points just before you get on, so it's not much of a problem to be disconnected for a couple of minutes whilst you're riding the roller-coaster. Unless it stops with you on like 'The Smiler'. (\/ this isn't them by the way!)

It had a few problems earlier in the day, but with a normal queue length of about 3 hours, we all used out red wristbands to go to the front of the queue. They only let one red rider per go on the ride, so I went first and we were all fine (apart from feeling a bit dazed and confused afterwards from the 13 loops!). I collected my bag, and reattached my pump, but then as we waited to see the next ride go, it stopped. Chloe was on board, but her Dad Derek was with us. A little frightening, but Chloe is on MDI so would be fine for a while. The it started again, phew!

Kev and Amy and their family were on the next ride after Chloe. Amy had disconnected her pump to go on the ride, and then their carriage stopped just as it was about to climb up a big slope. It was on an angle, and must have felt awful being trapped on there. Luckily after a few minutes, the ride started again and everyone got off safe and sound, although with a few tears and a bit of a scare. Thankfully, if things had been worse, the red wristbands and designated seating on the rides would have had us prioritised.

If you'd like to know more about Kev and Amy take a look at their blog Circles of Blue

And you can read about Derek and Chloeon their blog here: Living with a Type 1 Daughter