Insulin Pump Therapy And Me - Week 1

About two weeks ago, by the time you're reading this, I started insulin pump therapy. Below are notes that I made at the time, when I was aiming to do bi-weekly posts, but it turns out starting on a pump takes a fair share of my energy. Take a read of my mutterings.

5th February, 2017 - The Night Before The Big Day

I feel like I have a great deal of pressure on my shoulders, and the reality that this new treatment may not suit me is all to apparent in my mind. 'What if it's not been worth it? What if I hate it? What if I've wasted everyone's time?' seems to be circulating my mind. A cycle of self doubt, if you will. There is so much uncertainty and I'm not one for gambling, especially when it comes to my life in my hands. These worries have no evidence, just irrational and out of proportion. I guess it's the devil on my shoulder.
I've had a quiet day, ironically with it being my last day on injections, my blood sugars have been perfect, no highs or lows. What I like to think of as 'the calm before the storm'. I opted for a lower carb dinner in hopes for a stable overnight.
Early bedtime, I want to be rested for tomorrow.
I feel calm.
Oddly so.

6th February  - The Big Day

❝I cried because for the first time in my life, I felt genuinely well and capable and healthy..❞

I wake early, tired, but treat a hypo and drag myself out of bed. I shower, run my hand over my stomach and thought this is it, this is the last time I'll do this without a cannula attached to me for a while. I feel an ache of sadness, but only for a second. I am sure this is what I want to do, however many times I've tried to talk myself out of it. I finish getting ready and grab a banana for breakfast whilst taking my last injection. Before I have time to doubt myself further, Mum and I are out the door and on our way to the hospital.

The beautiful sunrise on my way to the hospital

Whilst on our way, Mum kept asking if I was excited, and was looking at my face for some kind of physical reaction. It doesn't feel real and it won't until I can see everything with my own eyes. On our walk to the hospital we walked to a hill that overlooks the city. I've always had a thing for sunrises/sets, so seeing this beautiful mix of blue, purple and orange seemed pretty poignant. It was a new day, a new dawn and I'm feeling...well, anxious.

We arrived at clinic, where I met the other lady starting pump with me (S I'm not sure you wanted to be named, forgive me!), we filled in lots of paperwork, made some small talk, and off we went. The next 4 hours are a bit hazy in my memory if I'm honest, so much information.

By 11am, I had inserted my first cannula, primed my first infusion set, navigated my way around the insulin pump and was officially.. pumping insulin! Off I went on my merry way, trying to soak every snippet of advice like a sponge. For the rest of the day my body was running solely on endorphin's and insulin. I felt so good, every emotion I felt over the past year suddenly became worth it.

God bless the NHS

Mum and I went to a local pub for lunch, where I took my first 'big' bolus dose, the amount of trust you have to put in this small box is absolutely insane, and something that will take a bit of getting used to. We then walked home, my bloods behaving beautifully. I sat down for a grand total of an hour, and spent my evening with my sister, her best-friend and my girlfriend, a celebratory drink was had, and I learnt how to handle alcohol on an insulin pump. Okay, I lied, it didn't go that smoothly, but I kept myself safe and that is all that matters!
I ended the night with an albeit not entirely sober cry, it had been an emotional day and I was so tired. 

And so the adventure begins, the next few days were glorious, I was the picture of health and boy did it feel good.
My blood glucose levels were perfectly in range as I still had basal insulin in my system. I cried because for the first time in my life, I felt genuinely well and capable and healthy. As opposed to being exhausted and anxious about my blood glucose levels all the time. That feeling I felt on those initial days is my driving force.

Over the next few months I will be fine-tuning my rates, factors and ratios in hopes to re-gain control of my bloods. I've had a fair few wobbles, and my bloods are running extremely high whilst I work with my nurses and consultants to get things right, but I am okay. I am excited for where this journey will take me, and how good I will feel as a result of my hard work and resilience.

My insulin pump and I, a work in progress

My Journey To Insulin Pump Therapy

So when I titled this piece 'My Journey', I wasn't just being sensationalist, although there is an element of that let's not lie, but it's taken me a full year to gain access to an insulin pump, so it feels pretty monumental to finally be here. And by here, I mean 1 week until I start using a pump...(eek!)

My chosen insulin pump (Accu Chek Spirit Combo) on the right,
and my blood glucose meter on the left which acts as a
 remote and connects to the pump via Bluetooth

Firstly, for those of you who don't know, an insulin pump is a small, mobile phone sized device that releases insulin throughout the day. The insulin is provided via a flexible tube (cannula) which is inserted under the skin and has to be changed every 2-3 days. Essentially, it's just a different way to administer insulin for those of us with a dodgy pancreas.

Let's take a look at the steps I have taken to get to this point.

28th February 2016 / Decision Time - Shortly after getting involved in the Diabetes Online Community (DOC), I found myself more accepting of the idea of having a pump where I'd previously been psychologically held back by the thought of constant attachment. I researched and decided the next step in my care; I wanted an insulin pump. At this point I was still under the care of my paediatric team,  I was 17, turning 18 and was going to transition to adult services. So I tried to be clever and did my outright best to get a pump from paediatrics, as I'd heard funding was limited in adults, I was told that I was of low priority for a pump; I don't have any complications and my control is neither extremes, amazing or poor so I should wait until I transition. Deep breath, this road was looking to be longer than I'd hoped.

First infusion set (was very exciting at the time)

10th March / Small Steps -  As a compromise and during my last few months with paeds, I was able to try out my first infusion set which was a huge step for me (see photo.) I spent months chasing my DSN and we decided I would transition early in hopes to get an insulin pump. Between March and June I was waiting to move to adult services, not much I could do here to speed up pump process.

6th June / Taking Charge- I referred myself into the adults 'pump clinic' and had my first appointment with my new team, I had now 'transitioned' my care from one team to another, from a set of HCPs who had known me since I was 4 years old. We agreed at this appointment that I would need to attend an education course prior to starting insulin pump therapy (IPT). The ball was finally rolling and I felt pretty awesome, my motivation was at an all time high as I took the reigns of my own healthcare.

June-October / Request For Support - This is where things got a little complicated, to cut a long story short, because I moved to adult services without the transition service, I got lost in the system and fell under the radar of my adult team. I lost contact and spent the best part of 3 months in diabetic burnout. I was desperate for help and watched any glycemic control I thought I had, collapse. I lost a lot of confidence, any support I had was online, where my blog was thriving, but it was all so fake. It felt wrong to advise others, I needed to regain control of my own life. So between moments of motivation, I mustered the energy to compose a few emails to the adult clinic. Throughout this period I received letters to say that there was progress in terms of getting a place on an education course, but nothing seemed to be moving forward. With the support, encouragement and confidence from those closest to me, I got back in contact with the team, and was introduced to the adolescent specialists. I spent a while re-building any trust I once had, and have solidified my faith in their care since.

8th November / Support Provided - Here is where my hard work begins to pay off, I got an email late one Friday evening saying there had been a dropout in the Nov run of the education course, the only hurdle between me and pump therapy. So I jumped at the chance, the next 5 weeks were spent in weekly sessions learning how to adjust my insulin doses. Albeit information I had heard before, but after being diagnosed as a toddler it was refreshing to hear it all first-hand and see how advice has changed since 2002. I cannot fault my time completing the course, the information I learnt is simply invaluable. There is something to be said for peer-support just 5 minutes from home.

Practising with infusion sets ready for pump start

December / Experiments- Now I had completed the course, I knew the next step was to take control and be proactive, so I decided to jump ahead and spent the first half of the month testing out different infusion sets. I did so in the hopes I can reduce my errors once I begin pumping and to get used to the physical attachment of a wire hanging from my body all the time. In these two weeks I changed my cannula every 3 days, like I would have to do if I were pumping insulin. It was fun, shall we say, you can read all about my challenges in a post I wrote here.

Filling out my 'Pump Goals' prior to an appointment

2nd January 2017 / Paperwork - After a delay in appointments and a few emails back and fourth, I had my first 'pump appointment', and established my goals for insulin pump therapy. Since the start of January I have had weekly appointments with a member of the pump team to fine tune my basal/bolus rates so when I start pump we can be fairly confident with the initial settings. I have to keep a diary of food/activity each day, and I will be wearing Freestyle Libre sensors over the next month.

I've fantasised over the idea of an insulin pump since Feb last year, and now it's real, my official pump start day is the 6th February!! It has required a lot of chasing on my part, and a huge element of being a proactive patient, which isn't for everybody, all the time - why do you think I spent 3 months in burnout?! Once I start pump I have a 6 month trial period, which consists of intense appointments. So it's going to be exhausting but absolutely worth it.

It has been a hell of a ride, and at times I've thought that it's not been not worth it, but we got there in the end. To say I am terrified to start IPT would be an understatement, I have been told that starting pump is like being diagnosed all over again, but I feel confident that I have the best support network around me. There's only three words to end this post, bring it on.

Amber xx

Testing Testing, 1, 2, 3...

****Disclaimer- If you too feel this would be beneficial to you please consult your health care professionals so you can count on solid advice and help if anything does go wrong. As always, this is in no way intended to be medical advice, I am not qualified to offer anything but my own experience.****

Over the past two weeks I have conducted some what of a self-experiment and have been trying out infusion sets for when I start insulin pump therapy (IPT) in the new year. I have not been attached to a pump but simply the cannula to get into the habit of changing it every 3 days.

Can we also abolish the 'diabetes=overweight' stereotype,
it gets boring after a while, ta.

Now you may be asking 'Why you hell would you do that', have all the downsides of IPT and no advantages. Well the honest answer is because I am nervous. I want to prepare myself as much as I can for what will be a huge lifestyle change.
I would rather make mistakes with infusion sets when I don't have my lifeline plugged in at the other end.
In fact the longer I spend trialing sets the more my passion grows about this being a standard procedure.

The prospect of attachment and my reaction to the Freestyle Libre has made me cautious of any new diabetes technology I want to explore. This preliminary test is an attempt to preserve my mental health and most importantly to reassure myself that I will be able to cope with the constant attatchment. I can appriciate it seems a bit over the top, I just want to give IPT everything I've got when the time is right.

Failed infusion set - fun and games

Now I was hesitant about writing this post, because I must admit I've not had the best luck with these sets! Set one was fine as I was in the company of other PWD, set two was a painful little bugger (see photo), when I removed it after just 6 hours of discomfort I found the tube was bent. Set 3 was comfortable but it was a bleeder, and to be honest I'd rather not have my shower look like I've just committed a murder! I know I've made that out to sound comical, but when you've got no idea what is normal and what's not, it becomes pretty daunting. It was only through peer support that I was able to relax about said issues and know that it was through no fault of my own.

This was the first time I felt scared about IPT- genuine fear of the unknown. I know there's a lot I'm yet to learn, and that I will pick up lessons along the way, but for now I am making baby steps tentatively.

It was the first time I understood that my life will be down to this technology, and that's a scary but amazing prospect. As I run my hand over my top I reassure myself that one day this will feel normal. One day this odd piece of wire will feel as natural to me as the shoes upon my feet.
One day this little device, as well as an insulin pump, will be keeping me alive, and that will feel okay. For now, it's a little strange.

Thanks for reading,

Amber xx