Friday, 31 March 2017

If I Should Have A Daughter

Inspired by the wonderful Sarah Kays' 'If I Should Have A Daughter' ...

I often think about if my child were to be diagnosed with Diabetes, how I/they would cope, how it would feel and ultimately how I could help. Now I know the statistics are pretty slim, less than 5% chance  but it is something that occupies my mind regularly. Those of you who have their eyes open will know I am just 18, and do not have a child, but that does not stop me fantasizing about my future. I got thinking about all of her potential, and what she will be capable of and what I would want her to know. Her life will be valued and precious and exciting. So this is a letter, a metaphorical one perhaps, but I hope to silence my thoughts on the matter.

If I Should Have A Daughter

Darling girl,

Let me start by saying this, you are no less of a person because you have Diabetes. You are no less of a person, just like your Great Granddad was more than his injections, and like your Mother is more than her bruises. You are more than the blood and the lumps. You are more than your averages and the scores on a height and weight chart. You are more than the length of your hospital appointments and the attendance records at school. You are so much more, you are my Daughter and your parents love you very much.

For when you don't have the energy, for when your mentality cannot take anymore..look to your Mother. And when you feel okay about it all, I will teach you to stand on your own two feet, with my hands either side of you. My sweet girl, I will do my upright best to ensure you never feel alone, and that your dark days are always brightened by the sheer fact that if I can do it, you can too. I will hold your hand every step of the way, and dry our tears at every hurdle. I would never wish this condition on anyone, but I hope you can look at your Mother one day and think 'although this is crap, at least we are in it together'.

I promise to provide reassurance when it feels like you can't take anymore. I promise to supply limitless empathy and time when all you need to do is shout about how rubbish you feel. I promise to advocate on your behalf, darling, and to follow your lead in whatever you choose to do.
I promise to have your back, around every twist and turn, whatever the destination. I promise to be your number one fan, at the end of the day- good or bad, high or low, positive or negative.

I vow to never make you feel any different to any other child on that school playground, even if you like that you get to eat in class sometimes. I hope we can make Diabetes fun, and use sticker charts each time a needle scrapes your skin. I hope we can have Mummy-Daughter days where we don't flinch at the beep of a machine, or the tug of tubing or the numbers appearing on that all-to familiar screen. I will ensure you spend your days laughing, smiling and fighting for what you believe in. There is so much goodness in your heart and I don't want you to ever stop sharing that. I will fight for the best care available and encourage you to let your voice be heard. I will explore every avenue with you, every sentence that feels to painful to utter and each prick that feels like it could be the last.

I am not going anywhere sweetheart, not until I can feel your bones swelling with brightness, until I can see your eyes glistening with adventure and watch your mouth dance with anticipation. Your Mother raised a warrior with a heart of gold, a helping hand and a beautiful, beautiful urge to strive.

Don't ever stop trying, sugar-pot. Your love will take you far. I have no doubts about that.

Sunday, 12 March 2017

Busting Misconceptions About Insulin Pumps

Before I started insulin pump therapy, there were certainly worries, queries and misconceptions that I had about insulin pumps which were huge points to consider when it came to the key question 'Do I want an insulin pump?'. The examples below are just some preconceptions I had in my head, which I now know are simply not true.
I am writing this primarily for those who may be contemplating a pump. I hope my brutally honest truths will provide you with reassurance that these little niggles that seem like a big deal right now, wont be a problem in the near future. Your body just needs time to adjust.

Misconception 1. The constant attachment is not something I can deal with and plus, I'll get tangled in the cannula line??
I must admit, the constant attachment was a huge point of consideration for me, and to put it bluntly, I think you've just got to bite your tongue and get on with it. Really, it's a very small compromise, for the amount of accuracy you can get from insulin pump therapy, and in turn, improved quality of life.
In terms of the actual attachment, you'd be surprised how aware your mind will become of where your cannula is, and what length tubing you are using. Although I've had my fair share of the swinging pendulum of dooms*, I find the tubing easy to navigate once I got over the initial 'OMG I CANT MOVE' period!**

*the swinging pendulum of doom is a technical term for when you forget to pick up your insulin pump, and it swings from your cannula site, which is quickly followed (in my case at least) by expletives and short gasps of pain.

** rest be assured, this period in the first few weeks of starting insulin pump therapy is perfectly common, and expected. This will ease with time as you adjust to your new buddy!

Misconception 2. The insulin pump will get in the way and annoy me.
Again, your body will quickly adjust to the whereabouts of your infusion set, and what length tubing you are using. Your subconscious will be aware of just how far you can move without having to grab your pump, although it does take practice.
In terms of storing your pump, it becomes routine in no time at all. I have a body band which I wear on days I'd rather not faff around with where exactly my pump is going to sit all day, or I just tuck it into my waistband or the pocket of my jeans.
There are times I get frustrated, and feel like a dog on a lead, but I am quick to remind myself what a blessing this technology is.

Misconception 3. I will feel healthier from the get-go, an insulin pump is a cure for Diabetes!
I'm afraid this one is simply not true, and is a huge misconception about those 'out of the know', so to speak. Often insulin pump therapy goes beyond the knowledge of those without Diabetes themselves, to a point they think it's so complex it must be a cure. Unfortunately, this is not the case, at all.
Pumps are (arguably) harder work than injections in the initial setting-up-stage as it requires constant monitoring and data analysis to get things right. And like anything related to Type One Diabetes, things are right until they go wrong, and you have to change all of your settings again. That's just life with a chronic condition, there is no cure for this. I know, it sucks.

Misconception 4. I am not comfortable having a physical, and obvious sign of my Diabetes 24/7.
Being a young person who has grown up with Type One her whole life, I never really talked about my Diabetes, until very recently, so the thought of everyone now knowing I had Diabetes, without it being my choice to tell them, was disencouraging. It's not that I was ever ashamed of my condition, but 'telling people' was always an element I had control over, and suddenly that would be taken away from me.
Well I've got good news, a pump is surprisingly discrete, and I know you won't believe me, because everywhere you read it says the same thing, but trust me, for a big, bulky pager-type device, it's easy to hide. The majority of the time it just looks like a phone in my back pocket, and when I've got it in my body band, the only person that can see it is me!

Misconception 5. I'm not cut out for this.
Image result for you get out what you put in quoteA simple answer, but only one you can figure out for yourself, you get out, what you put in.

The same goes for MDI, if you don't inject at the right time and do not calculate the carbs, your blood glucose levels will not be fab. Fact.
You're right, everything you read about how challenging starting on an insulin pump is, is correct and no, that's not what you want to hear, but if I was being dishonest, the only person I'd be fooling is myself.
The hard work is worth it, with anything, give it time and you will watch your dedication follow through.

Monday, 27 February 2017

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. 

Image result for and so the adventure begins

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

Tuesday, 31 January 2017

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!)

Related image
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