Saturday, 5 September 2015

How do you feel about your diabetes?

That was pretty much the question I was asked by a medical design and development company.

Well they asked me quite a few questions actually, they asked me to make a model representing my diabetes and to take some photos of what was important to me in managing my condition too. It was fun and interesting!

It was interesting because despite learning everything I can about my condition, learnt the processes of managing it, I've never really explored about how I actually feel about diabetes itself - a part of my diabetes journey I'd never really explored.

So I took up the offer to share some thoughts. I'm sharing my responses here and maybe it will get you thinking and sharing what diabetes means to you too.

So what where the questions I answered?

What does being T1D mean to you?

It means I have a second full time job. One with no holidays or time off and one were I have to work harder whenever I'm sick. Although it is only a small part of me, it's something I can never forget about.

What is your ritual for managing your condition (if you have one)?

Timings and testing.

My fitbit alarm goes off every day at 11pm and I stop whatever I'm doing to inject my basal insulin.

When hypo I refuse to treat until I have a bg test completed - much to the frustration of everyone around me (and indeed sometimes myself!) who can see I am clearly low and need to treat.

Is there a worst thing about having T1D, and if so what is it?

Dealing with the other health issues generated by it, the list continues to grow!

The hard days such as waking with a high bg - getting out of bed and out to work requires a huge amount of mental effort to overcome the physical impacts while the insulin works its magic.

Is there a best thing about having T1D, and if so what is it?

The people I've met because of it (both in real life and virtually on twitter).

The opportunities I would never had had without it: working with the parliamentary outreach team; speaking at parliament about diabetes education; creating (with the help of others) an online community of patients & HCPs around diabetes. Opportunities that hopefully contribute to making a difference in diabetes care.

How in control do you feel of your diabetes and how do you try to keep in control?

I wouldn't use the word control. I prefer the word manage. Lots of things sit outside of my control such as illness, stress, hormones - but I can try and manage my bg levels. (See my blog The dirty language used in diabetes for more details on the distinction).

I manage as best I can with the tools I've been given. I am currently struggling to maintain a sensible range whilst awaiting a funding decision on an insulin pump that should allow me to manage better.

I try to manage my bg targets by good record keeping, replacing needles and lancets after each use, rotating sites, regular reviews with my DSN and consultant and simplifying things when times get difficult ie. eating lower carb meals, reducing unplanned exercise etc

What about the model?

I'm no artist (as you will see!) but I had great fun using the Sugru modelling glue provided to make my model. You might think he looks cute but diabetes is definitely not cute - far from it!

What name or title would you give the character or object in your model?

Meet ERNIE. Named after the National Savings Premium Bond random number generator (Electronic Random Number Indicator Equipment)

How does your model represent your relationship with T1D?

ERNIE reflects how cheeky and random diabetes can be

Please explain why you have modelled your condition in this way and give details about any specific elements of your creation e.g. colours, shapes, additional props etc. and what they represent?

The blue represents diabetes. It's a part of me, but not all of me and it can't be taken out of me.

The dice represents the bg readings he gives me. Sometimes it can feel like luck (or bad luck) with no logic or reason for the number given (hence his name).

The rule book - the pages are blank because sometimes he seems to like to change the rules, usually just as you feel like you've finally mastered them.

He looks at you with needy eyes and the more you pander to him the more he behaves... you hope!

What do each of your photos represent to you and your condition?

DAFNE and Diaries
Structured education has made a huge difference to me in managing my condition.

Without it I wouldn't have the knowledge to manage a whole range of issues such as sickness, drinking, exercise etc

The diaries (not all shown here obviously!) record every meal, bg test, insulin dose and time injected since starting on insulin and allows me, my DSN and consultant to reflect on what changes would help to improve my bg management.
Without the needles, lancets, test strips, glucose tablets, ketostixs, etc I wouldn't be here - I guess that makes them important, so important an entire cupboard in the kitchen is dedicated to storing them.
Medical requirements fill the cupboards
...and the fridge! No eggs here!
...and of course insulin can be found in the fridge where the eggs should be.

I guess the photos here show how diabetes takes over the kitchen and is a physical impact on not just my life but those who I live with too.
Peer support. Hugely important to me... so much so I created a community with the help of another PWD!

DAFNE can give you the knowledge, HCPs can give you the technical support, peer support gives you the emotional support, removes a sense of loneliness that can come with the condition and helps educate you on new and best practices.
Peer support

Want to see what someone else thinks about diabetes? Diabetes is an arse
What about you? What do you think?