Monday, 25 August 2014

Diabetes - We speak the language










It’s bitter sweet, isn’t it? On one hand, no one wants Type 1 diabetes (or any type for that matter) to come knocking at their door. No one wants a life-time of insulin injections, pump set changes, finger pricks and carbohydrate counting. Within the diabetes online community, I often hear people being welcomed into ‘the group that no one wanted to join, but everyone is glad to be in.’

Why is that? Because on the other hand, the illness itself can be incredibly motivating and, for many, can provide a sense of empowerment. Those with diabetes develop will-power; they develop knowledge about the human body, they exercise their brain 24/7 by staying one step ahead and thinking like a pancreas, they exercise their bodies and treat them well, they become mini mathematicians through carb counting, measuring blood glucose levels, calculating correction and bolus doses… the list goes on and shows that, in fact, having Type 1 diabetes can make us incredibly determined, empathetic and bring purpose to our lives. Type 1 diabetes, through its bad points, allows us to create our own unique skill-set.


This brings me to talk about the incredible weekend that I’ve just spent with 132 youngsters, from 12 countries, who all have Type 1 diabetes. The cause… To provide them with the opportunity to meet other people with diabetes from all over the world, to share stories, experiences, expertise and to support each other throughout a Junior World Cup. The event was organised by Medtronic, showing that we all speak the universal language of diabetes. 




Looking at the players you wouldn't have a clue that they had diabetes and honestly, 99% of the time I forgot that they did! Leaving the airport with the Spanish team, the kids were beyond excited as they danced, laughed, showed off a few moves that they would be saving for the pitch the next day. It wasn't until I saw a tiny piece of pump tubing poking from underneath of one of their tracksuits that I remembered why I was actually there. Why we were all there. It was diabetes that had bought us all together, however, as someone who has diabetes herself, the best part was seeing them getting on with things and not letting their diabetes stop them. It really was hugely satisfying to see how little their diabetes bothered them and that the most important thing at that time was getting together with their new friends. 

This year's UK team were all insulin pump users. The aim of this was to raise awareness about insulin pump technology and what it can provide for young children and teens. It was interesting for me to watch the team, and their accompanying parents, throughout the weekend, noting that the kids were pretty much in control of their own pumps, their testing and treating highs and low. And rightly so! This technology (especially when linked with a CGM) should allow for parents to relax a little, give them the confidence they need when their kids are off doing their own thing and provide them with some comfort that the kids can safely manage the technology. Of course, the worry will always be there, but one of the aims of an insulin pump is to alleviate some of that. For the kids I could see that the pumps promoted independence with their diabetes, something that I imagine was very important for them as many were heading to secondary school within the next few weeks! 

Not only that but for growing guys and girls; flexibility seemed to be key in their lives!


"I can now eat what I want, when I want."


"I usually take it off for football matches and check at half time."


"The pump allows for my sugars to be better controlled before, during and immediately after sport."


"The CGM lets me watch my sugars closely before and after sport as well as when I am playing."




The bonds that were made looked tight. The team were just that - a team, and despite only meeting each other on the weekend they had a couple of things in common! Diabetes, football and instagram were the main topics of choice. I was even persuaded to re-start my instagram account as I wouldn't be "cool" unless I used it. It was evident that the team had two main goals that weekend, having fun and learning! That's what the event was all about and the UK team certainly did that from what I saw.  

Charging up and down the pitch, the kids took it all in their stride. Testing before the match, playing for 10 minutes, testing and treating a hypo (if necessary) during half time, then getting straight back to it. "I'm 8.8!" I heard someone shout, "Me too!" said someone else as they shared their blood glucose levels after a match. Looking around me other teams were doing the same. Some comparing pumps, pens, numbers, football boots, blood glucose meters... Though I couldn't understand what they were saying it didn't matter. I knew that when I saw someone handing their friend a bottle of juice it was because they were hypo. 




Diabetes and support doesn't always need to be heard to be understood, but it does needs to be seen. Parents will know, people with diabetes will know... Often you just have to look at someone with diabetes to know exactly what they need. I think that's a really important lesson when it comes to gaining more of an insight into our condition and definitely something that this event proved. Type 1 diabetes goes far beyond what has been written in a book or a leaflet, what is delivered in lectures or during sales pitches, and it goes far beyond the 15 minute appointments that we recieve. The condition is personal to each of us, to each of the kids that I saw on the weekend, and can't be treated with a 'one size fits all' approach. Flexibility and understanding are key in the self management of diabetes, whether that's gained through sharing experiences, tips, advice or just sitting back and listening to others. More importantly though, learning through real experiences, through seeing, not just hearing, is what it's all about and I believe this is what the event showed on the weekend, if that was the aim or not. 

So well done to the teams, you've taught me, you've taught your team mates and you've taught many people that diabetes is a language that can be understood by everyone. 


Ninjabetic x 



The UK team - Winners of the Fair Play award



For more information about Medtronic and the products the have please visit their website here - http://www.medtronic-diabetes.co.uk/ 

For information about how you can be a part of the Junior World Cup 2016 please 'like' the Junior Cup Diabetes facebook page or 'follow' them on twitter.

To view more pictures and videos of the event take a look at my facebook page, Ninjabetics, and twitter account @ninjabetic1




Thursday, 21 August 2014

A smile goes a long way



In comparison with my other blogs this will short and sweet (no pun intended!)… It’s just something that I wanted to note down because saying thank you to someone goes a long way… but saying it in a blog means it goes even further.

I’m the first to admit that when it comes to my care and treatment, if something goes wrong, if something isn’t quite up to scratch, I don’t tend to sit and dwell on it. I openly talk about my health care online; often to see if something is the norm, to gain different perspectives, to let the professionals learn from my experiences…

So today I thought I’d share an experience that helped me gain a little perspective, possibly even changed my mind about the decisions I have made recently to move my care from Secondary to Primary. That experience was down to the reception staff at my diabetes clinic.

Getting out of my car I knew that I would only need help from the receptionists today and I knew, from experience, that I would get a first class service from them. As expected, I was greeted with a smile and a kind welcome, no job was too much despite a queue behind me of people wanting to book appointments, my enquiry was dealt with quickly and professionally and I was thanked (why was I thanked?) more than once for coming in.

Looking back at other health care settings I often leave feeling frustrated and angry (once or twice in tears!) at the lack of help and sometimes lack people skills that I’ve experienced, feeling that I'm just getting in the way. On occasions I've been left without insulin, test strips or refused appointments during an emergency... Also, we all know that a clinical environment isn’t the most relaxing and welcoming setting. Often they are cold, quiet and sterile looking rooms that are in desperate need of a new coat of paint. Often people feel anxious about going to see a health care professional, worried about getting test results or having to discuss problems that have been affecting them… Even so, a warm welcome is all it takes to make the visit a little better for the patients. 

If impressions are made within the first 5 seconds of meeting someone, I’d definitely say that the impression I get from the Queen Alexandra Hospital “front of house” diabetes staff is right up there! This goes far beyond the reception desk, and I feel that the happy, kind and caring nature of the reception staff must rub off onto others who work there. It certainly rubs off onto me!

So credit where credit is due… well done and thank you – Keep up the great work!



Saturday, 2 August 2014

Basal Check Time



This is a joint blog between myself and Pete Davies (@swelldiabetes), a Diabetes and Endocrine Consultant from Sandwell. Pete is always keen to engage with patients and listen to their ideas about how diabetes care and self-management can improve. He wants to find ways to make basal testing easier and more enjoyable for people, so we gathered our thoughts on the subject and put them on paper. 

What Pete and I are hoping to do is to set up a live basal test via social media. We don't have the logistics just yet, but we do have a few ideas in the pipeline, so watch this space.

We would appreciate it if you could comment at the bottom of this blog (or on facebook/twitter) with the 1 thing you find difficult about basal testing. It'll give us some ideas on how we can make basal testing easier for you!

We hope you enjoy our blog :) 



Pete's blog

Good ideas can come at any time & I feel at my most creative when I am with groups of PWD (People With Diabetes). Last week we had a DAFNE course for insulin pump users. One of the games us educators like to play is to tot-up the number of years of D experience in the room. 

6 PWD. 
136 years experience of living with diabetes.
Humbling.

We talked about loads of things & they had plenty of questions. These days I always take the opportunity to do a gentle sales pitch on social media as a means for getting on-going support, practical and emotional too. The reception can be mixed, this group seemed quite open to the idea. One person was already using Twitter, two others use Facebook. None of them presently use it to get support with their diabetes.

HCPs a have a strong belief that regular basal checks help PWD keep their pump therapy on course. At the same time, realists accept that it's rather like those stretches we know we should do after exercise, those five pieces of fruit and vegetables we know we should eat each day... It all sounds so easy and nice, in principle…

During our conversation, my sales pitch about Twitter and about the need to promote easier basal checks seemed to meld together into a Dragon's Den pitch:
Group Twitter chats could be just what is needed to help support PWD to complete their basal checks and to make the right to changes to their basal insulin doses when they are armed with good information.

So PWD on #ourD & #doc, I'm looking for £100,000 for a 30% stake my business... 

What's that you say? Have I registered my intellectual property??  


Pete (@swelldiabetes) 




My blog

As Pete mentioned, basal tests are something that people with diabetes *should* do, but sometimes... don't. We each have our reasons for why we do or don't chose to follow the 'rules' or advice that our HCPs (Health Care Professionals) give us, and of course we should all be free to make our own decisions, but perhaps there is a way that basal testing could be easier? Maybe even fun? Would that encourage people to basal test for our own benefit AND keep our HCPs happy?

I can count on both hands the amount of times I've done basal testing, and since starting on the  pump I've really slacked doing it only once in the last year. Some of my reasons for why I haven't done as much as I perhaps should have are:

Timing - Is there ever a good time to basal test? I'm constantly on the go, whether I'm at Uni, studying in my own time, working, looking after my patients on placement etc, I often find that my mind is on other things. It's not that my health isn't as important, but a lot of the time I need to pay full attention to what I'm doing and give it all the energy I have. I like to have a quiet day to do basal testing and that in itself is a very rare thing for me.

Hypos - They nearly always seem to crop up when basal testing is about to commence! Obviously if a hypo occurs during a basal test this indicates that my background insulin may be too high and allows for changes to be made, but 9/10 if a hypo's coming it comes before the test starts. Then, once the hypo has been treated we have to wait again until we can start the basal test again... what if there isn't time to do it again?!

Food - I don't want to be hungry for 4-6 hours! It's as simple as that. If I do basal tests I tend to do it on a day off and days off are for relaxing, enjoying the things that I can't enjoy whilst I'm at work/Uni/placement and charging around at 100mph. Abstaining from food is the last thing I want to do.

Rules - What are they exactly? One HCP will tell me one thing, another will tell me something different. Can we eat zero carb food whilst basal testing? How long do we wait after a hypo to start the basal test again? Which blood glucose level should we start the basal test at? What happens if I happen to be rushing around that morning/afternoon/evening and it affects my levels? So many questions... and so many different answers.





Sunday, 20 July 2014

Show me your pump






#showmeyourpump is making the news after Sierra Sandison proudly strutted her stuff and showed off her insulin pump during the Miss Idaho competition. Now people with diabetes all over the world are doing the same and posting pictures of themselves wearing their insulin pumps on facebook, twitter, instagram and more. Not only is the hashtag going viral, but at the same time it's raising awareness for Type 1 diabetes, inspiring others to feel more confident with their insulin pumps, and encouraging people to try insulin pump therapy. 

I'm not one to be shy about getting my pump out and have been posting pictures of my beloved pump (Iain) on twitter and facebook from day one! Nor should I be shy about it... In fact, I love any opportunity to show it off, give a demonstration and answer any questions people have. Some people may think it's strange, but I'm proud to have a portable pancreas - It's far better than my original pancreas. It's an expensive bit of kit that many people want but aren't able to have, for lots of reasons, and it has given me the chance to have more freedom when it comes to living life with diabetes. 

So here are a few pictures from my facebook page of me, proudly showing off my pump!






Wednesday, 9 July 2014

Back to Basics



The 15 healthcare essentials… a check list for all patients with diabetes (devised by Diabetes UK) to show them what they should expect, in terms of basic care, from the HCPs (health care professionals) they see.
So what are the 15 healthcare essentials?
My monthly column for The Diabetes Times

Thursday, 26 June 2014

D-eye-abetes



A few months ago, at the end of a blog, I said that I had some good news. I was hoping to write about it (and celebrate it) much sooner but sadly almost 4 months passed before I had my news confirmed in writing.

In 2012 a consultant from my local eye department said these words to me; "You have stage four diabetic retinopathy. It's very likely that you'll lose your sight within the next 12 months."

I was beyond devastated. I was so scared that I couldn't reply or ask him any questions. I couldn't absorb the diagnosis I'd been given or make sense of it in my mind. The consultant didn't seem to understand the impact if his words, spoken in a small cubical with only a with a brightly coloured curtain separating us from other patients. He asked me to sign a consent form and then left me sitting alone to prepare for an hour long session of laser treatment on my eyes. That was the first time we met... I didn't even know his name.

In the months after this diagnosis I began to turn my diabetes around. Yes, this diagnosis was ultimately due to me neglecting my diabetes. I'd been warned of the complications that could occur if I didn't take care of myself, but I hadn't believed they would happen. I'd managed to slip through the NHS system roughly a year after my diagnosis and up until 2012 this had suited me just fine. I had no interest in attending diabetes appointments, they were incredibly generic and I felt that I was nothing more than a box that needed ticking twice a year.

But I was in trouble. Serious trouble that I couldn't turn around on my own. I refused to accept that I would lose my sight... I refused to accept that it was too late for me. The moment the consultant had spoken those words I truly began to appreciate what I had always taken for granted - my sight. I knew that I needed to fight incredibly hard to ensure I could beat this diagnosis, and that's what I did. My vision took a turn for the worst soon after the diagnosis, it was a period of time that took a lot of getting used to. I had to leave my job, temporarily, as I couldn't see my computer screen well enough. I couldn't drive, couldn't watch TV, and couldn’t leave the house without having someone with me. I lost a lot of my independence. 

It's true what they say... You don't know what you have until it's gone. The amount of treatment I'd been having for my eyes was certainly taking its toll on my vision but I knew that ultimately it was the best chance I had to stop them from deteriorating. Bright lights and dark rooms took a very long time for my eyes to adjust to, but after I'd had a lot of laser treatment, injections and operations, things started to turn around.

Over the past few years I've been having constant checks and tests to make sure I was on track and that my retinopathy wasn't progressing. I was aware that the stage I was at couldn't be reversed, but I could slow or stop it. I tried to form a link between my diabetes team and my eye team - I needed the communication between them to be strong but it didn't seem to form. This meant that I was passing on messages between the two which, at the time, caused unnecessary stress. Tightening up my blood glucose control had caused more problems with my eyes (something I hadn't been warned about by either team) but in the long run having better control was the best option, not only for my retinopathy but also to prevent any further diabetes related complications.




So the good news... In March this year the DVLA asked me to have an eye test to see if my retinopathy, or the treatment involved, had caused damage that would stop me from driving. Up until that point my consultant had said that he had no worries over me driving, and the DVLA had been informed of this, but it's always nerve-wracking having the fate of my driving licence in someone else's hands. Not being able to drive would cause me all sorts of problems and I expect it would cost me a lot of money to get around. Something that I can't afford at the moment. The DVLA took 4 months to send their answer (though they state on their website and forms that this process will only take 6 weeks!) and I finally found out this week that I've passed all their tests!! The field vision test that checks my peripheral vision was absolutely fine (laser treatment can cause this to deteriorate) and I can read a licence plate from the required distance :)

Finding out this good news after being told 2 years ago that it was likely I'd lose my sight has been wonderful! Although getting on track with my diabetes hasn't been easy it's definitely paid off. If I could pass on any kind of message from this journey it would be that I really wish I hadn't ever reached the stage where I was in absolute panic thinking that I would go blind... I wish I'd done something much sooner to prevent it from happening. If anyone else is going through a similar experience then I'd say hang in there, talk to your diabetes team and ask them to liaise with your eye team, research treatments and ask about what's available to you (Avastin was purchased by my hospital Trust but isn't used by all) and slowly tighten up your diabetes control... Quick changes can sometimes cause problems, so it's best to be slow but steady - that's why it's important for your diabetes team and eye team to talk to one another.


Ninjabetic x 


   

Saturday, 7 June 2014

Life isn't always sweet






I saw this post on twitter recently by Kim/Diabetes - aka @txtngmypancreas and it got me thinking about what I hold back on when I blog about my diabetes and why. I believe my biggest reason is because I don't fully understand how I feel about my diabetes at times, which can be incredibly frustrating, but how else will I understand it unless I address it?

So one of my "this is really hard and I'm struggling but I'm HERE" stories revolves around the way I see myself - how I physically see myself when I look in the mirror. 

I look in the mirror and I don't like what I see. It's not the fact that I have an insulin pump bungee jumping from the side of my stomach, the little pin prick marks on my finger tips from testing my blood sugars, the yellow bruise from a previous cannula that I put in at a dodgy angle or yanked out in my sleep... No, what I don't like is my figure and every day I wish I looked different. 

12 years ago, at the age of 16 I was very aware of how I looked, what I wore and how quickly my body had changed. I'd started to develop lovely curves (I was finally becoming a woman!) but I soon lost them due to undiagnosed Type 1 diabetes. I lost a lot of weight in a short space of time and looked gaunt and fragile - at times I really felt like I was going to break in half. Oh the joys of undiagnosed diabetes! After my diagnosis however, my curves soon returned as I started to take insulin and become healthy again. Then, due to 10 years of being stubborn and neglecting my diabetes, failing to take my insulin and not listening to what my body wanted/needed, my weight dropped again. Following an admission it would rise to a normal range and drop again when I resumed my regime of neglect... rise, fall, rise, fall... Talk about a yo-yo diet from hell. 

Now when I look in the mirror and I'm very aware that my weight hasn't fallen for 2 years. Perhaps this is a good thing in other people's eyes (my doctors for example), but for me, my weight consumes a lot of my time. I spend far too much time trying not to think about it which, in turn, leads to me thinking about it. I'm very aware that it's something I don't like about myself and it always sits at the back of my mind, nagging away at me. The temptation to revert is often strong. Sadly, every time I eat I need to think, in quite a lot of detail, about food; the carbohydrate content, the fat content (which always leads me to the calorie content), the portion size, the last time I ate, the next time I plan to eat, if I'll burn any of it off with exercise, if I'm going to be less active and burning very little off etc etc. I do feel that this constant flow of information contributes to some quite negative feelings about my weight because I'm so aware of what I'm putting into my body and the affect it may have. 

On the other hand though, is this necessarily a bad thing? Surely being aware of what's going into my body is a good thing? In recent months, since studying bits and pieces about nutrition, I've learnt huge amounts about what my body needs in order to function and repair itself when necessary, so why does food still instil some fear into me? At the back of my mind I feel that it may be due to the way that diabetes is portrayed, the stereotype that is projected to the public with such negative connotations, but my honest answer is that I just don't know. I suppose that's the point to this blog - my diabetes has impacted on me in a way that I can't understand, that my HCPs don't seem to understand, and there isn't (as far as I can tell) a text book answer. 

I suppose there's no other way to end this other than saying that, yeah... my life isn't as sweet as it sometimes seems. 



Ninjabetic x 


Friday, 6 June 2014

as I count my lucky scars...



A few months ago I was cleaning out my car (which meant I was ridding it of random test strips and scattered jelly babies that had melted onto the fluffy floor) and I came across my favourite Foo Fighters album ‘Echoes, Silence, Patience and Grace’. This album has been played on almost every car journey since my find with my favourite track ‘But Honestly’ on repeat.


“…And tonight I thank the stars, as I count my lucky scars, for everything you've given me…” 


I have lots of scars, some from silly accidents (mostly cooking related), but the majority of my scars are diabetes related. I don’t notice the scars on my arms any more, probably because I’m so used to them, but I don’t think they’ll ever fade completely. When I was going through my ‘I don’t need insulin’ phase, and had blood sugars higher than a giraffe on redbull, I used to have a horrible rash on my arms. For around 10 years people in the diabetes clinic looked at it, wrote a few notes and said a few words that meant absolutely nothing to me, but they didn't ever diagnose anything. As soon as I started getting my blood sugars under control the rash vanished, leaving behind some scars. Perhaps a good reminder for me not to go back to the dark side of diabetes.

Moving in a little, I have a lovely square shaped scar on my stomach that’s almost faded. This one’s from my 1st CGM (continuous glucose monitor) which, when taking off the adhesive dressing that was holding it in place, took a chunk of skin with it. This really annoyed me at the time as I didn't want such blatant reminders of what diabetes leaves behind, but now it’s just another scar. Another story to tell. And then comes the insulin pump dot to dot game. Taking out my cannulas always leaves a little mark behind, and sometimes those marks don’t fade.

That brings me back to the lyrics above. I’ve never been someone who likes to look flawless, I’ve always been a tomboy – trying to be an action hero like Black Widow who can stand alongside the guys and give as good as she gets. In turn, having scars doesn’t bother me in the slightest, especially my diabetes scars. Each one tells a story, each one makes me a bigger person and I think each one makes me stronger. I think diabetes has definitely left its mark(s), and I glad it has.


Ninjabetic x  




Tuesday, 13 May 2014

Dear Media



Dear media


One day I'm this, one day I'm that,
One day I see you calling me fat.
But what do you know about my condition
What do you know about life on this mission.

Do you see me lying awake at night,
Tears run down my face as I keep trying to fight.   
Do you see me inject, prick my fingers and more,
Do you care about this side, my side of the war.

You sensationalise, you provoke, you speak without care,
You pass judgement on an illness that I have to bear.
You know not of what it's like to live in a body that's broken,
You take words, you twist them and say they've been spoken.

I can't speak for others, this is how I've felt,
I've struggled in silence from the cold blows you've dealt.
I've read and I've listen to misinformation,
When you've had a voice, a voice to educate the nation.

An icon, an image, an unattainable figure, 
You showcase them all, but that causes a trigger.
And what about me, what do you portray,
What you think I should be, what you think I should weigh.

To you I'm a story and a stereotype,
Bad news sells and you thrive on the hype.
The sad fact of it is, you do more harm than good,
If only you listened, cared and understood.

What effort would it take to not make that mistake,
Then when I see those words, I won't feel my heart break.
Your words, they cut through me, straight to the core,
But I stay strong, I have to, I've been here before.

Look at my scars, look closely and you'll see,
They lie on the surface and deep within me.
The big smile, the brave face, I say that I'm fine,
But inside I'm hurting, because of your lie.

Dear media, please help, please give us the choice,
We'll show you the facts, the decisions, the voice.
Dear media, please help, please make the change,
Diabetes is serious, so respect us, not fame.


Ninjabetic