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



Monday, 12 May 2014

Change the World - One starfish at a time



For a long time I've been doubting myself in what I've achieved in life.

I've just started out in my career after years of uncertainty and reluctance to settle down in one place for too long. I'm not married, I don't have any children and don't own a house. I have very little commitment in my life... apart from helping people with diabetes. Since I was young I've seen marriage, children and money as markers of success, markers that would mean I had achieved something substantial - something to be proud of. For a long time I felt that I'd achieved nothing.

Two weeks ago, a friend from twitter sent me a blog. The blog was about a man who was walking along a beach after a storm - the beach was littered with starfish that would soon be dried up by the sun. The man saw a young boy who was also walking along the beach and was picking up the starfish one by one and throwing them back into the sea. The man said to the boy that he would not be able to make a difference as there were thousands of starfish scattered along the beach. The boy picked up another starfish, threw it back into the sea and replied that he had made a difference to that one.



In the past few months I've been talking on and offline to a number of people who have been newly diagnosed with diabetes - people who are afraid, confused, angry and scared. One by one I think (and hope) that I've slowly helped to make a positive difference, even if it's only the smallest difference.

If I can change a small part of one persons world then surely that's an achievement... It's taken me a while to realise that, actually, I have achieved things that many people haven't and combined with so many others that do the same every day we are constantly changing people's worlds. 

So let's keep changing the world, one starfish at a time.




Ninjabetic x



This blog was written for Diabetes Blog Week - You can find more information about this and the blog topics here.

Read the full Starfish story: One step towards changing the world, here

Guest Blog by Becky Reeve - Change the World

The following is a guest blog for #DBlogWeek written by Becky Reeve, Head of Professional Relations, sanofi diabetes.
Disclaimer: These are my own views & opinions and not necessarily those of my employer. I do not have diabetes nor do I care for anyone with diabetes. I am though, very passionate about the following:
Ensuring that the general population understand that T1 diabetes and T2 diabetes are different.
Ensuring that people with diabetes get access to the right care, the right treatment and from the right healthcare professional when they need it.
Ensuring that people with diabetes and the healthcare community that support pwd (people with diabetes have access to the right information to enable choice and individualised treatment.
In my role working for a pharmaceutical company that also cares passionately about diabetes I feel that I can use my role to positively influence the above. I am also very passionate about the benefit social media and in particular twitter, brings to the diabetes community. I use my role and the interactions I have with diabetes healthcare professionals to positively influence their thoughts around social media in the hope that I can convince them enough of its benefits so that they can signpost their patients to it.
What would I like to change? 
The way the pharmaceutical companies are viewed and often portrayed by the media & others. There are a lot of people in Pharma who care passionately about what they do and the people who receive their drugs, the research that is undertaken into providing new treatments and innovations and the treatments that are prescribed and then sold into the healthcare system. We are commercial organisations but large percentages of profits are massively re invested back into further research & development, and often into programs & projects that directly support the NHS, patients and carers. When I started in this role my first action was for sanofi diabetes to become JDRF's corporate partner in the UK. As you all know JDRFs vision is to provide a cure for T1 diabetes, which I believe is only a matter of time & money. By supporting this directly through our partnership I sincerely hope it will lead to a cure one day -which even us in Pharma want too........

Sunday, 4 May 2014

7 Day Diabetes Service




Diabetes patients in Portsmouth had good news this week as the diabetes department has finally been given the green light to have a 7 day service. What will this look like on paper? How exactly will this be done? At the moment I don’t know, but what I do know is that patient safely will be improved, therefore improving the overall quality of the patient experience.

Reflecting back over past experiences of inpatient care I would say that they have been… variable. I have, unfortunately, suffered from DKA (Diabetic Ketoacidosis – A dangerous and potentially life threatening complication) in the past, despite my best efforts to fend it off, resulting in hospital admissions. Some experiences of inpatient care have been smooth and some less so. Of late, as more and more people are using insulin pumps to manage their diabetes, I’ve heard people talking about fear and uncertainty over hospital admissions, not only from patient's but also hospital staff.

In the media recently, the case of Gillian Astbury has come to light and has highlighted the unacceptable standards of basic care in Stafford Hospital that resulted in Gillian’s unnecessary death. For those who don’t know, Gillian died at the age of 66 in 2007 due to nursing staff failing to administer her insulin. Gillian went into a coma as a result of prolonged high blood glucose levels and sadly passed away.

How Gillian must have felt being so poorly with such high blood sugars makes me feel incredibly sad. As someone who’s suffered from DKA I can relate in some way to the terribly uncomfortable, sometimes painful, feeling that it brings, the unquenchable thirst that is sustained by not being able to keep fluids down, and the utter exhaustion the patient feels as their body is drained from energy, leaving them wanting to do nothing but sleep.

What makes me feel even sadder when I think about Gillian is how quickly a patient can feel better when they are given the correct care for their diabetes. Insulin – that is what’s needed when a person’s blood glucose level is high – and it astounds me that, for whatever reason (though there is NO acceptable reason), insulin wasn't given to Gillian. When I’ve been in hospital with high blood glucose levels before it’s almost as if I can feel minute by minute the affect that insulin is having, and at that time there is no better feeling in the world as relief washes through you.  

As I mentioned above, my care has been variable. Two examples that stand out to me are; being admitted to hospital and being attached to a sliding scale that was delivering a large amount of insulin, whilst still being connected to my insulin pump, resulting in my blood glucose levels dropping dangerously low. It wasn’t until my diabetes team arrived on Monday morning that anything was done. The second example was being refused a sliding scale on admission, resulting in me being in DKA for 12 hours until, again, my diabetes consultant arrived the next morning. Note that my diabetes team played an integral part in my care improving.

These experiences started my involvement in advocating for 24/7 care and 7 day services. 

Firstly I addressed the issues, face-to-face, when I was asked at the Portsmouth Type 1 Diabetes Conference (The Sweet Meet) what I wanted from my diabetes team.

“Patient safety for all diabetes inpatient's and a 7 day service.”

I couldn’t even articulate what this service would look like because at the time I was still incredibly frustrated at what I’d experienced.

The next step was to make some more contacts. NHS IQ (NHS Improving Quality) were my first port of call and I was invited to a 7 day service conference in which I was given the opportunity to talk about my experiences to a room full of Health Care Professionals, Commissioners, patients and also Sir Robert Francis’ team. It didn’t stop there – I gathered information from other Trusts about how they were delivering a 7 day service in some departments and passed it to providers at my hospital.

Next up was to address the issue with those who would play an essential part in improving patient safety. I wrote to the CEO of my hospital, the chief of medicine, the heads of the departments where I was admitted and my diabetes team. They each had copies of my experience and soon enough I received a long and positive reply from the CEO. Perhaps I should have gone through the system and gone to PALS, but Diabetic Ketoacidosis can kill in a matter of hours – Do we always have time to go through the system?

And finally… This week, over twitter, I heard the news that Portsmouth Hospital Diabetes team have been given the thumbs up to have a 7 day service. I know that a lot of hard work must have gone into this service becoming a reality and I know the hard work won’t end there as the DSN’s deliver it. As awful as my experiences were, I was lucky enough to get through them and maybe help in some way towards this service. However, it’s a sad fact that it came to patient safety being compromised to make this happen, and that patient’s need to go through so many different channels just to feel safe and to be cared for in an appropriate way. It’s also an incredibly sad fact that, in the case of Gillian, it took someone losing their life for diabetes to be respected.


RIP Gillian x