On 17th September 2015 the fourth annual International DOC Exchange conference convened with some familiar faces and some new ones. I have blogged about this event before here and here. Around the table there were voices from the online community, industry and a couple of silent voices – attendees who didn’t blog or tweet and who were unfamiliar with the Diabetes Online Community.
We were all brought together by Animas, a Johnson & Johnson company, to discuss various topics, share ideas, offer support and to learn about some returning participants’ projects over the past year. I cannot emphasise enough how much every attendee there appreciates the support from Animas for such an exchange. The fact that a major company recognises the importance of joining together our voices in a room without pushing their own agenda or products is a rare and precious thing. Having the opportunity to discuss lots of common concerns face to face with the luxury of time to complete dialogue is something that I personally find very special.
Kerri Sparling had, once again, compiled a conference agenda that challenged and gave space for dynamic and passionate discussion. And so the meeting began, after an excellent report from Animas about the CHOICE study and a fabulous artistic icebreaker (who knew we had so many talented artists around the table?!), with a difficult starter topic. As a group, we have, in previous exchanges, touched upon the importance of supporting every voice within the online community, not just the voice of people with T1 diabetes. We know the numbers of people with T2 outstrip those with T1, but in general, these people seem to be largely absent from the online community. Important questions were posed, not least should we be discussing how to bring T2 voices to the table without a T2 voice being present? In the UK there has been a very successful “No conversation about me, without me” campaign & this was at the forefront of our minds during the discussion, alongside the stigma that all members of the community face. During our discussions we tried to identify common ground and challenges faced by people with T1 and T2, and we all felt there would be value in having two parallel symposia which could have an overlap where we all joined together to discuss common ground and challenges. We concluded that it would be ignorant of us all to suppose the challenges of T2 were always comparable to those of T1 and we hope there may be an environment where the T2 voices can be united in a similar way to the T1 exchange. Watch this space!
Hearing from members of the group about their different projects and achievements is always an inspirational part of this exchange – and non more so this year than hearing from Daniela about Portale Diabete – a community which she set up over a decade ago, continues to thrive thanks to her vision and passion to support every person whos lives are touched by diabetes. Together with Francesca, they have made Portale Diabete an inclusive community which joins voices and supports everyone.
An important project that I have supported for a little while now is IDF’s Life for a Child. Every Valentine’s Day, people are encouraged to send just eleven red roses and donate the cost of the twelfth to the Spare a Rose project. By donating the cost of just a single rose (£3 in the UK), one can cover the cost of insulin for one child in the developing world for one month. Its that simple. For the cost of a cup of coffee, a child can live, for a month. I love that its that easy! It is such a tiny amount, with the best possible impact, that I decided to forgo a coffee or two a month and set up a direct debit so I know every month, there is another child who is alive because they now have access to insulin.
There were discussions about the psychosocial impact of T1 upon not only the person with T1 but also those around them who care for them (there were a couple of us non T1 parents at the table) and the group compared experiences from around the world. The results were very mixed – it became clear that this is still an area of care where access not only varies wildly from country to country but even within borders. Without a cohesive and comprehensive approach, too many people are being let down and not receiving help and support at point of need. We resolved to continue the conversation virtually and ensure we share the good practises so that care may be improved across the board.
The second day started as early as the first and opened with the topic of burnout. Not solely restricted to diabetes burnout here, but looking more at social media burnout too. Many of the people around the table work within the diabetes industry, whether as a patient advocate, in the charity sector, or running established online organisations and groups. Some of us at the table have forgone a real live social life in order to engage in the online community and offer support to whoever asks. Burnout is a big deal in each of these groups. How much of ourselves do we share? How much do we keep to ourselves? How do we protect our personal information and that of the people we love? The discussion served as a reminder just how much flack can be hurled by faceless online accounts but it wasn’t all negative. The support we as a group can provide to one another and the real difference that the work of everyone there has made to people’s lives across the planet cannot be overestimated. Those gathered around the table are passionate people motivated only by making a positive impact to people with diabetes, children with diabetes, their carers, spouses and friends. Our discussion helped to exorcise our negative experiences and reinforce the value of the online advocacy we all strive to achieve.
Finally there was also possibly one of the most important topics raised of the entire agenda. “How patients can build a case for industry & how industry can build a case for advocacy”. As patients, the group completely understands that industries have a bottom financial line. We are not seeking to rewrite capitalism in any way, but there was a very strong desire for patients to be at the centre of anything industry is trying to achieve. A wonderful quote from the room was “Ask the patient what will help, not how much money they will spend.” As PWDs and carers of CWDs, the question was posed “What do we want from industry?” with the follow up questions being “What can they learn from us?” & “How can the diabetes community, as a whole, improve through these relationships?”. A thoughtful discussion ensued where empathy was discussed – the need for more from both sides, and the fact that this is a relationship which both sides are heavily invested in and both sides need to be strong and robust. As a community, without industry continuing to invest and develop improved ways to manage the rollercoaster that is Type 1 diabetes, then the community would feel abandoned and forgotten. As if insulin really were a cure for T1. Likewise, industry needs the community to engage so it can channel its resources into tailored and relevant developments that are truly what is desired by the community, not just ones that will turn the biggest profit.
The overwhelming feeling in the room was one of warmth towards Animas for bringing us together once more, so that we can continue the dialogue that has been ongoing in this forum now for 4 years. That Animas gives us space to converse and work together without a desire to force their own agenda is something every attendee around the table values most highly. That really does play into the sentiment that they truly want to support us, not just turn a profit from us.
I truly hope I will be invited to attend the Fifth Exchange in Munich next year and continue to work with this truly remarkable group of people I’m honoured to call my friends.
I have spent the last six weeks in a glorious timetable free state with the girls. Although the long sunny summer days didn’t make as many appearances as we’d have liked, the lack of clock watching & abundance of bumbling & dance routines choreographed has been utter bliss! The girls have hunted sheep (see below), swum miles, camped & socialised in abundance & are all the happier for it!
Those six weeks have flown by & today will be spent in a flurry of “I can’t find…..” & “this doesn’t fit!” as I attempt to coordinate three sets of separate school kits before the start of term tomorrow.
I have, somehow, managed to remember to order extra medical supplies so the school’s boxes will be complete with the necessary spares. An accomplishment of which I am rather proud!
This year I have added an additional piece to Pumplette’s school kit. During the summer term Pumplette was somewhat fed up with the increase in supply (temporary) teachers at the helm in her lessons. These teachers would quiz her if she needed to check her bgs in class at a time when she would really rather not have any spotlight shone on her. When hypo, Pumplette wants minimal attention & certainly no fuss whatsoever. The lack of understanding or information given to these supply teachers was resulting in many encounters which left Pumplette feel very uneasy.
Which is why I came up with the idea of informative postcards. On one side there is a photo of Pumplette with her name on the bottom. The reverse side gives any teacher or adult in a position of authority all the necessary bullet points they need to know at that moment in time. Pumplette loves them. They’ll give her a shorthand to communicate her needs to a teacher or coach, without the need for a protracted discussion on the topic.
This blog has been sitting forgotten in the drafts section for almost 6 months now. I thought it high time it had an airing!!
One thought flashed through my mind as I stood in front of the professor in the corridor listening to Pumplette’s diagnosis. It was, as I scrolled through the life timeline of my good childhood friend who lived with T1, that there would be nothing she couldn’t do that she set her mind to.
I think it was my stubborn belief & determination to make this so that has led to her perhaps taking this to extremes & testing every boundary she can find! But I felt it a sound starting place upon which to inspire & encourage her as she grew. I always wanted to ensure she could frolic in the sun whilst T1 stayed in the shade. Her shadow, yes, but one that she could have a good go at making dance to her tune. Of course, I learnt early on that T1 doesn’t always play fair & adhere to the mythical “rule book”, but it is a philosophy which has ensured, as she grows, new experiences are actively sought out. She doesn’t cower & stick to a routine. She strives forward seeking adventures & revelling in every opportunity.
Recently, she once again performed in the professional touring production of Joseph & his amazing technicolor dreamcoat. There were long days at the theatre, different meal times. Different food. Adrenalin spikes & fatigue. All of these things had an impact on her blood sugars & her management. But she knew these things would test her knowledge. She knew there would be random variables & what’s more, she factored these into her management as she performed. I’m so incredibly proud that at 11, she is already piecing this knowledge together to enable her to cope with a change in routine.
Adapting her management without missing a step is testament to her confidence in her ability to own her T1. Is it as easy as I may sometimes make it appear in this blog? Hell no! But does it mean that her childhood is more in line with that of her siblings & peers? Definitely. And I’m incredibly proud that she has the drive to do that.
Over the past eleven years, we’ve been very lucky with Pumplette’s health. Aside from the usual colds of childhood & an extraordinarily mild dose of chicken pox, she has enjoyed what one can only call robust health, always recovering quickly from any bout of infection. Which is why, way back in the Easter holidays, I had been fairly relaxed when she started to complain about lower back pain. Putting it down to an overly ambitious manoeuvre on the trampoline, I deployed my first “go to” treatment that I do for all my girls. Namely a generous helping of cold shoulder & get on with it!
In true Pumplette fashion, she did. I was poorly myself at the time & I’m pretty sure this also clouded my judgement on the correct course of action to take, because by the Sunday morning, as I started to emerge froms my sick fog, I could see Pumplette was really struggling. Immediately I made an appointment to see the out of hours GP (earliest appointment was for late afternoon). This is only the second time in my life I’ve called the out of hours service. The first time was when Pumplette was diagnosed. My spidey sense was on high alert.
When we saw the GP, she asked for a urine sample & took Pumplette’s temperature. I’m ashamed to say we didn’t posses a thermometer in the house before this trip so I had failed to clock the 40.7 fever she’d been running….(I had noted the hot & cold shivers, hence my call for medical diagnosis!) & neither had I ever thought to keep any multistix in the house in case of urine or kidney infection. Her temperature coupled with the presence of leukocytes & nitrites & lots of other things ending in ites, prompted the GP to make a request that Pumplette be admitted to hospital for IV antibiotics. Queue a very wobbly bottom lip from my extraordinarily stoic 11yo.
After a flurry of phone calls it became apparent that the GP was unable to remotely admit Pumplette to the hospital of our choice, so we dosed her up with paracetamol & headed off to A&E to be assessed.
To cut a long story short, we emerged from the hospital at 2330hrs with some oral antibiotics & a distinct feeling that I’d been a neurotic nuisance for having presented at A&E with a poorly child.
Two weeks later, Pumplette had completed her 10 day course of antibiotics but was still very poorly. A repeat visit to GP heralded a repeat course, for 14 days this time, of the same antibiotic. 72hrs later & she was going backwards, not forwards, and we were chasing lab results to see whether there was a chance these antibiotics were doing diddly squat. Finally on the Friday, 5 days after the second GP visit, we were called with results. And Pumplette was prescribed a different set of antibiotics. It took more than two weeks after that for Pumplette to be able to make it through a morning without being in considerable pain.
Because of the length of time it’s taken for Pumplette to recover from this kidney infection, I requested she have some follow up investigations at hospital. Her kidneys are too precious to play fast & loose with. I must say that all the hospital staff we’ve encountered in the scheduled appointments since she’s been referred have been amazing. Not once have I been made to feel like I was in A&E. My concerns & Pumplette’s have been respected and, crucially, acted upon. I am not a parent who leans heavily on the support team we have at hospital, but when I ask, they have been there for us both in spades.
For now, this episode has rocked my confidence in my ability to access the things my daughter needs for her health in a timely manner. I can’t help but wonder whether I should have been more forceful that night in A&E & insisted upon the IV antibiotics the GP was adamant she required. I’m not normally a person who succumbs to white coat syndrome, especially where my daughters’ health is concerned, but I wonder whether my general empathy for A&E staff who were visibly stretched beyond their capacity, a very abrupt Dr who wanted us off his charge sheet & my trying to protect my daughter from further distress all contributed to my attack of white coat syndrome that night.
Who knows? The lesson I have learnt from all of this, however, is to always be tenacious. I knew my lass was poorly. I could see she wasn’t improving. I just need to remember to let the English reserve go & be more insistent.
Eight weeks after initial diagnosis she is still experiencing some pain, although the medics & I are all of the opinion now that this is just post infection pain & it is improving. Just slowly. Very, very slowly.
So I am looking forward to summer & a happy, healthy brood once more. For we are all excited about the adventures some sunny days will herald.
Looking back to the early days of Pumplette!s diagnosis, I can remember gazing at the baby sitting on the floor opposite me & wishing she had a window on her to display what bg number she was contending with. In those early pre speech days, I was hyper vigilant. I knew every pallor of her skin. Understood the slightest variation & would react quickly & nervously to any & every change in hue. How amazing, thought I, would it be if there were some display about her person to give me a heads up on where this is heading.
Fast forward a decade & we now have that window for her numbers in the form of her Dexcom cgm. Every morning when Pumplette checks it before we head out the door for school, I smile. And am grateful. So unbelievably grateful. Not just for myself. And my lass. But more especially because now I know that no other parent of a tiny one diagnosed with T1 should ever have to navigate those tricky waters we did. For the tools to make this bumpy road a little smoother are now readily available for little ones. We are fortunate enough to be cared for by the NHS & increasingly funding is being allocated for little ones to use this amazing technology.
So the changes are ones I’m eternally grateful for. Things that seemed the work of science fiction a decade ago are an integral part of our lives today. This makes me look to the future with excitement about the advancements the next decade will bring, as Pumplette blossoms into adulthood & a life away from us.
And the biggest change I’d like to see? My biggest hope for change is equality of access to all aspects of diabetes care across the globe. That children & adults still die because they can’t pay for insulin is shameful. The fact my child has access to all this state of the art technology because of the happy chance of her birthplace is, in this day & age of a globally connected mankind, fundamentally unfair to the child who suffers & dies from this diagnosis.
So I shall continue to support the IDF’s Spare A Rose, Save A Life initiative. And hope that the next decade brings about this seemingly idealistic wish.
For I’ve already got proof that dreams come true.
Day 3 – Clean It Out!“Yesterday we kept stuff in, so today let’s clear stuff out. What is in your diabetic closet that needs to be cleaned out? This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to. Why are you keeping it and why do you need to get rid of it? (Thank you Rick of RA Diabetes for this topic suggestion.)”
Day three & it’s time for a clear out!
I’m a natural born hoarder. I live in a house with a playroom crammed with every wooden toy ever made for every age group from birth to teens! There isn’t a shoe that has been cast aside once outgrown without a period of a good few years passing “just in case”. (And with 4 females in the household, let me tell you, that’s a whole tonnage of shoes!)
I should have a mass clear out. It’d probably give all five of us room to breath again, but occasionally I come across an item which reinforces why I’m such a hoarder. I’ll pull open a drawer or clear out a cupboard & find an item there that tells a story instantly. Just the action of laying my eyes upon it conjures up memories & feelings from a precise moment in time.
Just such an experience happened yesterday whilst I was searching for lost sock. I pulled open Pumplette’s top drawer & whilst rummaging through put my hand upon this.
This tatty, old bag, that used to boast beautiful decorative beading, belongs to Pumplette. Eleven years ago, you’d never see her without this bag worn across her body. For this was the pouch we used to contain her first insulin pump. This bag was almost as long as her little chubby baby thigh, the exact size of that early, first pump for her. We also had one in pink, you can spot it in the pictures, but that was worn to the point of disintegration!!
I keep these items to remind me of how far we have travelled & what a spectacular journey Pumplette has made thus far. For sometimes today, when she’s being obstreperous & stubborn, I need to remind myself that this is a good thing & that she has always been that way, even from tiny. How could she not be? It was that tenacity that ensured she clung on before diagnosis and could grow into the spirited & talented young lady she is today.
So I’ll keep hold of these things & not clear them out. The memories make me smile & my heart swell with pride.
Today the topic in blog week is Keep It To Yourself
Despite how it may look on this blog, I do adhere to a very basic, unwavering, set of ground rules.
1) if the star of the show says no, then the blog goes in the trash.
2) it’s not my diabetes, it’s the star of the shows, and therefore if she doesn’t want a subject discussed in public, you won’t see it here.
3) all data & medical information belongs to Pumplette. It’s not mine. And you will never find me sharing anything without, you guessed it, her say so.
4) I try very hard to keep Pumplette as anonymous as possible in order to prevent this blog flashing up when she is googled by prospective employers in the future. Again, this is her life. Not to be ridden on & lived vicariously by me!
So you see, even though I’ll share some of the experiences we have had as a family, some of the triumphs she has achieved and some of the stickier patches too, I will always strive to lead by example & write about her with respect to her privacy whilst giving parents belief in their children’s amazing capabilities. Hopefully then, despite our anxieties as parents, we can ensure we support our children to go forth with confidence & skills that they need to flourish as adults. And keep our worries locked up in the cupboard where they belong, along with the bogeymen our children asked us to chase away there too!
#ICan is the first topic in 2015’s Diabetes Blog Week
With this in mind, I thought I’d list a small sample of how my girls can!
Use her experiences gained being an Animas Hero, JDRF Ambassador, & all round socialite, to give a speech which resulted in her now being one of the youngest members of the current UK’s Youth Parliament.
Visit one of the seats of UK democracy, to deliver a petition to raise the need for an increase in research funding for T1 diabetes in this country. Although she was more interested in the pets we encountered on the way.
Be inspired by & inspire, in equal measure, 50 sporting delegates with T1 this past weekend. (And also chastise the author of this post at 03.30am for still being out in the bar at that hour…..)
Get thrown off & run over by a fairground ride, & yet still insist, with a 2inch hole in her scalp, that she was fine & really didn’t need to go to hospital…..
Refuse, point blank, to step foot on any more massive roller coaster rides after her first go, despite having the fast track armband fastened securely to her wrist. Ensuring that her elder sister & father would be condemned to a long day of even longer queues whilst she indulged in far more gentle & sedate amusements with her mother & younger sister!
Be a true friend & inspire all those around her. Her calm presence & wicked sense of humour have distracted many a newly diagnosed child from their own concerns & helped put parents’ minds at ease as they watch this very capable child, full of life & health, living the exact same way as her sisters. Never allowing T1 to stop her or her sisters from achieving all they want to.
And finally, #ICan ensure that all my daughters have a happy childhood, filled with love, appreciation & inspiration. For every single one of my girls live around T1. And every single one of them is amazing.
I have nothing but the upmost respect for you in your chosen profession. The power you have to convey your passion about a given subject to my child & ignite a desire within her to learn more is something I truly admire. I play my part in this learning, of course. I’ve taught my daughters to have respect for their teachers. Not to talk over you or answer back. To ask when they don’t understand. And to listen attentively. They have been taught that in your subject, you will have knowledge that reaches far beyond their current understanding & that an education is a privilege they are fortunate enough to be afforded.
It is my hope, therefore, that when I send to you a child who has been thusly briefed, you too will afford the knowledge they posses with respect. Especially if that knowledge & understanding is around a subject of which you know nought.
Like my child’s T1. You know not how your flippant comment “You were low in my lesson last week as well. Please could you get your mum to sort your diabetes out.” irks & distresses in equal measure my child who will not answer you back out of respect for your position of authority. You do not see the constant monitoring & tweaking that goes on from day to day, week to week, month to month, year in, year out. You cannot begin to imagine what a fickle mistress T1D can be & how many tears of frustration I have had to console & reason with over the years as I continue to reinforce to my child that there is no “right” or “wrong” when it comes to T1 management. There is just a perpetual learning process, in a condition that is constantly evolving & shifting in her maturing body. We are strapping ourselves in for a tricky time ahead. Preparing her metal so she may weather the predicted tumultuous teenage years without being worn down by the relentless daily demands of T1.
Above all, you failed to recognise & acknowledge her vastly superior knowledge in her specialist subject. To treat her with such contempt undermines the confidence which she herself has built up over 11years of living with T1. Confidence which she must defend daily from the constant attack of T1 changing the rules of engagement, sometimes on an hour to hour basis. I would not tolerate her being so disrespectful to you in a lesson. It saddens me greatly that you see it as acceptable to belittle a child’s skills in such a casual fashion.
Please. Don’t judge. And be kind. It’s not tricky, and you’ll find yourself with a child who wants to learn & work very hard for you.
The proudest parent on the planet
Night checks on your child who has T1 can be a hazardous business.
I don’t habitually check Pumplette’s bgs throughout the night, but with various after school activities, varying wildly from one week to the next, there are times in the evening, once she’s asleep & before my midnight pumpkin call to bed, where I will check her bgs & need to intervene.
Last night was a great example of non routine needing additional bg checks. Pumplette had been at a dress rehearsal for a performance later in the week. We dashed to the theatre straight from school & apart from a snack, they didn’t get to eat until gone 2100. On the way back at 2200 she checked her bgs. 22.3 mmol. On seeing this she gave herself the usual hefty correction, armed with the knowledge that any bg over 14mmol for her needs an extra ‘kick’ to compensate her accompanying insulin resistance when bgs are high. Great job Pumplette.
Except diabetes just doesn’t play fair & because she was tired & active at a point in the evening/night when she’d usually be snoring like a traction engine, her insulin resistance was taking a nap. Conversely, it’s contrary mate insulin sensitivity had come out to frolic in the moonlight & her bgs went from 22.3mmol to 6.0mmol in a very short 45mins.
I found this out because her pump, with it’s cgm alarms, was going nuts about 10minutes after she’d crawled into her pit. Suspecting this fall I crept into her room & went to check her bgs as gently & quietly as one can. I usually use her heel for night checks as Pumplette resolutely hides her hands underneath her tummy whilst sleeping. Using her heel is a throw back to her diabetes infancy when her fingers were too small to use a lancet on.
In her half conscious state, Pumplette went to roll over whilst I was gathering up the debris from the bg check. Except being Pumplette & a proper drama queen, she can’t do anything subtly, so as I turned around to retrieve the lancet, I found myself entertaining her heel in my eye socket as she waved her leg around. And boy, a half conscious limb in motion has a mighty thwack to it!!
The upside of this encounter was the lack of need for me to wake Pumplette enough to ply her with lucozade. My shocked yelping & tears like a four year old who’s left the top layer of their kneecaps on the playground surface did that job for me!
In summary. Approach night checking with caution! I only check at night if I’ve had to administer insulin to a sleeping Pumplette or a cgm alarm alerts me enough to wake me from my slumber! That’s really only for my peace of mind & the fact that it enables me to help her achieve her management goals as she is quite fond of sleep, like her mother, and so by my carrying the responsibility for her nocturnal management it helps to keep that HbA1c where she wants it.
No if you’ll excuse me, I’m just off to apply another ice pack!