Here at ShootUp we believe talking to other pancreatically challenged types comes second only to insulin in the list of how to make life with diabetes less of a pain. Shelley Bennett feels the same. When she was diagnosed aged 19 a nurse told her that no one else her age had diabetes. Thankfully, she discovered this wasn’t quite true and went on to set up CircleD.
Circle D is a social group for 18-30’s with diabetes. We meet regularly to chat as well as lots of social events and more. I started it in Kent four years ago but am proud to say that after chatting to me first more ‘branches’ are appearing around the UK, including different age brackets and types. [Excellent, so old fogies such as Tim and myself aren’t excluded – Alison]
Why did you set it up?
I set up Circle D because there was a lack of local support for my age. On the day I was diagnosed a nurse told me ‘oh you are young to have diabetes, no-one else has it your age’. I felt like the only young diabetic in the world! In 2007 I did the DAFNE course and met another diabetic my age, we hit it off straight away and the relief of knowing it wasn’t just me was amazing, I was buzzing for weeks! It’s this that spurs me on to find and give support to as many other young D’s as I can. As well as to prove that nurse wrong!!!
What do you get out of it?
The best thing for me is knowing that I am helping others to feel less alone and isolated. I don’t want anyone to feel the way I did when diagnosed, and for years after. It’s great that I can give them somewhere to channel their ‘rants’ and share their successes. It’s also great for me as I have made a ton of diabetic friends and of course I get to attend the many social events I arrange. It’s great knowing I can make a difference to people. It shocks me that it takes someone like me doing this in my spare time to really reach people and keep at it. The NHS etc should be doing so much more! *RANT OVER*
How do people find a group near them?
Currently we have Circle D Kent 18-30’s, Circle D Norwich 18-30’s, Colchester Circle D for families and Circle D Scotland 18-30’s. There are more in the pipeline though and I know of other non Circle D groups. For up to date info check our website or add us on Facebook for a chat.
What if there isn’t a group near by? My advice to anyone who has no local support is….CREATE SOME! If you want to think about setting up a group of your own or maybe even a Circle D one you will need to be dedicated, enthusiastic, friendly and able to give up a couple of hours a week minimum. It is also great if you can start a group with someone else too. If you have regular access to Facebook this is a great tool to help you on your way. It is a fairly big commitment but the rewards are fab. If anyone is interested in setting up a group, Circle D or otherwise please feel free to get in touch via the website.
Thanks Shelley. And of course, while we’re talking meet ups, we’re having a ShootUp meet up in Liverpool on April 14 so if you’ve never met other pancreatically challenged type before and are in the area, come along!
We hear a lot about diabetes research – mice being cured, islets being transplanted – but what about the other side of research. The bit looking at the practical side of how we deal with diabetes? Chloe Redshaw has been playing at being a pancreas for 20 years and is also studying for a Masters in Health Pyschology. We tied her to a chair and tortured her until she agreed to answer our questions about what she does.
Why did you decide to go into health pyschology with a focus on diabetes?
I’ve had type 1 diabetes for 20 years and have had times of extreme difficulty with not just coping with self-care routines and glycymic control, but the psychological aspects of having diabetes. Feelings of denial, anger and sadness have all been a part of my journey to reach acceptance of my condition. I have had times where despite my best efforts to adhere to treatment regimes proposed by my healthcare professionals, my diabetes has still appeared to me at times to have a mind of its own.
All this has led me to believe that optimal control of diabetes is not just about administering the correct insulin, eating the correct food and monitoring my blood sugars, but the way I view myself as a person and how I view my diabetes as a condition. [The other reason I was so keen to interview Chloe is that I think she is spot on about this and so few people talk about it – Alison]
Ah, so diabetes…it’s all in your head. Discuss.
It would be foolish for anyone to suggest that diabetes (of any type) can be purely controlled by one’s own mind. However, we as humans are not robotic being purely driven by biological mechanisms. Our lives and our diabetes control are a result of an interaction of the biological body, the environment and our thoughts, feelings and personalities. A key example of this is stress. We all encounter situations that cause stress in our everyday lives and we all have a biological response that can cause increase in blood sugars. However, the way we respond and deal with these situations in our mind mediates this interaction between a situation and our biological response.
You’ve done some research into gender differences in diabetes. Obviously you’ll have discovered that women are superior, but other than that what did you learn?
This was specifically in adolescence, though I would be interested to also review the work done in adult diabetics. A prominent part of adolescence is gender identity formation. The review aimed to highlight the particular issues asthmatic and diabetic adolescents face and how they differ amongst males and females. These issues were found to be; social identities, personal feelings of self and representation of illness, talking about their illness with their peers, sport/exercise, diet, diabulimia, treatment regimes, conflict and sense of control. Gender does appear to impact substantially on the experience and management in adolescents with a chronic illness. Interventions and care should have considerations for how boys and girls respond and deal differently with their illness and the impact this can have. [So the research says we should be treating patients as individuals rather than putting them all through the same sheep dip, couldn’t agree more – Alison]
You went all modern and looked at whether text messaging reminders and encouragement to teenage diabetics made any difference. Did it?
Text messaging interventions proposes a way to integrate a diabetic health intervention into current adolescent culture. Studies vary in their methodology, varying between focusing on one particular issue and also whether the patient is a passive recipient or encouraged to interact with the text messaging system. Results show that studies focusing on attendance reminders are generally supportive but lack any evidence relating solely on adolescent diabetics. Other singular issues targeted such as blood glucose testing have been successful; however the problem of maintaining interest did arise.
A more interactive and personalised system has been introduced which enables multiple issues to be addressed; it appears to maintain interest relatively well over a 12 month period. Text messaging interventions for diabetic adolescents appears to be a viable and potentially inexpensive solution to enhancing the support that is already provided by primary care.
The above two pieces of work were focused on adolescent diabetics. However many of the issues addressed are still extremely relevant to diabetics of all ages.
What are you working on at the moment?
I’m currently working on a study exploring factors that influence HbA1C levels in diabetics. I am looking at factors such as; rumination, self-compassion, self-forgiveness, self care, self-esteem, stress and depression.
The study is centred around the self. For example; diabetes requires a high level of self-care and it can also lead to blame on the patient if their glycymic control is not good. However, I am interested to explore if high HbA1c levels can lead to a person having a lack of self compassion and forgiveness themselves. On the other hand I will look at if in fact it is a person’s trait of general lack of self-compassion and forgiveness, that in fact causes stress and increases HbA1c levels.
Is there anything we can do to help?
Finding willing respondents to research studies can be difficult, especially if there is no incentive to complete the questionnaire. In an ideal world I would offer everyone £100 to complete my survey. However, many researchers especially postgraduate do not have funding and would have to put their hand into their own pocket. Therefore, if you see advertisements for a study, please try and take the time to complete it. The saying really does go here; that every little helps!
Whilst I am on this note I would be extremely grateful if you could fill out my online study before 15 August 2011. It is a relatively short online questionnaire and I would really appreciate it!
Isn’t research like this a waste of time, surely we should all be focussed on a cure?
This is a completely understandable question that many may ask. First of all, it is important to note that psychological research into diabetes runs in parallel to the work towards a cure. Psychological work aims to enhance the day to day live of diabetics. It aims to help those with diabetes to live the best life that they can. This can be looked at in a variety of ways; from adjustment to diabetes life when first diagnosed to learning to successfully incorporate the illness into your identity without a negative impact on your psychological well-being. Psychologists are not capable of offering their time to find a cure, but are capable of offering their time to enhance diabetic’s lives, so why not utilize this?
And now, because we’re nosy, tell us about your diabetes…
How do you treat it?
I treat my diabetes just using my mind obviously! Seriously though…I inject long-acting insulin twice a day and my fast acting about 4 times a day. I am a little obsessed with checking my blood sugar so do that about 9 times a day. My doctor once said that it is too much and that maybe I should see a psychologist!
What’s your favourite hypo treatment?
Anything! I am like a wild cat when my blood sugars is low..literally want to eat anything!
Tell us your most embarrassing hypo story…
Hmmm. I was in Spain once walking around a festival. There were big statues and banners etc being carried through the street and I started thinking they were all coming towards me and getting really paranoid. I initially thought someone had drugged my drink and proceeded to get myself into a complete panic. Then I stopped for a moment, checked my blood sugar and of course it was 1.5! After a heap full of sugar I realised that the statues were not coming to attack me and I was safe!
And so we finally untied Chloe from her chair and released her back into the wilds of diabetes research on the condition that she comes back to share the results of her work with us. If you haven’t already, please take a minute to fill out her survey – we can’t complain about a lack of decent healthcare if we’re not willing to put a bit of time into supporting the academic work looking at how to improve it.
Brett Ryan Stewart is a gifted young, up and coming American musician who writes and plays some good music described as “indie/pop peppered with a southern influence”. You can listen to his stuff over on his MySpace page here.
As well as being irritatingly talented, Brett is also lucky enough to have Type One diabetes and, for some bizarre reason, took the time to be asked questions about being a diabetic rock star by the soaraway Shoot Up mob.
Geek us out – tell us about your preferred basal / bolus, pump / MDI insulin regime and how you manage your diabetes
I just switched from MiniMed to OmniPod. I have only great things to say about MiniMed, but I have got to say, the tubeless OmniPod system is unbeatable. ESPECIALLY on stage. There’s enough wires on stage already. Was nice to get rid of one of ’em!
Usual basal rate is 1.20/hr. I have a few settings for different infusion sites. For instance, my legs and arm don’t absorb as well, so I’ll crank ‘er up to 1.40/hr when I use those spots. At the gym, I’ve got a temp basal saved for -50% for 1.5 hours.
I eat whatever I want, and constantly. My appetite knows no limit. Still rock an A1c of under 6.0 though. How’s that for some Meep Zorp info?
When were you diagnosed with diabetes?
Age 9. The Doc said I had the ‘flu. I was drinking lots of liquids, which for me, meant Welch’s Grape Soda. Finally, Mom took me to the hospital when I got worse. I walked in with a BG of 981 [54ish in British!] Beat that! [Bloody hell! -Tim]
Describe your music in 3 words.
Not Justin Bieber.
Does diabetes affect your rock and roll lifestyle? For example, does it prevent you from chucking televisions out of hotel windows and having drink-fuelled orgies with hot chicks, etc?
Only when I’m hypo, in which case I get my musical partner, Chris Tench, to chuck the TV on my behalf. I don’t drink much alcohol these days and Ovaltine isn’t known to be quite the same “social lubricant” as booze…
Chris has seen first hand how highs and lows affect me, musically speaking. Particularly the highs. A few years back, when we just began working together, and before he was aware of my mood swings that come with the fluctuating sugars, he had the privilege of watching me flip out while recording vocals for our band Wide Eyed Sleeper.
After a few takes that were cut short by me throwing the headphones across the room and cursing the songs, yelling “It’s shit! It’s all shit!” He, very Zen-like and patiently asked “You feelin’ ok?” I check my sugar, and of course I was dancing around 300 [16ish in British].
That’s when I had to calm down and explain the birds and the bees of diabetes with him. Now, when we’re writing or recording, if I start in with the “it’s all shit” routine, he insists on me checking my sugar. He’s usually right.
Have you ever had a hypo mid gig? If so, did it result in a complete gig stoppage, or just an interlude while sugaring yourself up again?
Typically the stress of the show shoots it upwards. That definitely affects my performance. But actually I nearly passed out from hypo this past June at a show. The last song of the set, suddenly sounded, umm, funny. I couldn’t remember words. Guitar was feeling heavy all of a sudden. Sweat. Lot’s of sweat. Luckily it was the last song, I got through it, then tossed some glucose tabs down in a jif.
Where do you wear your pump when you are on stage?
When I had the MiniMed, I’d have to strap it to my belt in the back. With the OmniPod it’s great because it can be anywhere!
Who would win in a fight between you and Nick Jonas?
Nick Jonas initially. I’d let him pin me so I could get close enough to his pump to replace his insulin with 7-Up.
Do you think Diabetes-Pop is going to be the next hot niche music sub genre?
God willing. At the rate of diagnosis’ these days, won’t be long ’til we’re mainstream.
Do you tune your instruments/songs to your pump alarm? (Perhaps we pumpers could record a Christmas single – X Factor eat your heart out!)
Not yet, and the only reason is I’m afraid of being pigeonholed in the Diabetes-Pop genre.
Seeing that the hand you use to squeeze and stroke strings with tends to get callused, do you have to set your finger pricker on a deeper depth to get to blood, or don’t you milk that hand at all?
I’ve had the pricker set at the highest setting for years. I use ’em all for blood. No milking required.
We have a long running thread on the forums made up of diabetes-related limericks. We’ve found that it’s very difficult to rhyme anything with pancreas or insulin. Is this why you have so few songs about diabetes?
Well damn, now that you mention it, it IS difficult to rhyme! That’s up there with “orange”.
I think I’ve subconsciously written about diabetes, as a matter of fact. When I was a teenager, my band had a song called “Why Am I So Tired” where I say something to the effect of “am I high or am I low”… It was written with my late friend, Paul, who nicknamed me “Diabeto”
Who are your diabetic heroes?
Having grown up outside of Philly, it was Bobby Clarke from the Philadelphia Flyers.
Now it’s everyone I’ve met who lives with it and doesn’t put up with any BS from their pancreas.
February 28th, I’ll be releasing my 2nd full length album, called “Tilt“.
Let me say this about it…
The theme of this record is one of acceptance. Living life on life’s terms, and the peace and clarity that comes once the mountain towards this acceptance has been climbed, and you’re at the summit. For me, this journey has involved a wide array of personal experience, and it goes without saying that living with this disease has been an enormous factor. I wouldn’t say there are any direct allusions to Diabetes, but I’d be lying if I said it didn’t add some of the weight to the words.
Many thanks to Brett for taking time out from his busy schedule to answer our silly questions; do go have a listen to some of his stuff – it’s actually quite good! (“Quite good” – you can tell this is a diabetic blog and not a music review site, eh?)
In a guest post, my pharmacist gives the view from the other side of counter; take it away Simon -Tim
Right, time to let you bunch know the grim truth about how NHS payment works and your place in the grand scheme of things.
Here it is: every GP surgery in the land is – a business. One that deals in healthcare and in a very professional and dedicated manner, but a business none the less that has to deliver a year-end profit (where did you think the big houses and fancy cars came from? Do you think that Doctors started off as rich people and went into medicine because they wanted to give something back to the people?) And every Pharmacy – exactly the same – is a business (the front shop with the cash registers probably makes this slightly more obvious: the cars and houses are somewhat further down the scale).
Now, the day to day financing of the medication that keeps you lot alive is one that you fortunately don’t have to dwell on too much – be glad that you were born in the UK after the creation of the NHS (apologies to all the non-UK based readers; our climate may be soggy, our cuisine second rate, but we do have the NHS). So you do at least receive your medications free of charge. But of course it is being paid for behind the scenes – the prescription forms you present to your friendly Pharmacist not only represent the instructions regarding what insulin, etc., you are to receive but are also a form of currency.
After passing through our greasy palms, we submit them to the payment bureau, who eventually reimburse us for the medications (plus a small fee for actually doing the work). But where did that money get drawn from, I hear you ask? Why from the budget of the GP surgery that prescribed the medications of course – money which was originally provided to the surgery, from the NHS budget, on the basis that they have a certain number of patients on their books.
So basically, every GP surgery receives a certain amount of money from the NHS for every patient to finance their healthcare. But of course some patients are more expensive to look after than others. I, for example, in a personal capacity represent the perfect patient from a GP’s financial point of view; I am registered with the surgery, so they receive payment for my care. But I have no conditions requiring treatment, and in fact never darken their doorstep. Hence I represent pure profit to them.
But frankly, you lot are a bit more expensive to keep healthy. Lantus 3ml cartridges – £39.00 for a box of five. Humalog – £28.31. One Touch Ultra test strips – £14.64 a box. All this coming out of your surgery’s budget and hence reducing their profit. And to make matters worse, it’s not even as though you lot were healthy for seventy years then deteriorated in the last five years of your lives, nor are you likely to quietly die off in the next few years – you are going to keep draining those budgets for many years to come. In summary, from the financial point of view, you are amongst the worst patients out there – a blight on the budget. Shame on you all.
But before your collective guilt drives you all to overdose on Novorapid, take heart. Your GPs may despise you for the drain you place on their “another week in Dubai” fund, but you are still loved. By whom? Why by your friendly local Pharmacist of course. And we love you for exactly the same reasons your GPs hate you. Those endless prescriptions represent a constant income stream for us. And of course, you have no chance of ever being cured of your woes (Note to self – remember to sabotage new research at Islet isolation laboratory), so of course we will be happily deriving income from you for many years to come. What wonderful milk cows you make.
Right, so now you are aware of your place in the financial pecking order. But what use is this to you?
Well dear diabetics, it really is very simple – you may be milk cows, but that doesn’t mean you have to act like cattle. Each and every one of you is a valuable asset to your Pharmacy. So get out and there and sell yourselves. You should be demanding a high level of service from your Pharmacy for your valuable custom.
Is your GP surgery yanking your chain by continuing to prescribe those test strips you stopped using six months ago, but not prescribing the ones that go with your new meter? Are you tired of trying to get them to sort it out? Well for heavens sake, get your pharmacist to sort it out for you – okay, it is your GP’s job to get these things right, but in their defence its not that easy when you aren’t the one who actually gets to see the things in the real world, that’s what we Pharmacists do.
As an example of what you can demand, I shall tell you of a patient of mine. In the interest of patient confidentiality, we shall call him “Tim Brown”. Okay, I confess – to my shame I have known Tim for many years, back to the days when he had no grey hair and a fully functioning pancreas [a long, long time ago -Tim]. But these days I am also his Pharmacist.
The process goes something like this: I will be busy at my place of work, when I receive a message from Tim, demanding further supplies of insulin, needles and test strips – normally accompanied with a threat of hideous violence that will be inflicted upon my person if I do not comply with his demands. I immediately spring into action – forwarding a request for a new prescription to his GP surgery, while at the same time ordering in the stock I will need to fill the prescription.
A few days later, the prescription form will arrive (Tim’s surgery is not one of the local ones we send a driver to, hence it arrives by post in one of the stamped addressed envelopes previously provided to the surgery for this very purpose). The prescription is dispensed (all the stock previously ordered will have already arrived by this point). Tim receives the message that his gear is ready. We have been known to deliver it to his place of work, but mostly these days we presents himself at my pharmacy to collect it and deliver insulting remarks.
Now of course this example is an easier process because I know Tim personally, the message normally being communicated by text message straight to my mobile. But he has also been known to harass me by email. No reason whatsoever why your local Pharmacist should not be able to do the same for yourself. Please note – if your Pharmacist tells you they don’t have an email address you can use, please point out the following; THIS IS THE YEAR 2009. Every Pharmacy in the land is connected to a perfectly good broadband connection, courtesy of the NHS. If they cannot be contacted by Email, it is either because they can’t be bothered, or because they are part of a large chain of Pharmacies that will get around to sorting this out sometime in the next decade or so.
So in summary, remember that your condition makes you very valuable to those of us who feed off the sick. Get into your Pharmacy and demand:
“I’m a valuable income stream – what are you going to do for me?”
Simon Wilson insists that he is a real Pharmacist, working in a real Pharmacy. On particularly challenging days, he does suspect he may be a fictional character of his own imagination.
Comatose and rotting toes – the lighter side of insulin dependency