Tag Archives: Freestyle Libre

When 37 is the new 46

There’s something special about being able to celebrate* two milestones in my life on the same day. February 24 not only marks 46 years since I came into this world, but also 37 years of conquering an illness that could easily have seen it end if not for an awe-inspiring medical discovery in 1922.

The last year has seen a lot of changes for me in all aspects of my life. I was appointed as the Finance Director for the charity I’ve worked for over the last 3 and a half years or so, which has stretched me in ways I couldn’t have imagined, but has also been more fulfilling than I could have hoped. Working within the social care sector during a time of financial crisis following 2+ years of pandemic has been challenging, but the things I’ve learned and the friendships I’ve built at work have bolstered me during what could easily have been some mentally exhausting moments.

Both children  – well, I say children, but really now one adult and one in their late teens – have started to explore and venture out onto the next steps in their lives and I’ve had to learn to balance wanting to solve all of their problems myself with allowing them to make their own mistakes and find their way through those challenges as best they can with our support as needed.

And my 37th year with T1D has seen another new technological development for me. Seven years ago I spoke about my introduction to the Freestyle Libre, the flash glucose monitoring system which turned me into the bionic woman and transformed the way I tested my blood glucose levels. Seven years on, my whole T1D life has been revolutionised once again as I’m now the proud owner of a “hybrid closed-loop system” or artificial pancreas, to use the vernacular, which allows my insulin pump to speak to the CGM (continuous glucose monitoring) I wear and adjust the steady administration of insulin to adapt to my changing blood sugars, activities and food intakes.

When that diagnosis happened on my 9th birthday, I’m not sure any of my family could have imagined the changes and developments that would happen to mean that I could spend a little less time focused on getting through each day with T1D in one piece and a little more on enjoying all that life has to offer.

Today will be a quiet day with family, enjoying time with my most favourite people in the world and loving the life I’m able to live with a new constant companion, my insulin pump, to help manage the one that’s been there for almost as long as I can remember. It is time to celebrate both of today’s occasions and I will certainly be raising a glass and a cupcake to do so.

*I thought long and hard about whether celebrate was the right word here or not. Should I have said that I “mark” these landmark points in my life rather than “celebrate” them, but I decided not. I do celebrate 37 years of living with T1D, of surviving all that it has thrown at me over the years and that is something to be proud of and that’s worth celebrating in style.

2021: A Milestone Anniversary – 7Y2D COVID-19 Diaries Week 49

This week I’ve managed to book a couple of those annual leave days off work and am celebrating a milestone anniversary from the comfort of my sofa, rather than at my desk. It doesn’t seem possible that today marks 35 years of living with what I previously described as my one constant companion in life, my Type 1 diabetes.

The last 35 years have unquestionably had their ups and downs as far my T1D is concerned. Amongst the ups was my move to using diabetes technology just before I marked 30 years with T1D, when I first tried out the Freestyle Libre and these days I can still be found with this small device attached to my arm. When I started with it, I made the financial decision to have 2 weeks on and 2 weeks off, but soon realised that I appreciated the ease of it more than expected and quickly determined that it was worth the investment of wearing it permanently. Five years on and I’ve finally had my sensors approved by the NHS and am able to get them through my monthly prescriptions, alongside my blood glucose testing strips, needles and insulin.

As for the downs, well, I’ve talked before about the loss of sight in my left eye following botched treatment for diabetic retinopathy many moons ago as well as the fear I faced when told that I urgently needed treatment in my right eye too in more recent times. Following a second opinion at that time I managed to avoid the treatment, but five years and many phone appointments with my consultant later, it was agreed that I needed some pre-emptive laser surgery to hopefully head off any further complications at the pass and so had it just before Christmas. It wasn’t the ideal time given the risks of heading into hospital during a pandemic, but the precautions taken were excellent and all went well. It did leave me with very blurred vision and sore eyes over the Christmas and New Year period, but I think I rocked the “sunglasses in December” look in style.

I don’t know what the next 1, 5 or even 35 years will bring in relation to my T1D, but I know it will no doubt continue the roller-coaster ride that I’ve been surfing since I was 9. The one thing I do know is that today there will be cake and bubbles and presents and a special dinner to celebrate – although that might be more to do with the fact that I’m also celebrating my birthday today and not just my diaversary!

Virtual Appointments – 7Y2D COVID-19 Diaries Week 27

Another significant change that has happened during the COVID-19 pandemic has been the way in which medical appointments are held. Appointments are a regular feature of life for both M and me and they have continued in a variety of ways since March, some of them decidedly better than others.

For M, his appointments with his gastro consultant at our local hospital have been held over the phone, although I would have preferred the video conference option that was originally offered. A key part of M’s hospital visits for me is the visual review of his health, and whilst I can see just how much he has grown and how healthy he is looking at the moment, I would have liked for his consultant to have been able to do the same. He also has his height, weight and blood pressure monitored to ensure that he is growing as is expected, something which is particularly important as he heads into puberty. Right now, things are looking relatively stable for M health-wise, though his return to school last week has seen both him and G picking up a heavy head cold and bringing it home to generously share with Mike and me.

In comparison, I’ve had a mixture of telephone and face-to-face appointments with various members of my healthcare team. My long-awaited referral to one of our local hospitals for consultant-led care of my Type 1 diabetes finally happened and, even though the initial appointment was done over the phone, I am now the proud owner of a prescription for the Freestyle Libre sensors, something I’ve been self-funding for the last 4 years. This technology has made a huge difference to my T1D management and so both the community care nurse and consultant were happy to support the funding of this equipment for me.

My podiatry appointment was face-to-face (or should that be face-to-foot) at the health centre in the next town over. I was required to wear a mask throughout and use hand sanitiser each time I went in and out of the surgery, which happened more often than you might think for 1 appointment. I was called in by the podiatrist, who accompanied me to and from the building, bearing his pack of anti-bac wipes to clean any surface I touched whilst I was inside. The appointment went well with an almost clean bill of health for my feet, the only problem being a rather painful case of plantar fasciitis in my right foot. A couple of new pairs of shoes with arch supports later, and already everything is beginning to improve.

We’ve both also had appointments for vaccinations, which obviously have to be done in person. M had his Year 9 booster jabs during the summer, whilst I had my annual flu vac last weekend. M is having his flu vac this coming weekend, with both G and Mike booked in for them in a couple of weeks time. I’ve also had an appointment with my GP, which required me to take and email photos to them ahead of my telephone consult. So far, all appointments have gone as well as we could have hoped and I can only hope that as the government guidance changes over the next few months with the increasing number of COVID-19 cases here in the UK, our medics continue to keep in touch and make sure we’re all keeping well.

My One Constant Companion

HS_Birthdays_30thToday I’m celebrating a very special day, a milestone birthday of a very different kind. Google has revealed that Steve Jobs, Ben Miller and Kristin Davis were all born on this day, but as interesting as that is, I’m not really celebrating their birthdays. Today is my Godmother’s birthday, but it’s much more than that too. Today also happens to be my birthday, but, according to my birth certificate and my Mum, both of whom I trust implicitly, I’ve got another 366 days to wait until I reach my next noteworthy milestone, so my birthday celebrations this year are relatively low-key. Despite all these great reasons to celebrate, today I’m marking 30 years of one of the most significant events in my life:

30 years of living with T1D*

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This is me, the Christmas before I was diagnosed

With a less than auspicious twist of fate, my life changed completely on the day I celebrated my 9th birthday and, believe it or not, 30 years on I can say that it arguably changed for the better. Don’t get me wrong, I would give anything to not be living side-by-side with a chronic illness, but the events of that day enabled me to return to much improved health and, most importantly, haven’t stopped me doing pretty much anything I’ve wanted to since then. After months, and maybe even years, of displaying what are now the well-recognised symptoms of undiagnosed diabetes – think excessive, unquenchable thirst; massive weight loss; increasing and unexplained lethargy and a constant need to wee – an unexpected collapse at school led to an emergency hospital admission, a fear-filled night as my parents had to face the unimaginable possibility of losing me and finally a diagnosis that would shape the way my future unfolded. Without even knowing it, and certainly with little regard for my opinion, this uninvited visitor came and took up permanent residence in my body, where it has lived in varying degrees of co-operation since the mid-1980s.

The last 30 years have seen amazing developments in the care of T1D, but the most momentous event actually happened 65 years before my own diagnosis. Before 1921, my parents’ worst fears of that night would have been realised as, until the discovery of insulin at the University of Toronto by Banting and Best, SAM_0827those diagnosed with diabetes mellitus had no chance of survival and could only delay death from the illness itself by starving the body instead. Their discovery followed on from the hard work of  other scientists and medics from around the world such as Oskar Minkowski, Joseph von Mehring and Paul Langerhans, for whom the cells in the pancreas were named, and I doubt that any can deny the life-changing impact that the discovery of insulin has had on those of us living with T1D.

My first decade with T1D was heavily influenced by the incredible mind of my consultant, Professor B, who was compassionate, understanding and impressively forward-thinking in his approach to my care. One great example of his progressiveness is reflected by the DAFNE (Dose Adjustment For Normal Eating) approach to T1D management, which teaches PWD** to “…match their insulin dose to their chosen food intake on a meal by meal basis…“, and which was introduced to mainstream diabetes care in 1998 as a somewhat revolutionary new step. I somewhat nonchalantly shrugged my shoulders at the announcement as I’d been following that regime for around 10 years before it was accepted as being effective by the rest of the diabetes world, all thanks to Professor B and his focus on helping to improve my teen struggles with T1D.

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My collection of Novopens!

Likewise, within 2 or 3 years of diagnosis, my “futuristic” disposable syringes and bottles of insulin, which had replaced the glass syringes and metal hypodermic needles of the 1950s that needed constant sterilising and re-sharpening, had themselves been replaced with one of the first models of the Novopen. This was the first insulin pen injector of its type and combined syringe, needle and insulin bottle in one unit. I worked my way through several upgrades of the Novopen and these days use a combination of a pre-filled disposable pen injector and the last pen injector that I had, a green Novopen 3, which still works in impeccable fashion nearly 20 years on from when I was first given it. Two decades on and I’m so excited to have embarked on another adventure, this time with the relatively new innovation in diabetes care, the Freestyle Libre system for blood glucose monitoring. Whilst I’m not at the forefront of PWDs trialling its use, I have offered to collect data concerning my usage for a research student looking to compare blood glucose monitoring behaviour following the use of the Freestyle Libre, a study that I would hope would encourage some NHS funding for these short-lived sensors which really could revolutionise T1D for many.

To put the last 30 years into context, I worked out some quick statistics of what 3 decades living with T1D has meant for me:

  • An average of 3-4 BGLs measured a day, sometimes a lot more and sometimes considerably less, adds up to around 43,838 blood sugar tests…
  • …and assuming equal use, though the truth is anything but, each of my fingers has been pricked nearly 4,500 times.
  • There’s been in the region of 41,636 injections to keep me healthy…
  • …most of which have in my thighs, bum and upper arms…
  • …although, after 25 years of steadfast refusal to consider anywhere else, I now inject almost exclusively in my stomach and have the bruises to prove it!
  • I’ve been involved in several research projects since almost day 1, including one which resulted in the longer-acting insulin I now use on a daily basis…
  • …and more medical students, visiting foreign doctors and interested consultants than I care to remember…
  • …and the involvement of both G and M in current research to investigate a possible genetic marker for T1D.
  • One amazingly fantastic juvenile T1D consultant, considered to be one of the top men in the diabetes world, around the world
  • …and another who I remember joining my team as a junior doctor at our local hospital and who is now a Professor in this field in that same hospital…
  • ..as well as the care of another unrivalled T1D consultant during both my pregnancies to ensure the safe arrival of my babies and my continued health too.
  • And there have been the inevitable times in hospital, particularly during my emotion-ridden years and fortunately only 1 major complication resulting from my teenage rebellion stage.

A cure may not yet be in sight, but with the amazing developments of the last 100 years, who knows what the next 30 years will bring?jdrf-ndam

 

*T1D – Type 1 Diabetes                                                                                                                      **PWD – People With Diabetes

The Bionic Woman

For the last 6 days Mike has taken to calling me the “bionic woman”. Needless to say, I have not recently had a skydiving accident which has led to bionic modifications to my broken body resulting in amplified hearing, a right arm with the strength of 10 men and the ability to run at speeds over 60mph; in fact, there has been no incident of note and my 1 broken body part, my pancreas, remains well and truly broken. Rather there has been a conscious decision on my part to finally fully embrace a relatively new technological development that I hope will make a significant difference to my diabetes care.

I first became aware of this new bit of kit through M’s school friend, F and his fantastic parents, L and I. I can’t remember quite how we got onto the subject, but I’m reasonably certain that it had something to do with school Sports Day, the challenge of T1D vs. the active child and watching L check his blood sugars simply by waving a black box over his arm. To be fair, M had been wittering on telling me for quite some while about the “white, circular sensor-thingy” attached to F’s arm that enabled him to test his blood glucose levels (BGLs), but the lack of clarity in his description combined with my own lack of relevant knowledge meant that I had absolutely no idea what M was talking about and had dismissed the subject without really giving it a second thought. However, my interest was piqued through that chance encounter on the school field and it led to the opportunity for an enlightening conversation about what this thing was.

The Freestyle Libre (FSL) is marketed as a “flash glucose monitoring system” with a tagline of:

FL

and I was intrigued enough by this to want to find out more and discover whether this might be for me, or not. I read their website, researched on-line for users’ reviews, joined the FB forum for FSL users and wondered if it was too good to be true. I’ll be honest, when I first looked into whether it would be a benefit to me and my T1D care, I loved how easy it appeared to be and, having spoken at length to L and I on more than 1 occasion, could see just how revolutionary it could be, especially for children with T1D.IMG_0131[1] But, and believe me when I say it was quite a big “but”, the sticking point sadly was the price. This type of technology is not available to anyone through the NHS as yet and funding the sensors alone would cost in the region of £100 a month. I know that you cannot put a price on good health, but as a Mum to 2 children with multiple food allergies and an already increased monthly bill due to the high costs of free from food, the challenge of finding that extra £100 each month (£125 extra earned pre-tax) felt quite daunting and I shelved any thoughts of such an investment for the time being.

However, even though the price was making me think twice, I was reluctant to dismiss the option out-of-hand and, given the lengthy UK waiting list, decided to add my name and wait to see what happened in the meantime. The daily events of life with M and G quickly overtook everything else and the FSL soon dropped far down my list of priorities, though it was never far from my thoughts. I’m not exaggerating when I say months passed, but at long last, in January 2016, I saw the message I’d been waiting for: the news that monitors and sensors were once again readily available in the UK and I decided to bite the bullet and order a starter pack to finally see if the FSL’s claims were all true.

IMG_0135[1]The concept is a simple one and reassuringly easy to use. You insert a small sensor with a thin, 5mm needle into the back of your arm and, although the initial instructions for applying it appear quite complex, it really was quick and easy to do. I didn’t find it painful at all and whilst it takes some time to get used to the constant presence of this sensor on my arm, I’ve had no problems with it. The sensor measures what is called the interstitial fluid glucose levels, which are not identical to BGLs as this is the fluid found between the cells, but are considered accurate enough for monitoring what is going on. To find out your BGL, you simply wave the scanner over your arm and it gives you the result almost instantaneously. IMG_0129[1]The sensor continually reads the changes in the glucose levels and, as long as you scan at least once every 8 hours, the easy-to-read graphs given on the screen indicate what has happened during the times you didn’t test. As with most CGM systems (Continuous Glucose Monitoring), it is recommended that the FSL user occasionally uses a standard glucose monitor to test their blood sugars and check that reading to the one given by the FSL – my tests have shown a difference of less than 0.3 mmol, which is incredible.

I can’t begin to tell you how impressed I am with this small device. It really was easy to understand how to use it and the whole family – Mike, G, M and even my Mum – have taken their turn in testing my BGLs for me. Everyday I sit with the scanner amongst the rest of my accountancy paraphernalia in front of me on my desk IMG_0128[1]and am able to discreetly test whenever I want or feel the need. The amount of information available is vast and you can look at enough graphs, bar charts and log books to satisfy even the biggest techno-geek. It has become strangely addictive to do and has already started to give me an even greater understanding of what my T1D is doing than I’ve ever had before. The non-invasive nature of the testing means that it would be easy for a parent to do during the night with no fear of disturbing their child’s sleep, and similarly for Mike to do if he ever feels that my blood sugars are dropping overnight – no need to wake me to ask me if I’m going hypo and then having to survive the often stroppy response his concerns are rewarded with, whether they are or not – yes I am precious about my sleep! I also have no doubt that it would appeal to every tech-savvy under-18 out there, which would no doubt reduce the chances of non-compliance and teen rebellion that so many young T1Ds experience,IMG_0130[1] thereby similarly reducing the risk of complications from poor control. I really can’t speak highly enough of my experience so far with the Freestyle Libre and wouldn’t hesitate to recommend it to every T1D out there. It has been a struggle to find a down-side other than the price, which is due to the £50 sensors needing to be replaced every 14 days. My personal solution to that is to fund 1 sensor a month for the time being, or at least until the point I finally win that elusive lottery jackpot!

 

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