A couple of weeks ago, the lovely person behind RockaDexUK sent Pumplette some stickers to try. They were sent free of charge, and there was no expectation that I would blog about them.
However, Pumplette has been a RockaDex customer for some time now. We used to order her supplies from Australia and they would usually be in our hot little paws within a week. The fact that we have been using them for a while should, I hope, give you an indication how good the product is. Pumplette loves the funky colours and shapes that the Dexcom tape comes in. The fact that Pumplette chooses to wear cgm doesn’t mean she loves how it looks when she wears it. That there is a company who makes products to make the whole thing look less utilitarian is nothing short of excellent. There is, of course, the added bonus of the tape extending the sensor life too. Pumplette swims, a lot, and the tape has been fantastic in keeping the thing stuck to her! each tape last around a week, and when it starts to peel, we perform the very careful operation to gently coerce the tape from her before sticking on a new one.
The transmitter stickers have also been a welcome addition to her sticky collection, again, just reducing some of the “medical” look to her devices.
If you are in the UK, and this sounds like the kind of thing your little one would appreciate, the link to the website is here: https://www.rockadex-uk.com/
If you are of an international persuasion, the original store link is here, and its worth seeing whether or not there is a distributor in your territory. http://rockadex.myshopify.com/
RockaDex produce many other accessories for all sorts of diabetes medical equipment, so even if you don’t use Dexcom, it is worth a visit to see what is in store for your devices.
As I said, there was no expectation that I would write this post when we received a handful of Dexcom patches and transmitter stickers to try, free of charge.
When I was at the start of my teens, my big sister’s best friend invited me to join her for a week away in the heart of Derbyshire. The description of who would be there, and what we’d be doing was, at best, vague. “There’ll be around 75 of us. We’ll be split into teams. And we’ll do lots of silly games. And there’ll be thought provoking discussions and reflective talks in Chapel. And an evening sing song. Every day.” I weighed up all the information I’d been given. It sounded bonkers. And I’d know no one there apart from my sister’s friend. I faltered. Should I go? Finally, the extrovert in me won out and I agreed.
A couple of months later, I was standing outside a school boarding house, with my case, forcing a smile to show my sister’s friend that I was absolutely fine….. Within the hour, I knew I’d made the right decision. The people I met on that holiday have remained friends. Indeed, I spent many more weeks with them throughout my teenage years, at Easter and Summer, enjoying all the activities and sport the weeks provided.
When Big turned 13, she was invited to join the same holiday party, still with many of the adults who’d organised the parties I had attended, and even though, just like her mother all those years before her, she knew no one going, she agreed, and had the most amazing holiday. Consequently, every Easter and Summer, she too is to be found joining all these friends for a week of silliness and thoughtfulness.
And so, as Pumplette turned 13 just before the summer holidays, her time came to join her sister on holiday. I was so excited for her to be able to experience this very special part of my childhood. I pushed to the back of my mind how challenging the management of her bgs during the week would be. Every young person on the holiday is encouraged to be self sufficient and responsible for themselves. Which is exactly what I encourage all my daughters to aspire to. However, being a Pumplette involves considerably more responsibility than even I, as a supposedly fully fledged adult, am altogether comfortable with.
Always up for a challenge and new adventure, Pumplette could see only positives in this exciting chapter. Indeed, when we were discussing what support she would like, it was she who assured me that the daytime wouldn’t be a problem. And I knew this. She is well versed in temp basals, SWAG (spectacular wild arse guess) bolusing, hypo treating and rage bolusing. She is aware how different forms of exercise will impact upon her bgs, not only at the point of exercise, but also several hours later. Plus, she can confidently handle her pump, cgm and all other equipment she uses to manage her T1. However, at night, Pumplette doesn’t wake up. Not for a hypo. Not for a hyper. Not for a 76 trombone parade marching through her bedroom. Which is a little bit tricksy when I’m expecting her to independently manage T1 for an entire week. Ever resourceful, when Pumplette and I were discussing how we would manage this, Pumplette asked if it would be possible to use the Dexcom G5 whilst she was away. That way, she could hook up to the wifi overnight and I would be able to view her bgs in real time. If there was an issue, and she didn’t text me, I could call or text her at night and we’d trouble shoot together. This sounded like an eminently sensible suggestion and so I made arrangements for her to borrow a G5 transmitter for the holiday. It arrived a couple of weeks before she left, so we tried out some of the functions together and came to an arrangement we were both happy with. It is at this point I should mention the holiday’s policy on mobile phones. It is one I fully support and applaud. Mobile phones aren’t banned, but every teenager is encouraged to leave them well alone for the week and enjoy the “here and now’ element of the parties. This made it slightly tricky when it came to requesting access to the wifi for Pumplette there. But that was mainly because I had failed to adequately brief the adults on the party about the importance of this and how much work it would save them!
Once the day of the party dawned, Pumplette, Big and myself, loaded the cases into the car and headed off on the 3 hour journey to their home for the next week. There was lots of excited chatter and the journey passed by all too quickly. And then we were unloading suitcases, and I was briefing two very understanding, if slightly shellshocked, dorm leaders about the most rudamentory elements of T1 management and assurances that I would be first port of call for any queries at all. Pumplette waved me off very cheerfully and I did the return journey in a somber fashion, with Abba’s “Slipping through my fingers” running through my internal sound system!
Now. Night one was a baptism by fire to say the least. The reason for the importance of Pumplette having access to overnight wifi wasn’t fully understood on night one, so we were relying on somewhat patchy 3G coverage. OK, VERY patchy. At 1am, I was staring at a rather depleted graph that I’d been alerted to by the alarm on my phone. Pumplette’s bgs were a very shaky 2.3mmols (36 to the bilingual reader). I sent my first text. And waited. And waited. And then, for good measure, waited some more. With an unwavering number, and no reply from Pumplette, I sent a second text to tell her I would call her phone in 2 minutes if she didn’t reply. Wait. Call Pumplette. A very bleary Pumplette answered with a whisper ( she was sharing a dorm with 4 other girls) and asked me to message. I hung up and text her. She replied with an OK, then, silence. But what was even worse than the silence, was that, in treating her hypo and then falling back into her default catatonic state, Pumplette had moved her mobile, so there was no longer any signal. At all. Whatsoever. I couldn’t tell whether Pumplette had treated before sleep, or flaked out part way through the hypo treatment. She could, conceivably, have been wallowing in a puddle of Lucozade, bathing in the stuff, rather than ingesting it. It was 5am before she shifted and nudged the phone back into the beam of signal and 3G, when contact was made once more and I could see, by the dizzying 3.7 that was now showing on the graph, that she had, indeed, managed to complete some kind of treatment.
By the second night, everyone in the dorm was tired and Pumplette had been handed the code for the wifi! I won’t say the rest of the holiday was plain sailing. It was, at times, as tough as I can remember it ever being. But, cruicially, that was only my feeling. Pumplette managed amazingly and took some really grim bg fluctuations and levels in her stride and didn’t let it stop her from participating in any part of the week. One factor I’d failed to remember until late in the week was the part tiredness plays in insulin resistance. It was relentless as the week wore on. And the amounts of insulin we were texting each other about seemed to be colossal. But together, and if I’m honest mainly on her own, she managed this crazy burst of bgs. And she managed her mother’s sadness at having brief conversations that were solely about her bgs. Which she knows I hate doing. I would never ordinarily text her to ask her whether she had checked her bgs. Or ask what they were. It is something I just won’t do. It is something that I would not instigate. This is Pumplette’s gig and I will not trespass, unless invited, when she is awake.
There will be another post about how I felt watching Pumplette’s bgs during that week, once I’ve worked out how I actually felt about it.
This blog, however, is all about Pumplette’s resilience and refusal to be curtailed by her T1. Because she managed to keep pace with her sister and all the other teenagers for that whole week in the summer. She managed that with style, grace and understatement that I’m unbelievably proud of. And together with her big sister (who had her back for the whole week too), embraced the responsibilities impending adulthood holds for them. Spectacularly.
(Footnote: I can’t thank the organisers of the holiday enough for enabling Pumplette to enjoy such a fabulous week, where she never once felt isolated or excluded. Bravo.)
The holiday plans had been hatched a couple of months before we were due to leave. As we were plotting, it occurred to Mr Understudy & I that we could keep this a surprise from the children. Logistics may be a bit of a challenge, but with the timings of the flight out, I reckoned I’d be able to pick the girls up from school & get to the airport in good time without them suspecting a thing.
And so it came to pass. I managed to pack 5 hand luggage sized cases with enough kit & caboodle to see us through a week. Booking allocated seats proved a wise move as this also entitled us to an additional rucksack or handbag each. The perfect extra room needed to pack all the pump supplies & insulin & test strips & chargers. You’ll note I haven’t mentioned test kit there. This is because Pumplette had her usual kit with her & the spare bg kit at school too. No worry, thought I, I shall just remind her before we leave that she needs it.
Fast forward to a somewhat hasty security check & mad scrabble to pick up some food to feed very excited if somewhat bemused children. As they began to tuck into their 4* Michelin priced food, I left them happily munching whilst I went to pick up the spending money. Once reunited with the family it was time to join the queue for boarding. I casually asked Pumplette whether she’d checked her bgs before food. Nope, came the reply. No bother, I responded, you can check them whilst we wait to board the plane.
All the colour drained from my face. In the bags we had with us were 250 test strips, Chargers for test kits (plural), a spare lancing device (because how crappy would that be if you had a test kit but couldn’t get blood out of the Pumplette?!) and a token handful of lancets thrown in just for shizzles as we all knew full well not a single new one would be used during the week! Every eventuality catered for, except one. The omission of the machine that did the clever stuff. That was still contentedly nestling in Pumplette’s school bag which was languishing on the settle in the kitchen back at our house. I felt a little sick. I let my mind canter through possible scenarios. Did I have enough time to see whether or not the parochial airport chemist outlet downstairs had any form of test kit. No. I really didn’t. Those were the plane steps we were being ushered toward now & im also 100% certain the chemist didn’t have a single bg kit. Like I said, it’s a small airport & small chemist! Could we wing it on the cgm for a week? Not ideal. And also, it needed restarting in fewer than 48 hours. Bum!
It was at this point, a good friend from the #doc, who knew what we’d been planning for the girls, text to wish us a happy holiday. I replied with a thank you, & a you’ll never guess what an utter idiot I’ve been text. Then, phones needed to be switched off, and I had two hours where I wondered how easy it would be to pick up a replacement meter once in Spain.
When we landed & I reconnected to the outside world, the aforementioned friend had sent me an email. The email told me that bg meters in Spain would be in mg/dL not mmol/L so I’d have to get good with my 18x table! However, this wouldn’t be necessary as they’d managed to organise a replacement bg meter which would arrive in 36 hours – could they have the apartment address & was this a workable solution? I was close to tears reading this email as I knew we could bumble through one day of cgm blagging before normal service was resumed on the Friday.
Once again, the online community, so generous in time, knowledge, spirit & especially patience in my ineptitude, resolved a situation which could have been a lot more stressful than it actually was. Well. Apart from the bit where the Spanish delivery driver didn’t ring on the door bell & left without delivering the bg meter….but that’s another story! The happy outcome was, by Friday afternoon, we had a spangly new bg meter which exactly matched the one languishing in the school bag in the UK. Which meant we were at liberty to get on with the important business of exploring Barcelona. And a wonderful holiday was had by all.
In our cave, turning 13 is a BIG deal. Not only do the inmates labour under the false assumption that door slamming, being surly and communicating only to request Nutella become acceptable pastimes, but the long, desperate wait (for what my father would call self mutilation), ends and they are allowed to have their ears pierced.
This is one of those rights of passage where no amount of lobbying from the daughter before the age of 13 will be brooked. This is a teenage thang. And you have to be a teenager to achieve that privilege.
As Pumplette recently turned the magic 13, a neatly timed teacher training day (day off school for the pupils) was duly set aside for a trip to get her ears pierced. From time to time, I’ve read of others sometimes having a little trouble with the piercing studio when they reveal either themselves or their child has T1D. I toyed with the notion of not revealing her T1 to the staff at Blue Banana, but on reflection felt it would be very unfair to all involved.
So it was with a small amount of trepidation that I ticked the electronic box in store that confirmed my daughter had diabetes. The lady serving us looked through the questionnaire and spoke to Pumplette directly. “Do you manage your diabetes with medication?” “Yes.” nodded Pumplette. “Ok. Just so that you’re aware, you may take a little extra time to heal and it is even more important that you make sure you clean them properly morning & night. Because getting an infected site sucks and you don’t need that.”
And that was it. No hesitation about whether or not she could have her ears pierced. No lecture on a subject that the orator didn’t understand. Just a very reassuring, and sensible, couple of sentences.
Then Pumplette was whisked into the studio (no Mamas allowed) and the technician talked her through the cleaning regime and about the process. Ten minutes later, Pumplette emerged, all smiles, and with two gleaming earrings. The whole process was far more straightforward than it had been with her elder, non T1D sister!!
Its been a while since we last took our children out of the country. Over the May half term, we thought it was high time we rectified this and so, embarked upon a week long break in sunny Spain. Except, we didn’t tell the children. The first they knew about the trip was pulling up at the airport car park with me unloading suitcases from the boot of the car. They had thought we were picking up work colleagues of their father and heading off for dinner.
Q much excitement from three girls who couldn’t quite believe what was happening.
Although limited in their experiences of flying, they have always travelled very well. However, Pumplette does still remember very clearly her response to stacking over Heathrow for an hour after a 12 flight from L.A when she was 4. It had made her quite poorly and so whenever faced with flying again, she is always a little anxious that this may happen again.
Sure enough, as we were waiting for our flight, this anxiety bubbled up to the surface again and presented itself in the form of a double up arrow on her cgm. Being mindful of the fact that this was probably a predominantly hormonal based rise (although she had also eaten possibly the most expensive sandwich on the planet an hour before too), I urged caution from her when she was correcting. Which she did.
Fast forward an hour and a half and we were cruising at 30,000ft and about to start our decent. I looked across the aisle to where Pumplette was sitting and immediately clocked her pallor. It was shade hypo. I caught her eye and she nodded her agreement with my assessment.
Now, we hadn’t flown since the restrictions on liquids had come into force. I know from past experience of viewing her cgm line, that although the jelly babies in my bag would bring her up eventually, they wouldn’t work as fast as if I’d had the usual bottle of lucozade in my bag. And this looked as if it needed treatment to work as quickly as it could. It was then I remembered the cabin crew’s assertions at the start of the flight that they were there for our safety and comfort. So I beckoned a member of the cabin staff over. I explained my daughter was hypo and please may we have some fruit juice for her. The stewardess couldn’t have been more helpful. Without question, she quickly fetched Pumplette the requested apple juice, swiftly and discreetly returning to us and handing over the carton. Whilst Pumplette gulped down the contents the stewardess checked with me to see whether there was anything else she could do to help. I offered payment for the juice, but was waved away with a kind smile and a shake of the head.
The whole experience of a hypo in that environment is very frightening for a little lady, but the staff’s efficient response and lack of drama meant it was a lot less disorientating than it could have been. Pumplette prefers to hypo alone. No fuss. No drama. Just her quietly doing what she needs to before she feels like herself again and is ready to rejoin the ranks of those with autopilot pancreatic function. I know this. I can’t possibly know what it must be like to physically feel this way, but knowing what happens in a physiological manner to her body whilst hypo, I can understand her need for calm and solitude all about her. The actions of the cabin staff and support they offered was utterly wonderful. And meant that the holiday wasn’t remembered for an air born hypo, but instead the amazing things we saw and experienced together as a family during a wonderful week away.
Tips and Tricks – Let’s round off the week by sharing our best diabetes tips and diabetes tricks. From how you organise supplies to how you manage gear on the go/holiday (beach, skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes proctices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There’s always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.)
I’m far too shambolic and haphazard to be able to offer any pearls of wisdom around organisation of prescriptions and managing supplies. There have been more than a few moments when I have realised somewhat late in the day that supplies are ludicrously low and that phone call to the pump company to replenish stocks should ideally have been made a month before the palpitation fuelled conversation actually occurred.
That said, and this will be very UK centric, one of the few things I do try to share with newly diagnosed families when they first start their journey in this land, is that the best thing to do with a day upon discharge from hospital is to make two appointments. The first with their GP, who will be issuing their repeat prescriptions. A face to face meeting so that you both understand the importance of these items and that the initial requests for quantities will be likely to change, is hugely beneficial. The GP needs to accommodate these requests with minimal or no resistance. If they understand you will not abuse the amounts of supplies on a script, they will respect any requests for a change in amounts.
The second appointment is with a pharmacist who is local and convenient for you to visit. Taking time to chat with them and build up a relationship with a good pharmacist will pay dividends. They will always ensure they have at least one of each of your regularly needed items in stock. This matters. Because there will be days when a repeat prescription has gone AWOL or youve simply forgotten to reorder because you were sure there was another bottle of insulin in the back of the fridge, lurking behind the mustard and other condiments. Upon finding its an empty box (true story), and in desperate need of more insulin, your pharmacist will be happy to let you have a bottle without a fuss and if you’re lucky, they’ll even stick in the request for the repeat prescription! Never underestimate the important role a good pharmacist can play in supporting you with the management of diabetes. As a customer, you are worth a lot of money to them, and they will invest time with you. If you need advise on how different medications may interact with one another, they’re probably the most clued up member of your health team to advise on such vagaries. They know medicine and crucially they know many patients taking a myriad of medicines. Theirs is a vast font of knowledge that is all too often overlooked.
Beyond these two tips, I would add that there is no such thing as a text book case of diabetes. This is a condition that resolutely refuses to adhere to any of the theories written in esteemed medical tomes. The only predictable thing about diabetes is its ability to be wildly unpredictable. But that is ok. Because you’ve got this. And if you accept that it doesn’t play pretty, it becomes that tiny bit less infuriating. Because then you have the upper hand. You know it doesn’t play fair and that there will just be times when it doesn’t make any sense at all. But rather than fret about what happened, you’ll be able to reason its not played fair and stick the emotion and stress about it in the f*ck it bucket. Its done and can’t be changed. But you can recharge for the next challenge. Which you will do. And you’ll face it with amazing aplomb. Because thats what people who live with diabetes do. And I think you’re all utterly awesome for doing it!
Thank you so much to Karen for such an enjoyable week – I’ve still got a tonne of reading to catch up on, but happily I have a quiet weekend with the girls and I’m looking forward to catching up on every post from the week.
Day 4 – The Healthcare Experience – Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it with all!
I have written here before how we always make clinic days a special event. I still stand by this and we both look forward to this special day together. So today I want to take a look at how care is delivered in our bit of the planet.
Living in the UK, we are unbelievably fortunate to be cared for by a system that will meet all the medical needs of my daughter with absolutely no cost to our household other than the taxes we already pay. This is a monumental privilege in my mind and something I and my family have never taken for granted. That we are lucky enough to live within striking distance of one of the largest paediatric hospitals outside of London is another massive bonus for Pumplette’s care. The dynamic and outward looking ethos within the teaching hospital attracts talent and bright young minds, eager to learn and share knowledge. And because of the vagaries and the way the NHS is set up and run, I appreciate this is not the same for everyone. Which sucks. Because some families, young people and adults with T1 are appallingly served by their local NHS services. There are now options for people to move care, but this is always dependent upon the patient having the wherewithal and funds to finance such a change.
So, with great privilege comes great responsibility. We are lucky to have free, on the whole excellent healthcare in the UK. Being cared for, our entire lives, by a health service that does not charge us, has made us a complacent nation. As a nation, we are not as proactive as we could be in keeping ourselves well. For we all know, whether consciously or subconsciously, there is a safety net that will pick up our pieces and stick them back together again. The result of this can sometimes be that we expect HCPs to be constantly nannying us and prompting us and reminding us of our personal responsibilities. And this is possibly amplified when you’re caring for or when you have a long term health condition. Confidence needs to be built to empower the “frequent flyer”. Just as I do not expect the garage from which I purchase my car to call me and make an appointment to ensure I have topped up the washer fluid in my vehicle, why should I expect the team that oversees my daughter’s care to constantly contact us to see whether she is having problems with her feet/eyes/etc? They check these once a year, at her MOT, and just as the garage will check my washer fluid in my car at this time, they do not have an obligation to ring and prompt me to check and fill as and when needed the remainder of the year. I have the skills to do this. Whether or not I choose to reflects my own laziness or level of proactivity at any given time. And so, for the remainder of the year, Pumplette and myself will keep an eye on her feet. Looking at them from time to time and seeing whether there may be any potential issues. This builds good habits up for Pumplette and reminds her of her own responsibility necessary for keeping herself well, happy and healthy. Likewise with her eyes, we make appointments independently of the clinic. And when, last year, Pumplette had issues with her kidneys, it was I who sought and coordinated additional care and check ups for her.
Now I know I am in a privileged position in all of this. I have the confidence and knowledge to know that this is possible. But I did have to learn how to do this. Pumplette’s team have always been superb at championing our expertise in her management and this is what we love about them. We are encouraged to bring our agenda to the team, and seek out additional knowledge. This is when healthcare is at its strongest. Crowd sourcing knowledge & sharing with all the attendees at clinic leads to that dynamic, vibrant and forward looking clinic that then delivers the very highest quality of care. I just don’t want Pumplette to forget her responsibilities in all of this. She has to be the driving force of that care. Her HCPs don’t know what they don’t know about how she is feeling. In order for her to get the best out of the people charged with supporting her on this road, she must drive carefully and flag any issues. And in response, I would expect her health care team to act as her navigator & provide or signpost her to the care that she seeks.
In summary, if you’re a frequent flyer, have confidence in your knowledge & ability to ask for the support & services you need. And if you’re an hcp caring for a frequent flyer, instil that confidence within those who look to you for guidance. I promise the results will be most rewarding for all parties.
Diabetes Blog Week continues apace. I’ve loved reading all the different posts so far this week. A full roundup of participants can be found here & the I remain thankful to Karen of Bitter Sweet Diabetes without who’s idea & organisation this wouldn’t happen.
Today’s prompt is all about the language we use around diabetes & whther or not this matters.
My entire productive working adult life has been spent with beings who are just beginning to acquire a language. A fair proportion of my teaching work had to be executed with minimal linguistic input as often the main point of an exercise would be to master a physical skill that would improve their dexterity and enable them to garner more independence in their lives. If I had cluttered this experience with too much language, their focus would have strayed from the task in hand and instead alighted upon the words I spoke and how they interpreted them.
This demonstrates how important language is. It shapes our confidence and how we feel about ourselves in our formative years and beyond. A child who has only heard kind, encouraging and loving words in their life will likely be happy and comfortable in their own skin. Similarly, a child who is only exposed to negative language will very clearly show just how those words can crush a spirit and create a child full of doubt and sadness who may choose a myriad of ways to display this unhappiness with their own skin. When teaching, my job as a directress was to build up the self reliance of the child. We didn’t indulge children with empty praise. Small children are very astute and quickly learn whether there is a sincerity to the words you’re using to describe the latest master piece they are dripping all over your lap. Understanding that the importance of many things a small child does is in the doing, and not the end product, helps you support them. They often have no interest in the painting once it is finished. Their joy, learning and satisfaction came from feeling the paint on the paper. How the bristles of the brush fanned out across the page the more pressure they applied. The way the colours could bleed into one another. Seeing what colour the paint would become if they added yet another colour to the already sodden painting. (Brown. Always brown. Always.) On the occasions a piece of work was presented to me, I would study it with interest and comment that they must be very proud of their work. These words help the child to look to themselves to see whether they are satisfied with their efforts. Not to perpetually seek approval from those around them. This self reliance is a wonderful trait to behold, and to this day I am still trying my hardest to master this skill.
For the power of language, and how that can permeate every inch of one’s being, should never be underestimated. I feel a tremendous responsibility when I write and talk about diabetes. I am very careful about the language I use. Very aware that I trespass upon this space. I know a little about diabetes and yet I know nothing of having diabetes. I understand that for some, the semantics and language used in the diabetes sphere is utterly trivial. For others, it is of the upmost importance. Often, those who have experienced the greatest wrongs are the ones for whom the language matters the most. For they carry the scars of language. Invisible to the outside world, and yet there for all to see. A throw away comment from a friend, a clinical phrase from an hcp, a sensational soundbite in the media, they all contribute to the additional mental element of managing diabetes. And some are able to shrug this off with ease. Others are not. This doesn’t mean one is right and one is wrong. It doesn’t make one stronger and the other weak. Just as building a child’s self reliance and confidence isn’t a one stop shop. It takes time and consistency.
So, as my starting point, I always use Diabetes Australia Language Position Statement – an excellent language resource to act as my guide. Its where I direct any journalist with whom I happen to cross swords with too. For if language doesn’t matter to you, hoorah! (Indeed, Pumplette will invariably refer to being “T1 diabetic”. However I would never describe her as such as I see her as so much more. But for her, telling you she is diabetic doesn’t equate to you knowing everything about her or that being the sum total of her worth. For her it is a factual transaction. I strongly suspect this feeling may change as she grows older and becomes a semantics fiend.) But, if language does matter, and it cuts to the core to feel you’re being judged solely on the basis of one diagnosis, then it really doesn’t hurt the rest of us to step up and stop that ache. It costs nothing, but the impact will be far reaching and beautiful.
The ambition & confidence of self reliance
Day 2 prompt: The Other Half of Diabetes – We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?
When Pumplette was diagnosed, the mental component of her condition really didn’t register on my radar. As I tried to keep our little family afloat, mastering all the medical and physical elements of her management, her future mental well being and health, I’m ashamed to say, really didn’t occur to me. Naivety and ignorance were in abundance as I listened to, and willingly accepted, other people’s kind intentions where they assured me she was lucky she would never remember any different, and so would always be accepting of her diagnosis.
We were all wrong. And it took me far too long to pick up on the sadness she felt.
Thankfully, through the generosity of many adult friends who happen to have T1, I was able to change my assumptions and understanding of the trials and tribulations that face my second born daughter specifically. Having the knowledge that there will be times when she will feel fried, fed up and utterly exhausted by the relentlessness that is T1, is actually very liberating when you’re caring for a child who is experiencing these things. Having the ability to help your child name how they are feeling, know why they are feeling it, and crucially being able to reassure them that these feelings are transient and WILL pass is incredibly empowering. It helps strengthen their character and makes them emotionally intelligent, which is something I feel is vital for all my daughters, but especially so for Pumplette. For she needs to come to the table on the days she doesn’t really feel like it, with the underpinning knowledge that this exhaustion and burn out will not be forever. It will not determine how or who she is in life. It will pass. And she will be more fierce and alive for having conquered this. Every. Single. Time.
This works for our family. Naming emotions, owning them, and knowing they will pass, has been crucial for the mental health of all my children. The pressures modern life imposes upon these young people today are a world away from the experiences I had growing up as a child. I have found that when each of them have experienced difficulties within their worlds, being able to help them identify their feelings was always the very thing that would lead to their liberation and prevent them from feeling overwhelmed by the enormity of those emotions.
But far and away the most effective treatment all us girls have found to any emotions which make us sad, is a large slice of homemade chocolate cake with a pot of tea chaser. There’s nothing that can’t be made better with that!
It’s Diabetes Blog Week, that time of year when I try to read every post on every blog published in the name of Diabetes blog week. Ultimately this means a week of no sleep and copious amounts of coffee to keep one functioning. However, I always remain grateful to the awesome Karen Graffeo of Bittersweet diabetes blog for this week, and her commitment to organising this rabble together once a year.
The brief for day one is: “Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)”
I’ve been blogging for a little while now, and my motivation was really very simple. I didn’t want another parent feeling as alone and frightened as we did at times during those early days. When Pumplette was diagnosed with T1D, I couldn’t find one single person who was either going through, or had recently been through, the things we as a family were experiencing. Any parental support groups we attended were very tricky. No one there had experience of toddlers with T1, let alone babies. I already felt very alienated from my peers with young children, and coming to a group where other parents spoke the same medical language should have made me feel less alone. Sadly, it did the opposite. It was in those meetings that I realised just how unusual our familial situation was, and there didn’t seem to be any stories of hope for the full childhood that lay ahead of her. And so we stopped attending these groups too. It took until Pumplette was almost 5 before we started to meet other children with T1 of a similar age to her. That isolation felt very suffocating at times. I had no point of reference to see whether we were doing ok, other than her team of health care professionals. They were great, and endlessly encouraging, but it wasn’t the same as the recognition that comes from “Me too!”.
And now, as we stand here 12 years post diagnosis, so many things have changed. The online world has exploded in that time and with just a few clicks of a mouse, one is able to find someone else to identify with readily. Organisations are much better prepared for all ages of diagnosis (although I do acknowledge this isn’t perfect, believe me, its evolving in a positive way all the time), and from the sheer numbers game, and the amount of parents of tiny T1s I know personally, there are others around to share your experiences with. They will champion you and your triumphs and be there to hold your hand at 3am when everything feels like its tumbling down around you.
Of course the messages of early diagnosis are important too – it is my dearest wish that no other parent or family member should ever see their loved one critically poorly at point of diagnosis – but this takes persistence and tenacity and it will not be solved overnight.
Above all though, I like to think the silly stories I regale you, dear reader, with in this blog, will give you enormous optimism about the future that lies ahead of your newly diagnosed child, or loved one, or even you.