Tuesday, March 30, 2021

Unsolicited


 

Splainers Gonna Splain

"Mansplaining" has been a well used term in social media circles for years, now. If you Google "mansplain" then the definition you get is as follows:

(of a man) explain (something) to someone, typically a woman, in a manner regarded as condescending or patronizing.

That seems accurate. You don't need to search too hard to find incidents of mansplaining on social media and in everyday life. I don't know why men do it, I don't know why I've done it! I'm certainly guilty of being that person, previously. I think the majority of splaining comes from a good place, a helpful place. However, it is condescending or patronising in many cases and since becoming more aware of that I have tried to refrain from doing it entirely.

Strangely, everybody can be the victim of a splainer - including me. In fact, I've become the target of splainers more often in recent times. That might be because of lockdown and individuals spending more time online rather than interacting face to face. That splaining itch just has to be scratched!

I've begun to pay more attention to who is splaining, especially on Twitter, and if it's just me that is the target of such knowledge sharing. Men are largely the guilty party but there are women who are also keen to offer unsolicited advice. It is generally the "qualified" who are at the front of the advice giving queue. I've used inverted commas around qualified because just how qualified these individuals are is certainly debatable. Some are HCPs and, worrying, offer detailed medical advice based upon a tweet by another. That's pretty dangerous stuff and the primary reason for writing this blog.

Some of the unsolicited advice that's come my way has involved suggestions to change my basal insulin, to change the dose of my basal insulin, to take a trial of a patch pump, to go on a DAFNE course, to visit XY & Z's website to learn how to exercise with T1D, to "Read a blog that I wrote" about whatever I happened to be tweeting about, to consider protein amounts in food... I think some of you may even remember my "destructive" cheesy chips thread? and on, and on, and on it goes.

It is infuriating.

I understand that the majority of unsolicited advice comes from the heart and is intended in the best possible way. However, I am a 44 year old man. I've had T1D for 36 years. I have a very good A1c and a very good time in range. If I need or want to learn more about any given subject, diabetes or otherwise, I have this new-fangled tool called The Internet, which is bursting with free advice from recognised authoritative sources. If I cannot find the information that I need then I will ask for help, sometimes that'll be via social media. THEN, splainers is your time to shine and not before. By all means ask if I need any help or advice and offer yourself - that is absolutely wonderful and kind and the right thing to do. 

I know this is another ranty blog and I'm a little bit sorry about this one, as opposed to the last one, because I know splaining isn't a malicious act. Please, splainers try to think about your replies to the social media posts of others. Please give help and advice when it's asked for and not otherwise. 

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!


Wednesday, March 24, 2021

Freak Like Me

 


I'm sorry about the photo. I know scary clowns are a little too scary for some! Ignore him and look at these words instead:

Disability discrimination

It's at this moment that I expect the vast majority of you to leave. That doesn't surprise me. The subject of ableism appears to turn off a good number of people. It's uncomfortable for many, as seeing disability is, as my own disabilities are.

In an earlier blog, I mentioned a time in my childhood when I first encountered hate towards disability. It was 40 years ago and I suspect if it happened today, in this country, there would have been far more serious repercussions for the perpetrator. Thankfully, things have improved for people living with a disability. I haven't experienced anything beyond schoolyard jokes (apart from one incident in a pub) and comments since... well, school. One of the latter experiences of school ableism was a time when I was referred to as a "freak". I'm pretty laid back and can sometimes turn hatred into a joke. That ability saved me from bullies on several occasions, that and having a few very tough friends. Obviously (watch it!) that was quite a while ago but that doesn't mean it has gone away.

My experiences of ableism revolve around Internet communities. I suspect that to be the case for other forms of discrimination. We hear a lot about racism directed towards sportspeople via social media. It's a massive problem, along with other forms of discrimination and hate, but I'm aware that it isn't only dished out by bigots with keyboards. The same applies for ableism. Just because I haven't experienced it in real life recently doesn't mean it isn't there and isn't happening to others frequently.

This is a tweet from my friend, Meg

Pretty nasty, huh? I don't get it. Is it funny to shout out remarks and mock strangers in the street? I know the answer, of course but what is going though the minds of people who do this? Are they living a troubled life and openly mocking a woman with a disability makes things better for them? I have so many questions. Perhaps it IS funny to them and can be spun as "banter" as many incidents of hate are. 

"I was only joking, mate!"

Oh, right. My bad. I thought I was the circus freak, doing the funnies, not you. 

It's very easy to search social media and find other instances of a similar nature. Sometimes, you don't need to search. It might just appear on your timeline because it's one of your friends who has experienced it. Support your friends/followers, please. If they are brave enough to mention their disabilities and why something is hurtful then the first thing you do is believe them. Don't tell them they're being sensitive or reply with various hashtags, sarcastically referring to "Thought policing". Don't suggest they report the tweet if they find it offensive, either. We all know Twitter aren't acting on any ableism because we, the disabled, cannot possibly be offended or stigmatised!

This has become a slightly ranty little blog and for that I make no apologies. Please:

- Do not mock or shout hurtful comments towards disabled people. This may be considered a hate crime in the UK.

- Do not joke about disability in any form unless it's YOUR OWN disability.

- Do not suggest things to "improve" a service which completely alienates people with a disability. That sort of ableist trash is all over social media. If you have an idea then consider accessibility before anything else. If somebody calls you out on it then adjust your idea or remove it. 

Why wouldn't a person do those things as a basic starting point? Perhaps they don't like a disabled person, being superior to them by noting their discriminatory nature.

I'll put my soapbox away, until next time.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

BUY DIABETIC DAD A COFFEE HERE

Friday, March 19, 2021

Use The Force

 


Do you ever look at a meal, a plate of food, a snack and just know what the carb count is? Maybe you've gone a step further? Not only do you know the carb count but you know exactly what to bolus and when to bolus to get your blood glucose back into range, soon after you've eaten.

Do you sit there, feeling all smug like some kind of diabetic Yoda? Good! You probably should. Diabetes is work and getting things right is something to celebrate.

I think we "use the force" in many aspects of life, particularly health. I'm willing to bet that some of you have guessed what dose of pain relief you needed for a headache. One paracetamol... two... maybe two with a couple of Ibuprofen, a few hours later. Wow! it worked. The headache is gone. Headache Jedi, we are. (sorry)

I'm not sure Obi Wan & co. can take the credit for our health treatment successes. I think this is because we know our bodies and how they react. Sometimes we make conscious decisions about our health and sometimes things just seem to go into autopilot. Sadly, as we age and get more experience of ill health I think we retain a subconscious knowledge which we call upon when treating common ailments or, indeed a chronic condition such as diabetes which we've become conditioned to living with.

You might refer to the bolus doses and carb counts as guesses but, after a while with diabetes, I'm not sure that's entirely true. All those meals and injections (or pumps), the maths, getting it right or wrong and the information presented to us or felt by us physically - does it just vanish or is some of it stored inside our heads beyond memories of the events? Easy, Diabetic Dad, this is getting deep.

Take hypos. (Please take them!?). We're told what to consume when we're below a certain level of blood glucose. If you're dropping 0.1mmol every 5 minutes and you've just crept into the red zone then sure, you might stick to the rules and eat the recommended amount of carbs because you know you're not in any real danger. If you're dropping 0.5mmol every 1 minute, you're shaking, rapidly heading south and your back looks like a waterfall then you're unlikely to be sticking to the rules because you're not thinking clearly, you might be panicking and hypo hunger is a real thing sometimes! Yet, you probably realise that you're in greater danger at that stage. You probably realise that counting out 6 Jelly Babies isn't very important. You probably realise the only number that needs to be given any attention is the one on your BG meter or CGM. Let the feasting commence! That may have happened to you previously. It's certainly happened to me; a time where little thought or brain power is used, it's all action and a carb frenzy. Then you feel better. Later you're a little high but you're not in danger so your brain drops out of survival mode and you calculate your insulin correction dose. Of course, some of you might be lucky enough to have the technology which informs you of you insulin on board, the speed of the decline of your blood glucose and how many fast acting carbs you'll need to consume. But... perhaps you have that tech and you still go overboard because of survival autopilot.

I know I've used the words "You" and "Your" and "You're" several times, there. That is just a generalisation of what some people living with diabetes might have done, including me. I do dislike talking about the diabetes of others in a way which must reflect my lived experience. That would just be terribly wrong of me.

Moving on! and to conclude, I think we as people with diabetes, regardless of type, are under tremendous stress and we carry a huge burden by simply living with our condition. The number of additional decisions made per day, compared to a person without diabetes, is huge. Those decisions require brain power which can sometimes be utterly exhausting. I think it's entirely normal to sometimes trust in your instincts, subconsciously act and "use the force" to act or react in regards to your diabetes management.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

BUY DIABETIC DAD A COFFEE HERE



Sunday, March 14, 2021

Kindness in Clinic

 


It's been a week, a tough week, for many in the UK. We celebrate Mother's Day under a very dark cloud for women in this country and around the world. Sometimes it's difficult to put yourself in the shoes of others but as a man, somebody who shares the same sex as the majority of people who commit horrific crimes against women, I think the least I can do is to read some of the shared experiences and try to understand what women go through. Beyond that, if I can change my own behaviour for the better then I will.

I tried to do the "read, listen and learn" thing during the peak of Black Lives Matter. I still do. That issue and others have not gone away.

How we treat others, how we address them, how we judge them and the tone we use is something very often "chewed over" by the diabetes community. Some stories are very concerning and remind me of my own bad experiences of diabetes clinics. Would you like a little story? Alright then! Not that you have a choice. I'm telling it:

After a few years of living with T1D, I began to relax a little too much with the condition. Finger pricks were not happening very often and I was eating and drinking anything at intervals which suited me. Pretty normal behaviour for a teenager, I guess. Of course, that behaviour resulted in a noticeable change in my HbA1c. I don't recall the numbers but I remember one particular incident which, even at the time, struck me as totally unacceptable. I saw my then DSN, following news that my last A1c had increased. The conversation began with suggestions that I was an angry young man. (She was right, I was a teenager with a chronic condition, given no psychological support. I was pretty tetchy!) Followed by news of what will happen to me in the coming years if I didn't get a grip of my diabetes. Once the fear mongering over blindness, kidney disease and heart attacks had concluded we (she) moved on to amputations. "I think I should take you to the amputations ward, then you'll see what will happen to you unless you sort yourself out."

Little wonder, you might think, that I stopped attending diabetes clinic appointments at the first opportunity, as an adult.

That tale was from the late 1980s / early 1990s. Over 30 years later, things are different. However, the fear of HCP tone, attitude and judgement is still a thing and not just for me. How do I know? Take a look at This Poll on Twitter

Firstly, let me just say that 291 votes is absolutely NOT a true representation of the diabetes community. It is a TINY fraction of the people living with any type of diabetes. Secondly, I was wrong. I was surprised at the results. I really expected the fear of complications to be an enormous winner. It seems apparent, at least from this little poll, that HCP tone, attitude and judgements are very much on the minds of some when attending their appointments. I think we still have some way to go in that regard.

Kindness in clinic is not a one way street. Kindness towards HCPs is not only for clinics, either. Would you like to know how I start every appointment?

"Good morning/afternoon Mr, Mrs, Dr or even first name terms. How are you?"

Don't get me wrong, I don't really care that much! This is my appointment! but I do think it's a polite thing to say and it gets the appointment off on a friendly footing. 

Would you like to know how I communicate with HCPs on social media?

Politely.

My past experiences with HCPs have no impact on how I communicate with others, today.

HCPs are people, too. They mostly have very demanding jobs, families, relationships and health concerns of their own. They don't deserve to be hauled over the coals by people they might have never met or even interacted with. And sometimes for the most ridiculous of reasons! The defaming of some has been appalling and that needs to end. If you're happy to make hurtful comments about HCPs that you've never met then I really think you've no business to advise others on kindness.

That's it for today. I encourage everybody who reads my blog to try to be a little kinder to everybody around them.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

BUY DIABETIC DAD A COFFEE HERE

Tuesday, March 9, 2021

Diabetic Superstar


 There are two words in the title of this blog. I'm fine with one, less fine with the other.

"Oh, no! He's going to talk about language matters!"

Maaaaaaybe. Let's see.

Of course, I'm fine with "Diabetic" and always have been. It's a part of my social media username and it's written in the tattoo on my arm. You might say that I'm relaxed about being referred to as a Diabetic. I know some are not and that's equally fine with me. 

My grumble comes over the word "Superstar". It's not only Superstar, it might be "Up and coming rising star" or perhaps "Shining star". Stars get a lot of copy when it comes to exaggerated expressions of praise, don't you think? And praise is good! Praise is right. Praise works. Individuals who do great things undoubtedly deserve praise.

Where the line is between expressing thanks & offering praise and creating a celebrity is what worries me. Celebrity offers many trappings which are hard to resist. I won't use my blog to name-drop but, in a previous life, I've known a few good people, friendly people to become wealthy and famous and subsequently become a very different person. That's a shame but I understand how the voice of an ego can change a person.

So, you're wondering how that might be related to diabetes and who I'm talking about! Firstly, I'm not interested in cryptic messages, subtweets or carry overs from the schoolyard. That's not my domain. I'm blunt and direct much to my cost, at times. I'm not referring to specific individuals here. I'm referring to what appears to be a growing trend of using such superlatives, particularly when aimed towards advocates in the diabetes community.

I've seen such terms directed towards HCPs on Twitter. They deflect it superbly! Often responding with "I'm just doing my job" or similar yet the majority know that's not true and many HCPs go above and beyond the calling of their salaries. They deserve praise but I suspect/hope they'll agree, they're not celebrities and feel uncomfortable to be slapped with the "star" label.

Advocates seem less worried and that worries me.

I think it's impossible for any advocate to truly represent the best wishes of such a huge number of people, such as those living with diabetes. Even a specific type of diabetes, such as Type 1 has almost half a million people trying to manage the condition in the UK alone. The whole subject of advocacy leaves me uneasy but when any one advocate is held on a pedestal, I feel even more uneasy about inflated egos, self appointed voices of authority, individuals who might speak for others, speaking for an entire community without engaging with any more than a tiny percentage of their peers. 

A shift in diabetes advocacy would be a great thing. I think many have heard me and others suggesting this and are acting upon it. A shift in how we praise advocates might also need to be reconsidered. While language matters in regards to being respectful, I think it also matters in the avoidance of creating a celebrity culture, a culture which cannot be good for communities of people living with diabetes. Within the #DOC and #GBDoc it only recently came to light that advocacy resulted in the abuse and sexual harassment of women, as "fame" and status was used to coerce and manipulate members of those communities.

What do you think? Are we in danger of creating celebrities from the world of diabetes advocacy and do we need to be more careful about how we praise those in that arena?

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

BUY DIABETIC DAD A COFFEE HERE

Friday, March 5, 2021

Hobnobs in Hiding pt.2

 


Did you ever have a bad experience with alcohol? Or perhaps you ate at a particular restaurant and got sick. Did you then spend a while, avoiding that drink or that meal? Maybe you've never eaten or drunk something since the time you were left with no option but to bark into the toilet bowl, soon after. I don't blame you. That's exactly how I feel about Hobnobs but only the original ones. Cover them in chocolate (as seen above) and I'm more than happy to ruin my blood glucose for them. There is nothing wrong with the biscuits, per se, it all stems back to my childhood memories of them.

Hopefully you've read part one of this blog already. If not, just click/tap that link and catch up.

After feeding David hundreds of biscuits and probably tens of thousands of extra calories, hiding Hobnobs in school desks, school bins and my heavily policed home bin, you might think that enough was enough when it was time to start Secondary School. Wrong! A new term, a new school, new classmates, new biscuit hiding challenges! We go again! Raaaaaar!

Initially, I tried my old route of palming off my silver foiled packets of snacks to David. Things had changed. David was less keen to be given food. Perhaps he thought I considered him some kind of charity case, starving for my daily crumby offerings. In addition, the "big school" was exactly that and David wasn't always in my class and had made new friends. Dammit! It was time for a new plan.

The school bins were an option for me on some days. On others, I was a long way from any form of bin and had to take my Hobnobs home but not to deposit in the home bin. I'd already learned my lesson about dumping things there! In my wisdom I decided to hide these little packets under my bed. How very child-like! but, then I was only 11. If you're wondering how many Hobnobs will fit under a child's single bed then the answer is several hundred.

That worked well for a while until the day came for my mum to vacuum my room. Let's call this "H-Day".

I'd like to describe an almighty telling off, here. Something to big-up the drama of that moment. All bloggers use some artistic licence, right? That didn't happen. I was asked "Why?" and my response, blurted out without any real thought: "I don't like them any more".

I mean, it wasn't a lie! but it wasn't the whole truth, either. I didn't want to be the focus of attention, I didn't want to be different, I didn't want to be more different, I was already different. Even at 11, I thought that conversation wasn't something I and my parents were ready for. I didn't want to worry or upset them as much as I didn't want to confess my "weakness".

Finally, things changed. That was the last time I would handle Hobnobs, unwillingly ever again. I was sent to school with a juice box instead. That was perfect. The other kids would drink juice, cola, anything with lots of sugar during the morning, between the first and second lesson. I was fitting in!

The impacts of this time only became apparent as I got older. I lost countless hours in class and in education because of feeling hypo. For around 4 years (before things stopped) I was having a pretty bad hypo, two or three days per week in the hour before lunch at school. At one stage, I collapsed in school, during a PE lesson of Badminton. I had a huge seizure, bit my tongue and had to spend a week at home to recover. Even that incident didn't make me eat my snacks! By now, my friends were old enough and "safe" enough to know that I have diabetes. I still refused to tell them. The badminton incident was chalked down to me falling over and hitting my head, again, not a total lie! I certainly hit my head and fell over.

I decided to blog about this little period in my life because of Eating Disorders Awareness Week. I like to discuss my blog ideas with friends, in advance and we agreed that this might be more accurately described as Disordered Eating or even Disordered Diabetes! Let's go with the former, the latter might light some fires.

The stress, of varying intensities, at that time was frequent. Handling a new chronic illness diagnosis as a child is bad enough. How about a side-order of social anxiety and feeling terrible from hypoglycemia? 

I feel lucky. That period in my life could've easily escalated into something much worse. I did carry some of this behaviour into my teens and early adulthood but to a far less dangerous extent.

As an adult, I wonder how this might have been avoided. My conclusion is psychological support. Each person, regardless of age, should be offered support following news of a life changing diagnosis. If I could've normalised and processed the news of diabetes, I'm certain that this behaviour would not have happened. That may have resulted in an easier childhood and a different path as an adult. 

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

Wednesday, March 3, 2021

Hobnobs in Hiding pt.1


 

Allow me to reassure you straight away. This blog will not be entirely related to Hobnob biscuits. Perhaps that's more a disappointment rather than reassurance to some of you! Don't run away if you're here for Hobnobs tales. They do get a mention, I promise.

It's #EatingDisordersAwarenessWeek according to Twitter. I think that I've known of some eating disorders for a good part of my life. Anorexia Nervosa was the term frequently heard when I was younger. It seemed entirely related to young women and girls and I rarely gave it a passing thought. Some time later and after embracing my Type 1 Diabetes, taking to social media to learn and share, the term Diabulimia began to get mentioned a lot. The BBC labelled it "The World's Most Dangerous Eating Disorder" in this article. I saw the video, relating to that piece, on BBC 3 after being sent the link by my lovely friend, Megan. Powerful stuff. I felt very sympathetic towards the women in the story but fortunately, I thought, it wasn't a problem for me.

Now, you're expecting a grand "confession" about how I've been battling an eating disorder. That's not happening. I've taken some time to read the tweets tagged to the above hashtag and it seems apparent that eating disorders are incredibly complex, brutal and, in many cases, very individualised in that the nuances appear to differ from person to person. That opened my eyes to the subject. It opened my eyes to the fact that although it is mostly women who are contributing and sharing, it's not only women. Some men also popped their heads above the parapet. 

We men are not great at talking about health. I try but there are many things that I haven't spoken about openly and may never do so. I have my reasons but mostly it's because I find diabetes to be a far more interesting conversation. A condition which is forever changing in many respects and something I'm often learning something new about. Eating Disorders Awareness Week taught me something new and it relates to my diabetes. Boy! does it relate to my diabetes! Let's start at the beginning...

...Following my diagnosis of T1D in late 1984, there were Christmas and New Years Day school holidays. That was probably a good thing for me. That little break from school gave me and my parents the chance to get a grip of my diabetes before sending me back to the classroom. A week into January and it's time to fire up the pencil case and get back to it. Me? I was back into school 20 minutes before anybody else with both parents. Parents armed with a bottle of Ribena (remember when that was great for hypos?) a bag of blood glucose checking equipment, a letter explaining what Type 1 Diabetes was and probably a truckload of anxiety about leaving their recently diagnosed 8 year old child at school, to manage his diabetes on his own.

We had a chat, my parents left and the other children streamed into the classroom. I don't remember any of my friends questioning why I wasn't at school before Christmas. They were unaware of me lying in a hospital bed, fighting and screaming at nurses who were trying to inject me with insulin while they, my friends, were singing carols at the school assembly. 

In 1985, insulin therapy was very much different than it is today. No pumps, no basal/bolus, no CGM and Loops were honey nut and you ate them for breakfast. You got two types of insulin which you mixed together after drawing it up into a syringe. That was injected twice per day, in my case, and I ate carbs to cover the insulin. If I exercised, I ate more carbs. That was it. Needless to say, it was a hypo-fest at many stages. Because of the need to eat carbs throughout the day there was a strict eating schedule to stick to. It looked something like this:

- Wake up, finger prick and morning injection

- 7.30am, breakfast

- 10am, mid-morning snack

- Noon, lunch

- 2pm, mid-afternoon snack

-5pm, finger prick and evening injection

- Soon after 5pm, dinner

9pm, supper

Yes, that's right. I was eating a lot! Sometimes it worked out, sometimes I was waking up at 3am with a BG of 3.2mmol. I know, nothing much has changed in that respect. 

There are two times in that schedule which are important. 10am and 2pm. Those are not normal eating times for school children and on Day 1, back in class, didn't I know it. The chattering and excited children around me were the first ones to notice. 

"Paul, what are you doing?"

"You're not allowed to eat in class!"

"Can I have some?"

and then "Mrs Parsons! Paul is eating!" exclaimed the loudest voice in the classroom. Every eye was on me. 30+ children staring at me and my two tangerines (It was after Christmas, it was a thing to eat tangerines at that time), Mrs Parsons settled everybody down. I do distinctly remember how hard it is to eat tangerines when you're trying to not cry.

Yes, yes, Diabetic Dad. All very bottom lip wobbly, but how does that relate to eating disorders?

For the next few days, I hated school. I hated 10am and 2pm because of the comments from other children. They weren't being mean or bullying me, they were asking questions, making comments and each time it was chipping away at my confidence and making me feel different. Eventually, probably after a week, I stopped eating my mid-morning and mid-afternoon snack. It was noticed by some children. They'd already become used to me eating at those times. When questioned, I said that "I don't need to do that any more. It's gone away".

By now, the tangerines had run out and I was sent to school with two little foil-wrapped parcels of biscuits. Hobnobs! They stayed in my coat pocket all day and I put them in one of the school bins before leaving at 3pm. Until, eventually, the school removed the bin that I was dumping my food into! I was devastated. I took the Hobnobs home and sneakily put them into the bin at home. It was noticed and I got a full on rollocking about not eating my snacks and how I could hypo and finish up in hospital. 

So, the bin at school was gone, the bin at home was too heavily policed. What to do!? I can't bloody eat them! That would be ridiculous. I'd convinced my friends that I don't need to do that now. I was stuck but determined to look "normal" and so my next bright idea was to hide them in my school desk. School desks in 1985 looked like this:

If you're wondering how many Hobnobs you can hide in a desk like that, the answer is several hundred. This was a brilliant plan. It went on for months! I even left a desk, full of biscuits, for an entire half term break. 

Things only began to go wrong when the lid on my desk wasn't closing properly. A half inch gap appeared, through which many shiny tin foil packets of Hobnobs could be seen. I had to get rid of these and fast. 

It was a PE day. I knew this would be my chance to remove my hidden biscuity treasure because it was Easter (yes, things had been going on for THAT long) and there were large bins in the classroom, full of cuts of paper as everybody was making Easter decorations. I "forgot" my PE kit and was told to stay inside and do some artwork - this was common practice at my school. For the next hour, I spent my time running back and forth to the large bins to dump armfuls of biscuits. Once my desk was empty, I took the cut up papers and placed them over what was probably about 10kgs of Hobnobs. I got away with it. At least, if anybody did notice they didn't say anything.

Of course, I needed a new place for my discarded snacks from then on. The stress of hiding them in my desk was just too much for my little 8 year old brain. I did find another bin, I began to dump them into it at break times but that was also noticed. Fortunately, it was noticed by my then best friend. He asked why I was throwing them away and accepted the answer that I just don't like them. He also began to accept them from me to eat. I remember David, well. He was new to the school and was just trying to fit in. We became good friends, he ate my Hobnobs for the next 3 years! 

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!





Monday, March 1, 2021

Freestyle Libre 2 - In Review

 


It feels like it's been a long time coming for UK based people living with Type 1 Diabetes. The Freestyle Libre 2, the sequel to the box office smash original, is now here and is available to eligible diabetics on the NHS.

I don't really do reviews. If you've seen my vlog then you'll probably be aware that I focus my attention on talking to other people living with diabetes, sprinkled with the odd rant about whatever issue is burning in my belly at the time. So, I'm going to keep this "plain English" and try to focus on areas which I think are important to me. If you're especially interested in an area that I don't touch upon then do leave a comment below or get in touch via the usual channels.

What's in the box?


Does it look familiar? If you've used the original Libre then it probably will! It's exactly the same thing. All your old favourites are here; Insertor, applicator, 2 handy alcohol wipes and an instruction manual which you've never read. There isn't anything noticeably new. Even the outer packaging looks the same apart from a number 2.


Not that the packaging really matters, aside from the waste (I'll get on to that soon). You're not really here for that. You're here because it's new and you've heard it works "like a proper CGM". It's true, it does. 

Users of Libre 1 can turn their sensors into a CGM via a nifty piece of kit called a Bubble or a Miao Miao. Essentially, both are Bluetooth devices that can sit on the top of your Libre sensor, taking in all that lovely data. That can then be sent directly to your phone and an app such as Diabox. No need for scans! Cool! Well, yes apart from the need to purchase a third party piece of hardware and turn a reasonably flat piece of tech, in the Libre sensor, into quite a bulky lump on your arm (or wherever you choose to wear yours). 

"Hold my pint!" exclaimed the boffins at Abbott and they set to work to remove the need for a third party device, uglying up their little discs of loveliness. The result is Libre 2 and it works just like Libre 1 did with Bubble or Miao Miao.

Accuracy!? Tell me about the accuracy!

No blinding with science, here. If you want to hear about MARD and the likes then those figures are freely available on other good web sites, and some bad ones. For me, so far, I think it's as good if not better than Libre 1. I've tested it against my most trusted blood glucose monitor at different times of the day, when high and when low and it's pretty close, sometimes exact. Day 1 was a little "out" on the numbers but I was expecting that after reading about similar stories on social media. It did settle down after around 6 hours.

Diabox? Huh?


You're going to need it to take the data automatically, like a CGM. The app can be difficult to find but do ask for help on Twitter via #GBDoc if you're struggling or visit this tweet by my friend Louise. When it's working it'll look a little something like the image above. Your numbers might be different (better). The app allows you to customise alerts and turn off the ones that you don't want, or find the most irritating.

There may be other ways of turning Libre 2 into a CGM. You may want to explain those to me! Feel free by using the comments box below. I've heard of some sort of patches for the LibreLink app but I couldn't locate the info and I'm impatient to use new tech.

What about LibreLink?


You're going to need to keep that. If you're NHS funded then you're very likely to be sending your data back to your clinic via this app. So! Remember to scan! Or your clinicians will think you've given up or have departed this world. The sensors keep 8 hours of data so, how often you scan is up to you. I try to have a flash every hour or so. It also serves as reassurance that your Diabox numbers are tallying up with the scanned sensor numbers.

The leftovers?

I'm not mad, I'm just disappointed. Having used a different CGM recently, by a company who are taking packaging and hardware waste very seriously, it's a real blow to be faced with an "updated" version of this product and the waste is still the same as the original.


There it all is, including a previously worn sensor - for the sharps bin.

I know Libre 3 is on the way and I have high hopes for improvements in every dept, especially in left over waste. Don't let the planet down, Abbott! 

Should I get one?

If you're NHS funding eligible, yes! I know some of you are happily finger pricking, some don't like the idea of wearable tech on their bodies, 24/7, some might feel overwhelmed by the process of getting one and the new avalanche of data. I get all that. Here's what I've discovered:

- Less finger pricking means less burden. Don't buy into the idea that you'll never finger prick again. You will need to when you're having a hypo or need to check that your sensor is working accurately.

- You don't notice it. Some sensors sting for a while but pretty soon you'll wonder if it's still on.

- You're in control. Look at your data as often as you feel comfortable. If you're used to finger pricking 8 times per day then you are allowed to check your sensor 8 timer per day.

That's all I have to say. I hope you've found that quick review useful. Again, if you would like to know specifics then please get in touch.