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!

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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!

BUY DIABETIC DAD A COFFEE HERE

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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!

BUY DIABETIC DAD A COFFEE HERE

Prefer PayPal?

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Part 2 is Available Here