40 Years a Type 1 Diabetic

 

Life moves pretty fast. If you don't stop and look around once in a while, you could miss it

Ferris (what a great movie) was right! Life can get pretty hectic at times. If you take a moment to stop and reflect, it can give you some perspective. It's difficult to get any time in December. It's always been a chaotic month for me, and this year is no different from the previous ones. I have new commitments through a busy job, social engagements, and the usual demands of Christmas. In the midst of all that, my coffee machine decided to die. What a disaster!

Diaversary

All that aside, it did occur to me that I am fast-approaching 40 years with type 1 diabetes. I've written about my diagnosis story many times, so you don't need to be worried about another repeat this year. I don't celebrate "diaversaries" for several reasons primarily because it's my bloody birthday on the same day and T1D gets plenty of attention already. 40 years is an inescapable milestone like the passing of every decade. It's been a long time since I wrote a blog post, so this seems like a good time to offload some thoughts about longevity with the pissing evil.

Diabetes Advocacy and Authority

I don't consider myself to be any sort of authority on T1D. I've spoken and written a lot about it especially over the last seven or eight years. That doesn't really mean a great deal. Anybody can write blog posts, publish videos and, if you make enough noise, find yourself behind a podium. You might use social media, too. That's a tremendous source of information still despite some platforms being a bit poisonous. Doing those things can be helpful to others and that's a wonderful thing. You could find yourself with the title of "advocate" or you might give that to yourself. Still, any number of posts, videos, talks, and years with T1D only makes you an authority on one thing; your own diabetes... and that might also be debatable!

I suspect a tiny number of you might be upset by the last sentence or two in the above paragraph. I'm sorry, don't take it personally. I'm sure you're very knowledgeable and you probably know a great deal more about type 1 diabetes than I ever will. That said, you can never know more about my type 1 diabetes than I do. That's likely the case for many other individuals.

Advocacy is a great thing! - I had to write that before the social posts begin about me targeting advocates. I'm not, I promise. Advocacy brings about change in many ways. It can help those less fortunate and it creates movements that will positively change diabetes care. If you consider yourself to be an advocate and you're pushing for positive changes, then do not stop until it happens.

Longevity with Type 1 Diabetes

Longevity doesn't automatically mean authority (or advocacy) either. It might mean increased knowledge due to more time to learn, understand and gain lived experience. But authority? I think that's a tag that should be reserved for professors, in a generalised diabetes sense.

We should also be a little more respectful of people who've had diabetes for any length of time. From Day 1 to Year 100, it's no picnic. If it was a picnic, it'd probably be pizza with a full sugar Coke. It seems that relatively new people to the condition are offered less time and acknowledgement than those with a few miles on the clock. Respect your elders by all means, but this default way of thinking is surely leaving very bright minds and voices in the shadows while the same tired narratives are churned out time and again.

I've written about the need to hear from different people before. Things have improved. There is more diversity in the voices heard these days. That warms the heart and I hope to hear more in the years to come. Diabetes (any type) care will shift and with that, we should welcome the thoughts and experiences of new voices.

Type 1 Diabetes Cure

I did a little sick in my mouth when I wrote the above heading. Like many of you with type 1 diabetes, I've read a lot of headlines, promises, and hints. What sits heavily in my gut are the charities rolling out the tried and tested method of attracting donations with cure research announcements. I don't speak for any of you readers, but I've had my fill of it. Even in my early non-Internet days with T1D, I was still exposed to charities talking up their incredible cure research. Here we are, decades later, cureless!

Another little paragraph to reassure charities. You're doing a great job in supporting folk with T1. Undoubtedly, there are instances of support that has improved the life of a type one diabetic. I'm not targeting your organisation, I promise. Please could we tone down the "money for a cure" stuff, just a little? If your research does get us over the line then I'll sing your praises like everybody else.

Since my diagnosis in 1984, I've hoped for a cure. Life with T1D is a lot easier than it once was, but I'd still crawl through fire for an immune system that didn't kill my beta cells. I've been very open about my cure thoughts before. Again, I don't think it'll happen in my lifetime. Our technology will make life with T1 less burdensome, it already is for some, and it'll likely continue in that way. That's not a cure.

Living a Good Life with Type 1 Diabetes

Some chest offloading has happened above. So, let's end on a positive note! with a few words for the diabetes newbies, and the crusty old diabetic gits like me.

Recently diagnosed with Type 1 Diabetes?

Hi, welcome to the club that nobody wants to join. Yeah, it sucks. Take a breath. This condition is not going to kill you unless you're really unlucky or really neglectful of it. Pay attention to your diabetes team, especially the DSNs (Diabetes Specialist Nurses - they know everything). You're going to need to attend your appointments, have some blood taken, your feet tickled and someone will make your eyes sting so they can take a look at your retinas. You'll need to accept those things and go along with any treatments you might need. 

You're going to need to administer insulin every day. I know, injections sting. After a week or two, you'll be less worried about that. You'll need to check your blood glucose, too. Don't fret about high numbers too much to begin with. Just correct those in the way you've been taught. If you're confused or worried, talk to your DSN.

Be cautious about advice on social media, especially advice around diet. Diet changes do not cure T1D. You might find some foods make it easier to keep your blood glucose in range. Let that happen in time. You'll find a way to eat what you want. Personally, I eat anything and everything. 

Diabetic Oldies

You don't need my words. You've come this far without my advice. Instead, I'll offer this to you: Be kind to newbies with type 1. They deserve your respect as you might hope for theirs. If you can offer some support and advice, then do so. Try to not jump in as the "big I am" or an authority with diabetes for X years. Stay humble and help out when you can.

Merry Christmas

Thank you for reading. I hope you'll all have an amazing Christmas and don't let diabetes stop you having fun.

All coffee donations will be forwarded to Action4Diabetes. 

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Changes

"Pretty soon now you're gonna get older." 

Bowie was right, of course. We all get old(er) and with the passing of time there are ch, ch, ch, ch, changes to face... maybe even strange ones! I've reached a juncture in my life when changes are happening rapidly. Today, I thought I'd write about a few of those and why change isn't to be feared. 

I've written about many changes that relate to my Type 1 Diabetes over the last four or five years. From the unnecessary fights to access technology to the arrival of a new family member, Billy - my Cocker Spaniel, and everything in between. It's surprising just how many day-to-day things can impact diabetes management, and that's just life. Life with diabetes, at least. Perhaps life events, the changes, are a part of the extra 180 decisions that we diabetics must make each day. The adjustments we make to stay well in the short and long terms are probably done without much thought for the "seasoned diabetic." I suspect those who have joined the club relatively recently will be acutely aware of the changes they must make to stay on the right side of the daisies. 

So, what's changing? Firstly, some background; A couple of years ago, I became very involved with a lot of different diabetes roles. It was great. I even applied for a position at JDRF UK because I loved it so much. It was (and still is to some extent) a positive way to work - paid or voluntarily. During the Covid lockdown years, I spoke at and helped out with webinars, I spoke about diabetes on BBC radio, and focused a lot of time and energy on helping GBDoc. Once we were set free of our homes, I spoke at and attended conferences, I helped to create and attend get-togethers, I launched a T-shirt store to support a children's diabetes charity in South East Asia - eventually joining their brilliant advisory group. I got to know the inspirational Jerry Gore who spoke with me on many occasions about the issues in Ukraine, resulting in every ad' penny and "Buy Me a Coffee" penny being donated to MSF. Six weeks of my life was spent supporting Jerry on a daily basis via several social media accounts (the adding of info and updates) - I'm going to talk about Jerry in more detail on another blog. He really is a great human...

...this is becoming a "look at what I've done" paragraph. I'll stop there. The point is to highlight just how easy it is to become "entrenched" into diabetes related work. I know from conversations with many of you that your goal is to work in diabetes. That's admirable, it really is. Some of you have created community spaces with that in mind and that deserves much credit. Running a community is a thankless task for the majority of the time. The rewards can be fantastic, however. 

What's changing for me in all of the above? An old friend of mine from Vilnius dropped me a message in mid-2023. He wanted some help to complete his new website and for somebody with "a gift at marketing through written words" to polish the published pages. I spent the late summer of 2023 getting his site ready. Job done. Seemingly, a good job! A very large Fintech firm bought his site, around 8 months later. My friend introduced me to them on a very informal basis. What followed was an interview. That went well. Two example tasks arrived. I completed the tasks over an afternoon. That went well. A second interview with two senior members of staff... yeah, you're getting the gist by now - That went well. Salary expectations? (went well) and a month later; one final video call. "We're very impressed by you. You have the job." So, that went well. 

The job means that I must hang up my boots in a few roles. My usual self employed role will now cease, and that's great because I'd grown tired of that job after 12 years of shoulder breaking work. You may have already read that I'm closing the T-shirt store. I will no longer be accepting diabetes mentees. I will no longer be attending mid-week events or conferences, although I hope The Spice Girls will allow me to have lunch with them from time to time. I'll be reducing my social media time. I will no longer have enough time to create videos, especially the Dad Chats to... interviews. I'm sad about most of those things because they are so fulfilling, yet the changes are necessary to allow for a sensible work-life balance.

Some things will remain! I will continue to be a voice for people who need access to technology and medicine for their diabetes. I will continue to admin' the Men's T1D Support Group. I will always try to amplify the work of Action4Diabetes and, so long as Jerry and Charlie want me, I'll remain a part of the Type 1 Advisory Group. 

Changes aren't always something to be fearful of. Grasp the exciting opportunities when they're presented to you and, as I've mentioned previously, we're only here once. Do good things with good people. 

Of course, the blog will still be updated from time to time!

My Buy Me a Coffee page will soon be updated. From June 30 2024, all coffee donations will be forwarded to Action4Diabetes. 

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Diabetes Awareness

From June 10th, you may have noticed a great number of posts on social media that contain #DiabetesWeek or #DiabetesAwarenessWeek or similar hashtags. I think that's a great thing. I believe raising awareness can only help people who live with any type of diabetes, and in many ways. I also think it's helpful to talk about your own diabetes experience. Sharing your story, how you manage things, your great CGM results and your not so great, your recent HbA1c, why last night's hypo was utterly miserable, etc, is a positive thing in my eyes. You may be surprised at who appreciates you using your space to share your diabetes journey. I certainly do. 

While it's obvious to me that the sharing of our stories, info, data, etc is a good thing, I find myself debating just how helpful we're being in raising awareness with "the unaware." In particular, how helpful are we being in regards to awareness when the stories are shared within our communities? A little, maybe? 

I think most type 1 diabetics will understand and share a lot of the frustrations of living with the condition assuming they're not recently diagnosed. The diabetic newbie might take a few years to fully grasp life with T1 and they might welcome the sharing of the well known details of life as a Banting Juice Botherer. For the rest of us? Well, we're not being made aware of much that's for sure. We might feel less alone and our condition may feel more normalised - great things. 

Awareness for the seasoned diabetic probably comes in the form of new discoveries, new information, new tech advances and the like. Beyond that, I don't think there is much to learn. 

I'm a great believer in using time and energy effectively. We're only here once. Wasting time and energy is such a.... waste. Unless of course you enjoy it. I think someone may have written a famous quote along similar lines! It seems to me that raising awareness with the unaware is the most effective use of time and energy during such periods as #DiabetesWeek. Lifting ignorance, which undoubtedly breeds much of the stigma associated with diabetes, and encouraging kindness and understanding from non-diabetics could be massively beneficial.

I was delighted to see that CBeebies, a British TV channel aimed at children, run by the BBC, are to air a story about diabetes, read by a certain Mr Norton. I don't think there has been a more effective form of awareness raising so far in this week. Our youngsters are a smart bunch. They absorb information like a sponge and often they haven't formed any judgements about others. To educate children seems like a tremendous idea. I hope the viewers carry what they learn through the story as they grow up. Effective awareness raising.

Could this work for adults? I think the answer is; possibly. Sadly. we live in a world of "alternative facts" laced with cinnamon cures and have you read my latest bookers? To get the right message across with stubborn adults seems like a difficult mission. It could just be time to approach those types differently - by not approaching them at all.

Whaaaaaaaat!?

A lot is spoken about stigma and how terrible it is. I agree, it is horrible to feel stigmatised. Periods of awareness raising should help to reduce incidents of stigma, shouldn't they? 

Often, stigmas arrive from the ill-educated, the type who research health conditions on Facebook, and believe that wrestling is a real sport. If they're an adult with no association to diabetes. Why would they feel motivated to learn? If they're an adult who you've met on social media, there is little to no chance of your explanations being read and taken on board, little to no chance of being offered a retraction or an apology. The majority of social media regulars cannot be wrong. They view being wrong as a weakness and how they are perceived on social media is vital for their fragile egos. Instead, you'll be abused, blocked, or they'll simply fall silent for a few days. An effective use of time and energy? I think not.

There are exceptions, of course. I was delighted to see a non-diabetic CGM user respond and thank diabetics for sharing their perspective on CGM use (why he probably shouldn't use it). Most of the exchanges in that case were polite. It might be that very polite conversations are the best (only?) way to communicate with others online. Who knew!?

Look, I know it's difficult to not call out the idiots online. I am guilty of doing so. Some of you do it so brilliantly and amusingly through sarcasm, but is it really changing anything? To repeat the same experiment and expect a different outcome.... oh, you probably know that one already! 

All the above said, I encourage you to raise awareness where you can. Children are great at learning and, if you're gentle, adults might accept some truths too. Don't be put off from sharing your experiences on social media because you read this post and thought "I'm not helping." You will likely help people you don't realise exist. If you can raise awareness in non-diabetic circles then please do. I think that's the best use of your time and energy if you want to make a real difference.

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Out Of Order

You might remember two of my earlier blog posts if you're a regular reader; Hobnobs in Hiding part 1 and part 2 are two of my more popular posts. If you've never read those or you'd just like a refresher then:

Hobnobs in Hiding Pt.1 is here

Hobnobs in Hiding Pt.2 is here

Those posts contain detail of my early diabetic life through school, my struggles to come to terms with my diabetes and the extraordinary lengths which I went to, to hide my condition.

Why am I revisiting those posts? Well, back to the present day, you may have noticed some controversy on Twitter surrounding a very tiny newspaper piece which was sent in by an anonymous reader. Liana tweeted a photo of the offending article but if you haven't seen it, it looks like this:

Alongside many others, I expressed my displeasure at using column inches for such a stigma breeding opinion. The Metro published replies to that opinion and that is perhaps some saving grace for them. However, should it have been given the time of day in the first instance? We can't assume readers pick up and read The Metro on consecutive days to hear both sides of the "argument" - Three responded to the offending comment.

Not that there is an argument to be had or any kind of debate, really. I strongly believe that anybody should be allowed to treat their illness in a public place when necessary but, as a Type 1 Diabetic, I am only going to write about Type 1 Diabetes in this post and the incredible dangers of causing people like me to hide their diabetes.

It is only relatively recently that I gained the confidence to talk openly about my diabetes and even more recently that I have gained the confidence to do diabetes "stuff" in public. Many have simply bitten the bullet and never hidden their diabetes, public injecting and blood glucose checking has never caused them any anxiety and they just crack on with things. Others have always had a problem in that regard and, to this day, should I need to inject in public rather than use an insulin pump I would have anxieties over the process, being watched and being judged. Reading through the Twitter threads following the Metro controversy, it became apparent that some are going through what I did in the 1980s and what I still would be going though over public injecting. 

Bathrooms, toilets, the WC, whatever your preferred term, appear to be the go-to place for many to hide away to do their diabetes necessities. Some even recalled incidents of being told or asked to use the bathroom to check their BG or administer a bolus - Hence the image used for this post. The bathroom might not be out of order but demanding that a diabetic use one to inject absolutely is!

Nobody with diabetes should feel ashamed to have the condition. I doubt that many of the diagnosed woke up one day and decided it would be cool to be a diabetic and actively tried to make it happen. Millions of people have diabetes of various types. It is incredibly common. So, why are we being shamed, stigmatised and made to feel like second class citizens?

The media.

Society still takes on board a lot of media influence. That might be TV, Internet or "newspapers" such as The Metro. Influence isn't as difficult as you might imagine. A few carefully chosen words and images can cause many to act and think in the most horrendous of ways. Sensationalism sells much copy, too. Could that be the reason why The Metro published the thoughts of "Shocked" the anonymous person from Tyne and Wear. With much attention and even reader responses, the following day, I wonder just how real "Shocked" is and just how truthful their little comment actually is. The British press are well known for the somewhat bending of the truth. It sells copy, remember? 

"Shocked" suggested an injection into the hip, too. I've injected in various places but never into the hip, have you? and the lifting of the skirt to the hip? I've never worn a skirt but I can only imagine that hip exposure is easier from pulling the top of a skirt down a few inches. 

Things don't add up with this little opinion piece but that's by the by. It's published and the easily influenced may feel the need to verbalise how shocked they are should they see a diabetic doing what they need to do in a public place. 

A person may then neglect to inject, pump, check their BG, flash a sensor or check their CGM in public from then on. Purposefully neglecting their T1D management, conditioning themselves to hiding it and potentially causing complications issues in the long run, hypo issues in the immediate term. A person who didn't ask to be a diabetic and who is just trying to manage their chronic illness to stay alive and well.

We talk about language in diabetes a lot. Sometimes, that's very valid. Sometimes, not really. In this case and in every stigmatising piece published or broadcast by media, I firmly believe it needs to be called out and corrected in the loudest ways from the most senior people working as advocates. Stigma and the discrimination it breeds is absolutely out of order. 

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Being Heard In Diabetes

A curious title? Perhaps. Hang in there and allow me to explain. This is going to be a positive-in-tone blog post about our voices as diabetics and how today, in 2023, things are far different and far better than they were only a few years ago.

Living with a long term condition, such as diabetes, is a huge burden for many to shoulder. The nuances make the burden different from person to person and in some cases individuals report no burden at all. It's a long, varied, spectrum - the burden of diabetes. What many have spoken about and in some cases shared experiences of historical events is that as a patient they rarely felt listened to by their HCPs. It's something I can relate to and also something that I've noticed a change with.

When I was a lad, it was all trees and fields as far as the eye could see. And a hospital or two. At one of those hospitals, I attended my diabetes outpatients appointments every 3 or 4 months. They were terrible. From threats of visits to the "amputation ward" to a single focus on the numbers in my blood glucose diary (most of which were lies anyway) I never felt heard, never supported and was once described as "an angry young man". Little wonder, you might think, that I decided to put my head into the sand and as an older teenager and young adult I would avoid attending clinic. 

Let's jump back to today; less fields and trees but still a hospital or two - a different hospital or two in a different area. What's different? Well, the general attitude of my HCPs is outstanding. Despite what you may have read, I'm a 46 year old adult and my treatment in the last few years has been excellent, respectful and kind. Compared to my treatment in the 1980s and 1990s it is a different world. I feel delighted to have this much improved care but also a little sad for younger me who went through years of very poor care. 

It isn't just in the clinic environment where things have improved. As diabetics, even those recently diagnosed, we are seen as experts of the condition. It's probably right to suggest that some know an awful lot more than others but eventually nobody will know more about your diabetes than you do. It's very respectful to view the person living with the chronic illness as an expert and it sets a great tone for communication from then on. As experts, our views and experiences must matter. You may have noticed many conferences which focus on our lived experiences and our views on diabetes and long may they continue. As we share, as we listen, we help others and we help ourselves. 

You may have also heard of the draft guidance for Hybrid Closed Loop, recently. Our views matter there! NICE are welcoming comments until 5pm UK time on January 31st - soon after this blog is published, so head over there and let NICE know where the guidance for HCL should be focused. 

Social media has become an incredibly powerful way to be heard in recent years, too. Diabetics from around the world share experiences, knowledge and their struggles. Many have cited the #GBDoc community on Twitter as transforming their diabetes for the better. I include myself in that as you probably know if you've read much of my blog before. Because of being heard by my peers, by HCPs and by some diabetes businesses I am able to live a far less burdensome life than that of just a few years ago. I'm also able to dedicate some of my time to helping others to achieve their diabetes goals. 

Although I live with various conditions, Type 1 Diabetes has dominated my time and energy for almost four decades, but never to such a small degree as today. Things seem set to continue to improve in most areas of managing the condition, too. Technology is advancing and even the cumbersome NHS are embracing it. Peer support has been given the recognition it deserves. The diabetic voice is a loud one and heard in almost all circles. Of course, there is much more which needs to be done to provide fantastic care to everybody living with diabetes in every country and not just in certain areas of the United Kingdom. 

There is never a great time to be a diabetic but 2023 is certainly a better time to be living in the UK with a wonky pancreas than most years gone by. Let's keep talking and keep pushing for the very best care for everybody, regardless of type.

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Diabetic Christmas

Ho ho ho! Merry Christmas. It's that time of the year again! Fun, food and excess are on the agenda for many, including the diabetic community. Whaaaaaaaat? But, you can't have excess, food or fun if you have diabetes, can you?!

If you were to pay attention to many media outlets, websites and the social media accounts - often claiming to be a diabetes expert, doctor, lifestyle coach or miracle worker who can cure you of diabetes and herpes (!?), then! you might be forgiven for believing that Christmas and diabetes do not mix. I can't and won't talk about your diabetes in relation to Christmas, that's a ridiculous thing to attempt because I know very little about you and your diabetes or how Christmas impacts upon you. The common use of "We" when diabetes advocates talk about the condition has never sat well with me. "We" suggests to me that a person is expressing the views or conveying the words of a community largely or entirely. In reality "We" refers to the person behind the keyboard or microphone and perhaps a relatively small number of people who have diabetes. It's totally alright to use the word "I" when expressing yourself, I promise. So, with that little rant off my chest *I* have a few things to say about T1D and Christmas.

T1D because that's the diabetes I live with. I'm a Type 1 Diabetic. 

Christmas has historically been a tricky time of the year for me especially those first few years as a recently diagnosed diabetic. Looking back, the avoidance of chocolates and sweets and pursuing precise carb counting seemed very reasonable at the time. Strict "control" was hammered into me and my parents. Of course, I stole sweets and chocolates and had strangely elevated blood glucose for several years at Christmas time. That advice and care seems a lifetime ago and indeed it is, I've recently passed 38 years with T1D. Today, there is no advice offered to me unless you count the unsolicited, largely nonsense, advice offered via the sources mentioned above. Christmas was a tricky time but no longer. Why?

Education has played a large part in understanding my own T1D. That has emerged through the lived experiences of my friends and peers and, to some degree at least, the official information published by recognised authorities on the subject. Alongside the education, the tools of 2022 are a million miles better than the tools of 1984. Come to think of it, the tools of 1984 weren't much of a thing at all. Finger pricking took an age and involved popping down to B&Q for a colour chart. Berocca style tablets had to be dropped into a tube of your own urine and injecting insulin involved borrowing a javelin from Tessa Sanderson and mixing two different types of Banting Juice together yourself. Definitely not the good old days and before 1984 it wasn't exactly a rose garden either. The tools of today are simply incredible in comparison. A tiny pump and a CGM are attached to me and they're helping me to effectively manage my blood glucose and live a much less burdensome life than in the years gone by.

Less burden, well managed blood glucose... it sounds like Christmas might not be such a stressy diabetic experience now. It's not for me. If I know the carb count, I bolus for it. If I don't know the carb count then I'll guess and correct any mistakes later on. The CGM alerts me when I'm high or low OR even when I'm within 15 minutes of a high or low event. I can relax and enjoy what any other person might do during Christmas. That never seemed like a possibility to me when I was young and I'd simply given up on the idea of an easier diabetes during my 20s and 30s.

Apparently, life begins at 40! My diabetic life has certainly gone through a renaissance since I hit 40, since I grabbed the little shit by the neck and took charge, since I embraced and accepted it, since I discovered a huge community of peers - dozens of whom are now really great friends, since I pushed for the technology which I need to lift the burden and improve the numbers which I get a little obsessed about from time to time. 

A Diabetic Christmas feels like... Christmas! to me, at least. I hope it feels like that to you and that you have a relaxing and fun time with the people you love. If you're struggling for any reason then please don't feel that you're doing anything wrong. You're not a bad diabetic! Help and support is available through so many avenues that it would be almost impossible for me to list them all. Instead, don't give up. Seek the help that you need and push for the support, information, medications and technologies that you need for you and your diabetes. Merry Christmas.

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Puppy Low

 ...oh, I guess they'll never know! Donny Osmond, I think. Apologies if you read the last blog or even heard about it on the grapevine. I decided it would be better to not publish that particular post in the interests of the personal safety and causing any distress to the victims of that particular group of people. Instead, a complete change of tone with a photo of Billy. Cute, hey?

True, he is cute and a burning ball of nuclear grade energy. As we know, using our own energy burns up that glucose pretty efficiently in most of us and so "Puppy Low" rather than "Puppy Love" seemed like a good title for this post. Sorry, Donny.

Billy arrived during the final week of my Steptember Challenge. I was already exercising a lot more than usual and chalking up a good number of hypos during the first few weeks of the month, at least. This new, very cute, energy sapper really threw a spanner into the works. Very short but high intensity bursts of exercise were sending my BG tumbling. Alongside a different waking and sleeping pattern, it's made for a difficult week with Type 1 Diabetes. I'm adjusting... kind of.

The experience made me wonder about how others cope with different variables thrown into the mix on a frequent basis. Shift workers certainly sprung to mind but I'm sure there are others with equally or more challenging lives. The solution to many of the challenges and life changes which we experience is, of course, technology. I know, a tweak of the Banting Juice might keep things in order, a couple more finger pricks per day might do the trick too. However, for those wild times, the big life changes, the why does my puppy keep on pooping moments, it seems like tech is the answer.

Some of you may have read about a lady who had waited a year for a pump clinic appointment, only to be refused funding at that appointment because of her sleeping issues. Yeah, I didn't know whether to laugh or cry either. Other stories were shared, including a particularly bizarre refusal tale which the lovely Lesley Jordan (from JDRF UK) shared. Take a look, you'll see that on my time line among all the puppy photos. Technology within diabetes should always be burden reducing for us alongside improving or maintaining our long term outlooks. My switch to a pump has vastly improved my T1D burden and, so far, the numbers all suggest that my long term outlook is in a good place. Where would I be without the pump? Struggling, for sure. I certainly wouldn't be trying to walk 250,000 steps while puppying. It could be easier, too! I could be looping and many more highs and lows would be reduced. I'll be a looper, soon enough, I'm in no real hurry.

So, while my hypos have been on the increase, I'm still in a very good place and a place which I can adjust to with the new arrival in the household. Others aren't so fortunate when it comes to accessing the technology which they need. Here is a link to a Twitter poll about hypos. The results are interesting! However, I know of at least two people who are in the replies with huge hypo numbers. Both are fighting for access to a pump and I have one question; Why?

Why are people with (sorry, my friends, no reflection on you) large numbers of hypos having to fight for access to a pump that will almost certainly reduce those dangerous and debilitating events? Are those numbers not raising large red flags and causing fast-tracks to Pumpville? I'm really at a loss. One hypo is a hypo too many and could lead to horrible things happening, including pre-mature death. To minimise those events should surely be a high priority and if many avenues have been explored without success then it's really time to sign off the pump paperwork.

We've seen these types of tech refusals before, of course, in the last 5 or 6 years since Libre hit the radar. It stinks of purse strings and worry about spending rather than offering the best possible care to diabetics - care which will ultimately reduce NHS spending on diabetes related complications. But what about NICE guidelines? What about them?! I don't know about you guys but, NICE don't live my life or manage my diabetes. I know what I need for my best care and to live my best life. Push for the technology which you KNOW will improve your life now and in the future. 

Billy agrees.

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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Too Much Or Not Enough

I'm a very vocal advocate of individuality in diabetes. I've certainly used the "YDMV" (Your Diabetes May Vary) acronym many times during discussion and when expressing a view. Type 1 Diabetes is often viewed as simply injecting or pumping insulin to manage consumed carbohydrates and I'm fine with that. I think if you don't have T1D, live with a diabetic or work in the world of diabetes then why would you know much more? It's not wrong, of course, but it doesn't really cover more than the very basics.

Inside of our world (assuming you live with T1D, live with a diabetic, work in diabetes, etc) you probably realise that it's so much more than carbs and Banting Juice. All the decisions that we make are well documented and there are likely lots more that differ from person to person. You might have your own unique decisions to make in regards to your diabetes because you're an individual, living your own life and managing your own diabetes. Diabetes mirrors life in various ways and certainly, for me, the differences between person to person is one of those ways.

I think I've stated the obvious and I'll get to my point and what the title of this blog means!

I've recently mentored a few of my peers in regards to their T1D, you may have read about some of that on the Twitter. The vast differences between those people and the hundreds of other peers who I've engaged with is apparent but one thing which crops up frequently is some of the advice given by HCPs - advice which I'm struggling to understand and it looks a little something like this:

"You're scanning your Libre too much"

 "You're not finger pricking enough"

"You don't need to check your CGM that often"

Those three pieces of advice might be right, of course. My own experience is based upon the "too much scanning" advice. It was likely well meaning! I had complained about injection burnout which may have been confused with general burnout. A high number of sensor scans may have raised a red flag and well meaning advice followed. It was the wrong advice because, for me, I wasn't scanning too much. Why? I live my life in my way as an individual. Scanning a sensor, when your phone is often in your hand due to work and other commitments, was not tasking me or burning me out. Perhaps if I was working 10 hours a day as a taxi driver or heart surgeon then the same number of scans would be difficult or even impossible and noteworthy as a cause of burnout. 

"You're scanning too much" doesn't take into account me as a person with my own life. It compares me to others and even the HCP's life experience and what they believe to be the right amount. I stated why I scan as often as I do and why it's not a problem and we moved on. I don't fear speaking up during a consultation but I do know that others have issues in that setting and they feel anxious about doing anything unless they're nodding in agreement with an HCP.

"You seem to be scanning your Libre a lot. Is that causing you any problems?" might be a better way to address that red flag. But who am I to talk about communication!? *wink*

The same could be said for the other two pieces of advice, above. To notice something a little unusual is right and great care and it should be questioned but never judged or followed with a sweeping statement. "Too much" might be just right, "not enough" might be just right. Great care considers individuality and works with that. Ask questions, talk to your patient, get more information.

The above three pieces of advice might seem innocuous and to some that might be right, to others it might pile pressure on to an already over-spilling plate of decisions and burden and stress. That's why I'm very vocal about HCPs treating us as individuals in every respect and why it makes great sense to treat each other in the same way.  

 As you might have seen, a conflict has broken out in Ukraine as Russia has invaded that country. The scenes on TV and on social media are horrifying. What can we do? Well, I don't think there is a wrong way to help if you donate to charities who are active in helping the people of Ukraine. I support many charities but one which has always had my heart is MSF. Medecins Sans Frontieres translates as Doctors Without Borders. When it comes to the health of others in disaster areas, war zones and the like then I think we all have a duty to do what we can to help and help those who directly help! such as MSF. With that in mind, all donations to me via Buy Me a Coffee and all the pennies generated through the ads dotted around my pages will be donated to MSF. I will make up the difference for the fees taken by PayPal and Buy Me a Coffee. That will run until further notice, no time frames and possibly until Ukraine is a free country again. Thank you for reading my blog. 

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The Path To Pumping - Pt.9 Trials & Tribulations

Do you remember my last blog post on The Path To Pumping? I titled that one "Destination" as it appeared that we were coming in to land. We are! We still are! Please remain seated until we have reached the terminal, etc.

You may have already read on my tweets, I've had the call! The call to confirm my NHS pump funding. It was expected to go through without any problems but it was still nice to hear the words. I'm already pumping, as you probably know, since August of 2021 but my excitement was still very real. I can only imagine how MDI users must feel when they've been waiting for confirmation. My excitement stemmed from having one less thing to worry about. What if I was refused? My next avenue was to talk to my old friends in the media and that might've been a messy experience for so many - who are trying hard to open up access to technology for more people. I'm so glad that wasn't necessary but, a week after the call, I've had time to reflect on what has been necessary to get to this position. You might already know! I've documented each step on The Path To Pumping since day one. Shall we take a quick look back at the tribulations? 

Let's start with the positive refusals. Positive refusals?! Perhaps you've experienced the "You're doing great, you don't need a pump" line? You may have even responded with a counter-argument as to why you need a pump. Did the NICE criteria wall then appear? Yeah, same. And that happened on a couple of occasions. I have a lot of sympathy for HCPs who are under pressure from all angles. I'll even open my own blog to them to allow their voices to be heard by a greater audience. I want the bridge between them and patients to be a strong one. However, I'm rarely accepting of situations which I know are wrong, could be changed or improved. My use of MDI was a far inferior therapy compared to pumping, I had the hard data to prove it and a long, long list of QoL reasons to back that up further. Positive refusals were not going to wash.

The New Year was a busy period of pump "chasing". I spent countless hours writing emails to MPs, charity advocates, commissioners and even spent some time talking to a rather senior chap in Westminster. Following my emails, phone calls, meetings and letters the response from every avenue that I explored was sympathetic and understanding of my necessity to be NHS funded for a pump. It was encouraging and, looking back, I suspect a great number of influential people will now know a lot more about Type 1 Diabetes than they once did.

Finally, a new hospital, a new consultant, a new attitude and a new outcome. The best Diabetes appointment of my life because I was listened to. HCPs might be reading this and thinking "We all bloody listen". I wish that was true. Despite my visual impairment, I am very tuned-in to body language, responses, and general tells of disinterest which can come down to a simple change in voice tone. I played poker with some incredibly bright and successful people. In time, beyond the game, it teaches you things about human beings. Some of those things, when you learn what to look for, are obvious. Humans give away information all the time without needing to talk and the stressed and tired HCP isn't great at disguising their truths. So, the greatest appointment ever? I was listened to, asked questions which were relevant, noticed I was being observed carefully and understood when I offered my experiences and views. It must feel incredible to know that you've improved the life of your patient, that you're both on the same page, that you facilitated the progress in their care and use of technology. That is surely the job of an HCP; to improve or maintain the health of a patient? Are you really doing that if you block access to technology?

And here we are, some 9 months after putting a foot on The Path. Approved. The tribulations are seemingly over and the trials are starting. The photo at the top of the page is some Omnipod gear which my lovely DSN sent to me. She was kind enough to offer to squeeze me into a pump start-up appointment. I declined because I know how busy they are right now. I'll take my turn and that'll probably be later in summer. I'm already pumping, after all! I think it's fairer to give that space to somebody who needs to start on a pump more urgently than I do and fairer on the HCPs who are struggling to manage with the demands of patients. 

I'll try out the Omnipod stuff, probably breaking it along the way. I have also been approached by other pump companies to try out their stuff. That's likely because I have some social media presence - I get it. And I'll try it! I've already played around with a few new things. The future looks very bright. 

During The Path To Pumping, I have been approached by many Type 1 Diabetics who were in similar positions or simply interested in how to start the conversation in clinic. I can't count them all, I didn't keep a tally, nor am I interested in open praise, but I do know that several are now approved for pump funding or still pushing for it. That makes my heart happy because I know the huge improvements to my QoL that pumping has brought. I hope that you guys experience a similar improvement. Still being refused? Well, you know your own health better than anybody. If you're sure that a pump is the way to go then do not accept "No" or any other bullsh*t refusal. There are ways. It can be done.

To close this blog post; The battle for access should not have happened. The "cliff notes" above only touch the surface of the work I have put into obtaining pump funding. Pump funding which was right for me, a person living with T1D, a person who probably should've been listened to more carefully, situations and health considered better, evidence read and believed, and above all an acceptance of what the future holds. Diabetes care is evolving and technology is playing a bigger part than ever before. If you're pushing tech as the next step in Diabetes care then refusing it at any point cannot be without good reason. Patients are not guidelines or criteria.

As you might have seen, a conflict has broken out in Ukraine as Russia has invaded that country. The scenes on TV and on social media are horrifying. What can we do? Well, I don't think there is a wrong way to help if you donate to charities who are active in helping the people of Ukraine. I support many charities but one which has always had my heart is MSF. Medecins Sans Frontieres translates as Doctors Without Borders. When it comes to the health of others in disaster areas, war zones and the like then I think we all have a duty to do what we can to help and help those who directly help! such as MSF. With that in mind, all donations to me via Buy Me a Coffee and all the pennies generated through the ads dotted around my pages will be donated to MSF. I will make up the difference for the fees taken by PayPal and Buy Me a Coffee. That will run until further notice, no time frames and possibly until Ukraine is a free country again. Thank you for reading my blog. 

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Representation

 Diabetes in the public eye has to be a great thing, right? A diverse representation of all types of people can only reduce division, hate and normalise disabilities, including Diabetes.

Coronation Street got the Type 1 ball rolling a few weeks ago and last week Pixar joined the Diabetes party with a character in their Turning Red movie, seemingly wearing Diabetes devices. Both great things for Diabetics, particularly the Coronation St character as it appears they'll be focusing on the condition more than the Pixar movie's passing nod towards it. I hope the Coronation St character will be allowed to develop in the coming years and the difficulties of living with T1D are brought to the public attention, at least the public who still watch that particular soap opera.

Beyond the recent TV and movie rep', I've been thinking about others who have proudly acknowledged that they have Diabetes. In the mid and late 1980s, as a young boy, my only "Celebrity Diabetic" was Gary Mabbutt. Gary played for Spurs and was capped by England and he is still well known in Diabetic circles today, particularly football fans. That was it, for me. I'm sure there were others but Diabetes was a much less visible condition beyond the Diabetes clinic at the hospital.

Technology has made Diabetes a visible, talked about thing. It's forced the hand of Diabetics to become that bit more public about their condition. A pump, CGM or even a small Libre disc are physical signs which are often hard to hide compared to the sneaky finger pricks and injections, done covertly or behind closed bathroom doors. Perhaps we have more to thank technology for than simply improving the management of our condition? It's out there! WE are out there!

Not everybody uses technology, of course (despite what you might see on social media). Perhaps some will still hide it because years of conditioning can take a long time to overcome. So, representation is important in other ways. Representation by the masses (our peers) is increasing and I believe that is the most important way to have Diabetes seen by the general public, a general public which still struggles to understand types and which holds ideas of Diabetes, that are ignorant and harmful, firmly in their minds.

How you represent is individual to you, your life and your comfort zone. I speak and write about it in various places and I choose to do so using what I consider to be an effective method. Your methods might be different, of course. What is important to you in regards to Diabetes is almost certain to be different to me and others, too. A brief look through Twitter will reveal a variety of subjects, pushed as hugely important and they may indeed be that to a minority which could include you, or other aspects of Diabetes might be higher on your agenda of importance. What is important for us all is to talk about Diabetes, type if you wish, specific things relating to it if you wish, openly.

Social media is an easy place to air views and share your experiences. It's an easy place to represent D. If that's your comfort zone then embrace it and go to town! It can have a surprising, positive, effect. I'm astounded at the positive comments which have been sent my way in the last couple of years since growing a social media presence. All I do is share my experiences and views while engaging with my peers. 

We don't always agree, either! and that's an important part of life, too. To accept that others have their views and opinions on their own condition and health and subjects relating to it. It's important to not turn those times into arguments, to not bully or name-call or reduce yourself. The people who do that are not helping to represent. Using aggressive, "industrial" language does not help to represent - Do you want your children to read frequent use of the F word? Your choice, of course! I'm far from a prude and I have certainly used foul language and a harsh "tone" before. Within Diabetes, I try to keep it family friendly. That's not because I'm focused on engaging with families. It's because it's much harder to alienate or offend anybody of any age when the language is PG and the tone is soft.

I encourage everybody living with Diabetes to share their views. Talking about it is great representation for your peers and yourself. It's normal to have a health condition or a disability. Don't hide.

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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Diabetic Oddity

Bowie was superb, wasn't he? Even several years after his death, his coolness only seems to increase with the passing of time. And look at his amazing eyes! - Obviously, I'm going to think that they are cool. I'm not here to talk about Bowie and what a great song Space Oddity is. That's not very Diabetesy. I did hear that song on Spotify, today and when Bowie sang "This is Major Tom to Ground Control" it brought about thoughts of how we describe Diabetes to others and how they ask questions about it to us.

Major Tom/Bowie went on to describe leaving his space capsule and entering the void of space. Bowie was a tremendous lyricist and wordsmith, of course but I wonder if he would've considered a hypo as "floating in a most peculiar way"?

Perhaps he would've come up with a description which is beyond most of us.

Where am I going with this blog? I've made comments about this previously. That the words we use to describe Diabetes, our Diabetes, cannot ever be challenged. I describe myself as a Diabetic or a Type 1 Diabetic. I take blood tests. I try to control my Diabetes.... Oh! Ground Control! Perhaps I'll stop trying to ignore Bowie in this blog and just carry on referring to his lyrics. 

Control is an interesting one. It seems to bring about great angst from some while others use it freely. Myself, I'll use that or "management". There are two reasons for that. Firstly, I'm of a vintage that is not upset by the words used by others unless they are used with the intent to cause upset or are used through hate. Secondly, sometimes, elements of MY Diabetes can be controlled. If an HCP asks me "How is your control?" or "How is your blood sugar control?" my first thought isn't how dare you use 'control' for a condition which isn't controllable! I'm not going to stand up and walk out or aggressively correct them. Instead, my default thought is that they're trying to get a basic grip on how I'm managing, lately. Lots of hypos, hypers, 100% in target, everything in between... something that can be improved? Great! If not, we move on to how magnificent I am. I accept "managing" and "control" in the same way.

I firmly believe that we shouldn't be challenging singular words in such circumstances. Reviews or appointments can be stressful occasions for us, as patients. I think our focus should be on gaining a positive from that 10-15 minute time slot and not leaving the clinic, feeling unnecessarily tense. HCPs are advised and trained on how to interact with patients but they're human beings. Human beings make mistakes sometimes especially after years of using some words which are now considered "No-Nos".

That doesn't mean we should ignore or forgive absolutely everything. I think if your HCP insults you or puts you down, if you're made to feel like a naughty schoolchild, then that's absolutely the right time to be vocal and complain. 

What is correct and not correct in regards to how HCPs interact with us is personal to you. Your own offence is completely valid, of course. I do think it's time that we stopped indicating what is right or wrong, in regards to language, to people living with Diabetes, though. There is no right or wrong. You don't need to change the words which you've been using forever when talking about your own condition. We have enough on our plates, in my opinion. Leave the "correct" way to talk about Diabetes to your overworked and exhausted HCPs. Overworked and exhausted after working in hotbeds of Covid-19 for 18 months - Perhaps something to consider when the next HCP puts a foot wrong.

One thing which I do struggle to control is my coffee addiction...

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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Your Words, Not Mine

It's been an interesting couple of days in the world of Type 1 Diabetes, from my perspective. Last weekend, I enjoyed the Connect One UK online conference more than I anticipated. Although I was select in the parts of the conference which I viewed, and that may explain why I was left feeling positive towards the event, I felt it was refreshing to hear individuals talking about their diabetes, or their association to it, using words and phrases which are not always heard at diabetes conferences. In particular, it was lovely to hear Type 1 Diabetics referring to themselves as "diabetic" or "a diabetic". It was lovely because it felt genuine, it felt like their words, it felt unworried, unsanitized! but in a great way!

Discussions followed, as they generally do following a conference, "Diabetic" was in use again in some quarters and I'm delighted. I'm delighted that individuals who manage the condition are talking, engaging and using their words to describe their diabetes and related experiences.

Language Matters has been a well used phrase and hashtag for several years, now. I agree with it. I fully agree that language matters, as attitude matters, as being respectful matters and as every aspect of being a decent human being matters. Sometimes, we'll likely all fail on those "matters" for whatever reason. We're only human and we all make mistakes with the words we use and the attitude we display towards others and that includes HCPs.

So, fast forward a couple of days and I've been discussing an interview with another person who lives with T1D. He's certainly well known to the general public but we're new to each other. Before we discussed the potential interview, he asked for some examples of my involvement with the world of diabetes. Fair enough. I don't keep a list of "things" that I've done which involve diabetes. I remember things! or, at least I thought I did. It turns out that I've stuck my oar into more than I realise. After a search around, I sent some links and more information. I'll wait to see if the interview happens, fingers crossed.

That little digression does relate to the subject in this blog. I found this piece which I wrote in 2018 for Diabetes Voice; The Impact of Language in Diabetes 

That's right, that's me looking sharp in a suit. After reading through my words of 3 years ago, I've come to the same conclusion; That there are far more important aspects of my healthcare than the words used to describe my diabetes, my management of it and its current status. To some degree, attitude pales in comparison to the importance of my health. I'm a friendly chap, generally, I like a chat and try to get along with everybody I meet but I'd rather a horrible, angry, heart surgeon saved my life than my best mate having a crack with a penknife... I'm rambling, sorry.

We're all different, I know, I get it. Perhaps my stance over Language Matters is soft because of the longevity of my T1D and the serious complications which I've battled along the way. Others react in a demonstrous fashion over words and that's fine. I respect that stance. It can only serve to reduce negative experiences to patients in the clinic. 

How much we, the general public, the PWDs, the diabetics! need to be reminded of Language Matters is something I'm beginning to question. To keep the subject relevant with HCPs is something I agree with. To push it via social media again and again? I wonder if it's more a case of Content Matters in some diabetes circles.

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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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

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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