Contented

 

It's been over 3 months since I slapped my fingers around a keyboard and published a blog post. A quarter of a year seems like a long time. 3 months from today, we'll be in 2025 - a quarter of a century already gone! It seems like yesterday when the world was worried about the "Y2K bug." We survived, of course. Later, we survived conflicts, a pandemic, and a lettuce as the UK Prime Minister.

You're probably not here for an overview of the last 25 years, but I am going to talk about the last 3 months and how it's impacted my T1D. Then, a look at what the future holds.

In June, I wrote the post Changes in relation to what was about to begin - a new role in a galaxy far, far away from Diabetes. It's been fantastic. Several friends have asked "why the change?" and they enquired about the work. I did mention some aspects in the Changes post however, the change just landed in my lap. I did pursue the opportunity when it was presented to me, of course. If I didn't I wouldn't have been offered the job. The job? I write content. Some of you are really great writers with positions in the media and journalism. I can't claim to be that talented, although I do feel comfortable with the subjects I work on and the briefs sent to me.

So, how has that affected my T1D? A lot is said about how physical activity impacts blood glucose. That usually makes sense to me. Although, we're all different and I don't believe a "black and white" direction for advice is right in that area. Little is said about how mental exertion can move the line on a CGM graph. I've always been aware of it to some extent from previous roles, education, and just concentrating really hard on something simple like a family quiz. Mental exertion is undoubtedly lowering my blood glucose.

Right now, this recently rediscovered reason for a hypo isn't impacting me at all. Hybrid Closed-Loop is the techie friend that has my diabetic back. In addition, I work from home. Taking a break isn't an issue, allowing me to grab snacks, sweets, coffee, etc before a low becomes serious. Without the tech, the alarms, the suspended insulin, day-to-day work would be much tougher. 

Of course many of you don't have HCL. Maybe you don't want it or you're patiently waiting your turn to have it signed off. It's probably true that many of you have to deal with hypos at work - in an actual workplace, rather than at home. I have huge admiration for you in either or both situations if you're battling frequent hypos while trying to do your bit for society.

Greater tech access is inevitable on these shores. The constant push and advocacy from strong voices will undoubtedly open the doors for all with T1 in the coming year or two. I think that's a massive step in the right direction for diabetes care. It'll reduce instances of complications and offer a much better long term outcome for Type 1 Diabetics.

Do we (as T1Ds) need more? 

Yes, I know, a cure! Wouldn't that be lovely? I really hope for the best in that regard, but hope is all it is. The heart wants it desperately, the brain says to not give much attention to pipe dreams. 

The answer? No.

As tech develops, perhaps even a true "artificial pancreas" hits the market, then the answer will change. Until then, if you have the best care, medicine and tech, then that's as good as it gets. 

I do realise that HCL isn't for everyone for a plethora of reasons. I hope that where you are now feels like as good as it gets, or tech and meds advance soon for you to put you in that place.

Pipe dreams can become reality in time. It might be a cure, or it might be tech so advanced that it's almost the same thing. I have no doubt that one of those things will happen eventually, probably the latter. Hang in there if you're struggling frequently. 

When we get there, diabetes posts, communities, and content will likely drop off the radar in areas that no longer have the need for them. Perhaps if you've been paying attention, you'll have already noticed that decline beginning. In some ways it's a sad thing. 

There are so many great people with big hearts involved in diabetes socials, sites, charities, etc. As the years go by, as tech becomes our crutch, those entities will be less in demand. There will be no need for that type of content.

 From June 30 2024, 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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Acceptance

It's not easy to find an image for most blog posts. What can adequately represent diabetes in a single photo? I mean, apart from a train crash or a person screaming. Insulin seems to cover the subject pretty well. I think most people understand what an insulin pen or a vial of Banting Juice means, these days. 

It gets more difficult (to choose an image) when talking about the nuances of the condition. I think that's especially true when referring to the mental aspects of diabetes. The screaming person might work? Perhaps not for the subject of todays post; Acceptance. 

The seed for this post was planted when I read through a thread on social media. An exasperated person exclaimed "Have I got to do this for the rest of my life". It struck a chord with me, I've been there, I've said the same openly and privately over the last near 40 years. 

The first time the daunting reality of type one diabetes gave me a slap in the face was soon after my diagnosis. I had been home for only a day or two when I questioned how long I'll need to have injections for? The answer, from my mum, was truthful - forever. I've written about that story previously, you may have read it if you're a regular reader of my blog posts. Over the years, and probably following momentous diabetes events, I silently consider the condition again and how it is "forever." 

Those events? Complications are pretty high on the list. Generally, for me at least, T1D is 99% tedious, 1% terror. Complications are terrifying. If you went to your eye screening and came away with some news that was less than good, and you didn't have a little moment, then I question your humanity. Of course, there are many other examples including kidney problems, heart, etc, but you get the gist. Alongside coming to terms with the burden of this condition, diabetics have to somehow find an acceptance of what might never happen, or what is already happening because of it. Complications really do suck. 

I came to an acceptance of my T1D after a very long time. It involved; not hiding it, talking to my peers, ranting on social media, and learning all I could. I even have a Type 1 Diabetic tattoo. I think it's pretty safe to say that I'm alright with this condition being with me forever. "Alright" doesn't mean happy, far from it. I would give all I have to be free of this pissing evil. I know that's unlikely in my lifetime and I don't build up my hopes of a cure. 

So, the thread. I recognised the frustration and fear and anger in those words. I recognise how it is all amplified when a doctor, or a badly worded letter, has news that something might be wrong because of your diabetes. That background music is suddenly the dominant noise. 

I don't know if acceptance of complications or the prospect of complications is an easy thing to achieve. How do you accept what is terrifying? My own eye complications have been stable for a number of years now. The visual impairment that I was left with took several years, and some poor life choices, to come to terms with. Today, I'm a "it is what it is" type but, just like the disease that caused my VI, I would give all I have to be free of it and to have my old sight restored. Acceptance, being alright with it, does not mean happy with it.

Today is "Blue Monday" - the most depressing day of the year by all accounts. It seems appropriate that blue is associated with diabetes, a condition that undoubtedly causes depression in so many.

If you were affected by any of the words in this blog post, by diabetes, complications, or any aspect of your life today, tomorrow or any day then please seek out support. 

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I Was Feeling Complicated...

...I was feeling low. Annie Lennox is bloody brilliant, isn't she? The song is Thorn In My Side by Eurythmics, and you'll probably be unaware of it if you're under 35. Put it on your Spotify while you read this post.

This post is about diabetes related complications. If the subject is too difficult for you, then please come back again for another post in the future. Normally, I wouldn't bother to put a trigger warning like that because I'm a "warts and all" diabetes blogger. However, I understand that the subject can be upsetting for people who live with diabetes and their loved ones because it is so utterly dreadful. So, if you're still here, let's begin.

The story of my own diabetes related complications has been well documented in this blog and across my social media accounts. If you're unaware, and in short, I suffered severe eye complications from around 2010 - 2012. I had several surgeries and I spent a good deal of those two years living in near blindness. Things improved and although I am "registered as blind" I am far from it. The reality is I have a visual impairment that does impact my day to day living... actually day to night living, my night vision is shocking, and I need to wear specs to read and write incredible blog posts such as this one.

As I head rapidly towards 40 years with T1D, I count myself lucky to only have had that experience of complications. Oh, if I could change history and not go through that then I absolutely would! I count myself lucky because I know many others who have been through more, much more, much worse and they keep on fighting with lots more day to day (or night) issues than I have. Also, as I've aged (matured?) with my eye complications and embraced the lived experience of others with T1D, I have come to realise something:

I was wrong.

An admission of being incorrect is a tough one to express. It's rare to read of anybody back-tracking and changing a firmly held view. I don't know why, as human beings, we're so proud about always being right. I mean, just by pure chance, sometimes you'll be wrong... right? Anyway! Why was I wrong? Well, for several years and up until very recently I've harboured a feeling of self-blame for my eye complications. I may have even written about it a few years ago, but then I never touched on the subject again. Pride? Over time, and with more experience, I've come to realise that I've been wrong to shoulder the blame for what I went through.

I'm not going to shift the blame for my complications to another person. Why it happened, is down to one thing; Type 1 Diabetes. After that, the reasons don't really matter. History cannot be changed. Yet, for a long time I put the blame on myself, the missed appointments, literally running out of an appointment for laser surgery, hiding away and pretending it wasn't happening. 

To run away from you

Was all that I could do

Annie was probably referring to an ex-lover. For me, to run away from those scary appointments felt like my only option, the easy option, and I was an adult. Nobody was forcing me to attend. Indeed, nobody would chase up missed appointments or why I'd scarpered part-way through laser surgery. Why would they? DNA (Did Not Attend) is a common thing in the NHS and the reasons for that can be complex rather than simply the patient just doesn't care about themselves. If the patient doesn't care about themselves, surely they are in the greatest need of the soonest care? A discussion or a blog post for another time, perhaps.

I should've known better

But I got what I deserved

Was exactly my thoughts for many years. I was told by enough healthcare professionals. Yet, "told" is something we experience a lot when attending our diabetes reviews.

"You need to get your A1c down"

"You need to have less hypos"

"You need to check your blood glucose more often"

The list is long and, if you have T1D, you've probably got your own extensive list of "tolds". 

Modern care has come to realise that the harsh approach, the scaremongering, doesn't work very well on the whole. I agree. It clearly didn't work for me having been subjected to scaremongering from an early age. Perhaps if all of my diabetes history was analysed, those early years were the seeds planted for my mid-life complications harvest. Who knows? Again, I'm not shifting blame for my complications to another person or persons. Diabetes got me here, my own immune system did the dirty work. What followed was a war and in every war there is suffering - my left retina took the brunt.

Complications are indeed a thorn in my side, today. Hopefully, they won't be for you. If you do get some bad news, I have some words for you:

It's not your fault. Don't put yourself through what I have for a decade.

Complications treatments are as good as they've ever been.

Be brave. You're only here once and you matter.

Things will get better or settle down. 

Seek support. The NHS might offer it to you - take it! 

Talk and share. The huge #GBDoc community has more experience than any clinic. We got you.

This post was tougher to write than I expected. Thanks for giving me a few minutes of your time.

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Keep Me In The Loop

Type 1 Diabetes tech can advance pretty quickly. Even access to it, in some areas, has greatly improved in recent times and for that we have much to be grateful for. Of course, there is far more to do than has already been done. There are many who struggle to access some very basic things and, in the UK at least, a yawning disparity in care is obvious between areas. If the playing field will ever be levelled is debatable. With my most optimistic hat on, it seems certain to be a drawn process, as with many aspects of NHS care.

Yet! We continue to advance diabetes care in the UK (probably beyond) thanks to a little thing called "Peer support" Actually, it's not little at all. In terms of numbers, the peer support groups both online and in person, have grown enormously over the last few years. Indeed, you'll see diabetes-care-engaged HCPs communicating with these groups, recognising their importance, referring patients, etc. 

For me, it's not little at all in terms of the impact on my health and life.

Back in 2017, I had recently reached a "milestone age" and after going through a great deal of diabetes related issues I thought it was time to get to grips with my T1D. The story is long and rather dull, in short it involved creating social media and forum accounts, sharing, learning and trying to be the best diabetic that I could be. I anticipated that I'd be largely on my own, that I'd pick up a few useful tips among the keto scams and cinnamon cures. I was wrong, I was definitely not on my own.

If you arrived here via Twitter, there is a great chance that you already know about #GBDoc. It is a tremendous community, run entirely by volunteers who just want to learn and stay well as much as everyone else. I mention the hashtag often and I do promote the community when the opportunity arises. I don't run it or have any influence in what happens. I'm a volunteer, learning, trying to stay well and hopefully assisting others in the same.

I try to give as much as possible to my peers within #GBDoc because since day one I have been inundated with kindness. Sure, as with any community, there will be disagreements and people will come and go. Yet, the core of #GBDoc has remained and from everything I've read and learned, I believe the community has evolved into a more inclusive, community driven, place rather than the individually run entity it once was.

In the last six and a half years, I have met hundreds of community members in person. I'm very likely to meet hundreds more. Each time, it was a delight. I love to learn about others, to talk, to laugh and to share experiences. From the hundreds, I have close bonds with many people who are now incredibly good friends. If you enjoy socialising then #GBDoc can certainly improve that aspect of your life!

Let's focus on the direct impact that peer support has had on my health. In 2017, I was finger pricking and injecting and that was the extent of my T1D management. Today, I write this blog post as somebody who is using Hybrid Closed Loop to manage my diabetes. Essentially, an insulin pump is communicating with a CGM to make frequent adjustments to my insulin dose without my input, aside from entering carb counts and other very minimal-effort engagements (see the photo used for this post). If you don't have T1D, your pancreas does a similar job, but this is not an artificial pancreas. I'll blog more about HCL in a week or two. 

HCL is the latest development from my accessing of the peer support in #GBDoc. Before that, there have been many other examples of help from the community members. Items include:

- A donated insulin pump

- Many donated insulin pump consumables

- CGM transmitters

- CGM and Flash sensors

- Ketones test strips

- Glucose drinks

- Sweets, chocolates, lots of coffees!

The last one might not be hugely impactful on my diabetes management, but it helps and they were much appreciated! I didn't ask for any of those items. Various individuals took it upon themselves to offer their time, energy and money to help me. The physical items are one thing, the enormous amount of education is something else. There really is no better place to learn about T1D than from those who live with it. Every little snippet of info, every little trick, hack, guidance and signposting is a little bit more ammunition to go to war with. Over the years, I've absorbed it all. It feels like I've studied for a medical degree in some respects.

Of course, I do what I can to give back. "Pay it forward" is the often used term for a good deed. I won't list my involvements in diabetes related initiatives in this post. This post is about the others who do wonderful, kind, things for people without really realising the positive impact it can have. You are saving lives, prolonging lives, improving lives. I don't write that sentence flippantly. I truly believe it. You may never be officially recognised, but I see you. Thank you.

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Type 1 Diabetes and Sight Loss

 

I am often asked about my sight loss in relation to my T1D. How it came about, how I adjusted, acceptance and advice are often subjects of conversation and I'm very happy to discuss. Complications are a thing for some T1Ds and we shouldn't avoid the subject. Here's a little about my diabetic retinopathy without too many gory details. 

As a person living with type 1 diabetes and sight loss, my journey has been filled with challenges and triumphs. I was diagnosed with type 1 diabetes at the age of 8 and experienced some eye complications due to high blood sugar levels at age 31. Eventually, my eyesight started to deteriorate, and I was diagnosed with diabetic retinopathy.

The diagnosis was devastating for me. Losing my sight meant losing a part of myself, and I had to come to terms with the fact that my life would never be the same. I had to learn new ways of doing things, like cooking, cleaning, and getting around. It was difficult, but with the support of my family and healthcare team, I learned to adapt. I haven't lost all of my eyesight, but enough to be registered as blind. That feels like a very strange thing to type because I'm not blind. If you've met me, you've probably noticed that I can get around pretty well. Indeed, my sight is as good today as it's ever been since my retinopathy diagnosis. I prefer "visually impaired" when describing my sight loss as that's more accurate. Although, some hear visually impaired and automatically assume totally blind - for me that's far from correct. 

One of the biggest challenges I faced was managing my diabetes and my vision loss. I had to learn how to measure my insulin doses, check my blood sugar, and administer my insulin injections without relying on my sight. It was a lot of trial and error, but I eventually found a routine that worked for me.

Living with sight loss and type 1 diabetes has also taught me the importance of self-care. I've had to make my health a priority and take care of my body in ways that I may not have otherwise. I make sure to exercise regularly, eat a varied diet, and keep up with my doctor's appointments to prevent any further complications.

Despite the challenges, my journey has also been filled with triumphs. I've been able to pursue my passions, like diabetes advocacy, writing and public speaking, and inspire others living with sight loss and diabetes. I've learned to appreciate the little things in life, like the sound of birds chirping or the feeling of a warm cup of coffee in my hand.

Living with sight loss and type 1 diabetes is not easy, but it has taught me resilience and strength. It has taught me to never give up and to always find a way to overcome obstacles. I hope that my story can inspire others living with these conditions to keep fighting and to never lose hope. If you get a diabetes related eye complication then it's alright to be fearful, angry, upset and even depressed. Nobody wants that news, but know this; most eye complications can be easily treated and needn't be as severe as mine if you attend your appointments and follow the advice you're given. 

I have written other blogs on this subject with more detail regarding surgeries and treatments. Take a look through my posts and have a read if you're interested in that. 

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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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Diabetes Is Work

I don't know how many jobs we're supposed to have on average in our lifetime, I'm sure there is a study or some incredibly scientific research somewhere or maybe you already know? Let me know in the comments at the bottom of the blog if you do. Work? But, this is a diabetes blog! That's true, diabetes and ranting - often the two go hand in hand. However, my time spent in diabetes advocacy, supporting others, tapping out blog posts like this one, creating videos, talking to media... you get the idea, has steadily increased in the last three or four years. Something, unfortunately, has to give.

You may know that I've spent the last decade or so as a self employed worker. The benefits of that type of working life are many; working when I choose, always being employee of the month, etc but there are many cons to that too; no holiday pay, no sickness pay, working 100 hours a week, working 2 hours a week, etc - let's just say that it's not a stable way to earn a living, a little like playing a violin on the Titanic. Everything is lovely for periods and everything is not lovely for other periods and sometimes you're going to drown. 

What do I do? - I get asked this at nearly every diabetes conference or meet up! I make people feel beautiful. I sell cosmetics, at least, I used to. Now, not so much.

A quick look at what that job entails. I buy stock from wholesalers and flog it on the Internet. It's gone reasonably well although, I had no intention of doing the job for so long and I've backed away from that in the last three or four years. See paragraph one as to why that might be.

Not only has diabetes "stuff" begun to fill up more and more of my time and much as I hate to admit it, I've aged. 46 revolutions around the sun at the last count. I've also developed osteoarthritis in a shoulder which makes the lifting of heavy boxes a bigger struggle than ever before. Clearly, this vocation is no longer for me on a full time basis and I need to do something less physically demanding. 

From 2005 to 2010, I worked in the poker industry as well as playing the game to a pretty high level. My work in that industry taught me a lot about online marketing, socials and optimising for the almighty Google. I suspect that my blog does better than it might for that knowledge. So, is SEO the next step? While that's a perfectly fine form of work, it is rather like accounting; incredibly dull (I was once an assistant accountant, too). Work, at my age, needs to be a fulfilling thing as well as put food on the table. 

And back we go to diabetes advocacy. I love the diabetes community almost without exception. I've gained so much from my peers and friends that I doubt I could ever repay them. I do try, though and rarely does a day or two go by without somebody reaching out to me for some guidance. Sometimes the reaching out has been aggressive or tainted with accusations - still, I tried to help as best as I could as I try to see the good in everybody and I suspect frustrations can rise to the surface very easily when it involves our health. When it goes right, when a person gets the support which improves their life with diabetes, the satisfaction is enormous. I really can't compare it to anything else. There are a few examples of that, from late night messages about a dosage error to getting several people approved for an insulin pump and everything in between. It doesn't feel like work because I feel like I'm helping friends and I'll continue to do that for as long as I'm able. What it is, is time - You're understanding the image used for this post now, right?

Time is finite. There are 24 hours in a day, remove sleep time, eating, personal care, the demands of friends and family and you're left with a much lower number of hours in a day to work. That, of course, goes before such frivolous things such as going out and having fun. Time is very valuable and that's why we work for reward in the form of money. Perhaps if you work for the NHS, you work for very little money. We need that to buy our food, pay for the home we live in, pay for the energy to keep us warm and to help us go back to work again at the soonest opportunity to earn more money to do all the same things again. Wow! Now that I've written that, life is one endless depressing cycle of working and earning isn't it? Anyway! Most of us need to work to earn the money we need to live. 

I'm not changing anything that I do right now. If we have conversations then we always will, if I mentor you for free then that will continue, my socials and blog and vlogs and all that jazz will always be for free. What will happen is that I'll offer additional things and ask for a small amount of money for my time. You'll find details about such things at the bottom of this blog (The Blog Member link) and that's it. It'll start from £3 as an appreciation, a tip if you will, up to bigger sums for greater time-demanding support.

 I'm hopeful that means I can carry on doing the good things, the social posts, the talks, the articles and charity fundraising & volunteering while time dedicated to direct support and mentorship will no longer impact on my day to day income. Perhaps it'll mean that I can finally stop selling 20kgs of lipstick?! and concentrate my time on helping people to feel better rather than look great.  

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Taking Diabetes Advice

Happy New ear... Year! I hope 2023 is very kind to you and that your diabetes is more easily managed than ever before. 

I wrote about sharing our diabetes information, data and stories in my last blog post. If you read that post, you'll know that I'm very pro-sharing and the benefits of reading and listening to the lived experiences of my peers has been profound. I will go on to read and listen to my peers (now friends in many cases) and hopefully continue to learn more about my Type 1 Diabetes throughout 2023. Today, I'd like to bring up the subject of advice, why it's different to offering a lived experience story, why you shouldn't give advice and why you SHOULD take advice from the right people.

It is difficult to not offer a word of advice through social media at times. As I've aged with my T1D I've picked up a lot of useful information, tips and tricks along the way which I have stored in the space dominating, diabetes area of my brain. A person who is seemingly in need of advice is likely to pop up on socials regularly and if you're the sort who likes to help then the temptation is a strong one. So, why should we be cautious? T1D has many nuances, twists and turns, inexplicable happenings and sometimes it's just a driver of bizarre events. The very basics of the condition appear to be common from person to person but dig into the details and you'll find your peers, any peer, probably has a different reaction to any given thing. That makes giving advice a very dangerous thing to do. In the UK, we have trained professionals who are medically and legally allowed to offer certain types of advice. It's unlikely that @Johnny5543772 (might be a real account, apologies if that's you) has the right qualifications to offer you advice in regards to your health. It could be that Johnny has the right qualifications but no access to your medical notes, history, medications, allergies, etc. His advice, or the advice of any well meaning individual, might be sound but it could also be deadly. Giving and taking medical advice through social media seems like a big avoid to me.

Advice, of course, is not the same as offering your lived experience. Questions about T1D will appear on your timelines frequently but rarely are the answers black and white. Questions of technology accuracy, insulin speeds, skin reactions, even clinician reviews will likely differ from person to person. There are many more examples, I know, but you get the gist. Accuracy reviews are a particular gear grinder of mine and that's not because poor accuracy in blood glucose monitoring isn't important, it's an essential part of T1D management that needs to be reviewed, it's because we hear different stories from different people. For example; Libre 1 was a terribly inaccurate piece of equipment for me. I even made a couple of videos to highlight it however, I have since accepted that it worked very well for many others and it wasn't a case of Libre 1 being inaccurate, it was a case of Libre 1 being inaccurate for me. The same could be said about some versions of Dexcom. So, a question appears about a CGM; "Is CGM X accurate?" The answer can only be based on your experience of it or the second hand information about it from your friends. 

CGM accuracy is a rather specific subject, I won't dwell upon it, but hopefully you're understanding what I'm talking about - T1D and all that comes with it can be different from person to person. Advice from strangers should be taken with a large pinch of salt.

What about the people "in the know"? The qualified, your diabetes HCPs. It's been said that nobody knows T1D like a T1D and that's probably right in many respects. Let me tell you a little story which proves that the opposite can sometimes be true. In late November, I was set up with my T:Slim X2 pump and I was sceptical about the afternoon-long appointment. I was confident about setting up the device and it's on going usage, indeed I didn't learn a great deal of new things in that appointment but it was still worthwhile. The suggestion to change my basal rates was put to me and, to the amusement of the group, after a couple of minutes talking to the DSN, I announced "I'm sold! I'll give it a try". I'm glad that I did despite the logic not really settling in my brain. The new basal rates have increased my TIR (time in range) and my eA1c has reduced by 0.2%, fantastic. I also began to use the bolus wizard on the pump, following DSN advice. Both changes to my management have improved my T1D. I don't believe that my HCP has diabetes but her calculations and advice have been sound. 

While we're in the driving seat with our T1D and rarely do we see our diabetes team, sometimes the best advice will come from them and that's where I believe you should seek your medical advice while learning from the lived experiences of others and learning to trust your in your own. 

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 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.

  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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38

I find it difficult to avoid reflecting on events when an anniversary approaches. Sometimes, that reflection is very positive!- many great things have happened in my life. Sometimes, it's less positive and it's difficult to avoid wondering "what if..."

What if I wasn't diagnosed with Type 1 Diabetes on my 8th birthday in 1984? How different might my life have been? Pretty deep questions and I imagine many of you have asked yourself the same. It's a pointless thing to do, of course, because we can't change what has been and each time I allow myself to ponder the impossible that is quickly where my thoughts finish. Acceptance is a massive part of living with diabetes and probably many other conditions and disabilities. With no cure in sight, it's important to play the hand that life gave to you. If you're still in the game then you haven't lost even if life dealt you a hand that looks like a foot. A diabetic foot?  No, let's not go there!

Acceptance is where I am with my T1D. It's given me a kicking, robbed me of various things not least some of my eyesight, yet I don't feel anger or upset towards it. I've been through the grief and it's a very normal thing to experience when you're diagnosed with a chronic illness and any complications from that - if you're going through that then please don't feel that it's wrong or weird. Hopefully, you'll get to the stage of acceptance and playing your foot of a hand as best as you can.

Acceptance is now, of course. I'm 45 (at the time of publishing) for one more day but who knows what 50 will look like? Will complications strike and leave me a bitter, yet young looking, 50 year old? Considering the future is a very middle aged thing to do, I think. Considering the future when you've had T1D for almost 4 decades brings up many different thoughts alongside the sports car, leather trousers and inappropriate relationships with women 20 years your junior. It's easy to slip into thinking the worst but maybe the focus should be on the possible good, if not great, things that the future could hold. Diabetes tech has exploded in the last 5 - 10 years. I write this blog post, today, with the most stable T1D that I've ever had thanks to technology, largely and peer support. There is no reason why that can't continue or even improve further. There is no reason for me to not be here in 30 years, 40 years or more, assuming I don't get hit by a bus or develop a terminal illness. That might be disappointing for some of you on social media but the same applies to you too. Life with T1D is improving all the time and while we might not witness a cure, I think we can still live full, exciting, wonderful lives if we embrace the condition and do what we can to manage it - that will differ from person to person, I know.

Young adult me didn't care about acceptance of T1D, teenage me preferred to ignore it and the 7 year old me who was desperately ill on this day 38 years ago just wanted to stop drinking water and peeing every 5 minutes, to play with his Star Wars toys. 

Perhaps peer support is the key in helping others to find acceptance. I try to offer support to others when I can. I've mentored, created areas for others to talk, promoted community, written articles, spoken on podcasts and radio shows and jumped at the chance of helping my friends and peers when the opportunity has presented itself. That might seem like a lot if you're juggling your family life and a full time job. It is! Sometimes, my day is full of work and diabetes advocacy from waking until I sleep again. I'm not complaining, I have taken far more from talking about diabetes than I have repaid. Talking about your diabetes is what you can do to support your peers. By doing that, you're normalising the condition and all the little annoyances, major traumas, sleep losses and victories which you experience. Talk honestly, use your own words and terminology - there is no wrong way to talk about your diabetes. 

 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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Upgrade

I wrote a tweet, a few days ago, where I mentioned my new insulin pump set up appointment. It's been a long time in the coming. You may have read some of my Path to Pumping blog posts, which began in 2021 and ran into this year. I'm still on "The Path" but the finishing line is very much in sight. It's been a journey, only matched by reality TV contestants as they reach the final stages before returning to a life of obscurity, and I'm delighted to finally be moving on - on to a new NHS funded pump and consumables and a reassuring warranty. 

The tweet? Yes, I noted that the upgrading of Diabetes tech is a strange, almost emotional, affair. Not at all like upgrading a phone or a TV. I thought nothing more of it yet, the tweet got a surprising amount of Likes and some offered their thoughts which seemed to be in agreement. Fantastic, I do enjoy social media engagement. However, that particular tweet must've reached more eyeballs than I thought and, following a few messages and emails, I'll be talking to Diabetes UK's Balance magazine on Sunday to discuss the subject of T1D and tech & upgrades.

The subject has been bouncing around in my brain since agreeing to the interview. The words of others have found my "hard relate" button. I don't know of any other technology to have had such a profound affect on my life. A car certainly changes a person's life, affording us more freedom, and if you pass your driving test at 17 then freedom is a huge thing! But, if I didn't pass my test, didn't get a car, then I suspect my life would've gone in a similar direction - probably less nipping out for a takeaway! Indeed, I haven't driven for 12 years and I've got by thanks to various other drivers. Really, that's as close as other technology has got to matching diabetes tech for me and it's still a million miles away.

I think the subject underlines just how much I value my health, today compared to the the years gone by and also how incredibly important access to this technology is. I've seen the data for things such as HbA1c and Flash / CGM use, there are likely similar numbers kicking around for insulin pumps and, lately, looping. The cold, hard, numbers are important but they don't give the full picture. 

Technology has reduced my T1D burden beyond how I can express it in words. I feel that it's reduced it to such an extent that I don't have the T1D that I used to have. It does't feel like the full condition, now. Don't get me wrong, it's still absolutely crap on many occasions but not nearly as much work as when life was full of injections and finger pricks. I've noted many times; I'm blessed. My fund raising for Action 4 Diabetes and learning about their work in South East Asia has really underlined to me just how blessed I am.

The pump switch over is on Monday afternoon and I'm really going to miss this little black chunk of plastic and metal and battery. I've upgraded my CGMs, moved to different ones, taken CGM breaks, etc many times in the last 5 years but since starting on pump therapy I've remained on pump therapy. That'll be 15 months without an insulin injection. I've grown to love the pump. It's on my person all the time unless I'm taking a shower, we go on walks together, meals out, it's met my friends and I spoon it to sleep at night. Next week, it'll be safely back in its box with the battery removed. Another will take its place and do the same job in keeping me alive and well. Soon after, I'll say goodbye forever as the old pump is sent to another living with T1D. I promised to pay it forward and that's what will happen.

Not exactly a tear jerking moment, I know. It's a great moment for me and the next person to use the old pump. Paying it forward is a great thing, too. If you do find yourself in possession of spares then try to not let them waste away. There is nearly always somebody else who can use your old tech or consumables so pass them on... oh! and don't go profiting from it. I know some have sold pumps and fair enough if you bought it in the first instance but, if that tech came from the NHS then please give it back so they can use it to train staff members - assuming you know of nobody who you can pass it to for free. 

Upgrading diabetes tech is so different to upgrading our home technologies, our cars, the machines we use at work, etc. None of those will likely improve your health, I suspect very few of them wake up with you in the morning and it's unlikely that you'll get the opportunity or have the inclination to pay them forward.

 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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