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.

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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.

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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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Back To The Future

Great Scott! Or similar words have been exclaimed by me since the summer of 2023. The reason for such excitement? Hybrid Closed Loop. You've probably read some of my gushing on the subject and I continue to talk positively about it today because... well, sleep never gets old.

Prior to HCL, like many using the tech, I was using a pump and various types of CGMs separately and that was perfectly acceptable. My numbers were as good as they'd ever been; Great Time In Range & HbA1c. I felt no urgency to switch to closed loop.

As is often the case, talking to peers results in changes and it was an unrelated conversation that resulted in one kind person sending me a spare Dexcom G6 transmitter... then another from another person... and Anubis transmitters from two others. People within the diabetes community are really very kind. All that tech meant I could try HCL for a good while - over 6 months. So, I did.

There are lots of posts about how well things went for me in that period. Towards the end of my HCL time, I had my diabetes review with my consultant. He agreed that HCL was working well for me and that funding would be discussed at an upcoming meeting. Fantastic!

Of course, the tech expired as tech has that annoying habit of doing. I thought nothing much of it. I assumed it would be a seamless transition back to simple pumping and CGM use. It was. Reinstalling the old app was a pain in the neck because I can never remember usernames and passwords but, after some swearing and sweating, I managed to get set up again with Dexcom One. Quite soon, I realised just how much work I was putting in to this type of management compared to the recently ended Hybrid Closed Loop days.

The numbers were not looking great. *sigh* I thought I'll get through the life of the current sensor, then I'll buy a G6 transmitter and hop back aboard the Looping train. I noted the difference in managing Type 1 Diabetes through HCL vs standard pumping, on X. Peer support came to the rescue (again). Another spare G6 transmitter landed on my doormat just two days later. The #PayItForward movement is a remarkable one. My donor would not accept any reimbursement for postage. Blessed, I promised to donate something to my favourite diabetes charity - Action4Diabetes as my own Pay It Forward. Of course, if I'm ever in a similar position to my donor friend, I will do the same thing for others. 

So, I'm back in the future! and over the last few days, the numbers are already proving how incredible the technology is once again. When just pumping and using a CGM separately, my average blood glucose was 8.5 mmol/L. I know that's not terrible, really. Yet, I could "feel" it. I was sluggish and just... blunted. Finding the right words is difficult. Needless to say, I was not myself.

And after a few days in the loop?...

Already, a significant difference over the previous 2 days. I think the numbers speak for themselves. You've probably read enough gushing from me, by now.

What happens next? I'm going to relay my experience and thoughts to my diabetes team. To move to HCL, then move off it, then move on to it again seems a little unusual and they may benefit from hearing about what has happened while looking at the data.

Also, and I've said it many times, I can never repay those who have been kind to me over my diabetes in the last 7 years - since opening up and talking about it online. I do try through various means. Some of those don't sit well with everybody and that's alright. Even the kindest will meet opposition and anger and jealousy. Do good things with good people. You'll usually finish up sleeping soundly, especially if you're using Closed Loop! 

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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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