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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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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The Cure

 

I should publish this blog post on a Friday because, you know?! Friday I'm In Love and all that. Fortunately, this post isn't about 80's bringers of cheer, The Cure. No, we're talking T1D cures because, like all good Diabetes bloggers, I'm a topical content whore.

You've probably noticed some of the chatter following the £50 million donation by The Steve Morgan Foundation jointly to DUK and JDRF (UK). If you missed it then it looked something like this:

Steve & family spoke about the donation on BBC Breakfast alongside charity reps and social media got giddy. Rightly so and, do you know what?! it was lovely to see some positive words and hope from the online community. Not that we're a moody bunch but, in general, we do usually have more to complain about than celebrate.

So, it's £50 mill over 5 years. "5 years" ? Sounds familiar but this time there is a firm sense of hope. I truly hope this is the tipping point, the seed, which sprouts a cure in the years to come. It is a hugely generous gesture and as a Diabetic who is nearing middle-age, I will be delighted for those with less miles on the clock than I, as well as the lifting of burden for myself, should the news break.

£50 million, eh?! You could nearly buy a footballer for that! It does beg the question, has a lump of filthy lucre been the issue since Day 1 of research beginning? I know that charities are always asking for funds but has one big hit been holding everything back? That would seem like a terrible shame for those who have lived with T1 for many years, those who are no longer with us because of the condition and those, like me, who have been touched by complication's frosty grip. Perhaps that's something for a later date. Until then, boffins get boffining! Bring us good news and if it takes 5 years then I'll get Steve Morgan's face tattooed on my back.

Speaking of tattoos! I'm screwed. You've seen the one on my arm, right? I show it off at every opportunity because I think it looks cool and I'm proud of overcoming my hiding of the condition and letting it dictate my life to me. Now it belongs to me, that's what the tattoo shows. And it's kinda useful if I'm unconscious and the medics spot it. What do I do with that? I'd probably add "Former" above it and "See back for details" whereupon you'd find Steve's face. Yes! I think that's a plan.

Back to curing. A cure is a subject which I've avoided for a long time. The trash in newspapers and on the Internet has left a sour taste in my mouth when it comes to that discussion, yet it's a valid subject. You might argue that it should be the primary subject until it's found as it would eliminate everything else we deal with in relation to T1D, complications from living with it aside. As I sit and smash my fingers into the keyboard for this blog, I find myself drifting off for a moment to imagine not having Type 1 Diabetes... it's weird! How do you freaky non-diabetics do it? Eating without bolusing? I mean... WTAF! I don't know if I could do that, man ;-)

I guess that now we wait. I'm closing in on 4 decades of waiting. Some of you far more, some of you very recently began marking time for a cure. I encourage all of you, no matter where you are on your T1 journey, to never give up hope on a cure. Until then, push for what you need! CGMs, pumps, insulin, appointments in the flesh, etc. Keep those HCPs busy because if a cure comes they're going to miss us.

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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It's Good To Talk

 

I have a new-found admiration and I'll get to that in a moment. Firstly, some context;  I've hosted podcasts, created several vlogs, spoken on the radio, quite a few people appear to follow me on social media, too. In a different life, I played poker on TV and once upon-a-time I played in the World Series of Poker, the biggest card game in the world. You might say I've been around in various guises when it comes to being in the public eye in the last 15 years. I must be brimming with confidence, right? You might read my tweets and my online persona comes across to you as a confident, sometimes outspoken, funny, charming and rather good looking, humble, young man. Some of those things are true! The real truth is that I'm a quiet person. I suffer from social anxiety. I use the word "suffer" deliberately because, unlike Diabetes - which I have, there have been times when it has been on a different level of troublesome.

There are reasons for my social anxiety which go way back. That is for another blog, perhaps! It'll likely be too long to be interesting. I'm not going to offer advice or suggestions on how to "get over it" either. That's for you to work out, if you're relating, sorry. What I can offer is my own experience.

Life has a way of moulding us, directing us, forcing us into situations. Sometimes it takes trauma, grief in it's many forms, exquisite joy or an event to really open our eyes to important things and exciting opportunities. Perhaps the Covid-19 pandemic, the lockdowns and well documented horror have given you a new perspective. Perhaps you're doing new things already and appreciating the people and things around you more than before. Maybe you promised yourself to be that way but it hasn't worked out. That's alright. Lots of us promise to live a new, healthy life on Jan 1st each year. I'm not sure how many of us live up to those quietly spoken words which we weren't truly believing in anyway.

You might have read about my Diabetes complications, before. Sight loss and the dark (no pun intended) places that it lead me to, followed by recovery and a new-found "Wow!" for the world. Then, I told myself that I would do new things. I did. I built a business and probably over-enjoyed myself in many other ways (again, stories for another time). My 40th birthday had a similar but "purer" affect on my views. I decided to open up about my Type 1 Diabetes, expecting nothing more than some minimal engagement on my very early and terrible vlogs. 4 years later, it was one of the best decisions of my life. It's good to talk!

The new-found admiration? It's for those taking a leap of faith by speaking in public for the first time. I've spoken at business meetings and haven't really felt uneasy. Those meetings are often boring and a matter of fact, information sharing, exercise. Speaking publicly about something personal such as your health is pretty terrifying! but... fun! Terrifunning? Like a rollercoaster! but a rollercoaster which you control. That's because you're the one who truly knows everything about that subject. I did that a few days ago at a grand old hotel in Stratford-upon-Avon. A private engagement with some lovely people who were extraordinarily kind to applaud me and ask many really great questions. Although that subject was about the CGM which I use, rather than me, I still felt comfortable after a few seconds. After I left that rollercoaster, I wanted to get back on. The fear had gone and the excitement of the occasion came through. Also, I felt I'd lived up to my own promise of doing a new thing which I once would never have even considered. It's good to talk!

I realise that I'm lucky to be given opportunities within Diabetes. I am after all a "Joe Bloggs" (blogs?) Diabetic. I won't be running any marathons or climbing any mountains, you won't catch me trout-pouting in a bikini on Instagram, I'm unlikely to star in any Super Bowl ads or have my hilarious jokes recognised by TV bosses. I don't create drama for content, either. I'm no false advocate who has unsavoury motives. I'm just a person who talks about Diabetes with his peers. Perhaps you are too? I imagine we get along famously already. It's good to talk! 

Social anxiety feels real. That demon is frightening but I'm beginning to realise that he's not real. He is an imaginary monster under the bed, who goes away when you're brave and you look under there. That bravery takes a lot, it can take a long time or it can be triggered by an event. If the opportunity presents itself then I strongly encourage you to go for it and look under the bed and never look back. Do the scary things.

If you'd like me to do something scary then get in touch - daddiabetic@gmail.com Bungee jumpers and sky divers need not apply!

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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Covid-19 Vaccination - Side Effects, My Experience

My GP is fantastic. He is very engaged with his patients and uses Facebook to provide updates on Covid-19 vaccines. In the last few weeks, my area was ahead of the national average and it became apparent (via my GP's updates) that no further vaccine was expected before Feb 22nd. That has subsequently been updated to Feb 26th. So, my hopes of getting the jab were put aside for a while. I didn't mind, I knew my turn would come.

Fast-forward to last Friday (Feb 19th). News reached me that a clinic within my postcode was accepting patients who are eligible for the jab. As a Type 1 Diabetic, I am a part of Cohort 6 in England. That means I was eligible. I booked the appointment online for the following day! A mix of nerves and excitement hit me. I think more excitement than nerves. I'm used to having vaccines. I've had my flu jab, each year, for a while now. The nerves arose from being in a public place with people. Actual people. Attending an appointment for something which will ultimately allow me to do that very thing without fear.

You've probably read about the experiences of others who have had their vaccines. It seems that organisation is as good as it can be for the majority. No surprises, here. Same. I was told to wait for 5 minutes before my appointment time before joining the queue. It took a little longer than 5 minutes before it was my turn. A mix of people were in the line. My cohorts! and some clearly from cohorts relating to age. Shut it! They're not my cohorts! I'm in the young diabetic group.

The jab was no more painful than a bolus injection. I was handed some paperwork (the one in the pic) and a little card, detailing the type of vaccine I've had and the date. Then freedom! Well, not quite. Back to lockdown.

Then, nothing happened. I don't really know what I was expecting. I was expecting something! Tick-tock! Where is the headache? The feeling rough? Perhaps I've got away with it. 

No. 2am, Sunday morning. Something exploded. I was woken by violent shaking in my chest. That spread quickly throughout my body, followed by the coldest I have ever felt. It was horrible. After a few hours of questioning my decision to have the jab and wondering if this is a normal side effect and spooning a hot water bottle to within an inch of it's rubbery life, I fell asleep. The rest of the night was spent waking and sleeping, tossing and turning, freezing and sweating.

When I tried to get out of bed on Sunday morning, it was then that I noticed everything hurts. Every bone in my body was aching. I spent the day taking paracetamol and ibuprofen and sleeping. The side effects started to subside as the evening approached. Eventually, I went to bed at around midnight. Only at that stage did I feel confident that things were improving.

Now, here we are. Approaching 48 hours after the jab. I'm almost my usual self. A little weak, perhaps but nothing to write a blog about... Oh, right. 

I do not regret having the vaccine, AstraZeneca - if you're interested. Over 120,000 people have died within 28 days of having a positive Covid test, at present in the UK. I know that b*stard virus has touched people I know. I know it's taken their family members and friends. I know people have suffered tremendously on many levels. If my day or two of feeling rough is my experience of Covid-19 then I'll take that gladly. 

Others have had no side effects at all. We're all different. Please don't fear getting your jab. Do the right thing.