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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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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