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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