Taking Heart – 25 Years and Counting….

25 Aug

25 Years of T1D

 

So today (26th August 2019) marks 25 years since I was diagnosed with Type 1 diabetes.

A lot has happened.

Technology advancements.

Lots of learning.

Finding my community.

Accidental advocacy.

Diabetes related complications.

My son’s diagnosis.

But that’s all in the past.

 

Right now, there is one overwhelming feeling.

That time has gone fucking quickly!

 

So, what about the future?

Right now, I’m ok with my diabetes management.

More ok than I ever have been and maybe a blog post on why will be written soon.

So, the future there looks good to me.

 

I care very little about statistics but two stand out for me today.

I’m 50 years old.

I’ve now had this half of my life and the older I get the faster time seems to go.

I have some very definite plans for what’s left of my life.

So, I need to make sure I take steps to be around as long as possible.

Steps to minimise the health risks that increase with age and are upped more by the length of time I’ve had this condition.

Priority one as of today is my heart.

I kind of need it.

My focus is not driven by fear nor by diabetes.

Family history of heart issues and strokes is addingup and that’s for family members that tick few or none of the at-risk boxes.

Of course, I can stick an added chunk of risk on what’s already there by having T1D.

 

No point in me making statements and promises of what I’m going to do except that it’s top of my list of things to discuss at my annual review next month and we’ll take it from there.

 

I learned a long time ago that living well with diabetes is not just about diabetes and I plan to be doing exactly that for at least another 25 years!

 

Live Long and Bolus.

Grumps.

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Don’t Tell Me It’s Easy!

25 Aug

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On the eve on any milestone event or anniversary it’s easy to sit and reflect.

I try not to do that.

No point looking back.

You can’t change the past.

But for me today that’s not been easy.

A quick flick through the last 24 years and 364 days brings me to one date.

A recent date in comparison.

 

Every talk I’ve been lucky enough to do over the last few years had a slide with that included this bullet point:

  • Family History of T1D (but I didn’t know it was compulsory)

After February 2019 I made a slight amendment….

  • Family History of T1D (but I didn’t know it was compulsory), and it’s still running….

 

Since then I have not blogged, tweeted or talked about my son’s diabetes.

That will not change.

It’s his story.

It’s not mine to tell.

If he wants to tell it then he can.

 

People have been kind.

I really appreciate that.

People have been supportive.

I really appreciate that.

People have asked what his A1c is.

Please don’t ask me that.

Please don’t ask him that either.

A few have told me that it must be easier because I have T1D……

I don’t appreciate that!

Easier?

It’s it Fuck!

If I’d been hit by a car in my past and then this year he had, would it be easier for me?

No.

I’d just know how much it hurt!!

So, if anyone out does think it’s easier.

It’s not.

It’s really not.

That blood glucose reading just before you get him in the car to start his life with T1D brought almost 25 years of living this crashing through your brain like an express train.

At the same time, you maintain that calm poker face so that he knows that he’s going to be ok.

Because you are the only one that never loses it.

If you lose it then he’s going to think that he can’t do this.

If you are just you, then he knows that he will be ok.

And he is ok.

Not because he as 16 and its easier.

Not because I have T1D and its easier.

Because I am exactly the same parent that I was before his diagnosis.

Because that is who he needs and trusts.

I’ll agree that it is different for me.

But its sure as hell not easier!

Live Long & Bolus.

Grumps.

Tomorrow Never Comes…

1 Aug

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The letter has arrived to remind me my annual review is in September.

So the voice in my head (or at least one of them) tells me “sort a few things out” before I go and get my bloods taken…..

It’s a natural thought, (this is where everyone tells me they never think this and I’m a bigger freak than we already knew), and I always tell myself, when I see that yearly reminder, that today is the new start that kicks of a few minor changes to live a bit healthier etc.

Reality is that I do.

I make the small changes.

I go to the appointment.

I always come out motivated.

I make a few more changes.

Then, life takes over.

It takes my focus

So each day I tell myself that “I’ll sort that tomorrow…”

 

I actually really enjoy going to clinic appointments.

I lead the conversation and don’t leave until I’ve covered everything on my agenda.

I go annually, which we agreed was what I needed sveral years ago.

However, this time I may ask to go every 6 months.

Why?

Annually gives me 365 “I’ll sort that tomorrow(s)” and that’s too many now I’m 25 years into this Diabetes stuff.

And as my dad always told me: “Tomorrow never comes”.

 

Live Long and Bolus

Grumps.

D is not just for Diabetes………

28 Jul

Today I bought a book.

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No big deal, right?

Well, no.

The thing is, I have not read a book since I left school in 1985.

I do own books. Gardening books, books on DIY, and of course, the obligatory books on diabetes.

I have started reading them but never finished a single one.

Why?

I’m not very good at reading.

It takes me a long time to get through a single page, let alone a whole book.

Words tend to move about on the page and my brain often sees words that aren’t there which totally changes the meaning of what I’m reading, or it makes no sense. So, I have to go back and read it all again.

At school I did everything to avoid reading out loud in class.

Reading ahead is a challenge because my brain takes a while to process the words.

That makes me slow, and stumble over what I’m reading out loud and there is no flow.

I used to think it made me sound stupid, when I’m not.

 

Dyslexia was never mentioned at school and it was never diagnosed.

Back then I think there was a level of stigma attached.

Oh, now that sounds familiar.

 

As an adult I did not bother to have it diagnosed and to this day it still hasn’t been.

Why not?

I don’t see the point now.

I have gotten to where I am today (wherever the hell that actually is) by finding workarounds and methods to deal with it.

Also, I am stubborn.

I do things alone.

I see accepting help as a personal failure.

Yes. D is also for Dickhead……….

 

Why am I telling you this?

D is also for Determination.

I’m not one to give up.

Time to tackle my other D

Time to defeat this one in order to carry on dealing with the other.

 

I have Diabetes.

It’s a condition I have to self-manage.

I need to be educated about it in order to manage it as effectively as I can.

I need to be able to get the best out of the technology that I am privileged to have.

Everything I need to know is out there, but it is all stuff I need to be able to read and understand, without it taking me too long or losing interest.

 

With my 25thDiaversary skipping its way towards me, and ongoing diabetes-related foot complications a fact of life (more in my next post), I owe it to myself to read and learn more.

The other reason is that I currently have way too much time on my hands.

Time to think.

A thinking Grumps is a very dangerous thing.

 

So, I am going to try and read a whole book.

Get into the habit.

Train my brain to find and to hone those workarounds and methods.

Find a way to focus and keep that focus.

 

The book I bought has a real interest to me since I have always loved Billy’s work and his observations on life. So lets see if I get to the end of it………………..

Grumps.

It’s About Time…….

13 Jul

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There is one thing that every PWD, regardless of the type of diabetes that they have, where they come from in the world, or anything else for that matter, has in common. Their diagnosis…….

Most of us probably remember the day we were diagnosed – I certainly do – but if not the exact date, I’m sure we remember how we physically felt and know that we had at least one, if not all, of “the 4 Ts”.

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Sunday 14thJuly 2019 sees the launch of National Diabetes Week in Australia, and Diabetes Australia is building on their past years’ campaign to raise awareness of the signs of undiagnosed diabetes and reduce the number of people that are diagnosed with either type1 or type2 diabetes too late. The earlier the diagnosis the better the outcomes.

The 4 Ts are not always easy to spot at the start, it depends on how fast the onset is. Even with T1D, my diagnosis was fairly slow, so it was people that didn’t see me that often who first noticed the weight loss, not those that I lived with, and because I was not trying to lose weight I just ignored them (and because I ignore most of the population of this planet).

The onset of T2D can be much slower and subtle, and in fact people can live with the condition for an average of 7 years before they are diagnosed. You may wonder how you can be that unwell for that long without realising or doing anything about it, but I can associate with how that could happen.

Looking back on my diagnosis I’m pretty sure that I had an onset that took at least 4-5 months. That’s based on when that first person asked me if I’d lost some weight to the day I finally took myself off to the doctors and, well, the rest is poorly documented history….

In that time, I don’t remember feeling that unwell. Tired yes and at diagnosis I was exhausted. However, it wasn’t until I started on insulin that and felt better that I realised exactly how crap I’d been feeling. The slow daily progression must have just felt like my new norm and my brain took that as the baseline of how I felt. With those changes being so subtle (ironic as subtle really isn’t me, is it?) I didn’t really register that I was feeling less and less well. So, I will never judge anyone for “not acting fast enough and looking after themselves” so please don’t do that either.

People noticed the signs of my undiagnosed diabetes.

They flagged them to me without knowing what they were.

When I realised what they were, I didn’t act as I didn’t know how serious this was.

As a result, I got a hell of a lot more unwell than I needed to.

It could have been avoided if I’d know the facts.

So please help raise awareness outside of our own diabetes community and stop others being diagnosed later than they could be.

https://www.itsabouttime.org.au

Live Long and Bolus

Grumps

 

Disclaimer:

Diabetes Australia has not funded my trip to Australia or paid me in any way. They have just been kind enough to let me work with them and support this campaign.

 

Slightly Smouldering……

4 Jul

I’m not a massive fan of emotion.

I try to avoid having or showing any.

Possible not healthy in the long run but it’s how I do things.

It’s how I deal with shit.

So, in almost 25 years in having T1D live with me I have never had burn out.

Well. If I have, I’ve never admitted it to myself………

This has been an “interesting one”.

Shift in career path.

Illness and death in the family.

Second foot ulcer.

Son diagnosed with T1D.

And Fuck! We are only 6 months in……

I have done what I always do.

Tackle it head on.

Genuinely, at no point have I felt that it’s too much.

I’m not feeling the same about my diabetes though.

Suddenly 25 years feels like a long time.

It’s never felt that way before though.

Maybe I’m just tired after an “interesting” 6 months.

Maybe an additional T1D in the house has widened my perspective.

Maybe I turned 50 and am just being reflective.

I’m not sure yet, but something has to change.

I’m not burnt out, but I am sitting here smouldering……

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My feeble attempt at a soldering look……

Live Long and Bolus.

Grumps.

Complications suck. But life goes on if you want it to.

17 Dec

Guest blog by Diana Maynard.

I was 7 when I was diagnosed with type 1 diabetes, back in the 70s when treatment consisted of big metal and glass syringes stored in surgical spirit, a couple of urine tests a day where you peed in a container, added 5 drops of urine and 10 drops of water to a test tube using a pipette, threw in a fizzy tablet, and tried to figure out whether the resulting solution was orange (high), blue (low), or green (good). Of course, that only told you what your average blood sugar had been like since the last time you peed. Basically useless. What good was knowing you’d had a hypo 4 hours ago? Not much was known about complications back then (actually not much about diabetes at all) and clinic visits consisted of the consultant asking if I was all right and whether I did sports, which of course I did, and him giving me a beaming smile and sending me on my way.

Getting diabetes didn’t seem too bad at first (other than not being allowed marmalade on my toast “because it’ll stop your insulin working properly” as my mum put it). My dad had had type 1 diabetes most of his life and he was fine after all. His attitude to any kind of health problem was simply to grin and bear it and not to mention it. God forbid anyone should know that you were not healthy – a complete sign of weakness (like staying in bed after 8am – a mortal sin!). I don’t think he’d ever really got over not being allowed to join the military on account of being diabetic, and to be honest, that was probably the worst thing about it for me too (me not being able to join the military, I mean, not him). On the day I was diagnosed and was lying in hospital feeling like a fraud (I felt perfectly OK), my dad brusquely told me “tough luck”, handed me a syringe and told me that as I’d be injecting for the rest of my life I had 2 choices: inject myself right then, or die. I took the first choice. He then said: “Don’t ever feel sorry for yourself, it could be a lot worse. You could have lost your leg or be blind.” He added that when he’d been diagnosed in the 1940s, the person in the bed next to him had died from diabetes complications on his first night in hospital.

Fast forward 20 years, and irony struck. I became registered blind as a result of retinopathy, and my dad had a quadruple heart bypass and later lost both his legs (and eventually died) all as a result of diabetes complications. Oddly enough, when I lost my sight (very fast, within the space of 6 months, despite a wonderful team at the eye hospital who tried to save it – I was just very unlucky in this respect), one of my closest friends lost his leg to cancer. Watching him struggle with that (my dad wasn’t to lose his legs till some years later) made me realise how lucky I was to still have my legs and only be losing my sight. I was told by the doctors that I’d lose all my sight within another 6 months, but thankfully I didn’t. I didn’t find out until later that my friend, Steve, got through his leg loss partly by thinking how lucky he was that he hadn’t lost his sight like me, and by watching me deal with progressive sight loss. More irony. The other thing that got me through it was being recommended to go to Braille classes, since they were predicting I’d lose all my sight. I duly went for a few months, and it was the best thing I ever did. Not because I can now read Braille (I’m still rubbish at it – it’s actually incredibly hard!) but because I met several deaf-blind people there (Braille is essentially their only communication since they can’t lipread, use sign language (except by touch) or listen to audio or read subtitles). These guys loved life so much despite this, and it made me realise how lucky I was that I could still hear and had only lost one sense.

The weird thing about all this is that as a child, I grew up never talking about diabetes, because it was not the done thing (I once got severely reprimanded, aged 6, by my dad for telling our next-door-neighbour, a farmer, that my dad had diabetes, while I was watching the farmer inject a cow). So I barely ever mentioned it to anyone, even my closest friends. There was no internet and there were no support groups back then, so I had no one to discuss my feelings with even if I’d wanted to. But when I got complications, I couldn’t hide the fact that I couldn’t see properly (I use a white stick sporadically these days, depending on the situation and my mood) and I have absolutely no problem talking about sight loss and diabetes to anyone who’s interested. I write a blog about travel as a blind diabetic, work for 2 diabetes-related charities in my spare time, and do a lot of advocacy in the community. I think the main reason for this change of heart is that I really struggled with not being able to talk about it when I was in my teens and twenties, and I’d love to be able to help even just one person not get complications. Because if you think diabetes sucks, then losing your sight or your leg suck a whole lot more. And it’s also not always easy to deal with things like sight loss. I mainly rely on sheer stubbornness, refusing to let it stop me doing the things I want to do. There are some exceptions: I’m not allowed to drive a car any more (though a friend did let me drive his car around an empty carpark) or fly a plane (which might have been fun, but I couldn’t fly a plane before I lost my sight). I can still play a lot of sports (badly, but my teammates are very supportive), mountain bike (badly, but I’ve only had a few accidents, none of them too serious, and slowly), climb mountains (slowly, but that’s mainly just because I’m not as fit as I’d like to be), work as a full-time academic (luckily I work with computers not hazardous chemicals) and do most normal things. Since my sight loss, I’ve been cross-country skiing and horse-riding and done plenty of stupid things, mostly without harm. I also get lost frequently, can’t recognise my friends (or enemies), fall over in airports and break bones, walk into things, talk to shop dummies, and get frustrated. But apparently “normal” people do all those things too.

So in summary, my message is this. Try not to get complications, because they suck. Big time. Do everything you can to look after yourself (now we have such cool technology these days) to minimise the risk. But you might do everything right and still get complications, just as people who have never smoked sometimes get lung cancer. And if you do get some kind of complication, make the most of what you can still do. Beating yourself up will do you absolutely no good at all, so frankly, I wouldn’t bother. I got diabetes and my brother didn’t. Lucky him. He got a brain tumour and I didn’t. Lucky me. We’re both still alive and plan to stay that way for many more years.