Look at your social media profiles – and those of your friends – and what do you see? Most likely a highly edited and curated ‘best of me’ collection showing you in the best possible light.

This makes perfect sense. Of course the photos that we post of ourselves show us looking happy and smiley and as attractive as we possibly can. Because really, who wants to see us looking pissed off, grouchy and ugly. People around me get that in reality. They don’t need to see it in cyberspace as well!

A couple of weeks ago, in my jet lagged stupor, I sat there and went through my Facebook wall from the present day back through the seven years I’ve been using it. The things you see on my page are the following:

  • Photos – of my family and our travels, and of friends
  • Links to my blog
  • Links to other people’s blogs
  • Links to diabetes things
  • A lot about Nutella
  • A lot about doughnuts
  • Links to the music I’ve been listening to
  • David Sedaris links. Because he is funny and everyone should read him
  • Recipes – usually of cakes I intend to – and then do – bake
  • Photos of the cakes I bake
  • Photos of coffee. A lot of photos of coffee

But the thing is, it’s not what we put up on our SoMe profiles so much as the things we don’t put up there.

If you look at what I say on my Twitter or LinkedIn profiles or the ‘about me’ page on this blog or other places where I write, what you read are the highlights of who I am. It’s very much name, rank, serial number – the sort of information I would give on tax return. What you don’t read – what I omit (quite deliberately!) – are the things about my personality I don’t necessarily want you to know (like the fact that I am so grouchy in the mornings that my daughter often precedes her ‘Good morning mum’ with ‘Have you had a coffee yet, mum?’ or I have a fire-y temper when socks are not thrown in the dirty laundry basket or that I binge-watched the first season and a half of Revenge).

I think there are definitely parallels between what we show of ourselves online and how we present ourselves to our HCPs.

How many of us show up to our diabetes appointments and only show the very best of our diabetes selves? For whatever reason – fear of judgement from our HCPs, a desire to appear ‘good’ – we either deliberately or subliminally hide away something that is probably important, but we think casts us in poor light. We present as confident, capable, knowledgeable and ‘in control’ of our diabetes.

Sometimes the thing we hide is our A1c. We forget to, or simply don’t, have our bloods done before our appointments so there is no discussion about how we are going with our diabetes management.

The ability to leave out crucial things that are going on in our diabetes life means that whatever is actually discussed at out appointments is only, at best, a distortion.

There is no victory in this for us as the person with diabetes.

Omitting critically important things about our diabetes and how we are going – no matter how ugly we think they are or how ‘bad’ we think it makes us look – means that the person we have charged with working with us along our diabetes way only has a small bit of information.

And once we start along these lines it is really difficult to come clean. If we’ve been sharing only parts of what is going on – or (and I’ll just be brutal here) lying – ‘fessing up with the truth is a hard thing to do.

If you’ve been swearing to your HCP that you always, but always check your BGL 6 times a day and have the scrawls in your log book to prove it, it’s not really pleasant to admit that actually, it’s been three weeks since you last fished out your meter.

Also, I believe there comes a point where we perhaps start to believe our own stories. I know that in the past, I managed to convince myself that my lack of frequent BGL checking was pretty much justified because it didn’t matter what I did, I couldn’t fix what was going on. (See also I have brittle diabetes so there is nothing I can do.)

I don’t believe there is any real deceit here. I know that the times that I’ve gone in with my ‘all is great, look how terrific and shiny and sparkly my diabetes is’ attitude (when the truth is the complete opposite) I’m not being maliciously fraudulent. Usually it’s just because I can’t be bothered trying to work out what the problems are. Or I’m burnt out and really haven’t the energy to actually put in the work needed. (Yes, of course I realise that it at these times that being honest and getting to the bottom of things makes sense. Yes, I understand that in the long-term I’d feel better. Yes. I am an idiot.)

So what do we do about this?

It is easy for me to say that we should just be honest, tell the truth and deal with however that is received. But I know that is too simplistic. No one wants to face disappointment or anger or frustration. No one wants to be called out on the things that have been omitted. And, there is a strong case here to focus on exactly why we feel the need to hide things – in fact, I would argue that until that is understood we can never expect to be fully honest. And the worst part for me is that I say this in the full knowledge that my endocrinologist – the main person (poor thing) who I work with about my diabetes – would never judge me or make me feel bad about anything to do with my diabetes management (or lack thereof).

We need to stop curating our diabetes life and trying to turn ourselves into Saint BGL. Because no one is perfect. And no one’s diabetes is perfect. Ever. And the truth of the matter is that it is okay to lay it all out for all to see. The good. The bad. And the downright ugly.

Neil Diamond. 1972. Crunchy Granola Suite. No idea why. Why not? Have a great weekend! (P.S. If you can find a copy of Tony Martin on the D-Gen Late Show – circa 1992/3 – talking about this song, do it! Good Lord!)

Today, I am so pleased to have Jane Reid guest blog for me. I’ve never met Jane in real life (I hope to one day!), but we are friends on Facebook and seem to have very similar interests. We share a lot of posts about books, libraries, grammar and punctuation. Jane often posts really thoughtful and honest comments to my blog posts and I am always so interested to hear her opinion and experiences. Thanks for sharing today, Jane.

I have lived with T1 for 50 years – well, almost, but who’s counting?

It seems like a long time, but it has whizzed by. From diagnosis, (diabetic ketoacidosis and coma), to now, (pump, some hypo unawareness and some complications), I have lived it all with the help of my parents, my friends, my HCPs, and most of all, my husband who has put up with nearly 43 years of type 1. He told me yesterday that any sort of illness or set back that affects one of us is OUR problem. That is true love.

For the first few years I lived through what I call the ‘dark ages’. Glass syringes, horrible, large needles that went blunt quickly and testing (if you can call it that) with tablets dropped into a mixture of urine and water. If the result was blue, you were probably hypo; if the result was orange-brown you were high. My first specialist-physician (did they even have endos in 1965?) did me the greatest favour he could have. He told me that I would be the person who knew most about my diabetes, and he was correct. Thank you, Tom Robertson!

Jane

Jane

When I look back, I now realise that I had gastroparesis from quite early on, although it was only diagnosed ten years ago. Maybe I just didn’t want to know at that time, and I certainly never told any HCPs. I could probably have saved myself a lot of grief if I had.

The complication I really feared was retinopathy. I am a voracious reader, and I had heard gruesome tales of people going blind. Well, it wasn’t as bad as that, and it took over twenty years to develop. The treatment was worse than the fear, and the waiting around to see the ophthalmologist was worse than the treatment. I was treated by an ophthalmologist whom I can only describe as arrogant, and patronising. He did, however, save the majority of my sight, although I have almost no peripheral vision and can no longer drive.

I have had no treatment for over twenty years, so I guess he knew what he was doing. Losing my driving licence was the worst thing for me, although it was not until ten years ago. It has, to a certain extent, taken away my autonomy and independence, although every time I get into the car I know why I no longer drive. Believe me; everyone else on the road is safer because I’m not behind the wheel!

My latest complication is diabetic nephropathy (CKD). I was, to put it mildly, surprised and depressed when I found out. Luckily, the specialist I was sent to in the ACT, put me at ease, told me all about it, and arranged for a kidney biopsy. That showed that the disease was not nearly as bad as first thought, and was only at the very first stage. His comment to me was ‘I’m the same age as you, and I’ll look after you for the next seven years, and then I’ll hand you onto someone else when I retire’. That was reassuring!

I’d prefer not to have type 1 diabetes, but I can live with it. I’ve found out that I can live with complications; sure, I’d prefer not to, but they just become part of life. The worry and the fear are worse than the reality. I just do the best I can. None of us can do more than that.

Jane Reid is a proud member of the Newcastle Knights Rugby League Club and early next year will be eligible to receive a Kellion Medal for living with type 1 diabetes for 50 years – congratulations Jane!

I got a new car a couple of years ago and in pure German auto-engineering genius, there are alerts and alarms and warnings for absolutely everything! I thought that this was wonderful and a sure sign that I was driving the world’s safest car.

Until the alarms started. The car has front, rear and side sensors. This is ostensibly to assist with parking. Now, I’m a great parker – I’ve lived in inner-Melbourne for a long time.  I can negotiate a tight parking space incredibly well and love to prove people wrong when they dismissively pronounce ‘You can’t fit in there.’ ‘Oh yes I can, ye of little faith! Just watch me!’

Despite my superior parking abilities, I was more than happy to have a bit of technology to help out and make things even easier. I got used to the lights that flashed like a Christmas tree when I was getting to close to the car in front and the gentle beeping that became more and more persistent as I approached any object.

After two days of driving, I called the dealer, asked to be put through to their service centre, asked to speak to the senior mechanic and said ‘turn those effing sensors off.’ ‘Ha ha’, he laughed in a German accent. ‘Not possible!’

The problem wasn’t that the sensors weren’t helpful when I was parking; actually, they were great. The problem was that they went off when I didn’t need them to.

Sitting at a red light, the front sensors would go sound if someone walked too close to the bonnet of the car. If a bike came too close to the rear or side, the sensors would go off too. Why? If I am stationary and someone is walking too close to my car, surely the alarm should be for them, not me.

It turns out, that there was no way that I was going to be able to have the alerts turned off.

My insulin pump has been designed by someone trained in German auto-engineering sadism genius. Again, there are alerts and alarms for everything. Connect it to my CGM and it makes vibrating sounds all the freaking time. The soundtrack to my life is a buzzing, beeping little box.

Now generally, these alarms are great – especially the ones that alert me to rapidly falling BGLs BEFORE it becomes a hypo problem.

But some of the others drive me nuts.

The YOUR BLOOD SUGAR IS ABOVE 14. DO SOMETHING NOW. DO SOMETHING NOW. DO SOMETHING NOW alarm is unhelpful to say the least. This one comes up when I am entering my BGL meter result into my pump to give myself a correction bolus. This frustrates me no end and usually results in me having this conversation with my pump (we will workshop that last statement another day):

Firstly, I know my BGL is above 14, you judgemental little pump, because I just did a BGL check on my meter and it told me (in a significantly LESS judgemental way). I am entering it into your system, you judgemental little pump, so again, I know what the number is. Also, I am plugging it into your correction bolus wizard so you can do some clever maths and tell my how much insulin I need in order to stop being so high. So quite frankly, you and this particular little alert can shove it up your judgemental little pump-ass.

This alarm cannot be turned off.

The problem with all the alarms and alerts (and bells and whistles) is that we stop responding to them. I know that I almost never wake up anymore when my pump alarms. Sometimes, it’s just telling me that the battery is getting low and I should change it. That’s an alarm that can wait until morning, rather than causing pump-alert-anger in others woken by the incessant noise.

I understand that the main reason for these alarms is safety. I really do get that what the pump company (and car designers) are trying to do is alert to and reduce risky situations.

But when there are so many alerts and alarms and warnings, having to deal with the ones that are less important to us means that we can stop paying attention to all of them – including the really useful ones! I know that’s what I do.

In my perfect world, my perfect pump will be completely customisable and only warn me of things I really need to know. Actually, in my perfect world, I won’t have diabetes. But for the sake of this, in my perfect world, I have perfect diabetes that is managed by my perfect pump. Perfect.

 

Diabetes research funding – simply not enough

Last Friday, the successful National Health and Medical Research Council (NHMRC) grant recipients were announced.

Let’s start with the good news.

Funding for 848 grants was announced, totalling over $580 million across a wide range of health conditions. This includes project grants, partnership projects, Centres of Research Excellence and other Fellowships and grants.

This is great stuff. Medical research is essential and we should be encouraging more dollars being delivered to the very clever clinicians, researchers and scientists carrying out this important work. ‘Cures not Cuts’ is a motto we should be thinking about all the time – not only when there is a real or perceived threat to funding dollars.

Diabetes received $54 million in grants for 60 research projects.

Here is the not so good news.

Diabetes received $54 million in grants for 60 research projects.

That’s right. The good news is also the bad news. Whilst it is terrific that 60 research projects received funding and $54 million is not to be sneezed at, I do not believe that it is enough.

Cancer received funding of $89.9 million for 156 projects, and cardiovascular disease $82.4 million across 106 grants. All of these are worthy and should be funded. Make no mistake – I am not saying that money should not be given to cancer or CVD research. Of course I am not.

I am told that when funding announcements are made, there is also dissatisfaction amongst the cancer community, with many ‘lower profile’ cancers often being overlooked. Ovarian, pancreatic and lung cancer are frequently considered the poor cousins of the cancer world, despite significant numbers of people being affected by – and dying from – these cancers.

Of course, we can argue that the money is never enough. We can argue that we are all self-interested and only care about our own condition or the condition affecting our family and friends and to a degree, that is absolutely true.

Please understand, I am not saying that diabetes is worse than any other disease or health condition. Any regular readers of this blog will know that I absolutely do not subscribe to the ‘my condition is worse than yours’ arguments.

But if we are to believe that the magnitude of the ‘diabetes problem’ – and there is some pretty compelling evidence to support that it will indeed be the largest health burden in Australia by 2017 – then surely we need to see a bigger investment into diabetes research. We need diabetes to be’ top of mind’ as the number one health concern.

The results of last Friday’s funding announcements reinforce what I wrote here about diabetes having an image problem when it comes to funding – and fundraising. With more and more people affected, surely this should be reflected in increased funding for research, programs and services.

We’re not seeing that.

DISCLAIMER

At the risk of this outing me as someone with a case of sour grapes, I should acknowledge that I am listed as an Associate Investigator on a grant application that was not successful. Yes, I am disappointed. But this certainly was not the only diabetes grant that was unsuccessful. Many other very worthwhile applications faced a similar fate.

Congratulations to all the successful applicants.

Who do you write your blog for? The question came after one of my recent presentations about how healthcare professionals can use social media to connect people living with diabetes.

My flippant answer to that question is ‘Oh, me and my mum. And some weird guy in Romania who seems to be really interested in my life…..’

The easy question – which is also frequently asked of me is WHY I started a blog. The answer to that one is simple.  I hoped it would help me connect with others sharing my story. Because every single time I told of one of my experiences at least one other person – and usually many more – said ‘oh, me too’.

It was exactly the same as when I heard others with diabetes speaking about their lives. I wanted to jump up and down and yell out to them that it was the same for me. (And if I’m being truthful, I actually did do that a couple of times!) These sorts of connections made me feel less alone.

I considered writing a blog an extension of a lot of the work I was already doing: being the ‘here’s-one-we-prepared-earlier’ case study at meetings and information sessions. This, however, would be writing it down. I did this while I was pregnant with our daughter – I kept a weekly online diary that was published on a diabetes site. It was therapeutic and reassuring for me. An ongoing blog would give me the chance to write about and examine my real life with diabetes, and hopefully connect and share with similar folk around the world.

People tell me they like the candid, raw and honest way I tell my story; they feel they can relate. I try to inject a little humour and sometimes that works, other times it falls flat. I have been told to tone things down (I had to stop telling my ‘I will hunt you and all your family down and hurt you all if you steal my pump’ story because my husband said that with my Italian heritage and (falsely) assumed mafia connections that people would get scared*).

I decided when I started writing my blog that there were certain things I would not write about. I would not share others’ stories and I would never, ever write about things told to me in confidence.

I occasionally write about my family and friends, but it is usually incidental to the real issue I’m writing about – sometimes it helps illustrate the experiences and give context.

But what you see is very much what you get. I am conscious that loved ones and people who actually know me and my family read this and sometimes that makes it difficult to write about the more challenging things I’m facing. I don’t want to worry people, but equally, I don’t want to sugar coat things either.

Everything I write, though, whether it is about a particular experience or my circumstances, it is all honest. Sometimes too honest. There have been times that I’ve written something and then the phone calls have started as friends and family check in with me to make sure I am okay.

So who do I write this blog for? I guess it’s actually the same reason as why I write this blog. Mostly – and selfishly – for myself. To connect and find support. And I’m really lucky, because that has been exactly what’s happened!

*I may have stopped telling the story, but that doesn’t make it any less true!

Presenting at yesterday at the Royal Melbourne Hospital's Grand Rounds and promoting the value of the DOC.

Presenting at yesterday at the Royal Melbourne Hospital’s Grand Rounds.

I’m Paris-dreaming at the moment. The gorgeous Belle du Berry and the rest of Paris Combo are providing the soundtrack. Happy Friday!

There is much known about the progression to the development of type 1 diabetes, but a lot still remains a mystery. We are told there is a two-pronged process, which involves genetic predisposition and a trigger.

But what is the trigger?

Some say it was a virus or a period of particular stress. Others believe it’s environmental. For me, I’ve no idea. I wasn’t unwell with a cold or flu or stomach bug. It was a stressful year with planning our wedding, looking for a house to buy and running my own business. But more stressful than usual? I’m not really sure.

We hear the word ‘trigger’ a lot in health. I know that for me there are triggers that can see me in a downwards spiral leading to diabetes distress, and its good mate, diabetes burnout. Others say they can identify the trigger that resulted in their first anxiety attack. There are triggers that result in ‘attacks’ for those living with coeliac disease or triggers that can cause flare-ups for people with lupus or rheumatoid arthritis, or triggers leading to seizures.

I’ve always wondered about the word. It implies a fully loaded gun that is about to go off – quite an appropriate description really. But what happens for the trigger to be pulled?

Is there, in fact, a ‘trigger point’ as such or is it the moment that we stop and acknowledge that there is something that needs attention?

I can rarely signpost the exact moment that results in diabetes distress. It’s never ‘an event’; it sneaks up on me. Sometimes – though not always – I can see that it is approaching. Does this mean I do something to stop it getting to the point where I am so distressed that I stop my diabetes self-care? Ha – no!

While I may have become better at recognizing that I am on the road to diabetes distress, I’m not so good at identifying the things that send me in that direction. Simplistically, I could say it’s just me getting sick and tired of doing this day in day out, and I am sure that is part of it.

But when I am being particular self-aware and intuitive I know that there are other things that contribute. When I wasn’t feeling good about myself earlier this year, diabetes self-care was the last thing on my mind – possibly because it couldn’t fit in there with all the feelings of sadness.

And I wonder how much of it is also about feeling that my broken body doesn’t deserve looking after. ‘My pancreas is hopeless – so the rest of me may as well be too.’

The one thing that does come out of this all for me though is a renewed sense about what living with diabetes is all about. When I start to see the light and start to feel better about myself and, slowly, slowly, start to reintroduce my self-management tasks, I am able to refocus. I remember that the numbers which scared me and pointed to being a failure are just moments in time. I remember why I deserve to be well and look after myself.

Being able to identify triggers and then respond is a really useful tool in managing health conditions. It’s just finding a way to do that. BEFORE the trigger is pulled. Because no matter what John Lennon says, happiness is NOT a warm gun.

I am as guilty as the next person of being judgemental at times. I like to think that I am not, but I’d be lying to myself if I honestly believed that I never uttered a pejorative comment about other people’s choices.

I really, really try to not be judgemental when it comes to how people choose to manage their diabetes. But I know that I am a zealot when it comes to technology and have been very, very guilty in the past of having conversations that sound like this

‘Are you on a pump? Why are you not on a pump? You should be on a pump? Pumps rock! Your life would be so much better if you were on a pump? That’s not a valid reason for not being on a pump. Do you want the details of my pump educator? Here, let me list the million reasons why I love being on a pump. Let me list them in a LOUDER VOICE to convince you. If you’re not on a pump you don’t really care about yourself.’

I know; I’m an absolute joy to be around sometimes.

But I’m trying to not be like this anymore. And to help remind me, I have made a poster of one of the things that has become a bit of a mantra and have it hanging in my office.

my diabetes my rules

Feel free to substitute ‘diabetes’ for any other health condition. Or simply for the word ‘life’.

Because here’s the thing: when you make a decision about how you manage your diabetes, it is about your health. And that is an incredibly personal decision based on your own perspective, circumstances and experience. It’s got nothing to do with anyone else.

There is one caveat to this that I think is really important.

This works and is all fine as long as the decisions that you make as part of your ‘whatever’, (your diabetes, your life etc.) don’t negatively impact on others.

As a result, anti-vaxxers don’t get to claim this as their own. Because their irresponsible actions do affect others.

Same goes for doing anything that emotionally or physically hurts another person, or has the potential to.

Actually, also goes for people who wear leggings as pants. Because, LEGGINGS ARE NOT PANTS and your decision to treat them that way hurts my eyes.

BUT! If you are making decisions that impact on you and you alone, knock yourself out. You don’t owe anyone an explanation or need to justify your choices. Own it.

About two months ago, I realised something. It came as a bit of a shock because I have had some pretty difficult and dark times over the last couple of years.

I realised that I am okay with who I am.

I know that it sounds kinda clichéd and like I’ve been reading a book of inspirational quotes (which I’ve not!) but it was a little of a revelation. Because for some time now, I’d felt like I really didn’t like who I was.

This all happened one afternoon as I listened to my daughter and a couple of her friends playing outside. They were sprawled out on the front veranda, lying on their stomachs, drawing, looking up occasionally to see what our new puppy was up to. In between such busy-ness, they were speaking about what they liked about each other and what they liked about themselves.

I love this about kids. Before they develop the ‘I must hate and criticise myself lest people think I am up myself’ gene, they feel free to say that they are pretty damn great. Because they are.

My daughter is really lovely when people compliment her. She smiles and says ‘thank you’. And sometimes, she says ‘I know’. It’s beautiful and honest.

You’re a great reader,’ I told her the other day when she told me she wanted to read Anna Karenina (seriously – no idea, but she’s six chapters in and loving it). ‘I know. I love to read,’ she answered. She didn’t sound boastful or conceited. She was acknowledging what I said as the truth. Because, it is!

When someone compliments me, I make up every reason to discredit their comment which, when you think about it, is actually very rude.

Having a chronic health condition makes it really easy to think that we are not enough or that we are broken. Add to that any other health concerns and suddenly, we can start to think of ourselves as hopeless. And when we start to add feelings of distress and a significant reduction in our emotional wellbeing, things get worse and worse.

Supplement that with other things that are getting us down and it is only a little hop, step and jump away from feeling hopeless, desperate and desolate. It’s hard to see anything good in ourselves.

The bottom line is that I stopped liking myself. I stopped being able to see the good or the positives and I simply could not be proud of anything that I was doing – even though during that time I knew I was doing some pretty amazing things.

I’m not sure what it was that jolted me out of this. I’d like to think it was ‘bolt-of-lightening’ like, but I don’t think it was. Perhaps it is the robustness that comes with age that reminds us that actually, through the shit, there is good. And a rather Pollyanna-ish attitude that ‘this too will pass’.

I listened to the kidlets and smiled. And then I remember thinking ‘Actually, I’m okay too. I really do like myself. I deserve to have good things happen to me, because I am worthy and good.’

I stopped thinking about my health problems as things that made me fragile and shattered, instead conceding that they are part of the sometimes fragile fabric that when put together makes up me.

I stopped thinking that the things that had been upsetting me where a reflection of the person I was and accepted that many of those particular things were out of my control and had nothing to do with me.

And just like a patchwork quilt, when you look at the pieces alone they don’t make sense and they are not really useful or beautiful or amazing or wonderful.

But when you put them together, they work.

I like myself. And it’s a really, really, really amazing place to be.

 

We need hope. I know that every day I live in great hope.

  • Hope that I will find the perfect pair of jeans in the perfect blue colour that make my legs look long and slender, my backside look perfect and that fit comfortably around the waist.
  • Hope that I will walk into my office one day to find a Nutella vending machine.
  • Hope that I will never again be served bad coffee.
  • Hope that my daughter will grow up in a world of equality for all.
  • Hope that when I get home today all the washing from our recent overseas trip will have been done, folded and put away.
  • Hope that I will walk into a vintage store and find an original (non-replica) Eames arm chair and ottoman for $150.
  • Hope that the whole cast of West Wing will come together for a movie. Please. Please, please, please, please.
  • And hope that diabetes will be cured.

You may have read over the weekend that type 1 diabetes has been cured. This article irresponsibly said the cure is ‘imminent’

I am possibly the world’s greatest cynic when it comes to reading about cures for diabetes. There is much eye rolling, exasperated sighing and sarcastic comments about being unemployed and shutting down this blog because no one will care about type 1 diabetes anymore because it won’t exist.

I simply don’t believe that the cure is ‘just around the corner’ or ‘five years away’.

But let me be really clear about this. I want a cure. I want diabetes to not be a part of my – or anyone’s – life anymore. And I am really, really pleased and eternally grateful that there are people far, far smarter than I working to find the way to a cure.

Having said that, I get concerned about the false hope that eventuates every time there are reports of research breakthroughs. Blue Circle APP

Feeling hope gives us a reason to believe and sometimes that is all we have to get us through the day.

But equally, I find I can’t put all my faith into believing that there will be a cure for diabetes because if there is not, what happens then?

I understand the need for the hype – it helps with funding and interest and gets people talking. And we need people talking about and funding research into diabetes. More and more and more.

And I do like to hear about the research and breakthroughs that are getting us a step closer to finding a cure.

But I believe that even if we are a step closer, there is still a very long way to go.

So, I take it all with a grain of salt. I read it and file it away. And then I move on. Hopeful. But realistic as well.

‘What’s the hardest thing about living with diabetes?’

I was asked this question the other day by someone who is not in any way connected to diabetes. He does not have it himself, does not have a family member with diabetes and doesn’t work in the area.

‘The fear’. I blurted out. I didn’t think my response through; it just came out.

I backtracked and gave my usual answer, where I become a little glib because I’ve said it and written it down so many times. ‘Oh – and you know – it never ends. It’s there all the time. There is no rule book. It changes for no reason.’

I smiled at him. I was back on message.

But later on that day, I realised my initial reply was true. I am scared. We constantly hear that we shouldn’t take our health for granted. I always did. But diabetes has robbed me of that.

What I am scared about isn’t the day-to-day living with diabetes. As much as I complain about it and feel it is a pain in the arse, the truth is that I actually can deal with it. The infusion set changes and sensor insertions and BGL checks are annoying disturbances. Counting carbs makes my head hurt and scheduling in doctors’ appointments far more than I’d like are all really annoying. But I just do them. Begrudgingly.

But I don’t find these things hard.fear2

I am scared about the stuff I don’t know about. I’m scared about complications developing. I’m scared about what might happen and I am scared that these things are going to happen soon.

I’ve come to realise in recent times that the things I fear are becoming more and more a part of my emotional self. Where they used to be a passing thought that I could dismiss with a flick of mental power, now they appear and are harder to deal with.

I find myself having these thoughts more and more – often completely out of the blue. And I can’t just acknowledge them, tell myself it will be okay and move on. They settle in, get comfortable and are there a lot now.

Overwhelming. Paralysing. Frightening. Today these are words I use when thinking about diabetes.

And I fear that the fear is going to actually become unmanageable. I fear that the fear is going to make me stop doing things and stop wanting to do things. And I fear that the fear is going to change who I am and make diabetes a thing that suddenly has moved from being an inconvenience to something more. To something bigger. To something ugly and shameful and devastating. I. Am. Afraid.

It’s time for me to do something about my internal dialogue about diabetes. I don’t want to be afraid of diabetes because then it wins. And while this is not a competition (because believe me, there really is no winner) I have to find the way back to feeling better about diabetes. And I will. I have to.

I’m enjoying listening to the Original Cast Recording of Once: A New Musical this week. Check it out for your Friday listening pleasure!

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