Facing the Fear

Have you ever been afraid? The kind of afraid where panic sets in, your heart races, your mind is totally illogical? The kind of afraid where you feel like you are alone in the world, reliant on yourself and nobody can help? I have. I have felt this on many occasion. I am a bit of a jumpy person. Thunder freaks me out. I hate the dark. Sleeping on my own can conjure all sorts of creature under the bed kinda moments. I essentially have a good imagination and a sensitive disposition.

Having lived with (some years ago) proper anxiety and panic brought on by some nasty experiences working with child and family violence in my job as a social worker, I can say I have truly felt afraid. I am also a mother and the fear of things potentially happening to your child, or worse when they actually do happen, is one of these kinds of moments of being afraid. My two oldest boys sledding off a mountain and momentarily thinking my oldest might have been paralysed was one of those moments.

There have been other moments, living with panic and anxiety, where seemingly nothing started this feeling of fear. This sense of dread. Take for example my first known full blown panic attack in Myer at the make up counter. No reason (other than those Clinique ladies in white coats), but ended up being wheel chaired out to their sick room….embarrassing and scary to say the least.

That was a long time ago. I no longer feel controlled by anxiety and panic. Not to say that these emotions do not raise their heads as they do for all of us. But, they no longer run my life.

Living with type 1 diabetes however I do often have these moments of dread. Things like what would happen if I went out without my blood glucose machine and could not check my levels? What would happen if my pump breaks when I am travelling and I have to work out a plan B with injecting after 12 years on a pump? What would happen if I had a serious hypo and passed out and my four year old was alone here with me? Living reliant on machines, batteries and other people to keep my pancreas chugging along is somewhat daunting at times.

I do not want to even begin to think about what would happen if there was a natural disaster or war and we had no power, or water, or food access, or even worse, insulin supplies. That is just too scary for me to even go there.

 These many things run through my head at times but like with any other area of my life, stopping these “what if” kind of thoughts can help to lessen the fear. It does not take grip on me. I do not fall into a mad panic and become unable to do anything. I have fleeting moments of genuine worry, fear and yes even panic and then I move on.

I will have my moments and I am not afraid to say that. We all have them after all and in some strange way being aware of these fears makes it easier to feel safe.

 

 

Failure? Who needs it.

Waking up to a beautiful morning with my beautiful family and a freshly painted house in the midst of chaos as we renovate our old 1949 home has got me wondering about a few things. One of these is how we measure ourselves in life. I have never been one to consider myself vain – yet I worry about what people think about me, I have always had a sense of needing to be “good” at things, to achieve and therefore not to “fail”. I am driven by something intangible that makes me work hard and then some, to make a difference, to do things, to see an impact on the world.

Failure can be easy to identify in some things. If you sit a maths test and you get 20 questions right out of 100, you will most likely fail the test. If you try to build something and it falls down as soon as a gust of wind comes along, it might be considered that you failed in building that structure. If you get set a task to complete in 2 hours and it takes you 7, it may be said that you have failed.

But have you really? And what does it mean to “fail”?

Living with diabetes means you live with a lot of potential failure. There are many targets and tests that can easily lead you into feeling like a failure. You constantly measure yourself against actual numbers, against targets set by yourself and others and against what others tell you should be easy.

In reality some targets are impossible. Some competitions will be impossible to win. Some tests will be failed before they have begun. They are simply too ridiculous, too hard, too unrealistic.

We measure ourselves against so many things. We create an idea of “normality” when in reality this does not exists. The world normal is taken from the carpenter’s square and the idea of a normal angle! I do not thing this translates well into a whole human life.

Is it a failure to try? Is it a failure to have a go? To work so hard you are exhausted yet still not achieve the results that are seen as a “win”? And if you are “failing” at something what is the opposite? Is it winning?

I live with a disease that puts me to the test each and every day. Some days my blood glucose is high, low and everything in between. Sometimes I leave my insulin pump set in a little too long and forget when I last changed it. Sometimes I reuse my pump line 2 or 3 times. Sometimes I eat foods I know will send my levels high. Sometimes I don’t exercise for weeks on end. I hate shoes and wear bare feet often. Sometimes I forget that I can look at my management and make changes. I just get into a groove and life gets so busy that I stay in that groove and don’t try a different track.

Do I fail?

No. I do my best. I try. I learn, I manage and I live a full life as a human being, A mum. A wife. A daughter. A hard worker. A friend. And a person who happens to have diabetes.

Failure – who needs it. I for one am winning on all fronts. HbA1c of 7.8% included.

Just Perfect

This morning I woke up with a Blood Glucose Level of 20 mmol (360 for our US readers), this was despite increasing my overnight insulin rates in my pump yesterday morning due to continually having to take extra insulin during the night. I thought today I would wake with the perfect blood glucose level. I woke and checked at 3 am and surprise surprise my levels had risen since going to bed. So took some extra insulin, back to sleep. Yet woke at 20 mmol…..Why, I wondered?

Just Perfect.

Perfect can be seen in the smallest and the largest of moments, just open your eyes

Today is a big day. My youngest child starts Kindy. He is my baby and this is a big deal. He is sweet and shy and does not like a lot of noise and people in his face. Kindy can be all of those things. Today I want to be focused on him as I start my day. I then have 4 meetings all in a row. I have a new oven arriving among this day, which requires masterful negotiation with the delivery driver’s to allow me to have them leave it on the driveway and not be home for 17 hours in case they happen to arrive.

Today I feel like total crap.

Why?

I figure must be coming down with something, it’s that time of the month, my site needs changing. So did that and then decided perhaps to check my adjustment to my overnight insulin rates from yesterday. Oh dear. Somehow instead of a 1 unit of insulin rate from midnight until 6 am, it had slipped a 12.30 am time slot in with ZERO insulin rate. So, from 12.30 am until 6 am I had ZERO insulin. Right.

Just Perfect.

Waking up with a blood glucose level of 4 – 8 mmol always makes me have an extra spring in my step. Not only do you feel physically better, but mentally and emotionally. It means I do not have to wonder why I am high and work out how to deal with it before even starting the day. It means I do not have to wait to eat breakfast. It means I can feel positive about my diabetes even if it does not stay that way all day (which inevitably it won’t!).

Is 4-8 somehow the magic number at which life becomes “perfect”?  Does a blood glucose reading have that much impact on my daily experience? Can it make a perfect moment less than perfect?

So I got to thinking about the meaning of perfect and how we throw it around. How we use it in sarcastic ways when things go wrong, as if what has happened is the opposite of perfect and thus perfect is defined.

But what is perfect?

Is it waking up to a Blood Glucose of 4 mmol? Or is it waking up to a still morning with sunlight creeping over a mountain and knowing you have an entire day to do whatever you want to do? Is it cuddling your child and smelling the beautiful scent of freshly washed baby hair? Is it cooking up a storm and serving the best meal ever? Is it finding the outfit you wanted to wear to next weeks party? All of these things still on the background of perhaps waking like today, with a less than perfect Blood Glucose Level?

Perfect is used in so many ways, so may contexts and is very subjective. Yet we all seem to measure ourselves, our health, our moments, our lives, against the idea of perfect.

I don’t have a perfect pancreas. It is faulty. I don’t wake up every day with a Blood Glucose of 4 mmol (in fact this is rare). I don’t have a perfect body. There are other bits of it that don’t work all that well. But I do consider myself to have perfect days, perfect moments and certainly a perfect life. I love and am loved. I get up each day inspired and interested in what I am spending my day doing. I get to have all sorts of experiences, some I enjoy, others, like this morning, I don’t enjoy so much. But all of these moments are part of my life. And you know what?

That’s just perfect.

On the road again

It’s been a while. Life has been very busy and we have been away from home for over a month. Blogging has not been on the agenda. While I have been away from my familiar environment, my oldest son, my cats and my comforts of home, diabetes has been ever present. It comes with me, no matter where I am and what I am doing, it is there and it demands my attention.

Flying today? Diabetes will demand a pump change on the run and a series of BGL checks to bring a pesky high down to an acceptable level. Climbing a mountain? Diabetes will bite you with a hypo and make sure you feel like hell. Needing to get up early for a day out? Diabetes will keep you awake and leave you feeling like you have run a marathon while you slept.

No matter if you are going a few hours away or flying across the world, diabetes will follow. You know what I am talking about if you live with diabetes and you have ever been away from home. Nobody else really knows this. It is something most of us keep to ourselves. We just do it. What choice do we have? It can make for a tiring holiday! And for me, being a working holiday, it has been exhausting.

It does not take away from the magic of being on the road. Or from the special time you have when travelling with family and spending time with them on an adventure. Exploring new places and waking up to a view that is so magical it can take your breath away. Slowing down and seeing that there are other places, other people, other ways of life.  It can however make your diabetes become even more present as you tackle its ups and downs, the way it gets its fingers into every aspect of your life and makes sure that you have to stop and attend to it, even when out of your comfort zone.

Will this stop me from travelling? Absolutely not. I love home yet I love to travel. I love the feeling of finding a new place and seeking new experiences. I don’t love diabetes. I do however feel comfortable with it. After 33 years you do get used to living with someone. At the end of the day whatever diabetes needs, diabetes gets. Even if it involves changing my pump site on the side of a mountain. After all life with diabetes is one big adventure and I for one am in it for life.

True Olympians

Watching the Olympics the past 2 weeks like millions across the globe it always makes me cry, laugh, shout and barrack. I am not usually a sport nut, but this is one time in 4 years where I will watch as much of it as I can. Despite almost reaching Olympia-burnout, I am still going. This is for many reasons. It is amazing to see how human beings, often in conflict, in war and at odds with each other, can come together as one. It is amazing to see people who come from countries who have extreme problems, still able to find it possible to send an athlete to the Olympics. It is amazing to see a woman from Saudi Arabia finish her race and notice an entire nation making huge steps forwards simply by seeing her very large steps as she crosses the line. It is amazing to see the emotions and passion that show in the faces of so many as they win, lose, try, battle and collapse.

On the flip side of all this emotion, joy and tears, lies the sad fact that there are a few countries in the world who can pour millions of dollars into the process, which creates athletes who simply expect to win. Then there are those who have no money and simply expect to do the very best they can with what they have. I am still one who believes professional athletes and “dream teams” should not be competing in the Olympics. This event should not highlight the difference in the have’s and the have not’s, but create an even playing field. Sadly it misses this mark.

Watching all of this play out like a mini version of our world reminds me also how ordinary people push themselves to the limit and then some, it reminds you what we are capable of. It reminds you that beyond sport there are many warriors and champions. Many who go unnoticed and unheard. Take the mother caring for a sick child. Cleaning up their vomit. Keeping vigil. Sitting by their bed all night and making sure they are not too hot, not too cold, not needing anything, despite her own illness. The man who goes to a job he hates every day to support his family who mean everything to him and still manages a smile when he greets his children each day. The woman who must walk miles along a hot, dusty track just to get water which may or may not be clean. The family living in their car as they have lost everything they own. The people who live life without eyes, ears, hands, or legs, who must work so very hard to do tasks many of us take for granted. Watch the parents who have little money make sure their children have enough. And on a personal note, take a person with diabetes who each and every day of their lives may look like smooth sailing on the surface, but there is a hell of a lot of paddling going on under the surface to execute the most simple of daily tasks.

Humans are amazing. We are simply the most wonderful and the most terrifying things. We can do so much yet we can also do so little. We can push ourselves and we can sit on the sidelines. Those of us with no choice but to go the extra mile, those who are not born privileged, who have disability, chronic disease, poverty, violence or isolation to deal with, we are true champions. We are the Olympians of life.

Shortly the Olympics will be closing. But there will begin a magical event. That of the people who can already consider themselves our heroes, winning races is not the main point.

Bring on the Paralympics.

The mindfulness of food

Food, food food.

Somewhere in the Western world we have gone wrong. There are still many people in the world who have no food. Children who are starving, Dying. And we sit here with an abundance of the stuff. We keep getting fatter and unhealthier as a collective group. We keep throwing food away. Gorging ourselves. Up-sizing and making reality cooking shows about total indulgence in food – people crying about their souffle not rising.

What must that look like? Even in our daily lives there are families who don’t have enough and families who have too much.

But this blog is not about that terrible inequality. The tragedy of the way we have set up our world in a way that seems too hard to change. A world in which those who have too much do not offer to really, genuinely help those who have too little.A world in which we are so focussed on food, cooking, diets, weight loss, calories, problems with food, where to go to get food, with industries that control our food and remove us from where our food comes from.

No, today I am writing after a comment from another person with diabetes (thanks to Bruno) about how “other people” (those without diabetes) probably do not know the calories in everything they eat, let alone the carb content. He wrote that diabetes has in fact made him healthier.

It got me thinking about what it must be like to be able to mindlessly choose anything you want to eat.

Not to think about how many calories, carbohydrates, fats and sugars each morsel has in it. Not to have to calculate a maths problem every time you eat. Not to have to wonder what sort of impact eating a meal is going to have on the rest of your day or night. Not having to keep a tight eye on your BGL’s for the rest of the night after a lazy Sunday afternoon of “slow eating” – you know, the kind of day most people savour, where the sunshine is warm, the day is long, the food is plentiful and comes in many courses over a period of hours, leading to a nightmare of calculations for a person with diabetes. And sometimes it is just not worth the bother.

It got me thinking about how when I watch people tucking into a meal that I can see has 150 grams of carbohydrates in it there is NO WAY I am tackling that baby. Or how it must feel to walk into a cafe and be able to choose anything you like, without thought. That must be something.I have had to think about every piece of food that has gone into my mouth for 33 years. That is a long time. And sometimes I want to be free from that.

But then I got to thinking again about how privileged I am. About how I can go into a cafe and choose food. About how I can have a house full of food. About how I am one of the people who does have enough.

And then, I remembered how lucky I am.

Do Unicorns get diabetes?

I was at the doctor today for a non-diabetes related thing, a “woman’s” thing. I was already feeling a little uptight, wishing I was not there, thinking about all the things I needed to get done today and wondering why she was running 45 minutes late. I contemplated running out, telling them I had another appointment to get to, but I didn’t. I knew it had to be done and as I was there and had already waited, I might as well go forwards. You can catch up with a lot while waiting for the doctor – I did not even know Rebecca Gibney had put on weight and there she was having lost 15 kilos on a diet described as “diabetes friendly”! Which essentially meant virtually no food and a LOT of water.

So back to the moment, the GP called me in. A lovely doctor she is, very smart and caring, someone you feel blessed to have found as your GP. I also have a multitude of what I call “Ologists” in my life. You know, the ENDOcrinologist, the GASTRoenterologist, the OPTHAMLologist, the RHEUMAtologist, the NEURologist and have even had over the years “ologists” related to my blood, skin, lungs and more.

So, here I sit about to undergo this procedure and she smiles and asks “and how are your sugar levels?”. Inside I think “WHY are you asking me that? Well I have type 1 diabetes so you know, I guess they are CRAP….” but instead I go into my “patient” mode and answer “oh you know, OK, well actually with my gastroparesis they have been pretty up and down lately and oh, I have been sick too, so yeah, they have been a bit up and down”.

That is an understatement.

I have been riding the rollercoaster with the 3.5 – 25 mmol the past few weeks. But I smile and make excuses. – explaining again why my blood glucose levels are not always 3.5 – 8 mmol (because if you did not know it, diabetes is very easy to manage and you should be able to achieve these levels).

Lovely doctor she is, she asks me if the gastroparesis causes “dumping” of glucose into my blood stream. “Yeah, pretty much” I answer. And then try to give an explanation of what happens but start to feel a little upset and realise that this is probably something I am still dealing with so I stop and change the subject.

Feeling now a bit like I did all those years ago when my parents took me to the children’s hospital every 3 months and we would sit in the rabble of outpatients to await prodding, poking and judging. And worse still, the short time where I was “transitioned” to the adult hospital and shared this space with a lot of elderly people with type 2 diabetes feeling like an alien until my lovely (and still current) Endo started a young people’s clinic………

She later asks me if my Endo does my urine checks for protein and I make sure she knows that this is the case and that I am not here for my diabetes.

Don’t get me wrong. It is brilliant to see an engaged and switched on GP who wants to make sure her patient has all of her needs covered. Sadly this can be lacking in many cases and I know of people who have the complete opposite with their doctor ignoring their diabetes. But it made me think about how easy it is to slip into “explaining” your blood glucose levels, as if it is somehow your fault they are up and down and that if you just managed better, they would sit in that fantasy zone of 3.5 – 8 mmol all the time. And actually I think there may also be unicorns in this fantastical world.

So, consultation finished, job done, back to work. Feeling a little less in control and a little more like a person trying to manage a disease that can sometimes be so unmanageable. Amazing what a trip to the doctor can do for you isn’t it. Time to stop explaining and just tell it like it is. I wonder if I can.

People, politics and pancreases

A funny thing happens every year in National Diabetes Week here in Australia and I am sure it happens across the world as follows:

1) The main players and policy makers decide on a focus, (which quite rightly given the huge numbers and costs to us all)  is usually about something to do with type 2 diabetes and/or complications of diabetes and/or prevention of type 2 diabetes

2) People with type 1 diabetes and their families, (quite rightly given the lack of attention to type 1 diabetes and misunderstanding that face us every day), get up in arms about it and go in to battle

3) People with type 2 diabetes, (quite rightly given how hard it is to live with and the complexities behind why someone develops diabetes of any type, and yes a fat person is a person who may have many reasons for why they are fat which may include depression, fear and loneliness), begin to feel the weight of guilt and self loathing getting heavier for “causing” their own diabetes

Why is it like this?

Simply lack of understanding, mistrust, bad reporting and fear.

All of us are human beings first. We are sons, daughters, mothers, fathers, bothers, sisters, grandparents, aunts and uncles, friends and lovers. We all laugh, cry, get angry, sad, worry and wonder what life is all about.

Then, we are people living with diabetes.

The problem is not the other person with diabetes that may be different to yours. The problem is not the government or major policy makers deciding to focus on one issue. Doing so does not mean the other issues do not matter.

The problem is people feeling frightened that they are not being heard.

The best solution to this is to stand together and speak loud. Don’t fragment the diabetes community by type, age, gender or place. This is as much discrimination as separating people by race or colour.

We are in this together people. We may have different kinds of diabetes just like we have different kinds of hair, eyes, families and lives. We are stuck with the name diabetes meaning many different things but instead of us fighting against this, why don’t we harness it, try to see the other point of view and perhaps we can have better outcomes?

In my family we have people with type 1 and type 2 diabetes. We may manage it differently, have different needs and possible future outcomes – but we also have connections, similarities, bonds. A few weeks ago I was on a diabetes wellbeing retreat at which we did not discriminate between “types” of diabetes. People with type 1 and type 2 diabetes sat and shared stories. Cried together, laughed together, bonded. Ate meals and listened to each other talking about the similarities and the differences and appreciated each other.

That is the kind of thing I would like to see in National Diabetes Week. Bring it on.

Who’s blaming who?

“It’s because of your diabetes”.

How many times have I heard that. How many times have I thought that. How many times have I wanted to shout “Not everything in my life is because of my diabetes!”. And how many times have I used diabetes as a crutch, an excuse, a get out of jail free card?

When you live with something like diabetes it is easy for people, particularly those in the medical profession, to presume every ache, pain, spot, niggle and twitch, is due to your diabetes. Sometimes of course that is true. The number of things that can happen to your body when your insides are slow cooking in glucose over 33 years is incredible. Just like a good caramel sauce, diabetes has gently simmered inside my body and created changes that mean I have to manage not just my blood glucose, but an array of interesting and colourful conditions that make life tricky to say the least.

However there have also been things happen to me, that are not in fact related to my diabetes.

Sometimes, rather than blaming the condition on your diabetes, they will try to get out of helping you because of your diabetes, or ensure if things go wrong it is entirely your fault as you have diabetes, nothing to do with them. What happens is you get the line “Oh I won’t operate on that frozen shoulder because in diabetics the chances are it will just make it worse”. “Oh I will do your carpal tunnel but don’t expect the same results as a non-diabetic, sometimes in diabetics it does not make any difference”. Or the classic kick in the guts when I had worked my ass off in my third pregnancy to ensure my baby would have the best chance and was going in to have my c-section full of confidence as my HbA1c had been 5% all the way through, the doctor saying “well yes that is true but you know in these diabetic environments sometimes that does not equate to the baby not having any problems” – FAR OUT I really did not need to hear that right then. And by the way he was WRONG and the baby was SO fine, he was with me in my room within 3 hours of birth.

Anyway, what these comments mean really is “Oh you have diabetes. You are essentially stuffed, we are not fixing it because you are just too far gone”. Or, “if this does not work it is totally on you”. And people wonder why there are high levels of diabetes related distress? I wonder why we people with diabetes experience high stress, low levels of wellbeing and increased depression. Gee it is beyond me.

On the flip side, when you grow up being told about all the terrible complications that can happen and being told all ailments lead to diabetes, it is easy to fall in to thinking yourself that the tingling in your foot, the swelling in your fingers, the fact your shoulder does not move anymore, the blurry eyes in the morning, are all diabetes complications starting to invade your body. When in fact they may just be about getting old. Or having arthritis. Or you slept on your arm. Or you work on a computer all day long. Or just because it is a cold day and you did not sleep much the night before. Yes it is easy for your mind to run away with you, to freak you out, to worry you. 

Diabetes can however be useful. Have you ever called in sick because you “had a hypo”? Or turned up late somewhere because your “pump disconnected” and you had to sort it out? Or pulled out of a social event because “your diabetes was playing up”? I have. Of course I have also had these things genuinely interfere with my life. I really have had to have time off, stop going out somewhere, because of diabetes. But on the odd occasion, I have also used diabetes as a way out. I think we should be able to have the right to this small side benefit of diabetes. There are not many lets face it.

So, who’s blaming who? I for one am not blaming anyone for me getting diabetes. I am not blaming myself for not always getting it right. I am certainly not blaming everything in my life on my diabetes. And I am not even blaming people for blaming it all on my diabetes. But sometimes, on the odd occasion, I am blaming diabetes, because I think I deserve that right.

Loud and Proud: telling it like it is

I was thinking about all the years I have lived with diabetes. There are so many things I have learnt, so many questions people have asked me, (some total strangers). There are also so many things that I think should be loud and proud about diabetes, but they are not. 

So I thought why not share these thoughts, get them out there so people can hear them.

Here they are.

Life is short, don’t let diabetes ruin it.

It is horrible that you got diabetes, but it gets better, so hang in there.

YES I CAN EAT THAT!

Fingers can take A LOT of pricks and I don’t really care if they have black spots.

I don’t wash my hands before every blood glucose test, so shoot me.

Sucking your finger after a blood test is so totally normal to me that I did not notice the check-out chick looking strangely at me as I sucked my little pinky after checking in line.

Insulin is simply a marvel – and people everywhere should have access to it. It is a crime that some children in the world with type 1 diabetes do not…..

Any food will do in a hypo storm but some things taste like heaven.

NO I AM NOT HYPO BACK OFF.

Yes, when you are young sex can lead to a hypo. Now, with all the children in the house, that is never a problem.

YES counting carbohydrates is the centre of my world.

No it is not a pager, it is an Insulin Pump.

NO I will not take it off when I am going through your x-ray machine at the airport and NO you do not need to bomb check it.

Sometimes I change my pump set when I realise it is hurting a little, or it looks oddly red….does that make me a bad person – No.

And guess what, sometimes I put in a new reservoir and I KEEP THE SAME LINE.

I did not eat too much sugar as a child.

It was not my parent’s fault I got diabetes.

My children don’t have diabetes – I hope they never do.

I guesstimate carbohydrates sometimes and I don’t always get it right.

Sometimes I don’t know what to do, even after 33 years.

I have sore shoulders from lugging around all the diabetes crap I have to take with me and I hate that lack of freedom.

I have sore shoulders because stupid diabetes gave me frozen ones and they don’t get totally better.

Sometimes when I realise how reliant I am on machines and batteries and technology, I freak out a little bit.

I don’t think there will be a cure in my lifetime, although I hope there will be.

I love. I am loved. I have good days. I have not so good days. I laugh. I cry. I think, A LOT. I do, A LOT.

I know how hard it can be to wake up with a screaming high blood glucose and not know why and to spend the entire day trying to get it down, only to find you crash to the other end and have to deal with the crazy, mixed up, shivering, shaking hell of a hypo.

I know diabetes messes with your head, that we all need someone to talk to sometimes, that we all need someone who gets us. That we are all human.

And at the end of the day we are all filling the days. Diabetes makes for much fuller days.

There are so many more things to think about, to consider, to manage and to plan.

But then there are all those amazing people you meet, things you learn about yourself and your body.

And the fact that no matter what you get served in this life, you GOT a life – make the most of it.ly