Life..’More than #diabetes’ Ups & Downs

Flowering Wattle

How much does diabetes dominate your life? It is a health condition which, because it is related to food and exercise, can seem like the most difficult health condition you could possibly have, doesn’t it? And because the symptoms are not always obvious or noticeable, it can seem that if you ignore it, it will just go away, or not be true.That you will ‘get away with it’, if you ignore it, or make a ‘token effort’. Even people with type 1 diabetes can at times feel that they can ‘stretch’ the ‘rules’, not take their insulin, or use insulin to allow themselves to ‘indulge’ in ‘favourite’ foods; or ‘allow’ themselves to ‘run high’ to avoid hypos. The insulin pump combined with the modern blood glucose meters, cgm’s, allows such fine control, approximates more closely than anything else the action of the pancreas in releasing insulin; yet in its very existence such biotechnology is a constant reminder of life with diabetes.

As the parent of a child diagnosed with type 1 diabetes, there were times when it seemed there would never be anything else that mattered in life, other than diabetes. When my daughter grew up & left our home in a tiny rural town to go to the City to study at University, things in some ways got easier; but in other ways, things got harder. I was a young Mum, and I was only 32 years old when my beautiful healthy girl was diagnosed. I was 37 when she left home. It was hard knowing she was 250 km away, and relying on others, who were not me, as her ‘backup’ person. Every night that we slept under the same roof, I got up to sit with her through her hypos. The click of a light switch, or the click of the toaster, would wake me. This continued through her teen years; her pregnancies; her own years mothering babies; travelling with her for Diabetes related professional reasons as colleague, & as her ‘back up person’ for her diabetes management, on trips overseas & interstate ; and on family holidays. Even now, if we are sleeping under the same roof, if I’m sleeping within hearing distance, something wakes me, and I can’t lie in bed knowing she’s out of bed & feeling bad.

I do have other things in my life: work, sport, friends, family: causes to do with the environment and the earth. I have grown tree seedlings for Trees for Life, collected for the Heart foundation, travelled. I’ve volunteered at Film Festivals, Arts Festivals, tutored at the U3A. But beating away like another heartbeat is my daughter’s diabetes. I work and volunteer in Diabetes. I practice Mindfulness. Being her parent will always be a part of who I am. Of course, it is much, much more intense for her. Every minute of every day and night, no respite. I do get to take breaks, she doesn’t.

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My life changed 15 years ago. My husband retired, and I got a job in the city, so we moved house. Over the past 15 years, my life has expanded to include assisting my mother in dealing with changes that came about in her life, first with my father’s diagnosis of dementia. In the beginning, I was working in a highly responsible & challenging job. My help was as practical as I could manage, also fitting in supporting both my daughters with pregnancies & babies, toddlers & growing children. With my father’s death, assisting Mum meant helping her manage her own health & living arrangements, & eventually her own dementia.

That time also came to include my own diagnosis of diabetes. Because of my daughter’s diabetes, I came to the diagnosis with a shorter period of ‘denial’ than some experience; and with very little anger. I do feel some negative emotions, of course; but I know that it’s possible to live a good life with diabetes. My fear of diabetes related complications is much less than my fear of dementia.

I hadn’t meant to write about difficult experiences in my life, but yes: they are also part of life, and many of them have nothing to do with diabetes. The past 15 years have included weddings, births, joys: wonderful family Christmases, when Mum played ‘Mother Christmas’ to our large family: visits from overseas relatives, contact through Social media with relatives, friends, strangers. Yes food is pleasure, but there are other pleasures. Exercise is pleasure. Doing things for others is pleasure. Growing things, writing, taking photos, playing with children, doing good work, talking with friends from all over the world, these are all pleasurable.

Life is Good. Life is a river, it flows. Life is truly a journey, with opportunities for rich experiences that include the difficult ones, and the easy ones: spontaneous ones and planned ones. Seize the moment, take opportunities when they arise. Life is more than diabetes: it includes things that are harder, and worse: and things that are easier, & better..Life is for the Living.

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Helen Wilde

carpe diem

Helen is a Senior Counsellor with Diabetes Counselling Online. She is also the parent of someone diagnosed with diabetes in 1979. She has lived with type 2 diabetes herself since 2002.

 

 

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After the #party’s over: #guilt #regret #acceptance

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So, the Moveable Feast of Eostre, the goddess of spring fertility, is upon us once again. It’s Easter. We have a full moon, rabbits & chickens, chocolate & sweet fruit buns with a cross baked into the top. For some religions, there are other, more sombre & deeply significant symbols associated with this part of our annual calendar. For most of us, there are 4 days off work, at a time of year when the moon is full, when the day & the night are almost of equal length, with the equinox falling just under 4 weeks before Eostre in 2014, on March 20th. The weather is generally pretty ‘liveable’, whatever hemisphere of this bounteous Earth we are living in.

The stage is set for a time of rest & relaxation, of time with family & friends, of contemplation, & of feasting. In our Northern hemisphere heritage & tradition, even though we are now living in the Southern hemisphere, the annual cycle away from the darkness & deprivation of winter means it’s time to make special purchases of foods that we normally reserve for special occasions: weddings, parties, birthdays, anniversaries. Some observe religious abstinence of some food for part of this time; but all spend at least part of this time feasting.

For about 38 years, our Easter has involved spending time with our extended family. In the early days, these Easter gatherings were held at our house in a small inland country town. We actually sent out invitations, & at first our brothers & sisters & our own parents came, bringing children, the occasional great grandparent, & the occasional dog. We needed caravans & tents for everyone to be able to sleep under cover, & occasionally the bathroom & septic tank struggled to cope. Luckily we were only a short walk from the Public utilities. The cousins bonded for life.

Later, once we acquired our scruffy little fibro beach shack, all the growing cousins brought friends; girlfriends, boyfriends. Meals were mostly eaten outside, huddled away from the sea breezes in a cold year, or gloriously somnolent in sunshine in a warm year. That’s the thing about Easter: it’s a Moveable Feast, so the weather can be like the end of summer; or it can be like the beginning of winter; or even both. We still needed a caravan or a tent some years, but bunks, sofa beds, mattresses on the floor, two showers & an outdoor hose, & two toilets helped a great deal. The septic tank needed regular emptying.

I remember a lot of laughter from those years. For most of those 38 years we were at the beach shack, & our time was taken up with sandcastles, swimming, searching rock pools for little crabs, midnight Jetty fishing excursions, sailing, rowing in a kayak or canoe. Food was abundant of course, as were leftovers. We played cards with gum nuts for stakes, Coon can, Pontoon, snap.

Andrew's tender
Andrew’s tender

Nowadays our eldest daughter brings her family & we spend about 5 days at the shack. This year, because of the school holidays & other plans our family holiday ended on Good Friday. Traffic on the road to Adelaide was building up, & so they left before lunch today.

Our party this year included a full eclipse of the Moon, two red moons in a row, sunsets & dawns that were peacefully beautiful. Oh & the beginnings of a mouse plague. We swam in the sea, laughed, played games, built sandcastles & lego cities. We spotted our resident gecko, still skittering about inside the shack. We put down mouse bait, & threw out one little corpse. We enjoyed the fun of a 5 year old who wakes bursting with energy at 6.30 a.m. & wants to play baby pelicans (learning to fly & land) baby galahs, or baby seagulls. We enjoyed the seriousness of a tall 15 year old, who wants to share his thoughts & opinions about a myriad of topics. Both children are bursting with the joy of life.

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Sure, we did enjoy some great, simple, homecooked meals. We didn’t buy takeaway. We didn’t eat chocolate. We didn’t have any chocolate with us. There are 3 people with diabetes in our party, & we aren’t that fussed about chocolate anymore. After the party’s over, what happens? There are the mechanics to be gone through: cleaning up, working out what to do with leftovers, perhaps extra sheets & towels to wash, if you’ve had house guests as we’ve had. But there is no time to waste on regret, guilt, or ‘shouldn’t haves’. The motto of ‘Acceptance‘, ‘going with the flow’, is the mantra that my daughter repeated many times over the past 5 days. ‘Don’t sweat the small stuff’ in life, whether it’s about food, children’s behaviour, TV programmes, the timing of how a day runs on holiday. It’s OK to change your mind, & also to accept that in many cases whatever decision you make is just fine. Managing diabetes is organised, stressful. Reducing stress can be as simple as letting go of the ‘need’ to be the one who manages, who seeks to ensure that everything is covered. It’s actually OK for things on holiday to not be tightly planned & organised.

Technically,our party is over for this year. Last night I was woken from sleep at 1 a.m. by the sound of young girls laughing out the front. Now I hear the sound of other people’s holiday long weekend just starting. People have arrived, having made a long drive from somewhere. My elderly neighbour on one side is from the Adelaide Hills, & he is having a Prawn feast with his extended family, including a new great grandchild. His elderly red dog is resting outside in the shade. On the other side, the young family of the second son is cooking up a Sausage sizzle. Their dog is a middleaged lab, all protective when he needs to be, & all tail waggingly friendly when he doesn’t. Everywhere I hear children playing, birds calling, wind, the sound of the sea on the shore. Out the front, two little boys aged about 9 are walking past, wearing shorts & fleecy jackets.

We have decided to stay on a little. I have been very unwell, & am still moving more slowly than usual.There is a lot to do. We have no need to rush back to the city, where our daily lives are. And it’s still so beautiful here. Our original plan was to head back today, but slowly our plan evolved into a different one. Acceptance includes being flexible, open to what life brings.

happiness comes from letting go of guilt
happiness comes from letting go of guilt

carpe diem

Helen

Helen Wilde is a Senior Counsellor with Diabetes Counselling Online. She has been the parent of a person with diabetes since 1979, and has lived with Type 2 diabetes herself since 2001.

 

 

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Online Balance

Sometimes you need a moment away from diabetes. It is so consuming, so in your face, so part of nearly every moment of your day, that sometimes you need to step back and say “enough”. Trying to find this balance can be a challenge. You don’t want to forget about it , or neglect your diabetes, but some days, you just want to push it away a little so you can focus on the rest of your life.

Part of the balance is in finding good support systems. A place, people, a forum, in which you can seek support on the days you need it, but also, feel you can step out of when needed. Too much of a good thing can be a bad thing as they say. Social Media is offering people with diabetes connections like we have never had before. When I got diabetes the only option for me was a camp for kids with type 1 diabetes and I totally rejected it. I was not ready for this mass gathering of all of those people with diabetes. At that stage I did not identify myself with diabetes. I wanted to hide from it. Twenty years later when I had accepted it and wanted more than anything to find people who got it, there was nothing. So I started Diabetes Counselling Online!

And here we are, 12 years later, with a massive online network for people with diabetes and most other conditions, problems, issues and passions you could think of. Everyone is online. So much so, that we know people are starting to lose the ability and desire to communicate in person. Kids are losing their motor skills due to lack of writing and too much swiping screens. People are hooked up to technology 24/7. And I am one of those people who is constantly connected via my smart phone which is kinda not really that smart.

I try to take the weekends to stay as unconnected as I can to the online world and as connected as I can to my family and the world around me. It is tough. There is always the thought to share a photo, upload a thought, write a blog……check what other people are up to. Ultimately I end up not working online so much on the weekends, but still jumping in and out of the online space as I wander through the joy of a weekend with the kids, pottering around, having outings and living life.

Does the online diabetes community offer you greatly needed support? Yet do you sometimes feel obliged to connect? Do you sometimes experience online overload? Or do you feel a good balance between on and offline life? If you can do that then you will find peace with diabetes and with yourself. See you on Facebook :-)

let go

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Shut UP!

I am not a tightrope artist, yet I walk a tightrope every day. I am no juggler, yet I can juggle a million things all at the same time. I get dizzy easily and can not tolerate spinning around without feeling sick, yet I ride a roller coaster often. I am not a doctor, yet I can treat my ailments all by myself. Mathematician I am definitely not, yet I complete complex formulas multiple times a day. I am a very open and sharing person, yet I keep many things to myself that nobody else would understand. I am a person living with type 1 diabetes.

It may seem to people who don’t live with diabetes one of two things.

One, that it is an easy and simple thing to live with. “A bit of sugar”. A “just eat healthy, exercise and take your insulin and she’ll be right” kind of thing. A thing that once the initial diagnosis has passed and everyone else has got back on with their own lives, free from thinking about every morsel of food you put in your mouth, free from watching countdowns on beeping machines dozens of times a day to see if you can eat, exercise, sleep, breathe….that it is no longer an issue.

To the person living with it, it does not really ease into the background. Sure, it gets easier. Sure you learn a lot, about your body, your diabetes and yourself. You can get on with life and live a good life, a happy life, an adventurous life, an enviable kind of life. But, it is not simple. It is not easy. And it most certainly is not in the background. Getting on with life does not mean getting away from diabetes. It simply means you have worked out how to have a life that can have diabetes in it.

Or, two, it may seem that all the person with diabetes THINKS about, is diabetes. All they TALK about is diabetes. They are ALWAYS posting things on facebook and Twitter about DIABETES. Social Media has created a DOC (or diabetes online community for those not in the know) which connects people with diabetes across the world. People who don’t have diabetes may think “for god’s sake, is there nothing else in your LIFE?”. They may be turned off by the status updates asking friends and family to donate to one of the many diabetes charities (my own included). May feel horrified by the posts about children or young people who have died from their diabetes…..or may feel angry and say “serves you right” to the overweight person with type 2 diabetes as they “caused it themselves”…. ignorance gone mad.

Sadly there is a division between type 1 and type 2 diabetics on this front also, with misinformed type 1’ers blaming people with type 2 for causing all of our problems, for making the world think all diabetes is caused by eating to much sugar and that as a person with type 1 diabetes we did not cause our diabetes, we are somehow better and more deserving. This saddens me more than anything. Having worked in diabetes for over a decade I now understand the complexities behind why people get diabetes – all types – and the complexities behind overweight and obesity (which by the way is not always a cause of type 2 diabetes, it is just one risk factor).

And I can tell you now it is NEVER anybody’s fault they get diabetes. And there should be no blame.

Sometimes I do feel like people around me don’t have any real idea about what my life is like with diabetes. Sometimes I do feel like all I see, hear, talk and think about is diabetes. It is my life, my work and my passion. I did not ask to get this disease. I do not have to like it. But I can sure as hell harness it to become something that matters in my life and do something that matters because of it.

And if you don’t like hearing about it, log off.

 

 

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Is waiting what life is all about?

Waiting. I sometimes feel like I spend my whole life waiting. Waiting to grow up, to get my license, to leave school, leave home, leave town. Waiting to get out of bad relationships and in the the “right one”. Waiting to get married, to get pregnant, waiting for babies to be born. Waiting for kids to get up, get dressed, eat, brush their teeth, go to bed. Waiting in lines, on phones, at check outs, in car parks…. waiting for the weekend (so I can spend time with the kids), waiting for the weekdays ( so I can get rid of the kids and focus on work – what is that about?). Waiting for people on the phone, for the right help, for someone to help me. Waiting for browsers to refresh, for applications to work on my computer (or not), for the latest software, latest phone, latest social media app. Waiting to hear about whether our charity won a grant or not, if sponsors are back on board, or not, will we survive? Waiting for my kids to be toilet trained, sleep in their own beds, start school, finish school, get home safe. Waiting to go on holidays, waiting to get home again. Waiting for my blood glucose to go up, to go down, to settle down, waiting for a cure…….endless waiting.

People have said I am “impatient”. So what does that mean? That I am not good at waiting? Given the amount of waiting I do, I beg to differ.

While waiting for an application I was trying to edit my Facebook pages with to work today, over and over again, with multiple browsers open on multiple tasks all at once, it got me to thinking about waiting.

Is waiting just the fill in time between what we DO in life? Between where we are and where we want to be or go? Or is waiting the point of it all? Given the amount of waiting I do, should I be seeing the “waiting” as my life? Or perhaps this is my calling? Maybe I was BORN to wait? Given I was a waitress as a teenager and young adult and in fact quite enjoyed waiting on people, maybe this is the case.

Given I live with type 1 diabetes and spend hours and hours of my life waiting for results on blood glucose machines, waiting for my blood glucose to go up when low, go down when high, for my insulin pump to need changing, for doctor’s appointments, in doctor’s rooms, for the complications to set in, to get worse, for my diabetes to be quiet and GIVE ME A BREAK….I am thinking that perhaps, yes, waiting is what life is all about.

So here is my challenge. I am going to see waiting as an opportunity, not a pain in the arse. Instead of feeling rushed, stressed, impatient – each time I have to wait, for whatever it is – I am going to say “Waiting is my life. This is what it is all about. This is not the in between stuff, this is it” and I am going to damn well like it.

Oh, except the waiting for a cure bit – that bit I think I am a little bit over. 33 years is a very long time to wait and I am not sure anyone would stay in line for that long.

Happy waiting.

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