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Support comes in many shapes and sizes. When it comes to life with diabetes, I have always been lucky to have a support network village that consists of family, friends, a brilliant healthcare team and Nutella.
In the last few weeks as I have been dealing with more than just diabetes I have realised just how wide my support system really is and it’s surprised – and humbled – me.
Obviously, publishing an incredibly raw and honest piece on a news forum that gets over a million hits per month means that there are a lot of people out there who now know what I am living through. But then, I’m an oversharer, so ‘puttin’ it out there’ has never been something I’ve shied away from.
When it comes to diabetes, having that network to lift you up in times of frustration can mean the difference between sinking into a period of serious burnout and feeling like you have ways to cope. Knowing that there are people there to help you out – no matter the time of day – can be the difference between feeling isolated and feeling that you have someone’s shoulder to lean on. (I will once again send out a message to the DOC who has been that difference on more occasions than I could mention.)
One thing that I have learnt in my years having diabetes and when faced with particularly challenging times is that having someone say ‘Are you okay?’ or ‘I know this must be a hard time for you. I am here for you.’ helps more than words can say. Just knowing that people care and are thinking of you gives incredible solace.
We don’t always know what to say and we sometimes worry that our words may unintentionally hurt. So we say nothing. We think that it’s the better option. And perhaps we worry that if we ask someone how they are going, the chance of them dissolving into uncontrollable tears is something we just don’t want to risk. But personally, I’m always ready to take that risk, because I want people to know that they are being thought of and cared for.
Not everyone is comfortable talking about their life and not everyone is happy to ask for support. Sometimes we try to be stoic and strong for ourselves and those around us and sometimes we just want to pretend the crap stuff isn’t happening. Often, we don’t like to let people know we’re not coping or dealing with something particularly difficult. And in the time of Facebook when we only put forward our very best self (‘look! I’m on holidays/at a cool new café/eating Nutella’) we hide the tough stuff.
But when we do talk about it, it’s so wonderful and reassuring to have people reach out – it makes us feel safe. Right now, I feel so very safe and protected thanks to the many people who have reached out. And I want to say thanks.
Half and Half in iced coffee. God bless America!
After an absence from writing here and an absence from Australia, I’m back! Seven weeks away which involved attending a couple of fantastic conferences, visiting favourite cities and discovering new places, hanging out with old friends from the diabetes online community and making new friends, and spending quality time with my family. I was also introduced to the horror wonder that is American Girl much to the excitement of the eight year-old kiddo and the shock of her parents. I ate lots of yummy food and am in rehab for my Half and Half addiction.
Red velvet cupcakes make these girls happy!
Now I’m back and as I try to acclimatise to the weather (it was 40°C the day we left NYC and 7°C the day after we returned to Melbourne) and dealing with stupid jet lag, I am also coming to terms with a lot of other things. While we were away I had a miscarriage.
The Great Wall of Jelly Beans at Dylan’s Candy Bar in NYC.
I left Melbourne for Paris feeling hopeful – I was in the early days of a pregnancy, and Aaron and I were quietly excited about the much-longed for addition to our family. And until four days before we were due to come home, we got ever more hopeful and confident that we would be returning home with some extra special excess baggage and exciting news to share with our friends and family. It wasn’t to be. I miscarried just over 13 weeks into the pregnancy.
Hanging out in Washington Square Park
I am recovering slowly but surely. I know that time allows for healing. I also know that sharing stories and talking about things helps the recovery process. Yesterday, a piece about my miscarriage was published at Mamamia. You can read about it here. It is raw and emotional and I wrote it to try to explain to myself and others the conflicting emotions with which I was dealing at the particular moment when I had to let go of my hopes.
I’ll be back writing at Diabetogenic next week – sharing some of the things about my holiday and the conferences and talking about real-life with diabetes. And about how making my own Half and Half turned out.
Let’s go Yankees!
Today, for the first time in my ‘diabetes-life’, I am wearing a medical-alert bracelet. After a hypo last night that resulted in paramedics, IV dextrose and at-home hourly BGLs (just so I could avoid going to A&E), I pulled out of the draw the bracelet I bought a couple of years ago and put it on.
I have resisted wearing medical-alert jewellery for 15 years and I’m not really sure why. I have never been backwards in coming forwards about the fact I have diabetes and I am certainly not in any way ashamed of living with this condition.
But for some reason, in my weird and twisted mind, the wearing of a piece of jewellery that brands me as ‘type 1 diabetes/insulin pump’ (as the inscription on the back of the tag says) was just too much for me to deal with. I have always associated it with the idea that I would not be able to deal with my diabetes myself; that I’d need someone else to help me and that there would be emergency situations. I’ve pretty much avoided these circumstances so far. Until last night.
So today, I located the bracelet and linked it around my wrist. It’s quite pretty to look at, provided all I can see is the bracelet part and not the tag . But each time I catch a glimpse of it – as I am typing at my computer; as I sat in a café drinking my morning coffee; lifting my arm to push hair out of my eyes – I feel defeated and somewhat branded.
I’ve always wondered about people who get tattoos which proudly declare they have diabetes and I’ve never understood why anyone would do that. I just don’t understand why someone would want to have their health status permanently tattooed to their skin. I’ve always thought if I was to do that, I’d need to add all the other ways I want people to think of me. And having ‘Harry Potter tragic’ or ‘Delusions of Nigella Lawson’ scrawled up and down my arms would just be silly! Again, it’s not because I’m ashamed of having diabetes. Perhaps it has more to do with the fact that I defiantly go against what everyone else is doing and I quite like being the only ‘un-inked’ person in the room. Of course, this is merely my own opinion and I absolutely don’t think any less of people who choose to have a diabetes tattoo. Maybe if braver, I’d do it too.
I’m heading overseas in a couple of weeks for a long trip and for the first few days, I’ll be alone, without my family. It’s probably a smart idea to have something on me that says I have diabetes – just in case something happens. Maybe it will give me some peace of mind, as I’m sure it will my family.
But for today, I’m feeling fragile and not particularly happy. Not happy that now I feel unsafe and feel the need to have something that (in my mind, and I’m sure my mind alone) screams ‘TYPE 1 DIABETES’. I feel that it’s a victory to diabetes. And I hate losing.
Lauren’s Hope jewellery has some gorgeous designs. My bracelet has five strands of black Swarovski crystals holding together the medical-alert tag. It’s quite beautiful, really!
It’s Diabetes Blog Week thanks to Bitter~Sweet Diabetes. This week, over 150 diabetes bloggers from all over the world are taking part and sharing stories about their lives with diabetes. This is the second year I’ve participated and I can’t wait to read what everyone else is up to. So, here we go with Thursday‘s topic……
It’s very easy when we’re talking about our accomplishments with diabetes to think only of the ‘big stuff’. Yesterday, I wrote about the day my daughter was born and when it comes to diabetes achievements, that day and the nine months leading up to it get a huge tick.
But I think that for me the greatest achievement has been learning to live side-by-side with this condition. It took me a while to understand where diabetes fit into my life and it wasn’t until after I’d actually accepted that I needed to grieve for the life that was that I realised that I could live, live well and be happy despite diabetes.
I am really pleased that I can honestly say that diabetes hasn’t stopped me from doing anything. I have never used it as an excuse (okay – those times I pushed in line at a cupcake shop don’t count, right?) and I have never felt that I should be pitied for having diabetes. It’s part of my lot in life and as crap as it can be at times, it’s become part of the fabric of my life.
I never thought that I’d be able to see diabetes as ‘just there’ rather than a big, scary thing that needed to be controlled. Perhaps it was when I gave up the need to micro-manage every aspect of living with a chronic health condition that I worked out how to co-exist with it. This absolutely doesn’t mean that I don’t hate it at times and wish it wasn’t there – of course I do. Accepting that it’s here forever was tough and made me angry for a while. And of course, I get frustrated and pissed off when it rears its stupid head when I just don’t have time for it, but that’s the nature of diabetes.
I can’t change the fact that my beta cells took a permanent holiday without me. I can’t change the fact that for the rest of my life I will be living with diabetes. I can’t change what’s around the corner – even though I can do what I can do try to minimise risks. I can’t change that there are no guarantees.
But I have accepted that it’s here. And I feel pretty proud of the life I am living because of and despite diabetes.
Follow Diabetes Blog Week on Twitter by searching the #DBlogWeek tag.
It’s Diabetes Blog Week thanks to Bitter~Sweet Diabetes. This week, over 150 diabetes bloggers from all over the world are taking part and sharing stories about their lives with diabetes. This is the second year I’ve participated and I can’t wait to read what everyone else is up to. So, here we go with Wednesday‘s topic……
They may be few and far between, but there have been days where I feel that I have conquered diabetes and none more so than the day my daughter was born. Even though it was eight-and-a-half years ago, I can still remember every detail of her delivery and first day in my arms so clearly.
Even though the day was all about meeting her, diabetes was prominent. It was because of diabetes that she was delivered at just under 38 weeks. It was because of diabetes that I decided to have a caesarean delivery. It was because of diabetes that the operating theatre was full of medics including a paediatrician. It was because of diabetes that the moment she was lifted from my body and briefly held up for me to see, she was whisked off to have her heal pricked to check her BGL. It was because of diabetes that she was later taken to the Special Care Nursery because her BGLs had dropped.
But despite diabetes – despite all the things I’d been warned about and the things I read – I had a beautiful healthy baby girl. She is my greatest achievement and these memories are my most precious. Despite diabetes, I was up by the afternoon visiting her in the nursery and breastfeeding her as I muddled my way through my own low blood sugars.
I wonder if I will ever forget the details of the day. The way Aaron and I looked at each and gasped when we heard her voice for the first sound; the way I tore away at her swaddling so I could feel her skin against mine when I first held her in the minutes after she was delivered; the way her hands opened and closed around my finger; the way that Aaron looked as he held her when I was wheeled back into my room after recovery. Everything seemed right – our much wanted baby was with us and she was healthy.
I don’t think of this day as a ‘diabetes day’. It’s the day of my daughter’s birth. But as with all my days, diabetes is there. This particular day makes me so proud because of the way I was able to manage my diabetes; deal with it in a way that worked and then get on with the important things. The most important thing ever – meeting my daughter.
Follow Diabetes Blog Week on Twitter by searching the #DBlogWeek tag.
It’s Diabetes Blog Week thanks to the very clever Karen Graffeo at Bitter~Sweet Diabetes. This week, over 130 diabetes bloggers from all over the world are taking part and sharing stories about their lives with diabetes. This is the second year I’ve participated and I can’t wait to read what everyone else is up to. I’m in for a lot of very late nights! So, here we go with the topic of Monday……
Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your daily life with diabetes? On the other hand, what do you hope they don’t see?
I have frequently commented on how lucky I am to have a health care team that consists of some pretty amazing people. My endo actually does read my blog and recommends it to not only other people with diabetes, but also to endos-in-training. I completely understand how unusual this is, but it makes me realise just how fortunate I am to have a HCP who has some insight into my real-life with diabetes. Or at least, the things I’m prepared to share!
So, because of that, I’m going to concentrate on the second part of today’s topic – the things we don’t want them to see.
And the truth is, there’s nothing I don’t want them to see. I could say that I’d prefer they didn’t know about the days where my meter doesn’t see the light of day as it languishes around the bottom of my bag; or the days where my CGM graph looks like a mountain range; then there are the days where I know I should do a line change, but can’t be bothered and just deal with the higher BGLs and the angrier and redder cannula site; oh, and the culinary delightful days where my total nutritional intake consists of three coffees, a jam doughnut and a piece of toast with Nutella.
But I believe that this may be called life. And it’s important that they know these days are kind of typical! I am not perfect in any aspect of my life, so why should I pretend to be when it comes to my diabetes? And why should my HCPs be presented with only the stuff I do ‘right’?
I want my HCPs to see real-life with diabetes; which is basically real life. With diabetes sprinkled on top! We all have so much more going on. Diabetes? Of course it’s a part of me, but it needs to fit in with the rest of my life. And for me, that’s one of the most difficult things about life with diabetes. How do I manage to do the things I’d like to do to feel healthy, strong and well but keep things in perspective?
Actually, perhaps that’s one of things I’d like HCPs to see and know – I’m trying. Each and every day I’m trying. And that is more than enough!
Follow Diabetes Blog Week on Twitter by searching the #DBlogWeek tag.
Diabetes is the natural enemy of the frock. Yes, it is! There are countless discussions on Facebook and other diabetes forums that could all pretty much be headed ‘where the fruitcake do I put my pump?’ I know of pockets sewn into dresses, invisible hooks added to wedding gowns and incredibly-difficult-need-instructions-to-use contraptions whose only purpose is to keep the pump hidden, yet accessible.
This is the dilemma I was faced with the other night as I frocked up for the gala dinner celebrating Diabetes Australia – Vic’s 60th anniversary. Alas, where to put the pump. Due to a very low cut back, the dress had in-built supports as a bra couldn’t be worn. (I could now go into a discussion about how I’ll need therapy for the Hollywood tape I was required to wear, but let’s stay on topic.)
I toyed with the idea of leaving my pump home and using pens for the night, but the thought of calculating basal insulin, then blousing made my head explode a little bit. I thought about not worrying about dealing with basal insulin and doing tiny corrections every hour or so, but I knew that I’d remember for the first hour and then completely forget about it for the rest of the night – or, at least, until I realised I was spending a lot of time running to the loo and chasing down waiters to fill my water glass.
So, I started thinking about a holster for the pump. I used to have one made of stretchy material that was held in place with a Velcro catch. There was a little pouch for the pump and the whole thing was meant to sit snugly on the thigh. And it did…until it started to slide down the leg and I was left doing some sort of weird two-step, trying not to trip over the pump tubing while attempting to reconnect the whole thing. Please, just picture the elegance, if you will.
Despite my husband kinda liking the idea of me wearing a holster, the thigh thing was a failure.
A woman I work with – who for the purposes of this will be known as Brilliant Sue (because she is brilliant and her name is Sue) suggested Tubigrip which is a stretchy, tubular bandage.
It worked a treat. The pump stayed exactly where I wanted it (inner thigh, so no tell-tale ‘pump bump’ showing through the dress, and was easy to access when I needed to bolus or check my CGM.
Unfortunately, the flesh coloured stretchy fabric didn’t look too hot, but given that the only two people who saw it were me and Aaron, it did the trick.
So while to everyone else there, I looked like this…..
…..all I could think about was how diabetes manages to take the glamour of dressing up down a notch, thanks to this:
But despite the delightful flesh-coloured bandage, I had a great time. And if truth be told, the most traumatic part of the night was the Hollywood tape. Now that is the stuff nightmares are made of!
I hate to jump on any bandwagon, but I’m jumping on this one – boots and all! Some of you may have seen the petition that is going around at the moment about changing the name of diabetes, or rather revising the names of type 1 and type 2 diabetes to better reflect the nature of the conditions.
Yesterday, I read a most thoughtful and well-considered commentary on the issue by Queen of Diabetes Art Lee Ann Thill. (I don’t know Lee Ann personally, but I adore the work she does around Diabetes Art Day and her brilliant project the VIAL Project.)
Lee Ann suggests that changing the name of type 1 diabetes to better distinguish it from type 2 diabetes is not going to do anything when it comes to public understanding of diabetes. She’s right. Stop for a minute and think back (if you can) to a time where diabetes wasn’t part of your life. How much did you truly know about the condition? Did you even know there were different types of diabetes? Could you identify the myriad ways type 1 diabetes is treated?
Did you know that there are four types of multiple sclerosis? No, neither did I until I asked Dr Google. (Although, I did know that there was one called relapsing-remitting MS because that’s what Jed Bartlet had in The West Wing, so naturally, I’m an expert on that!) And is it really important that as a person who has no connection to anyone living with MS that I have an in-depth knowledge about it? Or understand how it impacts on the life of a person with MS? Should I be expected to understand that primary-progressive MS is different to progressive-relapsing MS? My tiny little brain is already pretty full of information I need (location to closest decent coffee shop) and useless info (being able to quote Marx Bros films), so I’m not sure that I have room for minute details about living with MS or any other health condition other than the one I have to deal with daily.
I understand how frustrating it is to have people tell me that they can cure my diabetes if only I’d stand on my left foot under the full moon on a Tuesday in November and lots of other things. But I don’t think that changing the name of diabetes is going to stop people offering these gems.
What we really want to fix are the people who are being stupid and insensitive. And I’m afraid that’s just not going to happen.
Diabetes sucks – I think that’s one thing upon which we can all agree. And there are some really significant and important issues that people living with this condition face on a day-to-day basis. Such as access to healthcare and to technology; inadequate healthcare; kids being safe while at school; discrimination in the workplace; emotional wellbeing;
None of these issues will be solved or made better for people with diabetes by changing the name of the condition. More funding is needed to improve access to technology and increase the number of HCPs (especially in rural and remote areas); better education and training is needed to improve HCPs’ knowledge about diabetes and real-life with diabetes; more training – compulsory training – is needed by the people who are charged with looking after kids in school and out of school hours care; tougher penalties may stop discrimination in the workplace; regular screening is needed to identify the emotional health of people with diabetes.
Surely, but surely we should be directing our energies towards these issues. I have accepted that when it comes to diabetes I am going to spend the rest of my life dealing with ignorant, stupid and insensitive comments from people who could be described using similar adjectives. Changing the names of type 1 and type 2 diabetes won’t magically make people stop being so ignorant. It would simply add another layer to the confusion.
I’ve lost a bit of weight over the last three or four months. Not intentionally, just because stuff has been happening and I forgot to eat. The truth is a lot more boring and not relevant to this blog at all, but the easiest way to explain it is that November last year was crazy-busy, stressful and little food was consumed. Whatever.
Apparently, it’s okay to comment on people when they’ve lost weight. And with it comes a lot of praise – as if it’s something of which I should be proud. But I know that the tough few months I’ve had is the reason I look this way, so when I stand in front of the mirror, I don’t see someone who looks good in what she’s wearing, I see someone who is looking tired and a little defeated.
It is another example of just looking at what is in front of us and not trying to work out what is going on behind the scenes.
My HbA1c is sitting in the low 7s at the moment which of course, would have every health professional alive patting me on the head and calling me a ‘good diabetic’. Well, thank you. But the reason for it is a combination of erratic highs and lows, and not eating much which does wonders for keeping a steady line on the CGM.
The truth behind results – whatever those results – can be more than a little deceptive. And being the person I am, I want people to know the truth. Well sort of. I want people to know that I haven’t been trying to lose weight out of vanity. It metaphorically has fallen off me because I’ve been stressed and busy and barely eating. So the numbers on the scales (if I bothered to weigh myself) wouldn’t be a reflection of effort at all. Equally, my A1c isn’t because of hard work; it’s because the limited food has helped, and the highs and lows have averaged out. I’d feel like a fraud if anyone thought anything else.
It’s all too easy to take what we see at face value and assume that what we see is what is real. But the two are completely different things. I’m never sure how much I should pry into what is really going on in others’ lives and I certainly don’t want a million questions thrown at me. Is a ‘you look good’ comment all that’s warranted when discussing weight loss? And should an in-target HbA1c be taken as an absolute that needs no further investigation? Honestly, I don’t think so.
The devil is in the detail, I guess. But making assumptions and not delving deeper will never get the truth. It will only tell half the story.
A self-awareness exercise I came across recently had me facing some interesting facts. The idea is to list things that you regret having done or not having done and then seeing how you could address each regret. And also, to think about why you did or didn’t do the thing you regret doing. Or not doing. (Okay, those last sentences made way more sense in my head that it does on paper, but hopefully you get the idea.)
The regrets have to be things over which you have some control. So saying ‘I regret I’m not taller’ doesn’t count. Unless you deliberately made yourself shorter by sleeping in a shoebox. Or something.
So, I sat down, got honest and wrote down the things that I do regret and here are some of them:
- I regret not having lived overseas
- I regret giving up playing the flute completely
- I regret not having another child
- I regret not buying those red shoes I saw at Bloomingdales the first time I went to New York City
- I regret waiting until I was 36 before visiting New York City for the first time
- I regret getting a perm when I was in secondary school. What was I thinking?
- I regret the times I ignored my instincts – they were always, but always spot on!
- I regret not being able to speak Italian. (But I will continue to say that all it would take is six months in Venice for me turn my high-school skills into fluent Italian. And I have the hand movements down perfectly!)
- I regret not telling my family that I love them more
- I regret wearing white jeans. Ever
- I regret not having seen Frank Sinatra sing live
- I regret spending my teens, twenties and now thinking I was (am) fat and trying to hide my body when it is perfectly fine
You get the idea. I then tried to do the same exercise, but based on how I feel about my diabetes. Did I have any real regrets? My list looks like this:
- I regret waiting three years before starting on a pump
- I regret not finding my endo from the beginning of my diagnosis
- I regret any and all of the guilt and shame I have felt about having diabetes
- I regret not speaking with someone about diabetes sooner and understanding that it’s okay to grieve
- I regret feeling the need to be stoic all the time and understand that sometimes it’s okay to say ‘this really sucks’.
I actually am quite proud of my diabetes list of regrets. So much of diabetes is out of our control. Whether we’re talking about our diagnosis or complications which we may or may not develop – sometimes despite our best (and worst) efforts – we sometimes still get dealt something that we hoped would not happen.
I guess for me, I don’t want to look back and say ‘I regret not having seen my ophthalmologist frequently’ or ‘I regret not having my kidney check done each year’, because if something happens, I don’t want to think that I could have prevented it.
Let me be clear. This is not a blame game. I know people who could make a list that would have no regrets at all because never did they miss a screening check, never did they see an HbA1c result above 7.0% and still have developed complications. I just want to be able to say I did everything I could to help. It’s as much control I can claim over this condition. A condition that really doesn’t understand what control is.
So, what are your diabetes regrets?
Diabetogenic 