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It’s the fifth annual Diabetes Blog Week, with thanks to the lovely Karen Graffeo from Bitter~Sweet Diabetes. Today’s we’re writing about the emotional side of diabetes. Come back tomorrow for the next instalment, and in the meantime, check out #DBlogWeek and follow along!
There is a dark place in my mind that is locked most of the time. Usually, I manage to keep it closed away and it remains hidden.
And when I am feeling strong and robust and life is moving along at its usual pace without too many problems, I am not tempted to go to the dark place, to open the door and examine what’s hidden.
But when I am feeling vulnerable – for whatever reason – and my defences are down, I peek. Stupidly, I go in, treading carefully, cautiously looking around. To the dark place.
The dark place is the fear that lives inside of me about diabetes. It’s the fear of today, of tomorrow. And of the unknown. It scares me and it scars me. It makes me feel fragile; breakable. And highlights how broken I am.
In the dark, I feel the relentless-ness and the never-ending-ness and the overwhelming-ness of diabetes that I usually simply expect – and accept. Suddenly, the day-to-day and more-than-manageable tasks that I need to do seem impossible, daunting, too big to contemplate.
The dark place is quiet, the only sound is my amplified heartbeat.
I’ve learnt to breathe slowly, see the dark place for what it is, allow myself time to visit, accept what is there and then close the door. I come back and face the light and life and the people I love. I go to work, I see my friends, I bake, I drink coffee, I listen to music. I look like I am living my life – and I am. But when I’ve visited the dark place, I am scared and look over my shoulder. I feel oppressed and fatigued. It takes me a while to fully come back – sometimes only a day or two, sometimes longer.
This is my emotional side of diabetes. This is the dark place. This is the exhaustion of diabetes.
Yesterday’s post about waiting to see my GP for 90 minutes past my scheduled appointment received some interesting comments and feedback both here on the blog and on Facebook and Twitter. Most people seemed to agree that the GP clinic displayed a lack of courtesy in not calling to let me know of the significant delay I was about to experience because my doctor was running so behind schedule. There is a great comment from a doctor providing the ‘other side’ of the story which makes for some interesting reading.
When I eventually was seen by my doctor, he apologised for the wait. He was incredibly sincere and said that it was ‘just one of those days’. I asked him what was the clinic’s policy when doctors were running considerably behind and he said that reception staff should call patients to let them know that there would be a wait, and inform the patient of the time they should show up to avoid sitting in the waiting room for too long.
He was upset – and very apologetic – that this had not happened in my case, and said that, quite simply, it was not good enough to expect people to wait for so long. He followed it up with the reception staff after my visit. And I spoke with the receptionist too as I was settling my bill. She said that they had been calling some doctors’ patients that morning, but not my GP’s. She also apologised.
So the wash up in all of this isn’t really that I had to sit around for 90 minutes. It’s that as a person who, unfortunately, has to spend far more time than I’d like to scheduling and attending doctors’ appointments, I do all I can to streamline the process as much as possible. I also understand the system – just like many other high-users do and try to manage it as best I can.
I was more than satisfied by how my GP dealt with the situation yesterday. There is a great comment on the blog from Rosie Walker who said if ….everyone’s time is considered equally valuable…. there will be acknowledgement, explanation and apology for people who are waiting and effort made to try to address the situation, invite suggestions or comment on how things could be improved. Really, that is all that I am asking for.
Sophia Loren is said to have once quipped ‘Everything you see, I owe to spaghetti’. Well today, the morning after a hypo that woke me at 3.15am and didn’t let me fall back asleep until after 6am, everything you see, I owe to coffee. I’m on number four.
Have a great weekend! A reminder to check out the Diabetes Stigma Project and consider making a donation.
And for your Friday listening pleasure, here’s some Keith Jarrett with ‘Long As You Know You’re Living Yours’.
I stick needles into my skin, I shove insulin pump infusion sets into my sides, I rocket-launch CGM sensors into my stomach, I jab my fingers, I unflinchingly hold out my arm for blood to be taken and I roll up my sleeves for my annual fluvax without batting an eyelid.
Needles don’t scare me one little bit. I don’t even feel my heart rate speed up when a needle is coming at me, and although I’ve never checked, I’m sure that if wearing a blood pressure monitor while waiting for a needle to break the skin, there wouldn’t be a blip on the graph.
But other pain? Other pain I don’t deal with quite so well.
This morning, I stubbed my toe on the end of the bed. I collapsed onto the mattress, yelling ‘shit, shit, shit’ ‘ouch, ouch, ouch!’ and then grabbed my foot, expecting to see blood, swelling and possibly a bone sticking out of the skin. The pain was excruciating and clearly, I was about to die. Nope. Nothing. Now, four hours later, there is no sign of this injury that caused tears and swear words that made my daughter give me a warning about using the ‘S-H word, mum’!
I don’t ever recall having been scared of needles, so I don’t think that it’s diabetes that has desensitised me to the ‘pain of the prick’ (not a euphemism). But other pain is another thing altogether. Mouth ulcers reduce me to tears; a sore throat can have me whimpering in pain and headaches make me cover my eyes and swear that I have a tumour because of the agony I’m experiencing. I jammed my finger in the car door not long ago and was convinced that I was going to need reconstructive surgery. (Didn’t even bruise.) Whenever I’m asked what I’d rate the pain from something I always say ‘Ten. At LEAST ten. Does the scale go to eleven? ‘Cause then I’m at eleven’.
So with this in mind, you would think that I demonstrate great sympathy for others when hurt or in pain. But I don’t. I have no compassion for people who complain about discomfort, unless I can see a lot of blood, a cast, crutches, or my mum just after she’d had a double knee replacement (although the feelings of sympathy only lasted a couple of days.) Anyone else; no sympathy whatsoever. Once, after tripping and scraping her knee, my daughter looked at me through her tears and said ‘Just once I’d like you to be sympathetic when I fall over, mum’ in response to my ‘Oops; you’re okay. Up you get!’ (Mother of the year award in the post.)
I wonder if living daily with things that cause pain – even if I don’t flinch – has rendered me completely unsympathetic without an ounce of compassion when others complain. And do I feel that I can overreact when something hurts because I don’t complain about the diabetes stuff?
Whatever it is, I don’t know. But I can’t see myself becoming more tolerant of pain and I certainly don’t think I will ever be caring and kind to others in pain. Instead, I’ll keep moaning and complaining about how much a paper cut hurts me all the while telling others to take a spoonful of cement and toughen the f#@k up. I never promised to be consistent.
A montage by photographer and Marios waiter Massimo di Sora.
Today, my all-time favourite café turns 28 years old. Marios café (named for its two owners, Mario Maccarone and Mario De Pasquale, hence no apostrophe) is celebrating its birthday and remains the ultimate in Melbourne café culture. It’s unapologetic (still doesn’t serve skim milk, although did succumb a couple of years ago and started to offer soy) and reliable (never had a bad coffee!).
I’ve been going to Marios for pretty much all of its 28 years – first with my parents and then with friends. Once I left school, meeting up with people at Marios was the epitome of cool! Great jazz on the stereo, a gorgeous changing art display showcasing local talent, and the best coffee in Melbourne. Plus tablecloths on the tables, smartly dressed waiters and breakfast served all day. There have been many times that I’ve ordered scrambled eggs or a blueberry bagel at 10pm!
Back in my uni days, it was the location for many first dates and I could always tell if there would be a second date by whether or not the guy knew of Marios when I suggested we meet there. In any relationship break up in the division of cafes and pubs and places we’d hung out, I always got Marios!
Marios is where I take overseas friends when I want them to have a truly Melbourne café experience. DOC friends from home and abroad have been taken there and just a couple months ago, a group of us got together to catch up. It’s where I meet up with friends who have moved overseas when they come home for a visit. My beautiful friend Shannon who moved from Melbourne to Hong Kong and then the UK over 15 years ago and I have a standing date any time she’s in town so she can get a fix of Marios lasagne! Recently, I caught up with a long-lost friend and there was no doubt about where we would meet.
There have been many memorable visits to Marios including the night before my daughter was born, where I checked my watch every ten minutes, counting down until the time I would meet her, and the day she came home from hospital, where a pit stop was made to show her off to the waiters.
I’ve laughed, cried, and had some of the most serious conversations of my life in Marios. I’ve said goodbye to friends and welcomed them back into my life. I’ve met up with people for difficult, heartbreaking chats because it’s always felt safe.
I can still remember my first trip to Marios after I was diagnosed with diabetes. It was only a week or two later and it was the first time I was eating out. It was where I did my first ‘public injection’ and I can remember my heart racing as I pulled my insulin pen out of my bag and tried to jab my stomach secretly. I was sure everyone was watching me, judging me, waiting to jump on me and tell me to put it away. No one noticed and if they did, said nothing. I searched the menu for food that the ridiculously old-school dietitian I had seen would approve of and I wondered if it would be okay for me have chocolate sprinkled on top of my cappuccino. I fought back tears as I asked the waiter for sugar substitute and then explained why I was asking. My coffee was on the house that day.
Now, I don’t hide away my BGL checks or pulling my pump out from under my clothes when I am out, and it was at Marios that I realised that I had nothing to be ashamed about when it came to ‘public displays of diabetes’. Marios normalised eating out with diabetes – the new reality of my life.
I felt safe there. I knew I would not be questioned. I knew that I would still be the old me there and Marios would never change. It felt like it always did. It felt like home.
Marios Cafe
303 Brunswick Street Fitzroy VIC
(03) 9417 3343
http://www.marioscafe.com.au
I stood in the bathroom this morning as I got out of the shower and stared at myself in the mirror. I don’t like what I see. There is a pump infusion set, probably almost ready for a change due to the slightly turned up edge of the tape holding it in place; a new-ish sensor makes me feel like a cyborg and tiny red and black dots covering my middle.
There are so few days when I get to step in and out of the shower truly unencumbered by some sort of diabetes device being stuck to me. All my planets have to be aligned for a day where I am changing my CGM sensor and pump line at the same time and I get to rip them out before stepping into the shower, spending the time actually aware that there is nothing attached to me. Truly nothing. Ridiculously, it’s the only time I feel truly naked.
Diabetes has left its mark all over me. Fully clothed, I can hide it, but undressed, there is no getting away from what it has done. There are scars all over my abdomen and hips from old infusion sets and Dexcom sensors. There’s a nasty red and black bruise from a failed infusion set change three days ago which resulted in blood spurting everywhere. No matter how much I scrub away the residue from tape, there is usually still some clinging desperately to my skin. My fingers have tiny marks all over them from where I jab in a lancet several times a day.
On days where my BGLs have been higher than I’d like, my skin looks slightly dehydrated. On nights where I have been awakened by hypos there are dark circles under my eyes.
There are scars and marks and bruises there to remind me of how invasive diabetes is in a literal as well as figurative sense.
The only scar I look at with any fondness is the caesarean scar across my lower belly. I trace the line and am taken back to the operating theatre the day my baby was delivered from me. Some scars form the basis of beautiful memories.
While the diabetes scars are many they do disappear. They heal. They vanish. Only to be replaced by more. Many more.
At this time of year, lots of chocolate may come into your life. This is to be celebrated – diabetes or no diabetes.
I don’t hand out advice, but I do share things I’ve learnt. And I’d like to share this: sugarfree chocolate is the work of the devil. It does weird things to your insides, leaves an odd metallic coating in your mouth, will make you spend a lot of time in the loo and basically tastes like crap a little unsavoury.
Eating the real thing is far better and definitely bolus-worthy. My favourite chocolate to eat at Easter is in the form of a dark chocolate Lindt Gold Bunny. I’m also partial to anything from Haigh’s chocolate.
I read the other day that if you crack open your eggs (Bunny) before eating, all the calories fall out.* So smash the bejeezus out of your chocolate before eating it, make it dark chocolate and I think that you’ve pretty much got a health food in front of you.**
Also, there is to be no guilt associated with eating any said chocolate.
Enjoy the next couple of days and I’ll see you next week with a belly full of real chocolate!
*Not proven by science.
**I’m not a dietitian and this bit could be made up.
REBECCA
Being a single mum is a lot like living with Diabetes – yes it can be tough, but also very rewarding – especially when you are in control!
Being both has certainly proven to be challenging – but if anything – 28 years of T1D has been a great training ground in showing me what I am capable of, and giving me the resilience I have needed lately. I know what I am capable of – and I know I can conquer this too.
You can follow Rebecca on Twitter here.
Diabetes Tales is a new thing I’m trying out at Diabetogenic. If you’re interested in taking part, let me know!
On my bedside table
A favourite book of mine is An Equal Music by Vikram Seth. I first read this book back in 2000 when I had not long stopped playing music. The book spoke to me for a number of reasons, but mostly because Seth completely nailed the way that he wrote about musicians. Having been one for a long time, married to one and surrounded by friends who are musicians, I found myself smiling at how right he got some of the nuances. I’ve lived through and participated in detailed discussions about composers – deriding those not as beloved as others, hours upon hours of intricate dissections of performances, passionate debates about the quality of one Shostakovich string quartet over another. And Seth’s version of this was so spot on!
We develop a language when we are part of a community. The music world certainly has one and I consider myself still quite fluent due to the people I am around a lot.
And the diabetes community has one too. The language itself is full of words and abbreviations that only make sense to those who use them on a daily basis. And there are distinctions we insist upon that make others consider us pedants. There are in-jokes that make sense only to those who ‘get it’.
But it is about far more than just the words or the descriptions. It is about the way we talk and the meanings behind the words – often resulting in confusion from those not part of the group. It can be exclusive for this reason, which whilst usually not great, does make us feel that we are part of something distinctive. I’m not necessarily sure that is a good thing when we haven’t actually chosen to join this club, but regardless, I know the way I relate to others with diabetes often employs shorthand to get straight to the point and avoid detailed descriptions and explanations.
Think about it. When you say to someone with diabetes that your BGL is 2.1 (or 21) mmol/l, they will immediately know what that means. Say it to someone who has no connection to diabetes and the will not understand that it means you need to do something. Immediately.
I come back to An Equal Music every year. Sometimes I read it all, other times I skim through, finding passages that are particularly significant to me. I get swept back into the world of chamber music and Beethoven. It was a different time in my life. I feel lucky that I can recapture it – even in just a tiny little way – in the pages of this beautiful book.
Diabetogenic 