With soooo many people having more time on our hands these days, I put a call out to the Irish Diabetes Community to submit some guest blog posts for Thriveabetes. We have shared lots of stories from our community since we began our blog (please have a scroll though all our old blog posts here to find them) .
It’s also a good distraction from the endless days of Coronavirus isolation.
Our first guest post comes from Aileen O’Reilly, a journalist from Dublin, who has lived with type 1 diabetes for 38 years, who shares a really important #LanguageMatters lesson and why fear tactics in diabetes do not work. Thank you so much Aileen for sharing.
** This post originally appeared in the Irish Times Health Supplement on 12th March 2020 and is republished with permission from the author.
DIABETES EDUCATION REQUIRES MORE CARROT AND FAR LESS HORROR SCHTICK
By Aileen C. O'Reilly
Imagine a scenario where humans didn't need toilets - we'd eat and drink as usual but just magically evaporate our body waste. Think of the hours we'd save over a year on toilet breaks and queuing cross-legged at festivals for the dreaded Port-A-Loos.
Now imagine the nightmarish incapacitation for those among us who had a condition whereby they had to manually expel their own waste…no magical evaporation to take for granted and no toilet facilities. Totally debilitating.
Knowing what our bodies can and cannot do is, I believe, the key to sustained good health. My body doesn't produce insulin to regulate my blood sugar levels so I have to monitor them and manually inject insulin accordingly.
Luckily though I still don't need a toilet break for either of these things - I check my blood sugars and shoot up (with the same carelessness with which I check my phone) wherever I am - mid-meeting, mid-date, mid-screaming row on several occasions and just get on with my day.
Yes I'm a type I diabetic.
Speaking as a very healthy one who regularly elicits the shocked exclamation of "you can't be - look at you! You look so well!?" I would say be very wary about getting into conversations with random strangers about having the condition - inevitably they're going to tactlessly try shocking you with stories of someone they know or are related to who has lost toes or limbs or is now blind, on dialysis and in a wheelchair "due to that bloody awful condition"...
I know this - I've had 4 toes amputated and am more or less blind in my left eye thank you.
Tales of diabetes and its complications are told with the same sense of salacious gibbering reserved for horror movies - a swift fall from normality to that of a sad, blind recluse missing limbs and any sense of purpose in life.
I have had diabetes for 38 years. From the get go both I and my bewildered parents were bombarded with warnings from the medical profession of what would go wrong if I didn't mind my blood sugar levels. I can still close my eyes and see those posters of ulcerated feet…
Aileen O’Reilly
In fairness to my parents (who only years later admitted to me they felt like they were bringing me home as a new born baby again after I was diagnosed) they never made me feel like the diabetes was going to be a challenge or that it would hamper my chosen career. They looked on in wonder (and relief no doubt) as I gave myself my own injections and carried out my urine tests with varying degrees of success.
The odd thing is, apart from my parents, nobody else tried the opposite tack of telling me what could and would go right should I just accept that my pancreas wasn't doing its assigned job anymore and if I took over I would feel totally normal.
The energy I have when I keep my blood sugars between 5 - 8 is boundless. I jump out of bed and grab the day by the scruff of the neck and have the mental focus of a laser beam. That's the bizarre fact - when you face this condition head on and mind your sugars you ARE the same as somebody without it but your body's in better nick simply because you're avoiding all the unnecessary rubbish most of us ingest on a daily basis without even thinking about it.
But nobody appraised me of this fact. I had to discover it for myself after I finally stood still long enough to turn and face the huge pall cast over me by the condition and its cataclysmic affects on my life after decades of neglect.
Warnings that high blood sugars would inevitably lead to blindness, kidney failure and creeping amputations compelled me, at aged 10, to turn my back on it and RUN!!
Not surprisingly, the oft reiterated warnings that high blood sugars would inevitably lead to blindness, kidney failure and creeping amputations compelled me, at aged 10, to turn my back on it and RUN!!
… and run I did - faster each year as the thoughts of the damage I was incurring, and felt helpless to reverse, got worse and worse. From the age of 20 when I eschewed parental omnipresence for my own place in town I ran with the kind of panic and sense of nameless dread that pervades every nightmare where one is, of course, utterly powerless.
Along with all my friends I drank and smoked and partied my way up the career ladder. Unlike all my friends I increasingly ended up 'in the cooler' (hospital) for weeks on end as uncorrected blood sugar readings of 12 - 20-something, slowly blinded me, turned my blood to viscous syrup and impeded my circulation to an increasing degree.
I treated my diabetes very much as I had treated my first encounter with the cursed Rubic's cube - a short spell of intense concentration trying to solve the puzzle before it was hurled at the wall with a howl of frustration.
Instilling fear in a newly diagnosed person with diabetes will not inspire any sense of responsibility. You're used to eating what you want and forgetting about it - learning that you now have to check your blood sugar levels and calculate carbohydrate intake AND shoot up in advance of launching into the burgers and fries your mates are wolfing down like starved hyaenas isn't something that you're going to easily accept.
Being diagnosed with type 1 diabetes IS NOT in or of itself a life sentence - how you choose to manage it dictates whether it becomes one.
As it was with me the re-educating of a new diabetic is totally overwhelming (Mary Tyler Moore very aptly titled her book Growing Up Again - Life, Love and, Oh Yeah, Diabetes) and will only inspire anger and a sense of powerlessness over a future perceived to be bleak and marred by future crippling health complications.
Education of those people diagnosed with the condition as well as the public at large needs to change drastically.
Being diagnosed with type 1 diabetes IS NOT in or of itself a life sentence - how you choose to manage it dictates whether it becomes one.
If you are a new diabetic reading this or the frazzled parent of a newly diagnosed diabetic child let me be the one to tell you that which I was not told.
Mind your blood sugar levels and you'll feel great. Actually you'll feel better than the majority of your non-diabetic friends. You'll have buckets of energy, strong teeth, great skin and, as I've noticed with a lot of type 1 diabetics, you'll look younger than your years. Neither will you rage like a demon (from fluctuating blood sugars).
Think logically - if you don't eat you starve to death. If you don't get enough fluids you become dehydrated and very quickly die - the body makes it very clear what it needs to survive. Comply with that and you can just get on with the far more important business of living.
I remember having a Eureka moment one evening as I flicked through the TV channels and found myself mesmerised by the Monaco Grand Prix - it was then that the stubborn penny finally dropped…
Even the fastest formula1 racing cars need pit stops to refuel and be recalibrated - I just have to monitor my sugars and take my insulin (all done in 30 seconds) and I'm back on the track. No need for drama or horror stories or the sense of a doom-laden existence full of broken dreams and zero achievements.
You can live a totally normal life with diabetes, or a really exceptional one if you so choose. Swimmers, footballers, athletes and world famous actors and musicians have it - in the challenging sport of rowing which demands peak fitness Poland's Michal Jelinski, a type 1 diabetic, excels - Olympic gold medal winner 2008 and four-time World Champion (2005–2009) in quadruple sculls. Somehow I can't imagine anyone looking at him pityingly and talking about their wheelchair-bound uncle Albert…
Real Madrid striker Borja Mayoral is also type 1 as is midfielder, Antonia Goransson, of Sweden's national women's football team.
Team Novo Nordisk is the first global all-diabetes sports team of cyclists, triathletes and runners, spearheaded by the world’s first all-duabetic professional cycling team - their mission is to inspire, educate and empower people affected by diabetes. Including our very own Limerick born, Team Novo Nordisk member, Stephen Clancy. Ed: Find more Irish Diabetes Role Models here.
Limerick’s Stephen Clancy, Professional Cyclist Team Novo Nordisk
These are the images we should be seeing in our hospital waiting rooms and diabetes daycare centres along with the message that having diabetes, type 1 or 2, is by no means an excuse to give up on life nor should it be used or seen as one.
Bret Michaels (56), lead singer of rock band Poison, was diagnosed with type 1 diabetes at age 6, but didn't go public about his condition until shortly after the release of the band's first album.
His advice, probably far more likely to be listened to than mine, is simple: "Accept that you have the disease. Keep taking your insulin. Keep it under control. Also, enjoy your life. I have stayed in good physical shape by having mind, matter, and music over the disease."
There are far worse fates that can befall you than being diagnosed with type 1 diabetes. I know for a fact that if I didn't get it I would now be a very unhealthy, fat, unfit 48 year old and more than likely a heavy smoker with a drink and drug problem.
So, truth be told, I'm more than thankful I got it.
About the Author
Aileen O’Reilly, Travel journalist often found in the pages of the Irish Examiner. Aileen was diagnosed with diabetes over 37 years ago at age 10 years. In June, Aileen wrote a piece on how had to cancel a holiday to take care of some diabetes “crap” and her positive attitude in spite of it causes me to have huge admiration for her. You can read that post here. However, she’s had another set back and here’s an update on how she’s doing.
You can find more of Aileen here:
Diabetes Can, Sometimes, Get in the Way but It Doesn’t have to Stop You (part 1 of Toe-ing the Line)
Putting it all on the table - Diabetes, eating disorder, depression, cancer
Interview with Stephen Naughton’s “Good Boss, Bad Boss” Podcast series.