November is Type 1 Diabetes awareness month. Diagnosed as a child, Aileen C O’Reilly is ready to bust some myths about the illness she now manages with panache.
Say the word “diabetes” to most people and their reaction is either “Oh yeah that’s that sugar thing where you have to take shots isn’t it? Bummer.” Or “Does that mean you need sugar or you don’t?”Or my absolute favourite: “Yeah I knew a guy who had that and he went blind and lost his leg.”
This month is Type 1 Diabetes Awareness Month and with the most recent available figures saying there are between 14,000 and 16,000 type 1 diabetics here in Ireland, chances are you probably know someone with it.
If you’re reading this and now starting to panic because your child or partner or someone close to you has been diagnosed — take it from someone who has had it for 36 years — just calm down.
It’s time to bust a few myths: Type 1 diabetes is not a life sentence. You can live a totally normal life, or an exceptional one if you prefer, with the condition. Swimmers, footballers, athletes, and world famous actors have it — does Halle Berry look sick or impeded in any way to you?
Unlike the more prevalent type 2 version, which can develop in middle to old age as a result of a combination of an inactive lifestyle and overly calorific food choices, type 1 is inherited and irreversible. With this form of the condition, which often sets in around puberty, the pancreas ceases to produce insulin and blood sugar levels spiral out of control.
Normal blood sugar levels are 4-7. In an undiagnosed type 1 diabetic they can shoot to over 30.
Christmas 1982 wasn’t a brilliant time for me. I remember getting up early with my brother and sister to rush and see if Santy had brought my desperately longed for Magna-Doodle and I quickly realised I had wet the bed again… In the course of a few weeks I had become lethargic, the stairs which I normally ran up had become about as accessible as Mount Everest and I was permanently thirsty (even after secretly consuming a two-litre bottle of Coke which was quite possibly the most dangerous thing I could have done).
My shame at wetting my bed was toe curling. To this day I remember looking at my legs and arms in the shower at 3am after waking up in the middle of the night drenched in urine and panicking that I was disappearing before my own eyes as the weight fell off me.
I had been unwell with a viral infection for a few months but never really bounced back. When my increasingly concerned parents kept asking me how I felt, I remember replying in a bewildered tone, “I just feel floppy.”
Needless to say once the bedwetting started, a visit to the GP quickly followed. I didn’t see the finger-prick test coming but even aged 10 I recognised the look of shock on my doctor’s face as he said, “You, young lady, have won an exciting trip in an ambulance...”
After three weeks in Blanchardstown hospital, I emerged full of energy, armed with urine-testing kits (like an ancient chemical experiment with glass tubes and fizzing tablets) vials of insulin, bags of disposable syringes, and boxes upon boxes of swabs. My folks also got me a titanium ID bracelet with all my information filed inside and this, to my mind, made me feel like Wonder Woman and all the needles worthwhile.
In fairness to my parents (who only years later admitted to me they felt like they were bringing me home as a newborn baby again), they never made me feel like the diabetes was going to be a challenge. They looked on in wonder (and relief no doubt) as I gave myself my own injections and carried out my urine and blood tests with varying degrees of success.
My wonderful teacher, Ms Hyland, let me do a “show and tell” when I returned to school where most of my friends just wanted syringes to play doctors and nurses with — but especially the urine kits to see the weird colours the dissolving tablets would turn their pee.
These days children as young as three are fitted with pumps; the technology has come a long way but then again so have the number of diabetics worldwide — of both types.
Mercifully gone are the days when I used to scuttle off to the toilet to do my blood tests or take my insulin — I now unselfconsciously take my kit out and check my sugars and “shoot up” while carrying on conversations without batting an eyelid.
It’s amazing that when you stop stressing yourself that other people are looking at you wondering what you’re up to (“what on earth is she doing….. my God is she taking drugs!!??”) you can just get on with it as basically nobody else is really bothered whether you’re doing a finger prick test or preparing to take a really weird selfie.
Anyway, insulin shots are not only preloaded (no need to draw the insulin from a bottle), but also subcutaneous which means a needle half the width of a pore and half the length of your fingernail that goes in just under the skin of your stomach, upper arm or thigh.
Sneezing is more uncomfortable.
I take six insulin shots a day — three in the morning before breakfast then one before lunch, one before dinner, and a final one before bed. I check my sugars four to eight times a day.
I carry Lucozade in my bag in case my sugar levels drop and if they rise unexpectedly then I take some fast acting insulin to fix them.
I eat a very healthy diet but if I want something sweet or calorific then I just take a few extra units of insulin to counteract the extra sugar.
The energy I have when I mind myself is boundless. I jump out of bed and grab the day by the scruff of the neck and have the focus of a laser beam.
The bizarre fact is when you face up to having this condition 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 put into our bodies on a daily basis without even thinking about it.
I spent years not minding myself and incurring a lot of complications with which my unbelievably understanding team at Tallaght hospital helped me handle.
I have lost 90% of the vision in my left eye and two toes on my right foot but this was because I went around with unmanaged blood sugar levels for the best part of three decades — a good friend of mine who is also a type 1 diabetic in his 50s is an ironman and has zero complications — “shoot up, eat, do your blood tests and stop making excuses” is his motto.
You can’t argue with that.