My Health Experience: ‘I like to focus on the positive things having diabetes has given me’

On March 19th, 2013, I celebrated my 20-year “Diaversary”. I decided to have a party to celebrate this monumental occasion, and 20 years of good health with no complications. Lots of friends came over, and we had a big chocolate biscuit cake to mark the occasion. I have always been a positive person and this party was something I felt fitting to my personality and my approach to my diabetes.

I was diagnosed with type 1 diabetes on March 19th, 1993, when I was four years old. We were on a family holiday in Lanzarote with family friends. I don’t remember much about the holiday, but my parents say they noticed I was constantly thirsty and constantly going to the bathroom.

At first they attributed this to the change in temperature in Lanzarote but when we got home they knew something wasn’t right. At home, the only bathroom was upstairs and for a few days after the holiday I lay on the downstairs couch with no energy and continuing to drink water. My parents often refer to times when I was so sick they had to carry me up and down the stairs to use the bathroom as I didn’t have the energy to go upstairs myself.

I do recall going to the GP and being told I would have to go and visit the hospital. I don’t remember being scared or worried, the thing that scared me the most was getting blood drawn, I can still picture the nurse with her “toolbox”. I actually still have a phobia of getting my yearly bloods taken. People often find this surprising seeing as I give myself between four and six injections a day.

The thing about having diabetes is you never get to take a holiday from it. To be honest, it consumes nearly every part of your life, but I think how you let it affect you is what really matters.

As with many other illnesses, no two people are affected in the same way. Something that works for me may not work for others and vice versa.

I am currently using the insulin pen. This is a reusable and disposable pen that is pre-filled with insulin; you change the needle top accordingly and take particular units depending on what you eat. I take one long-acting insulin injection at 6pm every day and this lasts 24 hours. I then take a fast-acting injection with meals or any time I eat.

Something that really frustrates me is that there is still a lot of confusion about type 1 and type 2 diabetes. I wish people would ask before they make assumptions about reasons for an illness. As with any other illness, developing diabetes is never anyone’s fault; sometimes these things just happen.

I’ve had many comments that I’m sure other people with diabetes will relate to; “Do you have the bad kind?” “Wow, I could never inject myself every day.” “Are you sure you can eat that?” “But you don’t look sick.” “Did you eat too many sweets as a child?”

Injecting myself I remember giving myself my first injection when I was six.

My parents always gave me my injection but one day the phone rang just as my mum was getting ready to give it to me. I remember my sister encouraging me to try to do it myself as a surprise, and I did. My dad gave me a medal and the hospital gave me a certificate; they are still on my bedroom wall.

One important aspect of type 1 diabetes is carb-counting, and taking the correct amount of insulin in relation to carbohydrates consumed. When I was diagnosed I had a fantastic dietitian who taught me and my family about carb-counting.

We were introduced to a new language of grams of carbohydrate and “exchanges” and “free foods”. Every 10-15g of carbohydrates was equated to one exchange, very similar to the types of points-based diets people use. The hospital services were fantastic; my family was given a crash course on how to inject insulin using oranges. So for many years we would have great fun giving “freddies” to all the oranges in our fruit bowl.

Support and management

The system has since changed and everyone is on their own type of sliding scale, usually

one unit of insulin to cover 10g of carbohydrates, and so on. However, no matter how many years I’ve had diabetes, it’s still very much trial and error.

I was never treated differently or told I couldn’t do something because of diabetes. My parents brought me to all my hospital appointments, collected my prescriptions and looked after me when I’m sick.

The people who know me best are always looking out for me and can tell when my blood sugar is going low. I’ve been told that my eyes change or I become really funny, though I’d like to think I can be funny without being low.

In terms of long-term medical conditions, it’s important to learn to incorporate them into your life rather than to let them take over. It makes me laugh to think whenever I go out for dinner with my friends I’ll be simultaneously chatting, telling a story, counting carbs and giving an injection under the table without people even noticing.

I think you have to focus on what you can achieve rather than what you can’t. I qualified as a primary-school teacher from Froebel College in 2013 and completed an international arts degree in Nua-Gaeilge and geography in UCD prior to that.

While at UCD I had the opportunity to study abroad at the University of California Santa Barbara for a year. Trying to organise a year’s supply of medication was a worry at the start, but I had absolutely no problems while I was abroad.

Trial and error

Sometimes I just can’t control when a blood sugar will be too high or too low and they will usually appear when I have something important to attend or in the middle of work.

A high blood sugar can make me feel extremely thirsty, tired and irritable. I sometimes find if my blood sugar is high, even something as simple as the noise of unpacking the dishwasher will annoy me.

Equally, with a low blood sugar, I feel shaky, begin to sweat and often start rambling without realising it. It is important to make family, friends and colleagues aware of these signs in case of emergency.

It’s very normal to get frustrated and upset, and that’s okay too.

Some days I wish I could just go and eat loads of fast food and junk food and not have to worry about taking an injection or having high blood sugar. I can try so hard, eating healthily and exercising regularly, and still have a “bad” blood sugar reading. Sometimes things are just unpredictable.

It's funny how things come full circle. When I had to transition from the children's hospital to adult services I felt I wanted to give something back as the hospital and the staff had become friends after 14 years seeing the same faces. I began volunteering in the hospital playroom with Children in Hospital Ireland in 2008.

Through that work, I learned about Barretstown Camp. I began volunteering with them in 2009 and worked at the original “Hole in the Wall Gang Camp” in Ashford, Connecticut, that Paul Newman founded for children with serious illness.

I have spent two full summers working as a cabin counsellor in Connecticut and have been back the past two summers as a volunteer. It’s the best thing I have ever been involved with and it’s such a privilege to work with such fantastic children and families.

I also really enjoy acting and singing and have taken part in college musicals and shows with my drama group. Every time I am about to perform, my blood sugar will dip just before I go on stage no matter how prepared I think I am.

I was teaching a fantastic class of junior infants last year and I found I would go low nearly everyday; this doesn’t seem to happen as much with older classes. So I always have a lunchbox on my desk with a mountain of snacks and juice cartons: you can never be too prepared.

I have seen and lived through so many positive changes in terms of diabetes care over the past 21 years. I’m very hopeful for the future of people with type 1 diabetes.

Although I am most definitely going to have it for the rest of my life, I like to focus on all the things having diabetes has given me: empathy, organisational skills, understanding, motivation, determination, healthy life choices, and opportunities to volunteer.

Over time, you learn to live with an illness – although it may sometimes be frustrating or difficult, life must go on, and, in the wise words of Kid President, “We’ve got work to do, we can cry about it, or we can dance about it.”

So, for the moment, I’m going to keep dancing.

To read more about diabetes, see irishtimes.com/thehealthcentre