I posted my diagnosis story previously; if you haven’t already read it, you can do so here. This post focuses on what happened next and adjusting to life with diabetes in those first weeks, months and years.
When I was diagnosed with diabetes in April 1993 at age 20, it shattered my confidence in my ability to take care of myself. Most of my available energy was focused on getting through each day without hypos, getting through the rest of the term, and moving home to my parents to my previous summer job, where I’d have three months to figure it out then. Adjusting to my new normal of living with diabetes began while I was still in the hospital, or did it?
Inpatient care
Once my diagnosis was confirmed, I spent another seven days in hospital. I didn’t have any training or education while I was an inpatient though. The hospital had only one diabetes nurse specialist, who, at that time, worked one day a week and was on leave. So, I had to go back to the hospital after being discharged to meet with her.
My memory of the rest of my stay in the hospital is very fuzzy, but two things stand out:
My first insulin injection; I don’t remember the exact day I did, but I feel it must have been shortly after I was told I had diabetes. The nurse had drawn up the insulin in the syringes, held it up and asked if I wanted to do it, so I did: no fanfare, no thinking, just a brief pause before I jabbed the syringe into my stomach. I figured I would have to do it myself for the rest of my life. I might as well just get on with it.
The second thing I remember was being told at diagnosis that I could not eat sugary foods. I even remember being told that if I had a sugar craving, it might help to drink some diet 7-up. This was probably the biggest lie I was told, and some people still believe this today. It resulted in me occasionally sneaking food when no one was looking. It wasn’t until I had a carb-counting education while living abroad that I realised I could eat treats, especially if I adjusted my insulin to cover them.
As I mentioned in my last post, I also remember crying myself to sleep, wondering why me. Did I do something to cause this? The only thing I knew about diabetes at diagnosis was that it had something to do with not eating sugar or sweets and insulin injections. I didn’t have any access to any information or anyone who did. Remember, this was before the internet, social media or library books written for people with diabetes were available.
Discharged
My Mam suggested we visit the only other person with type 1 diabetes we knew in the area to find out more about life with it. She’d actually arranged for us to call over on the way home from the hospital after being discharged. This girl was a year behind me in secondary school and from the nearest town. She was 14 when she was diagnosed, and so had lived with it for five years already. I remember hearing about it at the time and my biology teacher sharing some information, but of course, it didn’t stick with me.
Meeting other people with diabetes is always a good idea and is something I recommend to anyone newly diagnosed today. But sometimes, it doesn’t work out well; it can be the wrong time or the wrong person for you, and on this occasion, it wasn’t the right time for me. My Mam, bless her, is a talker, and I was a quiet and shy 20-year-old. Plus, I didn’t know what to ask. It was all too new. So, our Mams did most of the talking, which was awkward. The biggest impression that this meeting left on me was her mother's story of not being able to wake her daughter up one morning because she was in an unconscious hypo. That night, I didn’t sleep much; I was afraid I wouldn’t wake up. The same thing must have been on my mother’s mind because she checked on me several times while I pretended to be asleep. Thankfully, the meeting the next day with the diabetes nurse resolved this fear.
Diabetes Clinic
I was so lucky that the hospital had a diabetic nurse specialist on staff, and they made sure I saw her the day after I was discharged. We bought a glucose meter from her, and she explained some basic things about diabetes. However, she said the information and guidance she gave me would only “keep me safe,” and I needed a specialist diabetes clinic, so I was referred to a young adult clinic in Dublin. This happened quickly; I had an appointment later that week.
Again, I don’t remember a lot from my first appointment. I’m sure they were supportive and gave me more booklets. My new life with diabetes involved the following regimen:
Checking my blood sugars twice a day,
Fixed doses of insulin at the same time every day, twice a day, using syringes,
All my meals had to be the same amount of food at the time every day,
And a never-ending hobbit-style snacking, which drove me crazy
My diagnosis turned me from a healthy young adult who, even though I had been living away from home for three years, had only just gotten my own place and was finally doing all those grown-up things like buying groceries, cooking, paying bills, etc., into someone who now had to carry medical supplies and lunchboxes of food everywhere so I could plan for injections and eating. Living with diabetes for those first six years was so regimented and was about my life fitting into diabetes, not diabetes fitting into my life as it does now.
Moving on
I faced my first big challenge going back to college. I hadn't even thought this far ahead when my mam said she would be more comfortable if I moved back in with my Uncle and his family instead of sharing a house with an almost stranger who was hardly ever there. I took a deep breath to protest against the idea, but the only words that came out of my mouth were “OK”. I realised that I would feel better too. So, adjusting to my new life with diabetes meant a bit of regression as an independent young adult.
On the first day back at college, people made a bit of a fuss and asked me how I was and such. Teachers were concerned about what they needed to know to support me, which I made light of. I said I just needed to go easy with the physical activities until I was built up again. After all, I really didn’t have very much information myself. One teacher greeted me with a huge smile, saying, “You have cheeks again”. This took me aback! It made me realise I must have looked so gaunt for people who saw me most days to notice my weight loss. Anorexia was mentioned a couple of times once people started sharing their thoughts about what might be wrong with me before I was diagnosed. Once the first few days were over, I didn’t talk about it anymore. I didn’t know what to say and couldn’t answer anyone’s questions. If I was asked how my diabetes was, I said, “Fine”.
OK, maybe not moving on
My life was turned my life upside-down. I fell asleep on buses going home from exhaustion, but not the kind I had before. I had been working night shifts at Burger King and had to give it up as I wasn’t physically able to keep up with the hypos and the eating. With two injections daily, it was very easy not to inject in public, which I appreciated back then. If I needed to check my glucose levels, I did it in a bathroom. I didn’t go out socially as much; student parties were too difficult to think about. Where was I going? How long would I be there? Would I have to inject? Or eat? Where would I find food if I didn’t have enough with me? What 20-year-old wants to bring a backpack with lunchboxes of food to a party or a night out?
I only had six weeks left in the college term to complete my second year, but what then? I knew I wouldn’t continue my current career path and had no backup plan. I just wanted to get away from it all and move back to my parents, where I could feel safe. I had a job lined up for the summer to keep me going, and I would figure things out from there. I think subconsciously, I needed a secure and steady career now because I felt my future was so uncertain.
My summer job lasted until October, when my boss, bless him, told me he couldn’t keep me on any longer. I mean, it was nearly a Winter job at that stage. I had applied for other jobs in the area, but unemployment in rural Ireland in the early 90s was high. So, Summer had come and gone, and I still struggled to find the energy for a backup plan. My mother told me that her friend came across a computer course in Dublin, and I was happy to take it. Even though the idea of doing a secretarial course when I was 17, which my parents begged me to do before galavanting off to “acting”, was horrendous. This independent, stubborn 20-year-old was happy to take all the help she could get to sort herself out these days.
It was a six-month course, and I lived with friends of the family, which was such a blessing. The girls were close to my age, and we were good friends. It helped me adjust. I moved back home when I finished and eventually found a part-time secretarial position, which led to another and then another and finally found my feet grounded again.
It took five years before I felt confident to stand on my own two feet again and move out of my parent’s house. In 1998, I got my first full-time job, moved back to Dublin, shared a house with three other girls, and started enjoying life again. I still didn’t know very much about diabetes management, but I worked with what I had at the time and did the best I could with it. I met my now husband in 1999, the first person who asked me where they could find information about diabetes so that they could support me better. When I had no resources to direct him to, he introduced me to the world of online searching on the internet. We started this learning journey together and still continue to.
