Aisling’s Journey With Type 1 Diabetes: The Chronic Diaries

Where are you based?

I live just outside of Enniscorthy town in County Wexford.

What chronic condition(s) do you have? Please briefly describe what they are?

I have Type 1 diabetes. Type 1 diabetes is an autoimmune condition where the pancreas cannot produce any insulin to regulate the sugar that is in the blood stream. An autoimmune disease is a condition in which your immune system mistakenly attacks your body. Type 1 diabetes usually appears during childhood or adolescence, but it can develop in adults, it is not preventable, and there is no cure for it.

What symptoms did you deal with before you were diagnosed?

I honestly didn’t feel the full extent of the symptoms like most people do when diagnosed with Type 1. The main symptoms are:

• Extreme thirst
• Rapid weight loss
• Frequent urination
• Extreme tiredness/fatigue

How were you diagnosed? What was your journey to diagnosis? (include dates/years if you so wish-it helps give people an idea of the long journey people go through)

Everyone’s diagnosis with Type 1 diabetes is completely different. My diagnosis came as a huge surprise to me and my family. I was about to turn 23 and working in local hotel at the time, and while on a few days off, I got quite sick with what I thought was the mumps. I went to see my doctor and she wanted me to have a blood test done just to confirm that it was the mumps that I had (at the time there was an increase in cases of the mumps being recorded in young adults here in Ireland so she wanted to see if that was the case here with me). This was a Friday and the nurse taking my bloods had told me that it would be the following Friday or if not the week after by the time I get the results.

The following Tuesday, the receptionist from the doctor’s surgery rang me and said that my blood test results were back, she said that she needed me to come in as soon as possible as the doctor wanted to speak to me about my results, she also told me to bring someone with me. I thought this was a bit strange but I really didn’t think much of it, so I went in within the hour and brought my mam with me.

My doctor had the results of my blood test printed out and she briefly went through them with me. She said that I did have the mumps but went on to explain that there was some information that had shown up on it that had caused alarm. She explained how my HbA1c was too high, and that my blood glucose levels were also too high, especially given the fact that I had eaten very little the few days before having the blood test. The HbA1c is your average blood glucose (sugar) levels for the last two to three months. My HbA1c was at 98 which was more than double what it should have been.

This all made no sense to me whatsoever; she went on to say how I was actually quite sick. She did a finger prick test to check my ketones there and then and also to check what my blood sugar level was, it was as she had expected, I can’t remember the numbers but they were too high.

She explained how she suspected I had diabetes, she asked me questions to try find out if I had any of the usual symptoms associated with the onset of diabetes. I hadn’t lost an awful lot of weight rapidly, but I had lost around 10 pounds over the last few months, she asked if I had felt tired a lot recently or if I would be going to the bathroom a lot more than usual, to both of these I said no. Being very thirsty is another key symptom, she asked had I noticed feeling thirsty often, again I hadn’t really, I would drink around 2 litres of water each day so that wasn’t anything out of the ordinary for me. The symptoms of Type 1 diabetes include; fatigue, frequent urination, unexplained weight loss and extreme thirst. I hadn’t really felt the full extent of these symptoms, without having that blood test, this diagnosis could have easily gone under the radar for another few weeks and could have resulted in me being extremely sick.

My doctor explained that I needed to go to A&E straight away to be put on a drip. The doctor explained that it wasn’t something that could wait as my Ketones were extremely high, this was what she was most worried about. Ketones are chemicals made in the liver. You produce them when you don’t have enough insulin in your body to turn glucose (sugar) into energy. You need another source, so your body uses fat instead. The liver turns this fat into ketones, a type of acid, and sends them into your bloodstream. This was what was happening to me, my pancreas wasn’t producing enough insulin so my blood glucose level was high the majority of the time. Having a high level of ketones in your body can be quite dangerous and can result in DKA. Diabetic ketoacidosis (DKA) is a serious problem that can happen in people with diabetes if their body starts to run out of insulin. When this happens, ketones build up in the body, which can be life-threatening if it’s not found and treated quickly.

I was sitting in the waiting room for about 8 hours before I was actually admitted into A&E, I was put into a small room with a trolley. It was midnight by the time a doctor saw me and asked me questions, most of these questions were based around the mumps and also with the symptoms (or lack of in my case) of diabetes I was experiencing. I was put onto a drip and throughout the night I had numerous blood tests done, finger prick tests done every hour by nurses to track my blood sugar level, heart traces, blood pressure monitoring, and more that I can hardly remember. I managed to get 15 minutes of sleep throughout the whole night. At around 3am a nurse came in and she administered my first dose of insulin. The nurse explained why I needed the insulin; my sugar levels weren’t coming down at all and it was necessary, the needle wasn’t exactly tiny either and she had to inject the insulin into my stomach.

The following morning a nurse came in to see me, she was a diabetes nurse from the diabetes unit in the hospital. She came and sat down to talk to me about my diagnosis and that they did think that I had Type 1 diabetes. She explained that there was no cure but it was a manageable condition that would require daily monitoring and treatment. She gave me information leaflets, a blood sugar monitoring kit and an insulin pen with some needles. This was when my diabetes education began, I learned how to prick my fingers and to inject insulin myself. What I learned was basic but it was enough to keep me going for a little while until I needed to know more. The diabetic dietician also came in later in the day and she also explained more about the condition.

When people are newly diagnosed with type 1, they are slowly given the information that they need, it is an extremely complex condition. I had a number of meetings with the diabetes nurse and dietician over those two days in A&E just to make sure that I knew what to do for a little while. One of the nurses from the unit rang me a few days after I got back home to see how it was all going, and the following week I was brought back down to the hospital for another meeting with the nurse and dietician in the diabetes unit. This was just to further explain management of the condition and more information on it. Overall, the diagnosis was very quick, for me anyway, the doctors were able to tell fairly quick that I had type 1, even learning about how to inject insulin and do a blood sugar test was quick enough to learn. It was the education of the science behind it that takes time. No one can learn everything about such a complicated condition in just a day or two, especially at diagnosis. It just takes time to get used to it.

Did this journey have an impact on your daily life? Eg, dropping out of college, quitting your job/getting fired? Etc

It definitely had an impact for the first while anyway, I genuinely thought I would be back at work that weekend, but the nurse said not a chance, I was advised to take four weeks off and gave me a medical cert for it. I thought it was a bit extreme but I soon realised I needed that time; my energy levels were on the floor and I needed to get used to being on insulin and monitoring my sugar levels. I went back to work after those four weeks and it was so nice to be back, I found it ok and I just had to monitor my levels, I was so lucky to have a really understanding boss who also knew a lot about the condition and what it entailed. I went back to work the weekend before I started my new college course. I was accepted into a PME (Professional masters of education) in Primary teaching with Hibernia College, and being honest starting the course then was a nice distraction as it was something else to focus on.

Are you on any medications?

I am insulin dependent and so that means I will be on insulin for the rest of my life. I take two types of insulin daily. Tresiba is a long acting insulin that is taken every day, I take about 14 units of this once a day around the same time each morning. Long acting insulin can help control blood sugar for an entire day. This is similar to the action of insulin normally produced by your pancreas to help control blood sugar levels between meals. I also take a fast-acting insulin called Nova rapid. Fast-acting insulin is absorbed quickly and starts working in about 15 minutes to lower blood sugar after meals. I have to calculate how much of this insulin I need at each meal time, and I do this by carbohydrate counting. For me, I take 1 unit of insulin for every 10g of carbs, not all diabetics go by this ratio and it takes time to work out which insulin:carb ratio works best for them. I have to be really careful to inject the right amount of insulin ar the right time, if I happen to inject too much fast-acting insulin especially, it could result in hypoglycaemia (low blood sugar).

What symptoms of your illness do you deal with on a daily basis (even when on medications)? How do you deal with these?

There are two main issues we deal with on a daily basis, hypos and hypers. Hypoglycaemia (a hypo) happens when your blood glucose level is too low, usually below 4mmol/L.

This can happen when you:

• delay meals
• have not had enough carbohydrate in your last meal
• do lots of exercise without having the right amount of carbohydrate or reducing your insulin dose
• take too much insulin
• drink alcohol on an empty stomach

Hypos come on pretty fast so it’s important we recognise the signs of a hypo so we can treat it quickly. These signs can be slightly different, for me personally when I have hypos, I start to feel very weak really quickly and I can get quite shaky. It’s the weirdest feeling but even my legs start to feel like jelly, they’re my warning signs and at this point I would need to get some fast-acting sugar as quickly as possible. I usually keep something close by, I have glucose shots that I get on my prescription in my bag and in the car as I find these work the quickest. It could then take about 15 minutes for my levels to rise back up to a steady level again.

These are some of the other most common signs:

• sweating
• being anxious or irritable
• feeling hungry
• difficulty concentrating
• blurred sight
• trembling and feeling shaky

Type 1 diabetics can also have episodes of hyperglycemia (hypers) every day. Not taking enough insulin can lead to hyperglycemia (like missing a dose or not taking enough insulin for the carbs you ate).

Other things that can cause hyperglycaemia include:

• Caffeine
• Stress
• Illness
• Medications
• Hormone changes
• Intensive exercise

Signs of hyperglycemia (high blood sugar) include:

• Being extremely thirsty
• Feeling very tired
• Having trouble seeing or concentrating
• Experiencing stomach pain, nausea, or vomiting

If our sugar levels are very high, we can try combat this by injecting a small dose of insulin to try bring the levels down a bit.

What occupation do you have? How does your illness effect your job/employment?

At the moment I am training to be a primary teacher, and I have definitely seen how the job can affect my sugar levels. Any time I’m in school on placement or subbing, I have found that I need to keep an even closer eye on my sugar levels. Teaching is a job that can require a lot of energy so it can in turn have an affect on me and bring my levels down throughout the day. It’s really important that I keep fast-acting glucose close by just in case I have a hypo (low blood sugar). Stress is also something that has an effect, if I’m stressed about college or anything really, I tend to find my sugar levels would be quite high.

How does your illness impact you mentally?

I’d be lying if I said there hasn’t been ups and downs, it’s totally normal. Obviously, it was a huge shock to be diagnosed with this illness. It took a little bit of time to accept the fact that this was a life long condition and it was going to have an impact on life every single day. It did take some getting used to but you can live a full life with it and do anything you want to.

How do you keep motivated dealing with your chronic condition in your daily life?

I will admit that there are days when you don’t want to be poking yourself with needles or pricking and squeezing blood out of the tips of your fingers for testing, but it has to be done. For me personally I hate the feeling of having really high blood sugar levels (15 or over is really high for me), it makes me feel really irritable and tired at times, and I can really feel when I have these levels. When my levels are in range (between 5-8 for me and most other Type 1’s) it allows me to get on with my day at my best. There is also the important fact that we need to look after ourselves so we don’t experience complications in the long run. Long term exposure to high sugar levels can cause blood vessel damage, which can then cause blindness, retinopathy, heart disease and foot problems including amputation and earlier mortality.

Is there any advice you would like to give to people who are on their chronic illness journey?

Definitely educate yourself on what it is you have. Read up on books or reputable websites or even contact charities to find out more and learn about the condition you have, it’s so important to know what’s going on. Chronic illnesses are extremely complex so the more you understand about your condition the better.

How do you encounter people having your illness? Do people understand? Are they ignorant? What level of difficulty do you have with this, if at all?

I was so lucky that all my family and friends were so supportive at the time of my diagnosis and after, and most of them are so conscious of it now especially with Covid-19 around as diabetics are in the high-risk group. When out in public, at cafes or restaurants etc, I would have to prick my fingers to test my sugar levels or even inject insulin, and I have definitely had people stare at me, and they wouldn’t even try hide the fact that they’re staring at what I’m doing. I just try get on with it as it’s something I need to do, but for the most part I do tend to try and inject in a quiet place or I’ll just go to the bathroom to administer insulin, it depends who I’m with or where I am.

The majority of people have been really understanding about it all, there have been one or two incidents where people have been rude or ignorant about it but that’s just what you’re going to get at times, they simply just don’t know much about the condition. There is a stereotype out there that the condition is brought on by eating too much sugar as a child. This has been said to me quite a few times, and it’s definitely not the case. Anyone can be diagnosed with it.

Is there anything you want to say to these people? Or the general public who do not have a chronic illness?

So many chronic illnesses are invisible, somebody may look perfectly healthy but in reality, could be in constant pain or trying to control or manage their chronic illness. People need to be mindful that there are so many people out there with conditions that aren’t ‘visible.’

Chronic Exposure Network