BEING DIAGNOSED AT 25
WRITTEN BY- CAITLIN LAMONT
"In my experience being diagnosed later in life can cause a mixture of emotions on the individual, some people are quite matter of fact about the diagnosis and steps that need to be taken to manage their diabetes whilst other's can find the life change quite daunting, inconvenient and challenging. When people have families already, getting Type1 diabetes later in life can often add financial stress to the household expenditure." -Jessica O'Shannassy Diabetes Educator.
Just after turning 25, I started noticing I was feeling a bit 'off' for the last 18 months, so I decided to Dr. Google my symptoms.
Excessive thirst (6 Litres a day), constant need to urinate (one day I went 23 times), hair loss, bruising easily, lethargic (I would nap during the day which is something i've never done before) and a lack of period. (Hadn't had a period in 18 months and being 25 years old, I thought that was great!) I put all those symptoms down to finishing studying Certificate IV in Disability and working full time in the field.
Dr Google results came in, I potentially had 1 of 3 illnesses; Bowel Cancer, Leukemia or Type 1 Diabetes.
I thought I better go to the doctors, I booked an appointment to see my GP and told her how I was feeling so she sent me to get blood tests and ultra sounds. Unfortunately, I was due to go to Darwin the next day, so I put off the tests until I came back 10 days later.
When I came home from Darwin I went and got the tests done. I went to my GP and she informed me that I have Type 2 Diabetes. She told me my Blood Glucose Level was 19.8mmol/L. I had absolutely no idea what that meant. Was it good? Was it bad? No idea. My GP had booked me an appointment with a health care nurse to discuss everything in detail.
I went home to digest everything. I was emotional, I told my parents what was happening and what the Dr said. Dad said ‘It’s okay, everything will be okay’ and mum asked ‘Is it because you eat chocolate?’ I had no idea. Will everything be okay like dad said? Is it because I enjoy chocolate? As the first one in my family to be diagnosed with Diabetes, we had no idea what we were in for.
I saw the Health Care nurse, she informed me that type 2 is lifestyle choices. But how can that be? I either played or umpired netball 5 days a week and my job was pretty hands on. And it wasn’t like I was eating junk food every second of the day. She gave me a blood glucose monitor which she wanted me to record the readings and the food I ate 3x a day and a name of a diabetes educator and sent me home. I changed my diet. For the next 2-3 weeks I was eating chicken and salads, chicken, sweet potato and veges. Carbohydrates were now off the menu. I lost a couple of kilos and I thought to myself 'hell yeah, i'm kicking goals here, I can do this' but my BGL’s weren't going down.
Monday rolled around and I have my appointment with a Diabetes Educator. Mum came to the appointment to be another set of ears. She was shocked. Shocked that my GP said it was type 2 with a BGL of 19.8mmol/L. I assumed she said type 2 because I'm not a child (little did I know it can surprise anyone at any age) and that I have a few extra love handles. So the DE ordered me for some more specific blood tests.
On Wednesday I was about to eat my lunch so I tested my BGL. 28.9mmol/L was the reading. I didn’t feel any different to the previous 3 weeks. My sister rang me to check in and asked what my level was. I told her and she told me I had to go into hospital immediately. But I was at work so told her i'd go in afterwards. After arguing with her, I went and told my boss what was happening. It was like he saw a ghost. His jaw dropped. He told me to sit down and stay calm and that he would drive me into hospital as it would be quicker than an ambulance. I told him that was unnecessary and that I could drive myself in or mum can come and get me. He laughed and said that he was taking me in now. I started to cry. I was unsure why he was worrying so much. Would I go into a coma soon? Am I going to die? What’s going to happen? I was in the world of unknown.
My mum met me in at the hospital. My BGL was now 27mmol/L and ketones were 0.9. The triage nurse was going to send me home and told me to ring and book an appointment with my GP. Mum politely told the nurse that we weren’t going anywhere until I was seen by someone.
An endocrinologist came down and saw me 40 minutes later. I was laying in resus when I was asked if I wanted some lunch. I was offered a couple of rounds of sandwiches to which I declined. The nurse asked if I was coeliac. I laughed, said ‘No, I can’t eat carbs, I haven’t eaten any carbs in 4 weeks because of the Type 2’. The Endo laughed and said, 'You can eat the sandwiches Caitlin, I'm going to give you Insulin'. My heart sunk. My first insulin injection. It was this point where I knew that now we were talking Type 1. I had done lots of research the last month. I was scared. Petrified of the unknown and of giving myself needles.
Upstairs in hospital the nurses were lovely, and I had so many people visiting. Doctors, endos, nurses, D.E's, my mum and sister, it was like peak hour for the next 3 hours. The nurses were injecting me and testing my BGL’s every 4 hours around the clock. The following day the nurses told me I had to start injecting myself so I can go home.
I told them that they better get used to me because I'm not injecting myself. The nurses drew up the needle and handed it to me so I can do it myself. I held it to my stomach, I was ready to go. I then pulled the needle away and thought ‘why do I want to hurt myself with a needle?’ The nurse suggested that we could practise by not drawing insulin into the needle, and just sticking the needle in. WHAT! I asked her if she thought I was dumb. What’s the difference with an empty needle to one with insulin? Come on love, nice try but I’m 25, not 5. The following meal I did it! I couldn't believe it.
The next morning I woke to surprisingly find blood in the bed sheets and on my gown. Did my finger bleed excessively over night? Did I inject wrongly and bleed out? No! I was greeted with a period. I couldn’t believe it. The insulin bought it on. I then got to go home Thursday night.
What a full on next few weeks I had. I got home, couldn’t inject myself and couldn’t finger prick myself. I froze. Lucky mum was there to help. The finger pricks NEVER hurt, but I got all hot and sweaty just thinking about pricking myself. I made multiple calls into Barwon Health Diabetes centre to tell them my BGL’s. After weeks of changing doses we finally got a good dosage that kept my BGL’s steady. I was on 8 units of NovoRapid for breakfast, lunch and dinner and 26 units of Lantus at 9pm.
Fast forward to a month later and the test results from the hospital had come back. It was confirmed. I have type 1 diabetes. My hba1C was 13.9%. Now I know why I was feeling the way I was the last 18 months.
At the time I took it in my stride, I loved it. I loved how I was different to majority of the people I knew. Yes it was bloody hard, but I embraced it. In April I did the D.A.F.N.E (Dose Adjustment For Normal Eating) course. It was great, full on, but I learnt a lot about the disease I am now faced with. I HIGHLY recommend doing this course!!
After numerous and inconsistent Endos and D.E's I finally found an Endo and D.E who I see regularly. They are fantastic. I am very thankful and grateful for my team.
6 months ago, I received a Medtronic 640g insulin pump. I love it. I love not having to have 4-6+ injections daily. I highly recommend the pump if it were an option for you. One of the things that frustrates me about Type 1 Diabetes is the financial strain it puts on people. I for one am not under 21 and therefore am not eligible to receive a subsidised Continuous Glucose Monitor off the government. My income is too high to receive a health care card. My Insulin script is upward of $50. Reservoirs and Mio sets also come with a hefty price tag. Blood strips for my meter - $16 for a box of 100. Testing 5 times a day. So I use a box of 100 every 20 or so days. Not to mention you’re meant to change your insulin pump site every 3 days to ensure the insulin is still going to your body properly and to prevent infections. If I have insulin left in the reservoir, why would I change it? It’s like throwing money down the drown. I could go 4-6 days without changing the site because I don’t want to waste money and or insulin. I could use that money on using a CGM. Which, without it being subsidised is $200 a month, add Private Health Insurance on top and it totals to be roughly $600 every 8-10 weeks. I have a disease that I did not want, that I could not have prevented and one that does not have a cure. Why does it cost so much to stay alive?
"The individual can often have guilt over the expenditure of their diabetes and the burden it can pose on their families. There is usually some burnout at some stage of the diabetes journey but this is consistent across the board whether you are younger or older when diagnosed. Friends and family can be very supportive but can also have their own opinions on your condition and the way you should be managing it. When you are an adult, you are your advocate and it is generally up to the individual to either dismiss the opinions or try to challenge the misconceptions." -Jessica O'Shannassy- Diabetes Educator
At the start of this year I hit a rough patch in my Diabetes Journey. The honeymoon stage was over. Why do I have Diabetes? Why me? I don’t want it anymore. I don’t want to live my life wondering what was next. Would I have a hypo overnight? Would I wake up the next day? I didn’t want to be attached to a machine 24/7. I don’t want my life to revolve around diabetes. I didn’t want to test my BGL and give insulin EVERYTIME I wanted to eat or drink. I went from testing 3-5 times a day to only testing once maybe twice a day. Those were just some of the thoughts constantly running through my head. I went into a shell. I ignored my friends. Would they still want to be my friends if I have to finger prick and inject all the time? My family didn’t know how I was feeling. No one knew. It wasn’t until I messaged Jessica (D.E) and asked her if I could come off the pump for a couple of weeks. She rang me and I bawled my eyes out. Just what I needed, a good old fashion cry. And boy did I cry. If we were in drought, I would have saved us. Jessica said I could come off the pump for as long as I needed. She explained how, because I would have needed to go back to injecting Lantus as well as NovoRapid. I was off the pump for 6 weeks. It was a good break. Just what I needed. Yes going back to 4-6 daily injections was tough, but I wasn’t connected to a machine anymore, I was free! (well to some extent anyway, I still had diabetes). So I thank Jessica for being there through that rough period, your shoulder was great and I owe you at least 2 boxes of tissues!
It is normal to hit a rough patch. We live with this all day every day. If you have hit a bump in the road, please don’t think that you are weak. You are stong. You have to live with this all day every day. Yes, most people don’t understand what you’re going through, but you have people around that are wanting to know. So if you are going through a rough patch please seek to speak up, talk to a friend, your D.E, Endo, a family member, your GP, a psychologist or even just write what you’re feeling don’t. Don’t let it build up inside of you. Don’t be scared, people wont judge you. You’re not only mentally but physically tough to have to deal with this daily. And I take my hat off to us all. WE ARE AMAZING!!!
I believe being diagnosed later in life is harder. I had to alter everything – alcohol, sports, work, relationships. Last year, I suffered my first hypo when I was out at a night club in Geelong. It was 2am and I had just walked into Home House. I was shaky and dizzy. Was I just drunk? I sat down on the side of the dance floor and thought I better test my BGL, 2.1mmol/L. Holy guacamole! So here I was, in a night club eating a pack of skittles from one hand and my friends vodka raspberry in the other that I stole to boost my sugars. I’m sure the bouncers would have thought something was suspicious. I felt like I was chewing like a horse. My sugars were quick to rise, and I continued my night. But I was starving (which happens after I have a hypo) so off to the kebab shop I went. Nothing a lamb kebab covered in garlic sauce and garlic kiev balls can’t fix, right? And yes, I did bolus for them. But then on other nights I could have shots of everything under the sun (black sambuca being my favourite) and my BGL’s would remain steady. Go figure. Thanks T1D for your inconsistencies.
Whereas if you were diagnosed as a baby or a child, you would grow up not knowing any different. You would learn from an early age, you have your parents to test your BGLs, to inject you and your parents are the ones who have sleepless nights with waking to check at all hours. Whereas when you’re older, you have to wake to do it yourself. In saying that though, I could not imagine what parents go through when their child is diagnosed.
When I was diagnosed I didn’t worry my parents. What were they going to do? Take it all away? I know they wish they can take it away, but they simply can’t. I have got this forever. Originally when was diagnosed, Mum thought I got diabetes because I ate too much chocolate and had a few extra love handles. After diagnosis, she would constantly ask ‘Can you eat this?’ It wasn’t until I took mum to my first Endocrinologist appointment that it finally sunk in that it wasn’t from too much chocolate. And now when people make that assumption that it’s from too much chocolate, she politely tells them that’s not the case and that it’s an auto immune disease.
My friends and family welcomed the change in my lifestyle with open arms, and I can not thank them enough. Some were there when I needed them the most. If it were for a shoulder to cry on, an ear to vent to or to just have them there they were there. And I appreciate them so much. When I have the pump showing on the outside of my clothes, my friends ask me what music I’m listening too (in regard to my pump being an ipod). They love it, and I love that they are so causal about it. I have left some hypo treats at friends houses who I visit frequently. My cousin bought me skittles and jelly beans and has labelled them in her pantry. She also bought little cans of lemonade. Just for me. Her children tell people not to eat or drink them because they are mine. These are the people you need around you. I have the most supportive friends and family.
My cousins daughter got a finger prick at the doctors and the doctor gave her a tissue to wipe the blood. She said ‘Mum, can I just suck the blood? That’s what Caitlin does.’ My cousin laughed and said sure. I love that they are so inquisitive on what happens and what’s it all about. I have even taught them how to finger prick me.
My advice for anyone who is newly diagnosed, whether you’re 5 or 25 is don’t be scared. Inform people, teach people what you’re going through. They dont know. I’m not going to sit here and tell you that the journey is all rainbows and butterflies because it definitely is not. But if you want to eat that block of chocolate, you bloody well eat it and enjoy it!
I have met some amazing people through my Type 1 Diabetes journey thus far, and can’t wait to meet more.
CAITLIN LAMONT is a twenty something living and working in Sunshine Coast after recently relocating from Geelong. Caitlin works in disability services and volunteers to support young kids living with Type1 Diabetes..