My Diabetes Story – In a Nutshell

By Tara Van Neilson

“I don’t deserve diabetes!” is all I remember saying to myself as I lay in the hospital bed.  I was a young, relatively fit, and healthy 19-year-old. No family history of diabetes and my whole life ahead of me. I was broken and hysterical – I needed a sedative as I broke into tears realising my life would never be the same.

A couple of weeks prior to being admitted into hospital I had been very unwell. I was constantly dehydrated, unable to ever satisfy my thirst, I was weeing throughout the night, I was eating heaps and losing weight (that bit was awesome, I lost 10 kilos in 3 weeks without doing much exercise! Amazing right?!) I wasn’t terribly concerned until I was exhausted, until I couldn’t get out of bed and finally said to my parents I think something is seriously wrong. I don’t think my parents were overly concerned either, but they took me to the local GP anyways. The Doc offered to do a finger prick, but I was too scared of the pain from this simple test so instead of doing the finger prick he gave me medication for type two diabetes. A completely different disease. I went home with the medication, then I was violently ill. My parents took me back again and demanded a different doctor. This doctor insisted on a finger prick and I obliged this time. My Blood Glucose Level (BGL) was 30! A “normal” BGL for a “normal” person is between 4-5.4. My parents rushed me to hospital where I was admitted immediately. I was bombarded with questions, do you smoke, do you drink, do you do drugs, is there a family history of diabetes??  No, yes, no, no. Well you’ll have to stop drinking.

After 4 days in hospital and learning to test my sugar by pricking my finger and injecting insulin, I was released back into the world, the real world. That first night back at home, mum yelled out that dinner was ready. This was it, I had to inject my insulin all by myself. It took me ages to be able to do it, it goes against every grain in your body to inject yourself with a needle (EpiPen, but still). Mum yelled out again, and I knew I had to do it.

I spent the following years in denial. I didn’t want to be known as a diabetic, I didn’t want it to be part of my identity. I hid my diabetes from most people, would only test or inject in the privacy of a bathroom or my car. I felt embarrassed and ashamed by my diabetes, I didn’t want people to think I was broken. So, I went about my life as usual – going to Uni, having wild nights out like any young 20 something, only doing the bare minimum to keep my myself alive. I hid it from people I was dating. I even hid it from my now husband. I thought he would think I was disgusting and dump me for a working and fully functional model. He didn’t.

Looking back on those years now I realise how stupid I was, the risks I took, going out without backup jellybeans, drinking excessively, having extreme high BGLs, not testing for hours on end. Diabetes is serious and can be dangerous. Incorrect carb counting, too much insulin, too less insulin, exercise, stress, heat, cold, staying up late, injecting before or after eating, being sick, hormonal changes through the menstrual cycle or being tired all affect BGLs. And next minute you could be dropping so quickly you turn into a primitive animal and feel the urgent need to take all your clothes off in the kitchen and consume copious amount of milo and dried apricots (you don’t get to pick what you crave in these emergencies). It’s so critical to manage BGLs to avoid the long-term health complications that can develop from poor control: Cataracts, blindness, kidney disease, nerve damage, heart disease and my specialists’ favourite: amputations.

Diabetes affects everything, and no surprise, can cause depression and anxiety. I find myself feeling anxious about doing new things, like going somewhere I haven’t been before because I don’t know how far will I be walking, when will we be eating, what will we be eating, where can I test my sugar and inject my insulin? I remember being so consumed before my wedding day about how I was going to manage my diabetes on the day. I didn’t have a bag, where was I going to keep all my diabetes paraphernalia nearby but out of sight, how was I going to prick my finger to test my sugar without getting blood on my white dress (blood goes everywhere) or inject my insulin with this massive dress on?

And there’s no rest. Not even while your sleeping. Before bed I test my BGL to check I’m at a “good” number. Too low and I need to have something to eat, too high, more insulin, but will that drop my sugar too low overnight? Sometimes I’ll have a nightmare (a common symptom for type one diabetics) and test my sugar to realise I’m low or going low and have to eat a bowl of cereal in the middle of the night. Other times my BGL has shot up over 20 and I have no idea why and I have to give myself insulin while trying not to wake up my husband.

Diabetes is all consuming, even while I write this I had to get myself a glass of orange juice to keep my BGLs stable. There’s no breaks, every minute or every hour is spent thinking about diabetes, how many carbs in that, how much insulin should I give, have I had enough to eat to go for a little walk, do I have too much insulin stored that will be released all at once if I go for a walk, do I have jellybeans and a juice box in my bag. It affects every facet of my life and there’s even some jobs I’ll never be able to do because the nature of the jobs wouldn’t be safe with diabetes. For example, being a police officer, ambulance or army officer to name a few. Due to the fast paced and sporadic type of work carried out, attending to your own diabetic needs could affect your ability to perform your job effectively. Imagine having to stop what you’re doing to test your sugar, have some jellybeans, wait for those to take effect then continue on during an arrest, during a resuscitation, during an ambush? Not to say there aren’t diabetics doing these jobs, because there are, but the advice I’ve received is that these are not suitable occupations for type one diabetics.

Then there’s pregnancy AND diabetes. Pregnancy is tough for a lot of women, managing diabetes on top of that was a nightmare for me. However, being pregnant was probably the first time since having diabetes that I finally started to take it seriously. Because if I didn’t, someone else was going to be affected, and like any new mum, I wanted to give my unborn child the best start in life possible and not be impacted by my inability to manage my BGLS. I didn’t enjoy any part of being pregnant because my entire pregnancy was consumed with managing my diabetes so my baby wouldn’t be born with a cleft palate or Spinabifida. I tried my very best to manage my BGLs, I was counting every carb, I was writing down everything I ate, how many units of insulin and any other detail the endocrinologists wanted and sending that to them every week at the hospitals’ clinic. And every week I would get different feedback – do this, change this dose, what happened at 4:15pm on Wednesday night, why did you eat two bowls of cereal? I was still a pregnant woman, I still had insane cravings. Then one routine visit to the clinic at 36 weeks, the cgt revealed the baby had stopped moving as frequently. I had to stay overnight for observation. The next day, following another cgt, it was decided I would be having a caesarean, that afternoon. I was devastated. I had endured weeks of prenatal yoga, listened to podcasts, and had planned a natural water birth. I hadn’t really considered having a caesarean, and now I was having one, that afternoon. My husband was still at home trying to finish off our renovations. We thought we had one more month before bub was coming. I sobbed hysterically through the caesarean then a puffy pink wrinkly baby was presented to me from over the curtain, she screamed and was rushed off to the special care unit.

One year on, she appears to be a healthy baby, doing all the things a 1 year old should.

Technology has improved drastically over the years. I no longer have to finger prick very couple of hours as I have a flash monitor which sticks to my arm and I can scan anytime, as many times as I like with a scanner or my Iphone. I put off getting the sensor for a while as I was embarrassed to wear the device – it’s pretty visible on your upper arm and I’ve had lots of people ask what it is. I bought quite a few new tops with longer sleeves to cover it up and threw out others that had no sleeves at all, because I’m still self-conscious about it, like I’ve got some sort of contagious disease and this white round disk indicates that.

Not my arm – just a picture from the internet.

Even though I’ve been a diabetic for 10 years, I’m still not okay with having diabetes. I don’t want people to think of me as a diabetic. I feel there’s so much more to me than my lazy, useless, good for nothing pancreas. I don’t want to be defined by my diabetes, I don’t feel like it’s part of my identity, even though it is.

By Tara Van Nielson