Type 1 Diabetes and us: diagnosis story

Type 1 Diabetes and us is the third in a series of spring cleaning posts. This originally began it’s life as a page on my website back in 2015, but I’m having a timely update of my site and felt this would serve better as a post than a page…that’s the techie bit done with, now onto the hard but…the diagnosis…

Diagnosis – Deep breath! This is difficult to do, go back over 8 years to Beth’s diagnosis (Thursday 10th April, 2008 20:30hrs) It’s difficult for two reasons; it was a long time ago, and things are very different now, it’s still an emotional journey into the past.

Lets do a run up!

Two weeks prior we’d been on an Easter break with family, Beth wasn’t quite herself, she was moody and irritable and tearful. I remember taking her out of a restaurant to give the other diners some respite from one of her tantrums. One more thing, she’d started wetting the bed. We were proud that our little girl had been potty trained very young and was perfectly dry throughout the night from 3 onwards but now every night there was an accident.

We got home and life carried on, I admitted defeat with the bedtime wetting and reverted back to bedtime pants, Bethany drank. Then Bethany drank some more, so I prohibited drinking after a certain time of day to reduce the likelihood of her wetting through the night, Bethany screamed, shouted and cried that she was thirsty. She drank bath water, she licked rain water off the tops of metal railings, she licked her fingers if she spilt a drop. Now I know what goes in has to come out again, therefore you’d expect a lot of trips to the loo but Bethany was taking this to the next level, I was convinced she was peeing out more fluids than she was taking on. I started to monitor her fluid intake and was shocked to find she was drinking in excess of 2ltrs a day and according to her demands this was not enough.

A trip to the Dr’s was disappointing to say the least, our GP wasn’t there so we saw a locum. ‘Have you any diabetes in the family’? ‘No’ I answered, ‘Well it’s not that then’! I was given the number for the children’s ward at our local hospital and told to make an appointment for blood tests, this was Monday 7th, the closest appointment I could get was the following Tuesday!

Beth became lethargic and complained of not being able to see the television properly ‘It’s like there’s rain on the TV Mummy’ What a wonderful yet sad way to explain her sight was blurry! On Wednesday 9th we rang NHS Direct for advice, we were told that as we’d seen a Dr and an appointment had been booked for blood tests, we should wait for the appointment.

Thursday, all day, Beth lay on the sofa, when she wanted to go to the toilet I had to carry her …. I pause, you must be screaming at the screen right now! Take her to A&E! With hindsight it all seems so obvious now, and not taking Beth any sooner is a burden I will have to bear for the rest of my life, thank goodness she came through it, but when professionals keep telling you it’s ok, you believe … because you WANT to believe. The truth is I KNEW she was Diabetic, it had to be …

Thursday afternoon I went to the loo myself and my bum stuck to the seat, on closer inspection Beth had splashed the toilet when she’d been to the loo … her wee was sticky like syrup, and yes! I did taste it (mums gotta do what a mums gotta do) – it was sweet! What’s more, now Beth’s breath smelled funny, sweet, like pear drops! Brett came home and we called NHS Direct again. Another adviser told us to hold tight until next week … my response was, well I won’t type what I actually shouted at the phone but it basically meant go forth and multiply! Before Brett had put the phone down I was in the car, Beth strapped in beside me, and I was leaving the driveway to go to A&E … reading this back it looks as though I’ve abandoned my husband but he needed to be home with our baby lewis and he’d be the first to admit, he doesn’t do hospitals.

My baby girl was barely conscious when we got to the hospital, she was seen immediately and taken to resus where drips and needles seemed to be hooked up left, right and centre. A doctor, who in my memory looked quite like a taller Harry Potter! looked me in the eye and calmly said ‘Bethany is very poorly right now, she has Type 1 Diabetes and although this seems as if the world has ended now, not before long you’ll be an expert in Diabetes, much better than me’! Beth had Ketoacidosis and although she was now critically ill, it could have been devastatingly worse.

The time was 20:30 on Thursday 10th April when our world changed for ever.

Picking up the pieces – So! what do you do when you’ve been told your baby has Type 1 Diabetes? Well, after you’ve picked yourself up off the floor, you pick up the Diabetes put it in a bag and sling that bag over your shoulder to carry for the rest of your life. Sometimes the bag gets heavy and you ache holding it, other times you’d love nothing more than to throw it off the nearest bridge – but that’s your baby you’re holding too and I’m never letting her go.

After a week Beth and I came home, I’d camped by her bed the whole time. Her baby brother Lewis was only 18mths and how do you explain the change in our lives to a toddler? Brett talked about good aliens and bad aliens in Beth’s body, the bad aliens being the antibodies destroying her beta cells that produce insulin and the good aliens being the insulin that would make her feel better. It worked, I recall many times when Beth would curse the bad aliens and hail the good! I won’t lie, it took a good year before I felt we were turning a corner with Beth’s diabetes, in fact it was probably just before her Coeliac diagnosis that I was starting to feel fairly confident with managing it. I NEVER cried in front of her though, it was when she was asleep that I’d kneel by her bed and cry silently.

The ripple effect –  Beth oddly favoured injections at first, then the insulin pen and finally the Omnipod which she uses to this day. The Omnipod is mentioned in more detail in a blog entry. There were times when Brett and I had to pin Bethany down to give her injections or, in the early days, attach her Pods. To an onlooker it would have appeared barbaric … to Lewis, it must have been horrific. Mummy and Daddy pinning a screaming Bethany down, then silence followed by lots of cuddles and Mummy/Daddy loves you! We tried to protect Lewis from these scenes but sometimes this was not possible. Something else through the eyes of Lewis;

How’s Beth? Did you test her whilst I was out? What was she? What did she eat?

How are you feeling Beth? Are you okay? Do you feel low? Do you feel high? Have you done your test?

…. how are you Lewis? are you okay? what have you eaten? how do you feel? …. is what I SHOULD have said

To find out more about Lewis and the effects this has had on him as a sibling in the early days check out this blog entry

[image courtesy of Elegant Themes stock photos]