Julie’s guest post is the 29th post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.
I’m Julie, and I live in Newcastle upon Tyne with my daughter Evie, who is now 13 years old.
My daughter Evie was diagnosed at 9 years old with Type 1 Diabetes. For a few days we thought Evie had a virus, and she was off school feeling tired and just not herself at all. She seemed to lose weight by the third day, but she wasn’t eating a great deal.
On the fourth day, she complained of feeling like she couldn’t breathe, and collapsed. We rushed her to A&E and luckily she was diagnosed extremely quickly, in a whirlwind of doctors and nurses, an insulin drip, a glucose drip, a heart monitor and oxygen. Very scary stuff.
She was in DKA (Diabetic Ketoacidosis) due to consistently high blood glucose levels as her pancreas was no longer producing its own insulin. Her body could not use glucose for energy, and started to break down other body tissue producing ketones, which are poisonous chemicals which build up and, if left unchecked, will cause the body to become acidic – hence the name ‘acidosis’.
DKA is a life-threatening emergency. We were very lucky indeed that se pulled through.
Type 1 diabetes signs and symptoms can appear very quickly and may include:
- Increased thirst.
- Frequent urination.
- Bed-wetting in children who previously didn’t wet the bed during the night.
- Extreme hunger.
- Unintended weight loss.
- Irritability and other moo changes.
- Fatigue and weakness.
- Blurred vision.
Type 1 Diabetes is a never ending cycle of time-consuming tasks. As Type 1s are completely life-dependent on daily insulin in order for their very survival they must live with a 24 hour, 7 days a week constant vigilance to balance blood sugar numbers, food, exercise and insulin all the while keeping track of where they are, what they are doing and what they will be doing.
Throw puberty and growth spurts into the mix and we’re fighting an uphill battle. Imagine standing in the middle of a seesaw, on one leg, on a very windy day. Difficult enough? Let someone throw a couple of tennis balls at you without falling off and letting the seesaw throw oe side up into the air – that is Type 1 Diabetes.
How It Affects Us
It is exhausting, but as a mother I can never give up. I must pay attention to what is going on with my daughter’s body at any given moment because if I don’t, I could literally kill her by accident. In short, my daughter and I live on the edge. There is no let up, not even when we go to bed each night. It is a constant.
Learning To Adapt
We had no time to come to terms with it, we returned from hospital after 1 week and that was it, I was responsible for keeping my daughter alive, making daily dosing decisions based on quick training from the nurses. You adapt because you have no other choice.
It doesn’t stop us from doing anything, but adds a lot more complexity to everything we do, everywhere we go. It has taken spontaneity and freedom from us and we now plan and prepare for everything.
My daughter’s insulin kit must go EVERYWHERE with her, we must never forget to calculate how many carbohydrates are in any food she is going to eat, we must never forget to refill her insulin pump and we must never take our eye off the ball for very long; those pesky blood glucose readings can change with a hot day, nerves for exams, or a sudden shock and can have serious consequences if we don’t tak action.
Changing As A Person
I have become tough! I fight my daughter’s corner and demand she does the same. I won’t let it define her, I won’t allow anyone else to define her by her condition. I’ve taken on ignorant strangers, unhelpful parents of friends and stepped up to fight our corner with headmasters who did not take her needs into account.
My Favourite Superhero
Elsa from Frozen – Elsa was loosely based on John Lasseter’s (PIXAR) 10 year old son Sam, who grew very frustrated when he was diagnosed with Type 1 diabetes. It seemed to Sam, Type 1 Diabetes was an unfair fate and like Elsa’ struggle, he and other Type 1 kids struggle to accept an aspect of themselves they cannot ignore and cannot change.
Thanks Julie and Evie for sharing your story with my readers and me!