The Worst Week Of Our Life - Type 1 Diabetes

So a few weeks ago we had one of the worst weeks of our lives. 

I didn't say anything at the time as I think we were all coming to terms with it (and we still are and probably always will be). So I just kept posting as normal. 

But I know many people on here have followed this blog for a long time. Some pretty much from the beginning, 11 years ago, you've watched our little family grow up and see our children be born and blossom into amazing young people. 

Our eldest had been very tired and down the last few weeks of term. We kept asking if she was okay, and put it down to hormones and being tired at the end of term, I was worried she was a bit depressed. We then went for a day out (to Harry Potter world) and she really wasn't herself. the next day she slept in (very unusual) and then was tired in the day as well. 

We took her to the doctors and, after a bit of a stressful run around, went straight to hospital where they had phoned ahead. When we got there we went straight into resus where about 8 or 9 doctors and nurses were waiting for us. 

She was unfortunately diagnosed with type 1 diabetes. This came as a massive shock for us. And as they tried to stabilise her, bringing her blood sugar slowly back down and get her rehydrated. She was very dehydrated and although she had been drinking loads the fact she had no insulin in her body meant it just got flushed straight through her. 

The next 24 hours were really stressful. She had great care all the time from the hospital as they tried to get her levels back to normal, giving her fluids via a drip and slowly injecting insulin into her body. Keeping her in the high dependency unit for the first day. 

Obviously we wanted to know what had caused this, but type one diabetes has no known cause, it just happens, her body has stopped producing insulin, which means she can no longer process carbohydrates. It's not caused by diet or lifestyle. 

We also beat ourselves up a lot for not getting her there sooner. But the changes in her were so slow and she kept doing her normal routine (even baking cakes after school). 

The next few days she really quickly improved in her condition. The learning curve was pretty steep when it came to learning about diabetes. It seemed like we were flooded with knowledge, and all of it so important.

Basically to keep her alive she needs to have two types of insulin every day. One is a slow acting, to be taken once a day that works at a low level, all the time. The other is a fast acting insulin that needs to be taken every time she eats any carbohydrates. 

So for every meal we have to work out the carbohydrate in what she'll eat, then make sure she has the right level of insulin (correcting for what her currently blood levels are at that moment as well). 

First time out for a trip to Hereford

In the future she can be fitted with a pump, but she needs to be able to inject herself first, so we're using this as an incentive. The pump still needs lots of working out, and changing every three days, but it will save having quite so many injections. 

For our stay at hospital we tried to make it as "normal" as possible. I brought her brother and sister in each day (her mum stayed there with her), we were allowed out into Hereford for trips out, in fact we were encouraged to, to get used to reading her levels and figuring out what to do in different situations. 

After the cinema trip. Almost felt normal. 

We even had a great trip to the cinema. 

She was so pleased to go home! We all were! That first night with the five of us back under one roof was so good. And yet it was like having a new born back in the house, we had to keep checking her levels and adjust to suit. It's been a bit like being a safe cracker trying to get them right at night (annoyingly her body still, intermittently, produces a bit of insulin randomly, for the next few weeks, which can make her levels crash or peak for what seems like no reason - annoyingly called "The honeymoon period"). 

She has a sensor on her arm, which makes it so much easier than finger pricking, She can scan herself and we will know her blood sugar level then. They have better tech which links to up to 5 phones all the time, but the funding has just been pulled for that. So we'll sit and wait hopefully for that to come back. 

We're slowly getting used to our new normal. Luckily I work from home, only a mile from school, so I'm going in each day (she's only been back for one so far) to give her the injection for lunch. And I can work out tea and try to make it as easy as possible for her. 

She has coped brilliantly with it and seems to be coping much better than me or her mum. The first week I was an emotional mess. 

She came home and that first morning back baked a cake to work out what carbs were in the whole thing, then worked it out per slice! I was very proud of her. Her brother and sister have been great as well, helping to work out what she's eating, and just generally being great siblings. 

Things not to say to me or my child-

 

"Well it could be worse" - Yes it could. I know that, it could be a hell of a lot better as well. Please don't say this to someone who has just had their child become disabled in a matter of days. She'll be dealing with this for the rest of her life. 

"The technology makes it easier" - It does, it really does, but believe me it's still crap. Yes, it's no longer a death sentence, but it's still rubbish on so many levels. Imagine trying to work out the carbs for everything you eat and making sure you have the right level of insulin for it. Now imagine doing that for the rest of your life.

"She shouldn't have eaten so many sweets" - It has nothing to do with how we lived or our diet, it's just something that happens unfortunately.

"So you can scan yourself, it's like a superpower" - It is not a superpower and please don't patronise her, she's 11, not an idiot. I know you can try to look for positives on all things, but there aren't really any here. We have talked honestly with her about it. 

"She might grow out of it" - as the one lady doing the food at hospital said to her, trying to be kind no doubt, but she was confusing it with type 2 diabetes. She won't grow out of this. 

It's hit me really hard. I'm a self sufficiency expert, someone that has trained their whole life to need as few people and inputs as possible. Self reliance, to be able to provide everything my family needs. I can do most things, I even took up swimming as I was worried if they fell in I wouldn't be able to save them. Now we're dependant on insulin and constant technology to keep my first born alive. 

I'd trade this with her in a second if I could. I wish I could take it from her and have to deal with it instead of her. It feels like such a complication on life for her and it makes my heart ache. 

*I spoke to her about posting this before I did. I wanted her to say if it was okay or not to use these pictures. She knows that this blog is a big part of my life and was fine with me sharing this with people I consider friends and the fact it might help educate between type 1 and type 2 diabetes.