We have lived with Type 1 Diabetes for nine months. That is over twelve hundred injections, not that we are counting. Most days it doesn’t interfere with life. Apart from ensuring we don’t leave the house without a bag of sweets, a pot of rich teas, a few needles and a blood sugar machine, life pretty much goes on as normal.
Then something goes wrong.
Twin Girl got sick this week. She got a tummy bug. Nothing big, not too horrendous. Her brother got it too and vomited all over his Dad at Beaver Camp. At least Twin Girl made it to the loo.
I am a mother with seven years experience behind me, I can ‘do’ tummy bugs.
At least I used to be able to.
Suddenly throw in insulin and blood sugars and pesky little bastards called Keytones and I feel flipping useless.
I need to call a nurse to help me deal with a bug.
I had to go to a&e in the middle of the night because of vomiting.
I no longer can see the line between when I am overreacting and when I am doing the right thing.
Truth is, diabetes scares me, and for someone who doesn’t like to ask for help, that is a wee bit of a bugger.
Five days on and she is still unwell, her brother recovered within a matter of hours . Her blood sugars are still behaving like they have had a night on the gin. Today her bottom decided to join in the party in an explosive fashion.
Again, I feel a bit clueless, can I manage a sloppy bottom, do I need to get help? Is her body coping, or is her awol pancreas letting down the team again?
I know it is unlikely I will get through the day without calling my (excellent and lovely) diabetic nurse.
I do miss dosing her up with Calpol and putting her to bed with the knowledge that she will be better tomorrow.
I do miss my sense of rational.
It is not that we are not coping, there is not much in this world that I can’t manage. It is just that everything seems a bit overpowering, I am not fully confident in my ability to care for my child anymore. I don’t want her to see my worry, but I don’t want to dismiss it as nothing. I don’t want sympathy, this is our lot in life and we will overcome it with style.
But,
I also want people to realise what she carries with her everyday. I want people to understand that without research and developments and government investment, diabetes can kill.
A women died in January, six miles from my house, she died of hypoglycemia. This means her blood sugars dropped in her sleep and she never woke up.
This is my biggest nightmare, diabetes can kill and it does so silently. According to Diabetes Uk…
‘Young women with Type 1 diabetes are nine times more likely to die than their peers – and young men with Type 1 diabetes are four times more likely – and this is likely to be because many of them have not had the care needed to give them the best chance of a long and healthy life.’
We need to change these odds, we need to do it now. This is my daughter we are talking about.
For more information on children with Type 1 Diabetes please visit http://www.diabetes.org.uk/
Big hug Jane – I can offer no wisdom, just respect and love to you all.
Thanks Jenny x
Ohh no tummy bugs are the worst! Hope everyone is feeling better soon x
Thanks Kim x
It sucks. But you are doing all the right things, and in the process you’re educating her about how to take care of herself, so that this doesn’t happen to her in the night. It’s not fair at all, but she has you for a mum, and you’re doing a great job xx
Thanks Helen x
Such a brave girl and so unfair on you all, she should be happy having fun without these worries. I hope the odds will improve for you as she grows up.
Thanks x x x x x
It’s bloody great that you are asking for help and reassurance when you need it. I bet your diabetes nurse and A&E staff would far have rather unnecessary calls and trips than parents who think they know it all and put their children’s health at risk. Hope your lovely girl feels better soon xx
Thanks Ruth x
I hope you’re all ok and she is doing better, sounds horrible 🙁 makes me realise how much I take it for granted. Sending you lots of good wishes and hugs xx
Thanks tas x
Sending huge hugs to you all xx I hope everything starts to settle down soon. Frankly I have never felt so alone as a mother since Libby was diagnosed and that is hard. I’d love to be able t turn to my Mum, my friends, my family for reassurance but the fact is unless they have cared for a child with type1 diabetes then they can’t reassure you that it’s perfectly normal for this to happen, it will be alright. It is a huge burden , it is scary, and heartbreaking, and it never goes away. People flippantly tell me we will get used to it, and this instant they dismiss the daily struggle we go through and lead me to make a mental note not to mention it to them again. Or people simply vanish from our play date circle not able to cope with not knowing what to do. I’m sorry I don’t have ny words of advice, tummy bugs are not something we have encountered yet. But I know the stress that you will be feeling and only wish I could ease that horrible burden. Thankgoodness for Diabetes nurses, how people coped before they were around I will never know .
Oh Kerry, you write as I think.
I no longer can see the line between when I am overreacting and when I am doing the right thing. My son is type 1 and I can completely relate to this statement! I feel like this a lot, my son is 15 and does take responsibility for his diabetes with my support, but the worrying and general daily struggle of diabetes never leaves us, it’s a nightmare! I agree with Kerry’s comment too, thank goodness for our Diabetes Nurses!
I think it is the headache that it is incurable, so it always has the upper hand – does that make sense?
You are the best advocate there is for her Jane you really are. Trust in your intuition and pick up the phone as and when you feel you need to. They are there to support you. Sending love and gin!
Thanks lovely lady x
You are doing such a great job and cope so incredibly well. Developments in research are happening all the time and making such a difference. I do hope she can get a pump soon xx