I sit here writing this post. It is currently 3.59am, my boys are ok, my T1 is sleeping and his blood sugars are ok but I am still awake, watching them, wondering if C’s blood sugars will drop too low before morning or not.
I am sat watching his Dexcom. With it I can see his blood sugar levels without finger pricking him, although I do still prick once or twice per night; to check it is running accurately.
The Dexcom will alarm me if Carters blood sugars go too high or too low and then I can intervene and literally (when it comes to a hypo), save his life.
Without the Dexcom, what would I do? What did I used to do? I can’t remember, although I do remember waking up for hourly checks for a good few months – killer. BUT, how else do you know? That your boy won’t die as he sleeps? That he WILL wake up in the morning. No sleep is worth the consequences of missing a hypo and your child dying.
You will be reading this, thinking ‘here she goes again’ but I promise you, these really are genuine and valid fears for us Type1 Mommas. Dead in Bed syndrome is so prevalent in our world and lately I feel like it’s everywhere. It is on my mind more so lately than it ever has been before and I am frightened!
When Carters blood sugars were high and unstable it was scary. Now, they’re lower and safer yet I am still frightened.
- Will Diabetes steal my boy one day?
- No matter how good control he has – it happens.
- Is that his future?
- What does his future hold?
- Will I screw up and him die?
- Will my sleep deprivation/exhaustion take over and I’ll tragically sleep through a hypoglycaemic episode – the one that claims his life?
- What if I give him too much insulin in error?
- What if HE gives himself insulin in his sleep? (it happens – I know someone who it happened to)
- HOW did our lives come to this?
- In what world is it normal that I live with such horrific, relevant fears? The kind of fears that anyone (if they didn’t live this life too) would think I was ready for being sectioned?? Think I was making it up? Believe me – I wish I was!!
But, all this unfortunately is genuine and is valid!
MY fears are real and every Type1Momma feels the same. And the T1’s themselves – well, God help them. I have no idea how they cope, they are super-human to even be alive!!
I am frightened that one day Diabetes will steal my boy, like it stole my Mum and it steals people: babies, children, teens, moms and dads – ALL the time! And I am frightened that I have valid and justifiable reasons to be frightened because I wish everyday that it was different and it’s just my PTSD causing it – it’s frightening that it isn’t; and as feared – my fears are valid and real.
Ok, so I know I need to own this and work with it. After all; this is our life now – THIS IS HOW WE LIVE NOW….
And I do, I prioritise and I compartmentalise, I use positive affirmations and redirections. I blog, I offer support, I help raise awareness and I work hard everyday to be normal – and happy!
BUT, recently, some of the losses throughout the Diabetes Communities have really affected me. I have felt them personally. I knew one lady, had chatted with her online – admired her! I knew just how knowledgeable she was and how fine-tuned her Diabetes Management was, yet she got a virus – a simple virus and BAM – Diabetes stole her. Now her young children and her husband are alone. She’s gone, like my Mum went and like I’m so frightened Carter will too.
I’m so frightened sometimes that I can’t even breathe! I can’t sleep or eat or even get dressed. I just survive and keep him alive as best I can.
I’m frightened that I don’t know how to leave him for 48hrs per week (as of next week) when I go back to University full-time for my final year of Nurse Training. I barely manage 24-36hrs a week. I’m frightened that 48 will finish me off.
Will I die young because of the constant fear I live in? The sleep deprivation? If I die young, who will look after him then?
Does my obsession with Carters health and safety jeopardise my relationship with Morgan? Does he feel less-loved? He might say not, but will he look back and remember Mom always being knackered cos she was up all night checking on Carter? I don’t want that, I NEED to prevent that but I don’t know how?
I’m frightened to leave the house without them – either of them. I’m frightened in case something happens to me or to them and then they’ll live the same life I have, experienced the same pain I did, as a teenager, when my mum died. That’s always been one of my biggest fears – until Carter developed Type1 Diabetes and now I fear my own shadow! (in my defence it’s not a pretty sight)!
I’m frightened that when I’m not there and something happens and Greg’s asleep: what if his alarm doesn’t wake him up? Or my phone call-check-in doesn’t wake him up? What if something happens and I’m not there? What if he’s ill but I can’t leave work because Nurses can’t just run out on their responsibilities – more so student nurses because you can’t take time off your training. What would I do? I even planned that I will be at the same hospital Carter would be brought to, or any of my guys would be admitted to (I work at our hospital) so that if they were ever rushed in, I would be here if I couldn’t get to them in time.
The harsh reality is that I NEED to work. Greg and I re-organised our lives around Carters diagnosis that way. I am the bread-winner (I hate that term – the bread is not a luxury M&S loaf let me assure you), I go out to work and he would stay home and care for Carter. He volunteers in school 3 days a week so he is around Carter. IN addition to that, every single day, 1 of us has to go down to school and help C administer his insulin and check his blood sugars for lunch, we were hoping the school would take over this responsibility but the truth is, some days they fail to even finger prick him and he ends up arguing with them to manage his diabetes effectively therefore, they are not ready and may never be responsible enough to care for my son safely – Greg HAS to be around, nearby – to keep him safe!
So, as we want more from life than a 1 working parent family, the kind where you can’t holiday or treat your kids. The kind where you live (like we have for the past 12 months) hand to mouth, struggling to meet the bills and keep the car fuelled. Because we want more than that – for our boys, Greg decided to redirect his entire professional life and therefore, for the past 12 months, he’s taken an advanced training course in Learning and Development. His qualifications will equip him with the knowledge and experience he needs so he can work in a school once he’s graduated. This combined with his Art and IT qualifications will allow him to move into higher education as our boy progresses with his education and hopefully he will be able to work at the same school Carter attends. You see: one thing we did agree on was that it is important to keep Carter in school. In the Diabetes Community A LOT of children are home-schooled because although they say differently, I can assure you – school’s don’t do well with diabetic kids. It’s just hard – very hard! But, we felt it was important for Carter to remain in main-stream. He needs the social development, the motivation and the discipline that only mainstream school can provide. And, I want that life for him. I want him to claim normality and have an education where he can go on to University and earn a good living – if anything, he will always then, be able to afford his medical equipment. The future of the NHS remains uncertain and let me tell you, even with the NHS, it is NOT cheap. I’d hate for him to be in his 30’s wondering here the hell he finds the cash for his next vial of Levemir. This happens throughout the world and it breaks my heart – these people die. NOT MY BOY!!!
So, I have to work. Greg stays home, but it’s not that simple. Because, I NEED to be at home too. I manage everything. I’m the one who stays awake at night and who charts his numbers and decides how much insulin he needs. I want to be here when he’s sick or sad or upset. It breaks my heart that I can’t be and even though I know my husband will protect him with his life, I have a duty – to him – to them all, that I can’t keep when I’m not there, because I’m at work.
There is no solution! So, my heart breaks! I wish things were different, I wish I was just lazy and couldn’t be arsed to work, because then, I’d be able to give myself a talking to and sort myself out. The fears I have over work aren’t because I ‘just don’t want’ to go, they are because I HAVE to be elsewhere. But then I don’t go and we don’t survive: if I don’t work we can kiss goodbye to the Dexcom for starters and the safety-net that provides. It’s hanging in the balance with my working wages so without it and the extra hours I have to put in to cover it, it would simply be impossible!!! So then I go and we keep the Dexcom and can maybe afford a day out once in a while and a bigger stocking at Christmas or a nice steak v’s frozen chicken – and then I’m not there for my boy – when he needs me (because he does need me). So, What do I do? What is the answer? There is NO solution!?!
So, I am frightened and I’m frightened that I am frightened, that my life is so fucking frightening and I don’t know what to do to change it. It frightens me that there isn’t anything I can do to change it – that’s frightening!
I’m frightened that I can’t get perspective, I can’t see a solution or even an end goal anymore. Life is now completely illogical and if there’s anything I’ve ever been – I am logical.
But now I can’t see a logical solution: Your kids grow up and have their own lives, they get married or study and have their own families and homes and careers – that’s logical. But will Carter do that? Will he be well enough to do that? If I do manage to get him to adulthood healthy and safe and able to look after himself and manage his own diabetes independently. What happens if he screws up and dies? What happens if he lives alone and he’s ill and ends up in DKA? Or he has a hypo, who will save him then? Who will be there to keep him safe and alive?
This is our reality now! It happens:
Beautiful Mandy: a Neurologist, a wife, mom and Type 1 Diabetic, had excellent blood sugar control, was a master of her disease. She got a virus, the insulin she had been taking wasn’t enough to keep her blood sugars safely in range, so she increased her insulin. And then suddenly, it was too much – just like that! And then she hypo’d and was alone – her husband and kids weren’t home. When they got home it was too late. Mandy fought for weeks in a coma and unfortunately she lost her fight. Diabetes stole this beautiful, gifted lady from us all! https://www.facebook.com/pray4mandy/?fref=ts IT is both Frightening and Heartbreaking.
Emily, aged 29, an athlete with excellent control of her blood sugars, she experienced a hypoglycaemic episode in her sleep and she never woke up: http://www.dailymail.co.uk/health/article-2311715/Nothing-prepare-29-year-old-type-1-diabetes-dies-suddenly-suspected-dead-bed-syndrome.html DIABETES stole her from her family and friends. Frightening – Heartbreaking!
I read a story a few weeks ago about a young boy (Type1), who had desperately wanted to go to a friends sleepover. He had wanted to go for years and due to his Type 1 Diabetes, his mom couldn’t let him go. As he was older and more responsible and he was ok, she let him go. They were in a tent camping – having fun, the next morning they realised the boy had died in his sleep.
Hypoglycaemia is a killer.
Dead in Bed syndrome is so real!
This weekend a little girl died in her sleep to hypoglycaemia. It’s enough to never sleep again! I don’t know if I will ever sleep properly again?!
And then, at the other end of the scale, when blood sugars run too high; are the long-term repercussions of diabetic complications, or the short-term (that we all know too much about due to Carter’s near-death experience in March last year) the emergent, serious, fatal dangers of DKA (Diabetic Ketoacidosis) FATAL – fast and fatal. Super killer – are there, waiting, to steal your life too!
Diabetes is always there – always waiting. I hate it!
So you keep their blood sugars high enough so they don’t hypo but low enough so they aren’t hyper and you live with the fear; because the rewards – that they are alive and healthy – far outweighs the pain of exhaustion and noting a few extra wrinkles when you look in the mirror.
Diabetes frightens me. It is a Chronic, Dangerous Disease. Type 1 Diabetes is quite possibly my biggest fear! It has ruined my childhood and now it is ruining my adulthood and my son’s childhood alongside it.
I live in fear of it – it frightens me so much! But I won’t let it win! It won’t steal him, I won’t let it take him. And I will do everything I can to make sure that when he’s older, it won’t take him then either. I need to take his fears and own them, so he can live and have a childhood, when he’s old enough and responsible enough, and able enough to handle the fear; I will teach him all about being frightened and using that fear to stay healthy and alive.
I work very hard every single day to manage my fears, to own them and compartmentalise them so that I can function and be effective and so that my fears and uncertainty do not impact on my boys’ childhood or outlook.
We are surviving in a wonderful suffering.
Right now, considering it’s Carters 1st D’versary, that this weekend last year our journey began, that my fears emanate from right there, that he lay dying, in a coma in severe DKA. Combine that with loosing one of our own today; one of our cherished online community members. AND a little girl lost her life to hypoglycaemia as she slept too – all that, in the same weekend – it was just too much for me to process. I feel ALL of their pain; as a parent and a daughter and a child and on behalf of my T1 Son too. I feel it ALL and I was unable to process it effectively – it was far too much for my heart and my ‘logical’ mind to handle.
My fears are alarming at me with flashing lights and pom-poms right now – raw and uncontrolled. So now, I have to work hard again, to find my perspective, to believe that I will overcome them again; until the next time. And I will continue to pray and to work hard and continue to be completely exhausted – to make sure that for my boy – for him – there won’t ever be a next time!
YOU can help us if you like, you can donate to my sons fundraising page to help me afford the upkeep of his Dexcom and if you can’t or are unable to do that. You can share it with your social media accounts and maybe someone from there can. I will be very grateful if you could click on the link and offer us your support: https://www.justgiving.com/crowdfunding/CartersDex
I hope and I pray for you and your loved ones that there will never be a next time AND you will always find some comfort to outweigh your fears..
Look for the Rainbows in the Rain 🙂
Rose ❤ xx