Sally's Open Letter
Phoebe & Sally at Phoebe’s graduation. Sally said “She is now nearly 20, living away from home in college in Sydney (we live in Brisbane) and not letting type 1 stop her! But it is a huge thing that she has to self manage every day. I still wake up all night to her alarms and call her to check on her! We have some of our longest conversations at 2am while we wait for her levels to rise!”
There are so many aspects of Type 1 that those with the disease (and their carers) have to face on a daily basis besides just blood sugar levels and carb counting. One major frustrations that we go through is the questions and comments by our friends & family and complete strangers too… Most of us were as uneducated in the beginning as well, we get it, it can be hard to understand and its so complex. Plus there isn’t much awareness around type 1 (which we are working hard to change) and its often confused with type 2.
A lot of us receive the same questions, “advice” , comments and concerns (or the opposite , a total lack of) so I am in the process of writing up an article that will cover a lot of these and will be something that will be easy for the readers to understand and easy for you to share with your family and friends, whether that is soon after diagnosis, or as new people come into your lives and would benefit from them reading it (We are 1.5yrs since diagnosis here and I will be sharing both this blog post/open letter as well as the article in mention when its complete with my own family and friends).
In my research for this article (hoping to have it out by next week) I met Sally in our type 1 foundation group . Sally’s daughter was diagnosed 5 years ago when she was 15. Sally wrote a letter to her friends and family to clear up a few misconceptions and explain how they were feeling, Sally kindly shared this letter with me and as a type 1 mum I feel every word deep in my soul and when I asked her if I could share it she was more than happy to and we are more than happy for you to keep sharing it as it will be relatable by so many of us.
- Nik
PS - If you have anything you’d for me to add to the article being put together please email me at admin@type1foundation.com.au
Sally wrote:
I am writing this not for sympathy for me or for my daughter, Phoebe, but because I do not want anyone to be deceived by the impact Type 1 Diabetes has on a family. If I don’t share this, I worry that those of you I talk to who meet other people with Type 1 may think that the disease isn’t a big deal, and you may diminish the truth.
Usually when I am asked ‘How is Phoebe?’ I say she’s great, because she is. She copes well, we have access to great medical advice and her life goes on basically normally. However, as I woke for the 5th time in one-night last night I decided that I was doing an injustice to people with Type 1 by saying she’s great and by not making you aware of what this actually means.
To clarify, the following realities do not mean she isn’t coping well or isn’t compliant. It does not mean she isn’t healthy; it does not mean we are all about to have a break down over it. It is simply to demonstrate to achieve this does not come easily. The reality is I have had to make 2 promises to my daughter that most parents don’t have to do.
Firstly, I have promised her that diabetes will not stop her doing anything that everyone else does. It doesn’t. However, unlike most 15-year-old girls that run out the door to go somewhere, she has to make sure she has her tester, jellybeans and a needle called glucagon that we hope no one ever has to use on her. It means that every time she gets dressed, she has to think about where she will hook her pump on and will it change the look of her outfit. It means that she always has needles attached to tubes in her leg and sometimes they are uncomfortable. It means she has a device always on her arm and people ask, “what’s that”? It means she has to deal with the stupid fact that most of the world think that she got Type 1 from eating too much sweet food.
Note; if you ever hear this you need to tell that person, that Type 1 has nothing to do with what a person eats, it is an autoimmune disease.
It means that there are times she feels terrible. Sometimes she walks home from school, and all she can do is sit on the floor and asks for a popper because she’s low. It means there are times she is so mad with the world, taking it out on her family often, because her levels are high, and she isn’t thinking rationally. It means there are times she has to go to sick bay because she’s exhausted from late nights sorting out her levels and she just needs 30 minutes sleep. It means a new needle in her leg every 3 days and a new device inserted in her arm every 2 weeks and frequent finger pricks and all these hurt.
It means she can eat anything, but everything she eats has to be accounted for. It means that she has had conversations with me about fearing her dying in her sleep. And yes, it does happen. Type 1 diabetics have hypos in their sleep and if they are not picked up, they can end up in a coma and yes some do die, thankfully rarely. It means she worries that if she gets an everyday sickness her levels will go up and if she cannot get them down that she will end up in DKA, which means she will be in hospital, many end up in ICU and some don’t survive, thankfully again this is rare, but real.
I’m not writing this to scare you, it’s just the truth that Phoebe must live with, and I have to talk to her about. It is also something that weighs on me every time she leaves the house, especially overnight. Which brings me to my second promise. I have promised Phoebe that during the night I will check on her as often as it takes to ensure her levels are as best they can be. If she sits too high or too low all night, she will wake up feeling horrible. I have also promised her I will not let her die. I ask you how many people have to have that conversation with their child?
In order to fulfil this promise I have not had one full night’s sleep since she was diagnosed. Sometimes I wake just once, sometimes 5-6 times. And each time whilst tired and sleepy I need to make an informed decision of what to do. This can mean sticking a popper in her mouth and telling her to sip and hoping I don’t wake her because she needs her sleep or making changes to her insulin rate. Each time I walk down that corridor in the dark I feel a little bit of worry, what if she’s dropped too low as I slept?
May I add, a night where she has bad levels bares no reflection on her ‘control’ of her diabetes or if her levels are out of normal range it doesn’t mean that she has done something wrong. Her control is excellent, and she is excellent at caring for herself, it’s just that sometimes her body reacts differently, sometimes it just wants to throw a curve ball at us to deal with. That’s why type 1 diabetes is a disease you can never take a day off from.
What this actually means is most of the time I am functioning on lack of sleep, which doesn’t always make me very rational, or nice, but getting woken by your alarm every 1 – 1.5 hours 5 times in one night feels a little like torture. Don’t get me wrong, my husband helps, but quite simply he doesn’t wake to the alarm. I then run the rest of the family and house on lack of sleep, and go to work, which some days is hard.
Type 1 diabetes isn’t cheap, since diagnosis 6 months ago we have spent $2000 alone on her CGM device in her arm, plus money on other supplies and medical appointments. I am thankful we are in the situation to afford this without worry, other people with Type 1 are not so lucky and this is another worry they must live with.
So again, I stress this is not a rant to get sympathy. We are doing great, Phoebe is wonderful, diabetes is not stopping her doing anything she wants to do now or in the future and it is just something we all live with and get on with. We all know there is no point complaining and Phoebe’s acceptance and lack of complaint continually amazes me. We know too well that things could be worse, and that diabetes is nothing compared to other diseases, but it is her reality for the rest of her life.
I have written this simply to ensure we have not given anyone the wrong impression, because if you ever meet a person with Type 1 diabetes, I just want you to know that they are dealing with a lot more than someone without it. I hope this has shed a little light on what some people in the world are living with. We are aware this is just one disease, there are many others that I know nothing about. I guess that brings up the importance of the saying
“Everyone you meet is fighting a battle you know nothing about. Be Kind. Always”.
Sorry if there have been times I have not recognised that those of you reading this were fighting a battle. And please note by no means am I saying that anyone has ever been unkind or unthoughtful to us. I do however like the simple message in this quote.
Written by Sally McAuliffe in the year following Phoebe’s diagnosis