I’ve had type 1 diabetes for nearly 12 1/2 years now. When I was rushed into hospital and diagnosed I had no real knowledge of diabetes. My only “knowledge” was if it was going to be the one where I’ll have to inject everyday (my worst nightmare) or the one that I don’t, the was the extent of my knowledge. I got “my worst nightmare” type 1 diabetes which is auto-immune which means my own immune system attacked healthy cells and caused diabetes. I remember there being a girl when I was in high school who had diabetes and I just recall that she ate a Mars bar before games lessons, that was it. I had no idea why or how they were different. I had absolutely no idea that there were any other types of diabetes too. I mean, I didn’t even know what the two were called, why would I? The Monday morning after I was taken into hospital (I went in on a Saturday morning) it was explained to me by my consultant that I would have to inject for everything that I ate/drank, I crumbled. Fair play, to my then consultant (he’s recently retired), he was very gentle and kind in explaining. He even managed to make me laugh by “launching” a needle into his own abdomen to demonstrate how “easy” it was to inject, because due to my limited knowledge that was my only concern at the time. I know that would have horrified some people but it did at least stop the tears for a while.
For years I just took what my health care providers told me as gold and I did the best I could, as I was told, like a good girl. I kept myself on a very strict and restricted diet. I went through a successful pregnancy 10 months later and have a very healthy 10 year old. No one told me either that there was a honeymoon period after diagnosis. I can’t remember asking any questions and so I never took ownership of my diabetes.
Overtime my insulins changed and I self taught how much insulin to give by looking at the portion size and just knowing me, I was initially given base doses for each meal time to work with. Things were fine and I would have a clinic appointment at the hospital once a year. Eventually things started to go downhill and my Hba1c started rising, my team were concerned and started to monitor me approximately every 3 months. When it wasn’t improving I was asked to see a dietician again and have a bit of a chat about carb counting. I wasn’t aware of carb counting at all. I didn’t know anyone else with diabetes to ask either. To be completely honest I think it was more down to burn out and dealing with this by myself day to day, night by night. In fact I wasn’t even aware that it was burn out then as I didn’t know this existed until recent years. Just looking back it makes sense as to why I’d been so good trying to “control” my diabetes for years and then I just slowly gave up caring really what the numbers said.
I was introduced to Twitter by a lady from my church to keep up to date with events at church. It wasn’t very long after, and I don’t recall how, that I came across other people with Type 1 diabetes and eventually the diabetes online community or #doc for short. Slowly I’ve learned more about my diabetes via the the articles and blogs shared. Also by other people’s experiences about their diabetes in real time through their tweets, not saying “woe is me, give me attention” but just sharing what real life with diabetes is like. It literally has its ups and downs on an hourly basis (sometimes minutes). I’ve learned that it’s not just me, I can’t “control” my diabetes but I CAN manage it, that I’m not necessarily getting it wrong, other’s do make mistakes also and sometimes its just diabetes, etc. I’m sure many of you can add to the list of “realisations” since finding others with diabetes. Through finding the doc Ive been made aware of websites that help and therefore conferences and discovery days which have been really helpful. I know how to use the internet, have done for years, but as I took all my health advice from clinic I never sought out any information online, why I do not know. Stupid huh?
There have been many times that I think I should just ask someone online and haven’t only to come across someone asking the same question and getting lots of helpful responses and support, or the subject has been covered in a Tweet chat. It’s good to know that I’m not just being dumb and it’s a learning curve for all of us. I need to remember that other’s didn’t know the answers once and had it explained to them by someone else.
Since finding the doc I have also recently starting to download the information from my blood glucose (BG) monitor and take it into my clinic appointments armed with questions and probably answers too. I’ve become aware of pumps for adults. I did know, in recent years, of children with pumps but at that time I wasn’t aware that they were also used by adults. I now know a bit about Continuous Glucose Monitors (CGM) etc. I have used one and at present I have a Freestyle Libre. I can’t list all the little bits of information I’ve learned too that help with the day to day of living with diabetes.
So, since I now download my BG monitor information, I know I can do this with a CGM/Libre. My next appointment is coming up and I’ll be able to go along “armed” with this information too. I’m interested to see if it has helped me to lower my Hba1c more, it has been coming down very slowly but I do want it lower and I’ve been trying really hard, even more so now that I can see what’s happening with a graph. I have learned so much already from the information that it gives me. I slip up from time to time but I’m only human and it’s not always my fault. It’s diabetes and it doesn’t follow the rule book.
Having graphs to look at I’ve recently been taking a closer look. Only last week I noticed the words “standard deviation” at the bottom of the graph. Oh dear! I don’t know what this means!! I thought “I need to ask someone, but I’m going to look like a right ‘thicko’ when I ask all these knowledgeable people in the doc”. Anyway I plucked up the courage and bit the bullet and went ahead and asked about standard deviation. I’m glad I did. I’m not the only one who’s wondering about it and its usefulness.
There are lots of questions in the past I didn’t ask and I should have. I’m aware that I’ve still got a lot to learn, as I read somethings and I don’t fully understand it all. I just hope I can pluck up the courage to ask next time and therefore help myself or someone else to know more about managing diabetes.