I read a fair amount of stories, concerns and questions other T1D’ers have posted over the internet and sometime I find it interesting what worries people, what challenges others have and how other T1D’s feel about certain topics and how this is different to me. It made me wonder if over time I will also start to think about diabetes differently, treat my diabetes in a different way or feel different about it. I have come to realise that since being diagnosed almost 12 months ago these changes have already taken place, so I thought it would be a good idea to compare the answers to a few questions related to living with type 1 diabetes of a T1D novice (such as myself) and a more experienced T1D survivor.
In case you’ve not had the pleasure, let me introduce you to the brutally honest writer over at Diabetogenic, Renza Scibilia. Renza has been living the T1D life for going on 17 years, has used an insulin pump for over 12, and has been a mother for 10 years. In her blog Diabetogenic, Renza openly gives a hilarious, and frank account of her daily life, which happens to include T1D. I would like to thank Renza for contributing her “experienced diabetic” answers to the following questions.
(Note: Nor Renza or I had read each other’s answers before providing our own).
What effects do your blood glucose levels have on your emotions each day?
Hmm… that’s an interesting question and a little ‘chicken and egg’ really. I am not sure if my BGLs affect my emotions, or if my emotions affect my BGLs. I think that it is probably both.
When I am feeling stressed or anxious, my BGLs are likely to be higher and far more stubborn. And then if I manage to address whatever it is that is making me feel that way, I end up have a crashing hypo. Fun!
When I’ve had a particularly nasty hypo, I often feel really down and start to worry about how diabetes is going to play out long term.
There is a real and clear link between emotions and BGLs. Unfortunately, it’s unpredictable. The behavioural side of diabetes is one that is really not discussed enough. It’s great to see that there is more discussion about diabetes and mental health, but I believe there needs to be more, including regular and routine monitoring. I know that when I am feeling more emotionally robust and ‘together’, I am able to manage my diabetes far more effectively. And conversely, when I am feeling down, I struggle to care for myself. It’s a catch 22, which is why we need to be looking at ways to help people work through the times when they are experiencing diabetes distress – both short and long term.
I haven’t had all that much experience with this one to determine if my blood glucose levels have a definite effect of my emotions. I know that when I am hypo I feel so devoid of energy that I am sure I am short with my husband at times, until my BG comes back up, which rarely takes more than some jelly beans and a piece of toast. I get more cranky if my BG is too low to go to bed when I am already half way asleep (which happens most nights), but that is more frustration at having to wake up and eat something.
Recently I had a not so happy day, I was overwhelmed with a few situations I am dealing with and just felt under the weight of it all, on this day my BG results tended towards high, and I couldn’t put it down to any other reason other than my emotions that day, so I would say in that instance, my emotions had an effect on my BG results.
How do you feel about when you get ‘good’ and ‘bad’ results
I really don’t see results as good and bad. I’ve made a huge effort to remove judgement words from my diabetes management and results. My BGLs are ‘high’ or ‘low’ or ‘in target’. It has taken a long time for me to do that with real meaning, but that is how I see things most of the time now. That doesn’t mean I don’t get annoyed and frustrated – of course I do. But there is no judgement or ‘fault’ in place. Instead of getting pissed off with myself, I get pissed at diabetes!
I think that the language we use when talking about diabetes is a real issue. Words have the ability to really sting and using positive language can have a positive effect on how we see ourselves as people with diabetes. It’s difficult though, because even though I feel that (most of the time) I use language that is completely not judgemental, this isn’t necessarily reflected in the big bad world! The media is terrible (very judgemental and stigmatising) and some healthcare professionals use really damaging language.
I am still in my honeymoon phase of Diabetes, and I very rarely get a high BG result that I can’t explain – “Oh I had a feeling I didn’t count the carbs right”, “That meal was pretty high in saturated fat” “It must be that time-of-the-month coming up” – so when I do get a result I don’t like, I often feel the need to compensate and get a few ‘perfect’ results in the coming days. I don’t believe I should blame myself, I should blame the diabetes, but I can’t help but get disappointed when I realise I can’t control many aspect of my diabetes.
There is a Facebook group dedicated to people with Diabetes posting pictures when they get the ‘perfect’ 5.5 or 99 (depending on where you live). So at first, I assumed that that 5.5 was hard to achieve and must mean you are doing things right. After getting a number of perfect scores and seeing the many members post their pictures I realised it isn’t about getting the good result because you worked for it, but because you can do it all right, and still miss the mark it’s about celebrating the rare times when outcomes reflect the hard work (or by contrast, getting the perfect score despite having cake for breakfast). This group just highlights to me that feeling bad about getting a ‘bad’ result is pointless, because you can’t always help it.
How do you feel when you see advertising for food with high sugar content (e.g. frozen coke, specialty sweets)?
I don’t even think about it. I wouldn’t eat or drink it, but then, I probably wouldn’t have before I was diagnosed (at 24) either. Having said that, there are days – usually in Summer when it is sweltering – that a slurpie is the only thing I feel like. And when that’s the case, I buy one and bolus accordingly.
I am a real foodie – I spend a lot of time preparing, thinking about and eating food. A meal or a coffee or an afternoon tea cake is one of the most lovely ways to bring friends and family together and nothing is nicer than being able to feed people. I go through periods where I bake every day and then deliver the goodies to the neighbours. It is lovely!
What we choose to eat is an incredibly personal decision. If people choose to NOT eat foods that have a high sugar content, that’s fine. Equally, if people do want to, that’s fine too. I very much subscribe to that belief, which is I believe why food ‘movements’ are so awful. They judge people and stigmatise those who don’t follow their ‘rules’.
I am also a big believer that there is no such thing as the ‘diabetic diet’. I am all about moderation. And if I want to eat a doughnut, I will. But probably not for breakfast, lunch and dinner every day. (But…but….but…if YOU want to eat a doughnut every day for breakfast, lunch and dinner, that’s okay!)
I am still very new to managing my diabetes, and when I think about eating and drinking food high in sugar, I get a bit nervous. Intellectually I know that I can have a Frozen Coke if I wanted to, I would just need to make sure I bolus right for it, but I am still learning to turn down the feelings of worry when I see such items. One by one, cake by cake I am reaching outside my comfort zone and just eating things that I thought I had to say good bye to when I was first diagnosed. And the more the world doesn’t end, the more I end up balancing sugary treats or realise that I won’t go into a Diabetic coma should I not balance, the more confident I am becoming.
However I still deprive myself of certain things, and feel very much left out when I do so. Especially now I am pregnant and extremely susceptible to food advertising. I see a soft drink such as Coke as my Mt. Everest. I am climbing and one day I will reach that bubbly sugary peak, insulin in hand.
What activities or situations make you nervous that wouldn’t, if you did not have T1D?
I really don’t think that T1D makes me feel nervous about any situation. Of course, I consider my diabetes (ALL THE BLOODY TIME!), but that’s the nature of the beast. I went sky diving a couple of weeks ago for my birthday and diabetes was so insignificant in the overall activity. I thought about it, did what I needed, and then jumped out of a plane. But there certainly was never a thought of ‘Oh, maybe I shouldn’t do this – I have diabetes.’ In fact, I don’t think I’ve ever thought that about any situation.
Of course, I am fortunate enough to be living complication-free. This may be a very different scenario for people who have diabetes complications.
The way I think about it is this: Diabetes adds an extra degree of difficult (sometimes SEVERAL extra degrees!) to many situations. A wonderful man I met who had lived with diabetes for 75 years said to me that he doesn’t think of diabetes as an illness; he considers it an inconvenience. I have tried to live by that ever since I had the privilege of meeting him.
Anything I haven’t done yet since being diagnosed. I was nervous the first time I ate out at a restaurant, the first time I had to guess how many carbs were in my meal, rather than measuring, the first time I went overseas, had a coffee, slept alone etc. Even after nothing went wrong after doing all those first, I still feel nervous when I have to enter a situation that requires me to be prepared because of my Diabetes. I havn’t yet gone camping, and although I am nervous (how will I keep my insulin cool, what if something happens and I need a hospital?) I am also keen to give it a try (wow just realised I have not been camping in 12 months!).
I know that being diabetic means I have to be prepared, that it makes certain things more difficult, but I am also aware it does not mean I have to exclude myself from situations, or not do things because of it, I just have to consider more and be better prepared (my hand bag is and will always be massive).
Are you more likely to follow the advice of your Endocrinologist, or take it under advisement and trust what you have learnt about your Diabetes?
I feel I have a really wonderful and consultative relationship with my endocrinologist. Whenever there is something new to consider or try, it is a decision we make very much together. She knows I will always speak with other people with diabetes to hear about their experiences and thoughts and this is part of my decision making process. She also knows that it is me who is living with diabetes and that whatever management strategy we try has to be sustainable. There is no point in saying something like ‘We need to fix your basals – you need to check your BGLs every two hours, including overnight, for the next six weeks. And write them down in this book; turn them into a spreadsheet and analyse all the results daily, providing me with a written report every couple of days’ because I’ll do it for 24 hours and give up.
When I was first diagnosed I was terrified and knew very little about diabetes. I saw my endocrinologist as the person with the key to survival. I took her word as law, and followed everything she said to the letter.
Now I am more confident and understand more not only about diabetes, but about my diabetes. I rely less on Dr. O when I it comes to navigating something I am unsure of. By this I mean, I don’t need to call her up and ask what I should do, but rather I will make a decision about what I will do and then probably consult Dr. O on it at a later appointment.
However there is still so much I have to learn about diabetes management and the best treatments or methods my body responds too, so for this reason still I see my appointments with Dr. O as learning opportunities rather than consulting with each other on best management practices (somewhere I hope to find our relationship down the track).
How worried are you about developing Diabetic complications?
Absolutely. Terrified. And this seems to be increasing the longer I have diabetes. But as terrified as I am, I need to keep it in perspective. I know that there is far better treatment these days for complications. I get my eyes screened regularly and if there are any changes they will be picked up early and dealt with.
Talk about diabetes complications is an absolute minefield. We are told that if we ‘look after ourselves’ we won’t get complications. If only it were that easy. Of course we know that we can reduce the risk of complications with a lower, in-range HbA1c, regular complications screening and by keeping in touch with our healthcare team. But that’s no guarantee. I know people who have never had an A1c above 7, have never ‘dropped out of care’ and are meticulous about their diabetes management who still have developed complications.
There can be this really nasty assumption that if you have retinopathy or neuropathy or nephropathy (all the opathys…) you did something to bring it on yourself. This is a really damaging attitude and incredibly unsupportive.
I am pretty dang worried. So far and thanks to my honeymoon period, I have had great control, but from what I have read and heard from other more experienced type 1 diabetics great control isn’t the be all and end all of diabetic complication avoidance. I was lucky my diabetes was found extremely early on before my levels had a chance to go above 12mmol/ml, so I haven’t yet had any hospital stays, or any complications recorded… yet.
I asked my Obstetrician about what he predicts the end of my pregnancy will hold, seeing as I very easily control my sugars and still have a fair bit of pancreatic function. His answer has me thinking. He said that there is still much about Diabetes and the effects it has on the body, especially, the developing body of a foetus, that we don’t know, and that there could be other factors in it that cause complications. I believe this is true for diabetic complications, having perfect control 100% of the time won’t guarantee a life free from them. So I guess I will just have to accept what comes my way and be thankful for medical advances to treat and prevent such conditions.
How does T1D have an effect on the daily running of your family’s life?
I try to make the impact of diabetes on my husband and daughter as small as possible, but I know that there are times that it is far more significant than I would like. I hate it when diabetes intrudes in my family time and I hate it when my diabetes becomes something they have to deal with. I really hate that my daughter even knows about diabetes in the detail that she does.
There are many people who believe diabetes is a family disease. Not because it can run in families, but because even if only one person has it, it regularly impacts the rest of the family. My husband can count the carbs in my meals as well as I can, and often I trust him to do so. He is always wants to know what my BG is and if I am acting dopy and tired, requests I check to make sure I am not going hypo. It is on his mind almost as much as it is on mine.
As we are about to have a baby I am very anxious about how life will be different for my baby compared to others. I listen to my young mother friends and family talk about how they didn’t even realise they skipped a meal, or how they only get to eat half of a meal because they are sharing it with their toddler, and I know these things just can’t happen for me. I worry my baby will have to stay in his cot crying for a few extra minutes while I treat a hypo; I worry about my toddler having a tantrum because Mummy gets to eat Jelly Beans in the car, but he can’t or even worse, I worry about what effect sleep deprivation will have on my blood sugars. I just hope that Diabetes won’t alter the way I am able to care for my children too much.
Thanks again to Renza for participating in this blog post, if you would like to hear more from Renza you can Subscribe to Diabetogenic.