It is totally normal to have up and down days, no matter who you are. Life is a multitude of feelings and emotional reactions and thoughts. You push yourself too hard, too little, into corners, and you come out fighting. You take paths that you later realise were not the best, you change tracks and you come to rest somewhere else. Some days you can feel like you are climbing mountains and the effort needed can seem out of reach. I have been going through a lot of taking new paths and then jumping across to another one lately. It can be exhausting and exhilarating at the same time. I started a new part time job and then 7 weeks into it, discovered going back to my PhD was an option. After traversing all of the options, I left the job and I now sit on the precipice of diving right into the PhD, and it is both exciting and scary. When you live with diabetes, you can get the feeling some days that this is all too hard, just too much…. Mostly this happens when there is just too much on your plate in general. Too much for any reasonable human being to handle. If you live with diabetes or care for someone who has it, you will know what I am talking about. With all the work and effort that goes into diabetes management it is any wonder we have time to do anything else some days!
There are lots of stories out there about diabetes, mostly misinformed. So many people seem to think that diabetes management is easy. That is is just about what you eat or don’t eat, that you take a shot, lose some weight, get some exercise and you will be fine, and anyway, isn’t it your own fault you got diabetes in the first place???? Many
ignorant uneducated people still think that diabetes of any type must somehow be due to the fact you ate too much sugar, got fat, or are lazy. This is one of the biggest fairy tales I have ever heard and I know it frustrates the hell out of many of us in the diabetes community.
Fact check – NOBODY IS TO BLAME FOR THEIR DIABETES…OF ANY TYPE
What is less understood is the constant, stressful, difficult part of living with diabetes. The increased rates of depression, anxiety and diabetes distress. The constant battle between highs and lows. The risks of complications and the way this can crush you day in day out. In fact I don’t think I have ever spoken to someone outside of diabetes about the emotional and mental health impacts without them being shocked at this information.
It is wonderful that we have all the amazing tools to manage diabetes now and most of us live fantastic lives, despite the work we have to do to enjoy that, but this does not make it easy. In fact in some ways, all the technology requires more work. When I was diagnosed it was piggie insulin, 2 injections a day and check your urine. Suffice to say control was not great. However the ideas about control and management were also different back then. The goal posts moved when the big landmark trial the Diabetes Control and Complications Trial (DCCT) and later the UKPDS – showed us the significant benefits in keeping the HbA1c below 7%.
Now, don’t get me wrong, these were amazing pieces of work and gave us very important information. But sometimes I do wonder if these targets are helpful for those of us living with diabetes. Maybe, just maybe, they add to our stress and distress? Certainly the stress of trying to keep tight control to avoid nasty complications factors large in many of our lives. It is great we now have individualised targets, depending on age, other health issues, lifestyle and situation, but there is always that knowledge of the risks of high blood glucose over time, and the terrifying, crippling daily risks of low blood glucose, both of which can result in tragic outcomes.
For those of you who don’t have diabetes, here is a way to think about it – just imagine you are told that if you climb Mt Everest every day, you will live the longest, healthiest life possible. You are told that it is pretty easy with all the tools available to you. You know you are likely to slip at any moment, but you know you have to climb or suffer the consequences. Imagine you are given the best mountain climbing gear known to human kind (even if it can be somewhat inaccurate and drive you nuts sometimes!), sent on your way and told to make sure you climb to the very top, or else you may go blind, lose your limbs, your kidneys will pack up, you will have erectile dysfunction, a messed up stomach, be unable to have healthy babies, or die of a heart attack…..and that even if you reach the top your life will be shortened by around 15 years…..oh and while you do all of this, nobody else will really know you are doing it or what you are going through, because you can not SEE the effort required to manage diabetes, there is no obvious kind of disability……if you can imagine this you are getting close to what life with diabetes is like on a daily basis.
There are still plenty of perfect days. The ones where the sun is shining, there is a light breeze, the smell of the earth is in the air as you climb that mountain, you notice birds calling, a koala snuggled in a tree. Music is in your ears and you are not really focused on the mountain, but all of the things you see, experience, along the way, and you just feel, happy. On these days the mountain is just the mountain, you do what is needed, but you don’t worry too much about the consequences.
After you live with diabetes for a long time it is easy to forget that you are spending a lot of time and effort managing it. You just do. If you stop to catch your breath for a moment and realise what you actually do in a day, all the decisions in a day about what to eat, when to eat, how much to eat, what insulin dose to have, when to have it, what medication you need and when, exercise management etc etc mostly based on a test you do many times a day, AS WELL as dealing with everyday life and all the ups and downs that come with it – it is exhausting, but also amazing.
You could look at it this way.
You are remarkable. It is remarkable that thanks to insulin and other discoveries, people with diabetes can and do live long, healthy and happy lives. It is also remarkable that so many people struggle with diabetes distress, depression and lowered wellbeing. This is a lot to do with the effort required and a lot more to do with the fact that people often do this in isolation. You think you are climbing the mountain alone. The thing is, we all have those days. And you are most definitely not alone.
When you look in the mirror today, see that mountain climber and know that you have made it to the top, on so many days. And on the ones where you didn’t, that is ok. Sometimes it is the mountain’s fault, sometimes it is your equipment, or other things got in the way, or sometimes it is just a shitty day on the mountain. Try to enjoy the climb a little more than the top of the mountain. Think more about the journey than the destination. Tomorrow is a new day. Stop where you are today and look around. I guarantee you will find many of us there too – let’s sit down and enjoy the view together.
PS Come on over and join us on Facebook to share stories and if you feel that diabetes burn out is getting on top of you, or you just want to know how to prevent, identify and manage it, you may like to check out my online learning module here