Do you get the feeling some days that this is all too hard? Too much. Do you get that awful, nagging, creeping feeling that there is something wrong, something missing, something amiss? I do. Mostly this happens when there is just too much on my plate. 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. All the work and effort that goes into diabetes management it is any wonder we have time to do anything else some days.
There also seems to be a dominant story out there that diabetes management is easy. That all it is about is eat this, don’t eat that, take your medication or insulin, get some exercise and “she’ll be right”. A story that many ignorant people in the community also have is that people with diabetes of any type must somehow have eaten too much sugar or something and all they have to do is avoid it and they will be fine. This is one of the biggest fairy tales I have ever heard.
It is wonderful that we have all the amazing tools to manage diabetes now. I for one am delighted to now have 5 second blood glucose machines and a pump. 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 from keeping the HbA1c below 7%.
Now, don’t get me wrong, these were amazing pieces of work and gave us invaluable information. But sometimes I do wonder if these tight (and getting tighter all the time) 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.
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, sent on your way and told to make sure you climb to the very top, or else you may find you go blind, you may lose your limbs or die of a heart attack……if you can imagine this you are getting close to what life with diabetes is like on a daily basis.
There are those perfect days. The ones where the sun is shining, there is a light breeze, the smell of spring in the air, you have nothing much planned, or else something really delicious planned, the day stretches out before you and you just feel, happy. Diabetes plays fair on these days.
After you live with diabetes for a long time it is easy to sometimes 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, look in the mirror and see what you you are dealing with, 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 (well that needs its own blog) AS WELL AS dealing with every day 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 to do with the fact that people often do this in isolation. We think we are climbing the mountain alone. There is a lot of guilt, especially when things are not going as you would like. The thing is, we all have those days. The ones where the blood glucose levels are up down flying around – this is part and parcel of life with diabetes.
When you look in the mirror today, see that mountain climber and know that you have made it to the top, on many days and on the ones where you didn’t, that is ok. 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, wherever we are.