Looking forward to Easter

I’m really looking forward to Easter this year. Not only is there the long break from work, the wondrous supply of chocolate eggs and a city break to look forward to, I am also looking forward to the last week of a year-long clinical trial.

Don’t get me wrong: I’m glad I participated in the chance to try out a new type of basal insulin. I’m glad I’ve helped to understand the affects of this insulin and I think it is better than the Lantas that I normally use: the release profile of Lantas is not completely flat for 24 hours resulting in me feeling sleepy by the end of the day. I think I will miss the new basal insulin.

However, I will not miss the regular hospital visits (at least once per month) to report on blood glucose readings and insulin doses, get new supplies and every three months have a fasting blood tests. I will not miss the phone calls between the hospital visits to report blood glucose readings and insulin doses.

Very quick after being diagnosed with diabetes, my consultant decided I knew what I was doing and only needed to see a specialist once per year. Since then, early each year (January or February), I would take a trip to the local hospital to see a different registrar. Every year, I would get the feeling I knew more about diabetes than the “specialist”.

Whilst on this trial, I saw more of the diabetes healthcare specialists in one year than I have ever seen before. Unfortunately, it has proven to me the only way you can really know diabetes, is to live it all day ever day.

The healthcare professionals I met during the trial have provided advice on how to balance my blood glucose levels. However, they do not live my life: they do not go to the gym on a whim followed by a social post-work, post-gym drink or two or three and then get home too late for dinner one day and then the next day go straight from work to the climbing centre and then the next day work more than ten stressful hours trying to complete a sudden short term deadline and then spend the weekend walking and then the next week leaving work on time and have five quiet nights at home followed by a domestic weekend of cleaning, gardening and watching movies.

You get the idea: I don’t like to have a predictable life and I don’t live any more predictably because I have diabetes. So when I have a blood glucose reading of 3.2 or 12.3, I am not surprised (although I try to avoid it as much as possible). But when the nurse on the trial questions why these wayward readings every time, I start to wonder whether the nurse does not understand my life or whether she does not understand diabetes (or perhaps she just needs to make sure she reports it correctly for the trial). I guess you can never truly understand diabetes unless you live with it every day and you never understand someone else life because you can never entirely live their life.

Once Easter is over, my time on the trial will be over. I will miss the new insulin butI will not miss having to explain why it is not easy to manage diabetes.

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It is good to read these blogs and discover others with diabetes have the same concerns. I have only been on insulin for 2 years and feel like a complete novice at times. My lifestyle is hectic, full time job, 3 kids and a husband to look after….two days are never the same and as a result my blood glucose levels vary widely. I can feel on top of the world some days and completely wiped out others. It seems to be a juggling act you never quite get on top of as some piece of it drops. I have strived to learn as much as I can about the condition but it still catches me out and I think there will always be good days and bad, although hopefully the former will out weigh the later. I just wish more people had a better understanding as it is difficult to explain to people sometimes why you are feeling how you are without going in to all the anomolies and boring the pants off them!

Well done Dan for seeing the year through. You do need the specialists but your own ‘gut’ feeling may be the best. I don’t have diabetes but having had other health problems I know where you are coming from. Listen to what they have to say and then you can make an informed decision. Good luck in all you do. Love A. Lesxx

“I guess you can never truly understand diabetes unless you live with it every day and you never understand someone else life because you can never entirely live their life.” – you could not have got this more right! It’s the perfect summary of a condition that sometimes is the world’s most well-behaved child and at other times, you just want to put it in the naughty corner – and like children, there’s often not an explanation for why or when either one of these situations happens!

What a superbly truthful piece of writing. My levels swing quite alarmingly as well, but I’m not on any medication…just diet and exercise…so consequently in the winter when I don’t exercise too much everything is much higher than in the spring, summer and autumn, when I cycle, run, walk, swim, garden, etc etc. to top it all my annual test is always round about February/March…so guess who’s goody eating in December stands out like a great big sore thumb!! But it would be nice to meet a diabetes health care professional who knows something about life and a lot more about diabetes.

As a 18 year old diabetic & Team Manager of Team Carbonyzed – the international charity cycling team – I live an extreamly active life. Cycling between 2-6hrs a day, and almost every day there is not a cat in hells chance they could “Understand it must be difficult”. I honestly believe that you consultant should follow you one day a year, or every few years to understand your lifestyle, it might really help.

I mean ive had diabetes since i was 6, and i still dont understand everything – and im a A* biology A level student with a very sound knowledge of the condition & treatment, but with no day being the same, routine & regularity (which is all i get suggested to do) isnt possible, so control is a continuous trial and error.

Thank you for writing about this!!! I can completely relate and it’s brilliant to know I’m not on my own in thinking that the so called “professionals” actually know a lot less about diabetes than the people who live with it. As a child, I remember constantly being questioned by nurses and doctors. “But Bronagh, WHY were you 13.1 this morning when yesterday morning, you were 5.2? What did you do wrong?” I don’t know. Maybe I ate a little extra one night than the night before, or maybe I did a little less exercise that day. Or maybe something upset me and my levels went high as a result. Or maybe, just maybe, I’m not a robot and my life cannot possibly revolve around striving to obtain exactly the same blood sugar reading at the same time each day. It’s just reassuring to know that it isn’t just me that feels this way. I guess we grow to know our bodies better than anyone else could, and maybe that’s the way it should be (although sometimes I feel like a little understanding from the “professionals” would be nice, instead of an interrogation after they see anything they don’t like)!

For years I wondered if it was only me that had these thoughts about specialists not understanding diabetes or my life. I stopped going to the 6 monthly checks because every piece of advice I was given was contradicted ny the next. Refreshing to know that other people feel the same but disappointing all the same that there is little consistency when comes to advising people on living with, and managing diabetes.