Diabetes can be so very unpredictable.

We had a sweltering few days last week in England, and as always in reaction to extreme heat my blood sugars were soaring. It felt like it felt like my body was just guzzling insulin as I had to redose again and again via my pump, with little result.

More often type one diabetics can experience hypoglycaemic episodes when temperatures are in the red, this is because sweating increases both metabolism and energy. Diabetics are warned about the use of saunas and taking too-hot baths for this reason. However, others are like me with their bodies reacting in the opposite way by running high. I’ve even heard of some people having to double their basal rates during the summer, but of course there’s always that fear that you will then administer too much insulin and your sugar levels will then plummet through the floor.

I’ve Googled relentlessly to try and find out why I might be particularly susceptible to this reaction, but there’s not much out there. The only possible reason I can find is related to being dehydrated - which I am pretty much constantly. I found a page quoting Lori Roust, endocrinologist at the Mayo Clinic in Arizona, who says “When you’re dehydrated, you have higher concentrations of blood sugar because less blood flows through your kidneys. With less blood, your kidneys don’t work as efficiently to clear out any excess glucose (blood sugar) from your urine .” [everydayhealth.com "How Weather Affects Your Blood Sugar” Beth W. Orenstein. 6/12/13]

Still, it’s mainly a matter of guessing games. Even the diabetologists seem confused. The fact is simply that with type 1 diabetes there is often no rhyme or reason. This is something that non-diabetics (you know, the blessed ones with well-behaved pancreases) can often fail to grasp. This can be extremely frustrating. You might be asked when experiencing a high or low: “Why is this happening?” and when you give the answer “I have no idea”, you are faced with furrowed brows and confusion.

There are so many other random factors beyond our control that can influence diabetes and everyone is different. Hormone levels can be a huge one for women. Insulin sensitivity, the sites you inject into, illness or stress, medication, pain, a rise in heart rate, and the list goes on. 

The lack of comprehension by some people without diabetes about the unpredictability of diabetes can become particularly problematic when there is also an eating disorder at play. A common situation is where a diabulimic insists they have taken their prescribed insulin but are then found to be in a state of hyperglycaemia. Of course a certain degree of scepticism is natural, and completely legitimate, as eating disorders can be sneaky, clever and deceptive. In fact. it would be quite naive and perhaps irresponsible not to question the given information in cases as such. I have used tricks, pulled the wool over the eyes of those concerned. An eating disorder can be all consuming in the same way diabetes can be, it can be hard to stop and consider that you are colluding with an illness that could kill you.  You have your blinkers on and you act in certain ways that as a well person you never would. You can cause hurt to those you love and be shameless to the extreme.

But it’s never completely black and white. Sadly, treatment services that are sufficiently trained in diabetic related eating disorders are vanishingly scarce. This I know firsthand from experiences both as a day-patient and inpatient at units that claimed to know all about my condition but in reality didn’t have a clue as to what they were doing. I’ve been accused of exercise when my meter kept showing morning hypos. I’ve been disregarded when numbers were a few points above the target range yet I’ve (truthfully) insisted that I haven’t manipulated my insulin in any way. Unexpected highs were always considered to be my own fault no matter how much I tried to relay to them that sometimes diabetes just doesn’t play by the rules.

I’ve also been dismissed when explaining to  well-meaning health professionals how my blood sugars will react or why they are reading as they are because they consider themselves the expert. For example, they change my snack at the last minute from a banana to a pear because they ‘ran out of bananas’ and I say, well I need less insulin to cover this, but they’ve insisted on the same dose and surprise surprise I’ve then dropped low. Or I say ‘Okay I am teetering at around 4 right now, if you give me my insulin at 6pm and dinner is late and doesn’t arrive till half past, I will be on the floor by then.” As a result, I then end up gulping down my meal while trembling all over the place and in floods of tears.

But no, because you are ill, everything you say must be irrational. Often doctors will just not back down or admit they are out of their depth. I can understand there are reasons for this but it doesn’t make it any easier to handle. With diabetes, as well as other chronic health conditions, the person with the condition is the expert. WE know best as to how our body reacts, we know all the facts, we have to live with it Every. Single. Day.  I believe we always deserve to be listened to, have the points we raise considered and acknowledged, instead of just passed over with the shake of a head.

It’s really difficult coming to terms with the fact that we can never know what could happen day to day. Being quite certain that you will be at an acceptable level and yet be flummoxed again is frustrating and provokes anxiety. It is rare to ever feel too safe or stable as you can never be sure what may trigger the next high or low, and it can be exhausting trying to control. The simple truth is we cannot entirely do that; all we can do is our best.

By Claire Kearns.