Layer Upon Layer

When you live with chronic health conditions, there is often a background stress story, running along your life, at all times. Sometimes it pushes right up against you, other times, it can fade into the background – but it’s always there. If you have a hidden disability like me, most people will forget that you might be struggling; that you are always juggling, always thinking. My poor family suffer the thoughts and anxieties spilling from my lips, multiple times a day, in relation to my type 1 diabetes.

‘I’m hypo…again…’ (low blood glucose, under 4 mmol, which would not happen to people without diabetes and which can lead to coma and death if not treated.)

‘My blood glucose is bloody too high to eat!’ (most foods, especially carbohydrates, but also fat and protein, will raise blood glucose. It’s complex and varies due to so many factors such as the type of carbs, amount, timing with insulin, my gut paralysis, day of the week…)

‘My insulin pump site (the cannula I have under my skin ALL the time, that needs changing every 2 days with a very sharp inserter needle) is failing, sore, irritated, needs changing, again…’

They support me and love me and say all the right things. Occasionally I notice my poor husband glaze over a little. He’s heard it all, many times. But he’s there for me, no matter what. As are my boys and my parents. The thing about type 1 diabetes is that it’s relentless and boring. Add in all of the other conditions I have now and it gets pretty complicated. But still boring and relentless.

My insulin pump has a rechargable battery that has to be plugged into a wall socket at least once a day for at least 15 minutes. I have been on an insulin pump (many different versions over the years) since about 1997. Injections don’t work so well for me due to my complicated diabetes coupled with gut paralysis (gastroparesis.) This means the food is delayed in my stomach, making its impact on my blood glucose levels unpredictable. I can suddenly go too low (hypo) or later too high (hyper) without warning. I can bounce around and have persistent hypos that don’t respond well to glucose. It also means I have an extremely limited diet, that relies on easily digestible carbohydrates.

When I changed to this new fancy pants pump with the rechargable battery, the first one failed within days. It gave me a warning that it couldn’t charge properly and proceeded to rapidly lose power, at night, when I was very new to it and how it worked. I ended up going back onto my old, very loved, much clunkier pump (that is no longer supported or made) for a few days, until a new one came. That was over a year ago. It was scary and stressful.

Last night, when I went to reconnect after my bath. I noticed it hadn’t charged properly, thought it odd and plugged it back in. Ironically that day there was an email to say there was a charging error with these pumps losing battery power, but only if you were also on a continuous glucose monitor (CGM), which I am not. I choose to prick my fingers upwards of 20 times a day, because the CGM is too anxiety producing with all of its alarms.

Anyway, back to last night – after plugging it back in, the alarm sounded (the same as that first time) to say it couldn’t charge. I felt anxiety rising but calmly put it back on a different charger to see if that worked. It seemed to go up to 100% so I took it off and it immediately dropped back to 75% – the same issue as that dreaded first pump…my brain started to whirl, imagining that this pump would now lose power over the next couple of hours.

I called tech who told me to plug it in for 30 minutes. I did that and the same thing, so I called again. Enter my hubby. I am on the phone in a state. I then proceed to have an anxiety attack, low blood glucose, sitting on the loo, dizzy head, couldn’t eat…still managed to get tea on the table for everyone else, including the dog.

Called tech again who walked through everything to check it over and told me to try charging again, a little longer. Thankfully I did that and got it to 100% and it was still on 100% this morning.

I am breathing lighter. I found an alternative power source they’d sent me due to malfunctions in some a while back (mine did rattle!) and am crossing everything. It’s likely it was a glitch in the charger and that the battery dumped because it wasn’t properly charged. It is likely it will be fine now. But there’s always that fear that the tech will fail, usually at night. Of course if that happened I could go back to my old pump and hope it works after a year sitting stagnant. Or injections, until a replacement pump came.

But going back to injections means trying to remember doses and how they work because pumps are very different. Pumps use only short acting insulin with a bolus – used when you eat or need to lower your blood glucose, and a continual basal rate, which can be different at any given time. This is like the insulin a person without diabetes secretes at perfect amounts to keep you steady at all times. A pump means you can create a more responsive insulin pattern to mimic a body as close as is possible. It’s never perfect, but it’s much better than injections. For me, injections mean 2 types of insulin and probably more than 10-12 injections per day. It means a lack of flexibility because a pump shoves out microdoses all day and night, where an injection is one slug of insulin all at once. It means highs and lows and a whole lot of anxiety.

Being stressed already about your health when something like covid-19 comes along is no picnic. It is layer upon layer of anxiety. Whether the events that lead to that anxiety are real or imagined – the anxiety is real. Often the worries are potentially very real too. If you like me, have chronic conditions to manage, dealing with covid-19 is extraordinarily tough – tougher than most other people can imagine.

And I want to say – I SEE YOU. And I send you love in solidarity.

Living with anxiety is waking up and going to sleep at night with a sense of dread. It means feeling like something has to be done, something has been missed, something needs to be sorted, fixed, something terrible is going to happen. It’s all of the what ifs and the coulds and the worst case scenarios. No matter how much you work on trying not to give into anxiety, it still keeps its fingers in your skin. It still pushes itself into your dreams, makes your stomach tremble, stops you from going places, makes you second guess everything, takes you away from life.

I try each and every day to be positive, to calm my thoughts and my body. I try each and every day to live, no matter what comes. I am usually very successful at this. I have a very full, very happy life. But sometimes something breaks and the walls come down and I spill out onto the floor with anxiety stuck through my guts and it’s hard and lonely and exhausting.

Today, I will pick myself up, rely on the technology, have my back-up plans in place and toss hope to the wind, that it will all be alright. And I’ll probably complain to my boys tonight that my blood glucose is too low or too high. And they’ll love me and shout at diabetes and make me feel better and everything will be alright.