I wrote the essay below in the middle of July last year - I'd had enough, and I really, really wanted a pump. Writing it all down got my thoughts in order, and I e-mailed it to my DSN, who I'd been seeing very frequently - every few weeks - together with my very supportive husband, as I had really been struggling with the psychological aspects of needing to be so very much in control. I'll just repeat that there is a happy ending to all this - I have a pump, I have a Libre, I HAVE A LIFE - well, I'm getting there.
And if you're going to read the rest of this post of mine, just pop and put the kettle on first, because it's a long one.
Thank you for listening.
IMPORTANT CAVEAT: I haven't edited this since writing it. Please take the bit about the HbA1c with a pinch of salt. I do know how difficult it is for many of us, but this doesn't come across quite right in what I've written below. I mean no offence. Thank you.
*************
REFINING THE LINE
I’m a spiky character, full of ups and downs.
Sudden spikes of anger, rage, and inappropriate laughter sometimes.
And corresponding downward spikes of lethargy and fug.
Spikes have a huge impact on my life. At their worst they can stop me in my tracks – I’ve been known to ‘lose’ whole days at a time.
I need to follow straight lines. Diabetes aside, every plan or idea or timetable or project presents itself to me as a straight line. My straight line needs to be straight. Be spontaneous? Conform to someone’s curveball, a last-minute change of plan? That would shatter my line – and that’s it, then – the end of the world.
And that’s just my life life, not my diabetic life.
Applying this straight-line mentality to my diabetic life is crippling.
Every spike in the line representing my diabetes control corresponds to a spike in mood.
An anger spike which perhaps results in another flight through the window for the nearest cushion.
An angry wife for my new yet already long-suffering husband to contend with.
So what about the straight line of our married life? The thought of ever coping with a family? Well, that spiky line isn’t ever going to lead there.
It’s a shame.
Many in my position as an ‘uncomplicated’ type 1 diabetes patient will, if articles in Balance – and, dare I say it, the Daily Mail – are anything to go by, ‘just get on with it’.
They’ll run that marathon. Volunteer abroad. Row the Atlantic.
These are feats that are impossible for me to achieve. I’m trapped.
I’m stuck behind the tape at the marathon starting line.
I’m behind the barrier at the airport gate, not able to board the plane.
And my Atlantic-bound vessel has been scuttled.
I’m not doing any of those things.
I’d love some more options, an opportunity to improve my day-to-day living.
A chance to despike, to smooth the curve.
To refine the line, to nudge it just a little bit towards ‘normal’.
I work so hard to maintain control. I’m on it. I’m there. I can do it, I do do it and I do it well. In fact, it’s incomprehensible to me why and how some people with diabetes can’t achieve an HbA1c result within the target range. I just don’t get it.
Mind you, to do it the way I’m doing it is a full-time job. In fact, it’s a good thing my job job can be pushed aside, put on hold, paused, whenever it needs to be – which is often. That’s why I’m self-employed – a more formal job just isn’t feasible.
A friend has struggled with her type 1 diabetes since she was diagnosed aged 7. Just couldn’t handle it. Didn’t have the support I’m so grateful to have had. Couldn’t do the work.
Now she has a pump. I had a text from her recently with her HbA1c result. 5.8%. She couldn’t remember it every having been in single figures before. It’s fantastic.
She had got into such a state (retinopathy, kidney problems, can’t feel her feet – and she’s only 38!) from not being able to achieve the kind of looking-after-yourself, the straightlininess, if you like, that I have.
The kind of work – the diabetes maintenance – that is so very important to a pump user.
I can do it. I can do the work. I’m sure I pretty much do do the work already.
I just want to feel better, and in an attempt to achieve this I’ve been exercising a lot since the spring, trying to go swimming every day. I’ve spent as long as I can remember feeling unwell, uncertain, unsure and unhappy, and stepping up a gear and getting fit has become a priority, just to feel fitter and more healthy in general.
But the anxiety of being in the pool is relentless. I have the ‘oh, I’m low, I need to get out’ and the ‘gosh, I can only manage 20 lengths – why has my body run out of power? Oh because I’m high’. I’ve only been going swimming for a couple of months – and it’s taken me pretty much that long to trust myself to actually survive the experience.
I’m loving the swimming – getting up early, being at the gym soon after it opens, 30 (or more) lengths each time – it’s great. This is something I can do to make me just feel better. But it’s so difficult. I have to think about so much.
There’s so much planning involved before I even get there.
If I’m low first thing, it’s tricky.
If I’m high first thing, it’s tricky.
This is what’s involved:
Half a bowl of porridge (20g CHO) before I go to the pool, two boiled eggs when I get back. 2u Novorapid with the porridge, 1u with the eggs.
If I’m between 6 and 9 I’ll have the insulin straight away with the porridge.
If I’m over 10 I’ll have the insulin first and wait 10 minutes before I eat.
If I’m below 5 I’ll have some glucose, wait 10 minutes, have the porridge, wait 10 minutes, have the insulin, then set off for the pool.
It’s exhausting working it all out.
It takes me 12 lengths or so to get up steam. By length 18 I’ll either feel like a powerhouse and want to keep going for hours, or I’ll grind to a halt. There is no in between. If I do grind to a halt I’ll get out so as not to be a problem to anyone or put myself in danger. And then I’ll find I’m 4. Or 12. And that’ll be why I haven’t made the most of my swim.
So I’ll feel hard done by.
All of these negative feelings before 7am – it’s ironic that I’m doing this to feel better!
And what about bedtime? If I’m swimming in the morning, is 5.5 a sensible number to sleep on? Do I need a banana? Shall I go back downstairs and make myself some toast?
Or if I’m 13.5 before bed because I’ve underestimated the amount of CHO in the rice I’ve had for supper – perhaps I’ve had that naughty extra spoonful without paying it the attention it needed – do I correct? By one unit or two? One now, and then set an alarm to test again and have that other unit two hours later? Whichever way I do it, will I then be low in the morning? Or still high…..?
‘Normal’ enough to swim? Or ‘wrong’, so I’d better not?
It’s so much work.
To be able to lose some – just some – of the unending worry, would be amazing.
I recently took part in a focus group organised by the University of Southampton as part of a research project into people’s attitude towards the artificial pancreas. There were 11 of us. Most of us didn’t know each other – I didn’t know anyone – but as the session progressed a feeling grew that I was different.
That I was the only one.
The only one with ‘BROKEN’ written across my forehead.
None of the others looked like me.
I wasn’t one of them.
I was alone.
They all just seemed so normal. Sorted. Settled.
They were just living their lives.
Just getting on with it.
The general feeling in the room as a whole wasn’t a feeling of ‘broken’.
They weren’t broken.
Only I was broken. Just me.
It actually only struck me later. I knew at the time that I wasn’t feeling comfortable, and it was only later that I twigged that everyone else there had an insulin pump. Some were also using continuous glucose monitors. All of this had come out in the course of the two-hour focus group.
When I saw the film ‘Panic Room’ years ago I was envious of the ‘watch’ that Jodie Foster’s diabetic daughter was wearing, which told her what her glucose level was. ‘Only in America’, I thought. Or perhaps only in films? Maybe this was just a prop, an invention, artistic licence for the sake of the storyline.
Wouldn’t such a machine be amazing if it existed in real life?
But it does. If I had a CGM I know I’d still need to do lots of fingerprick tests for accurate up-to-the-minute blood glucose levels, but to also have an idea of the trend in my body on a continuous basis would be fantastic.
Which direction is the line sloping? This knowledge alone would be life-changing. It would be great to add this tool to my armoury, and I’m planning to do so.
I’d love to make my spikes less spiky.
To monitor my condition and administer insulin more intuitively so as to give me more options in my day-to-day living.
To refine the line so as to improve my quality of life.
I have constant, consistent, no-light-at-the-end-of-the-tunnel anxiety about not being in control.
I am afraid to go high. Historically, I’ve always rather been low than high, but really, wouldn’t it be nice to be on a gentle, smooth trajectory?
High is wrong. High is my fault. It shows that I’ve done the maths wrong. If I’m 13.8, that’s it. My line is off whack. It’s the end of the world.
Insulin pump therapy is the most natural form of insulin treatment available today, and I would like my diabetes healthcare team to consider me for it.
I don’t ask this question lightly. There will be a lot of work involved, not just at the start but on a daily basis for the future. And I know that pumps are not actually in fact made out of get-the-right-answer-all-the-time magic.
I have my eyes open. Problems with pumps, I gather, can and do manifest themselves swiftly and frighteningly. An occlusion in the tubing, a wonkily-inserted infusion set, a kink, could quickly result in a 30+ blood glucose level.
Now, that’s not good – of course it’s not.
But a kink, some kind of pump anomaly, could be attributed to the pump rather than to a mistake, a wrongness on my part. This fact in itself would have a dramatic effect on how I’m feeling.
You see, however crazy it seems, a pump-caused blood glucose level of 33 would be to me way less unappealing than a self-inflicted ‘done-something-wrong’ blood glucose level of 13.
Imagine the relief of being able to relinquish some of the responsibility to a machine?
To still be responsible, of course, to still do the work – more, even, than I do now – but with the confidence that I am moving towards a refined line. To pass some of the ‘under-the-thumb’ mentality on to a machine. And to feel better – not just physically, but heck, more importantly, psychologically.
A pump is not a magic bullet.
It will be a great deal of work.
But it will surely do something to ease the knot in my chest which presses me harder into the corner, to lessen the neverending feeling of ‘trapped’ associated with having to cope with achieving such tightly-controlled diabetes by hand.
I do the best I can with the resources available.
I try so hard to be in control.
Not being in control profoundly affects my state of mind.
My best, with the resources I have, does not feel good enough.
It’s the resources need upgrading.
An upgrade, to help to refine the line.
Insulin pump therapy is not a miracle cure. I know that.
But the psychological benefits – even moderate ones – of not feeling so trapped, so broken – would have a profoundly positive effect on my daily life.
*************
Love Snapsy xxx
