When I say the ‘d’ factor, I’m not talking death or depression here, though many aspects of what I’m going to say will apply to these and life in general. The ‘d’ I’m particularly referring to is diabetes.

I was diagnosed with type 1 (juvenile) diabetes at the age of 6. Since then, life has been a constant balancing act – not just of food and insulin injections but all the other things that can impact on blood sugar level. So, that includes exercise, moods, temperatures, weather, nerves, anxiety, stress…

My parents were always keen to emphasize that diabetes didn’t need to stop me from doing anything. There are a few things like operating heavy machinery and driving restrictions that do apply to diabetics, but otherwise my mum and dad were pretty much right – as parents usually are!

Well, actually, they were ‘mostly’ right, but more on that later.

When I was about 13, I went on a Diabetes UK (then British Diabetic Association) activity holiday on Drake Island in the Plymouth Sound. I caved, climbed, abseiled and canoed, as well as generally having a good time.

Celebrity diabetics have also achieved many things – in the sports arena and elsewhere. Olympic rower Steve Redgrove went on to win his fifth medal after his diabetes type 2 diagnosis and actress Halle Berry has type 1 diabetes. These are just two of many examples.

img_2395-001Myself? Well, I try to juggle diabetes, parenthood, publishing, writing, reading and trying to do 1-3 hours of challenging exercise six days a week – cycling, swimming, climbing, dance, weight training, some running. Also training for triathlon and get out on the surf when I can. (On a good day, it’s all enjoyably within my stride. On a bad day, yes, I’m almost exhausted even listing it. Fortunately though, I was also brought up on another ‘d’ word – determination!)

However, while doing most things any healthy person can is possible, what is less often acknowledged is the added effort required and the extra energy, time and sometimes emotional cost of doing anything a ‘normal’ person can do. Mostly I manage (with help from those around me also fitting in around my blood sugars), but not always. Also, although I only exercise for a few hours, a large part of any day is spent getting my blood sugars to a point where I can hopefully exercise without having to stop just 15 mins in because of my blood sugar levels.

Fortunately for me, freelance life does give me more flexibility to fit all the day’s activities around my blood sugars. But nothing is an exact science, and even this flexibility isn’t always enough to predict and prepare for all eventualities that may alter my blood sugar levels in the wrong way.

Control is a word often used when referring to diabetes. However, as even emotions can affect blood sugars, this presupposes that we can control everything in our lives – which, of course, we can’t. In practical terms, control for me is more accurately described as close monitoring, fast reaction and some educated guess work when I have to predict the effects of an unknown/previously untested mix of many variables.

In other words, yes, I can do anything a normal (whatever that is!) person does but only with a lot more effort. In reality, this also means that I can often do anything a normal person can (though not necessarily in the same way a normal person can) BUT not everything a normal person can – I usually have to prioritise and let go of some things in order to make the most important goals happen.

When I was a journalist, the priority was being able to drive at an instant’s notice – so that I could get out and cover a news story. This meant I ran my overall blood sugars slightly on the higher side of what might be ideal, in order to avoid the risk of low blood sugars stopping me drive.

When I was pregnant with my first son, the priority was keeping blood sugars as low as possible so as to minimise risks to him. I wasn’t on a continuous-infusion insulin pump at the time and long-term insulin had an unmodifiable profile, so in practice this meant waking up every few hours every night to check my blood sugars and take extra short-term insulin when necessary. I was exhausted before my son was even born, and, almost inevitably, depression also took its chance to pounce at me from all corners!

[NB – The video below shouldn’t be watched by anyone who is adversely affected by the sight of blood.]

I now prioritise keeping fit, alongside my family, trying to earn a living, V. Press (our authors and our readers) and writing, of course. In fact, exercise (like creativity) has actually turned out an essential part of keeping my mind and body healthy and re-energising me so I can do the other things. But in order to have this, sadly, other elements of life (and social interaction/events/social media…) have to fit into the limited time and timings this dictates. The nature of my exercise itself also tends to be restricted.

I used to think I chose to exercise alone because I liked combining it with working through thoughts and emotions. More recently, I’ve realised that though this is sometimes the case, I’d mostly love the motivation and pacing of exercise with friends but just find it too difficult to ensure my blood sugars will always be right to train whenever they want or we agree to go. Spontaneous sport is only possible when my blood sugars happen to match that spontaneity.

So, the reality is that I spend a lot of time exercising alone in order to start as and when my blood sugars are spot on for that activity, rather than put others out if I can’t get my blood sugars to the right level for a pre-set time. I also tend to stick to things that don’t require me to drive very far to take part, so that I don’t have to worry about balancing blood sugars not just for exercise but also a safe drive there and back.

I’ve talked a lot here about exercise – perhaps one of the things most likely to require extra effort and thought for diabetics. But, particularly as I get older, doing just about anything with blood sugars that are too high or not quite high enough feels pretty awful. High blood sugars can affect my concentration and make me feel tired, sleepy and irritable. Meanwhile, if my blood sugar drops too low, I’m liable to I have no energy and feel overwhelmed by even simple tasks.

And many other activities beside exercise can impact on blood sugar levels. Driving, performing, even just being out and about instead of at my desk bring with them slight changes in exertion level. But, more than this, they can also bring with them anxiety or nerves. And anything that induces nerves or adrenaline (the fear of heights/falling that is a part of climbing is a prime example) means my body will be automatically releasing chemicals that will also affect blood sugars. Then, I can get nervous about this effect on my blood sugars, creating a vicious circle.

These are the kind of things that happen. Having been diagnosed age six, my diabetes has mostly always just been there, in the background. While pretending to be invisible, it is in fact a shadow, lurking. Although I’ve been factually aware of the control element and my potentially shortened life expectancy since my late 20s (writing about it once ten years ago in a poem ‘Prognosis‘), this knowledge has mostly been at an emotional distance/viewed through the protective lens that youth often allows. To be honest, I’ve actually spent most of these 35 years since diagnosis occupied by another ‘d’ word – denial. This denial not so much of the condition itself, more of the difference it makes (yes, yet another ‘d’!) Quite how much diabetes actually affects my daily routine and pretty much every aspect of my life has only really become obvious to me over the past few years.

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This is partly because I started climbing – an activity that can’t easily be enjoyed alone (the reason I boulder on my own more often than I’m able to actually climb with a buddy belaying). This has been a very real reminder of the balancing – or juggling – act involved in coordinating food, exercise and insulin so that it doesn’t impact negatively on what I want to do or my long-term health. (Blood sugars need to be high enough/insulin levels low enough not just to start exercise but to keep going over a certain period of time. Any delay starting may mean my blood sugar levels then go too high to start. But if they dip too low at any point during exercise, it’s likely to be a minimum of 30 mins before I can restart properly…and so on to a potentially phd-length essay on all the variables that can and do come into play.)

Over the past few years, I have come to realise too that the depressions which I get from time to time aren’t just linked back to the childhood trauma of my initial diabetes diagnoses. There are the teenage years in which my Grandad, who lived with us, lost his sight and one leg through diabetic complications. On top of this, the bigger part of my depressions may itself simply be the exhaustion of 35 years of diabetes – trying to do not just anything but everything a ‘normal’ person can do. (My poem about this – ‘Thick-skinned, Thin-fleshed’ can be found in London Grip here.

Diabetic burnout (or diabetic distress) is a term I only came across for the first time this past year. (Diabetes UK has a long definition of this on its website here. Reading up on diabetic burnout, suddenly, lots of my own symptoms and frustrations seemed to make sense.

I imagine people with many other different life-long medical conditions may also end up with something similar. Of course, the truth is that there are and always will be people much worse off than me. Also, as with any other kind of burnout, there’s no miracle cure – the main advice seems to be to do less, which is kind of at cross-purposes to the frustration at not being able to do everything a normal person or as easily as a normal person.

But Diabetes UK describe such burnout as ‘a natural response’ and this has helped me both to be kinder to myself and to give myself more credit for the anythings that I do achieve despite added difficulties. Although I personally don’t have a faith as such any more, it has also brought home to me just what an amazing creation the human body is when it works properly and does all this automatically/naturally/near-perfectly!

As the number of people with diabetes rises, hopefully, this type of burnout is also an area that will get more medical research funding, understanding and improved treatments. Meantime, I’ll continue my own experiential assessments of what works best for me as an individual – writing up and sharing what and where I can anything that might be useful.

Every individual’s life – diabetic or otherwise – is different. This is pretty much the first time I’ve ever written about my diabetes. Recently, I also had a piece commissioned by the Wellcome Collection where, for the first time, I’ve written directly and publicly about my experience of depression. This piece on depression, repetitive Transcranial Magnetic Stimulation and inspiration can be found in my Wellcome Collection article here.

Although, diabetic burnout and depression are two different things, if anyone thinks they may be suffering from either, please do talk to someone about it and get medical advice. The symptoms for both are not dissimilar, and it’s possible not only to have both but that they may be closely interlinked.

In my article for the Wellcome Collection, I quote from a Gram Joel Davies’ poem ‘Damned’ in which he likens depression to a certain type of hydro-generated electricity, where it takes more force to restart the machine than it creates in its brief high output. For me, this is very much like diabetic burnout too – days where the effort needed to manage and live with the diabetes seems to greatly outweigh the enjoyment found in that day.

On days like that, I’ve learned to try to remember both the small things that give pleasure – music, poetry, walking, exercise, sun on my face, birdsong in the garden, my boys’ smiles…and also to try to live for the next day, as yet still unwritten.

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When I’m able to start each morning afresh rather than assuming a bleak continuation of the same, I’m both open to possibilities and whatever new things it brings. Yes, the diabetes, and depression, may be there beside me, but on good days we can work with each other rather than setting ourselves at odds. In fact, on very very good bad days, you may even hear me whisper, “I’ve nothing I have to prove, no need to do anything but be.” And, yeah, it’s quiet, but slowly, slowly, that voice IS getting louder!

PS Obviously I was diagnosed a long time ago – I’m sure diagnosis and advice may be very different now!

PPS I’ve never really written about this before for a whole raft of reasons – from denial through to knowing there are plenty worse off than me and preferring to grit my teeth rather than run any risk of giving in to self-pity. But I also worry that people don’t know the full reasons when sometimes I’m not able to do things. Also, a big thing that concerns me more and more is how society – those in full health as well as those with hidden conditions, or disabilities – is going to cope in the future as people are expected to give more and more time and energy, with even healthy people often now finding themselves exhausted or overwhelmed?

PPPS Just to acknowledge my thanks and gratitude to the many individuals and organisations that have helped me over the years. (A particular recent shout-out and big thanks to Rob and the Rivers team at Droitwich Leisure Centre for helping to find quick and practical solutions/alternatives when unexpected hitches and glitches cause problems with my planned exercise. It really does make such a difference!)

PPPPS Also, for those interested in creativity, poetry and disability, I’d really recommend ‘Stairs and Whispers. I have no personal link or involvement with this Nine Arches Press anthology but have found the pieces inside, moving, thought-provoking, motivational, eye-catching, innovative…great reading! (In fact, it’s probably this book, along with my Wellcome Collection commission and memoir longlisting in this year’s New Welsh Awards, that has helped me finally feel brave enough, and have the confidence, to start talking about this.)

PPPPPS Yes, disappointment and driven are other ‘d’ factors that have come into play many times along the way – but so also has durability!

PPPDDDS These are just my own personal experiences. Please do use the comments box if you want to share your own thoughts, feelings or experiences of dealing with similar conditions or difficulties.