As part of World Diabetes Day on November 14th 2016, I posted regular Facebook updates about what it's like to have Type 1 diabetes. Those posts are presented here
Tuesday, 15 November 2016
Sunday, 6 November 2016
The current JDRF campaign for #T1DLooksLikeMe got me thinking about diabetes awareness. I suppose to some extent there's a lot of awareness of the concept of diabetes at least. The last few weeks alone have seen numerous TV programmes attempting to highlight some of the long term complications of diabetes and talking about what can be done to reduce the risk of developing Type 2 diabetes in the future.
The thing about living with a chronic illness like Type 1 diabetes is that it's all the things people don't see that really define what your life is like. To borrow from Public Enemy, those who know, know; those that don't have no idea.
This is for those who don't know (yet).
|Fourteen years of Type 1 diabetes in just four numbers|
I've had Type 1 diabetes for just over 14 years. I've had good days and I've had great days. I've had bad days, and I've had terrible days, and I've had everything in between too.
As the graphic above says, I've had to inject myself with insulin almost 17,000 times (plus around 450 cannula changes since starting with an insulin pump in early 2013). That's something that never gets any easier for me. There's still always a sharp intake of breath and a second of silence before the needle goes in. I still remember being told on the day I got diagnosed that I had to inject myself in the stomach multiple times a day otherwise I'd die.
I've had to test my blood glucose levels almost 31,000 times in the past 14 years (or around 6 times a day, every day). Some of my darkest times I've had living with this were when I abandoned testing pretty much entirely for around 18 months about five years post diagnosis. I was lost and unable to cope with the idea of living with diabetes, so I tried to ignore it. I found out the hard way that doesn't work.
Tuesday, 6 September 2016
Monday, 11 July 2016
Saturday, 4 June 2016
"Let's get back on track". That was the sombre advice from my Garmin app this morning after yet another appalling attempt at running. "Let's get back on track"...
The truth is, I feel pretty broken at the moment. For once in my life, the only thing that seems to be taking relatively little effort on my part is having diabetes. That's a strange thing to write really - the thing that's a 24/7 fixture in my life is the easy bit.
As usual, there's a lot going on (which is of my own doing), but it all seems to have fallen at once so I'm stumbling from one thing to the next without much time to think. That's not always a bad thing I guess - the pressure of working on a few, quite different things is interesting and definitely keeps me on my toes.
But it does mean a few things are getting squeezed out (I've not found a way to add a few extra hours in the day yet). Worryingly, it seems to be any kind of exercise which I'm sacrificing at the moment. Given my pathetic metabolism, that means I've invariably put on weight, and I seem to be obsessing about it rather a lot.
I look back at where I was 12 months ago, and I was running 100 miles a month, at my lowest weight for about a decade and feeling invincible. Now I'm struggling to run 4 miles (partly due to a stubborn knee injury I sustained mid-April), I'm about 12lbs heavier than I have been in ages and quite frankly it's making me miserable.
I seem to have developed some kind of weight obsessed insomnia as well and I'm finding it tricky to switch off, which is a little frustrating given how tired I actually feel at the moment. There's a lot running through my mind every night but I seem to go back to how frustrated I am that I can't run, and the effect it's having on me.
I've been travelling a lot lately for various reasons (social and otherwise) - London and back three times in six weeks (with another three in three weeks at the start of July)...
To be honest, I don't think there's much of a point to this blog, other than to write all this stuff down so it's one less thing in my head.
I should be able to shift some of this unwelcome weight which will make me feel a lot happier. Body image problems can't be over-stated in my opinion and it's something I wrestle with a lot more than I let on. I know my knee will come back to being somewhere partly sensible so I should be able to get out and find the enjoyment I got from running last year. And hopefully I'll get some sleep too.
At least diabetes isn't causing me too many problems. For once.
Until next time.
Monday, 4 April 2016
Mondays pretty much start the same way for me every week… The alarm goes off around 5:45am, and, silently cursing, I take stock of how I’m feeling… light-headed (hypo), a bit stiff (hyper) or just tired (‘in range’)? I drag myself to the bathroom and stand on the bathroom scales. And I sigh.
Diabetes is an enormous daily battle that I won’t rehash for the millionth time here and now. I’ve lived with diabetes for long enough now to be able make most days ‘better’ days, though I’m not impervious to the bad days by any means.
I’ve started writing this blog post a few times and I’ve held back – I’m scared of straying into unchartered waters and accidentally throwing opinions around on things I (and many other people) don’t really understand. But here we go.
I can tolerate Type 1 diabetes most of the time, but where I struggle every day is with my weight.
About 18 months ago I devoted a huge amount of energy and effort to tackling my weight and lost 3 (and a bit) stone to get to a position I was vaguely happy with. I cut my diet back to about 1200 (net) calories a day, ran 20-30 miles a week as well as doing four or five mornings a week on my exercise bike. It was exhausting and took over my life, but I did it. But that’s when it started to get difficult…
I’ve always found it (kind of) manageable to lose weight, but I’ve equally found it far too easy to put it back on again within a few months. This time I feel like something is a little different. I’ve had fluctuations obviously, but I’ve pretty much avoided piling the pounds back on. But it’s much harder work than it was to get to this position in the first place.
What I’ve discovered is that actually, my body only really needs around 120-1300 (net) calories a day anyway and regularly eating above that means I’ll put weight on. My diabetes consultant refers to it as being a ‘thrifty phenotype’ – basically if there’s an apocalypse, you’ll probably starve before me (sorry), but basically I don’t need a lot of food to keep ticking over.
This creates a number of problems for me. The first, and most obvious one is that I LOVE food so I feel like I’m constantly faced with the choice of skipping one meal in favour of another. Or I have the chance to go out and run 6 miles to be able have something. Whilst I both love and loathe running (it feels like life support to some degree), my life doesn’t allow the same number of opportunities a week to pound the pavement, so more and more I feel like I’m choosing breakfast plus one other meal.
The second problem is food guilt. I’m sadly not immune to the temptations of an occasional takeaway. Having skimped on calories for the rest of the day (and/or been for a run), I’ve been known to dabble in a chicken chow mein from time to time. The thing is that pretty much as soon as I’ve eaten it, I have an overwhelming feeling of guilt about what it’ll do for my weight and I’ll compensate for days afterwards too. I have genuine regret about something I’ve treated myself to, and I’m pretty sure it’s not healthy (the guilt that is, the takeaway definitely isn’t…). If I’m eating out at restaurants, I’ll pick a salad more often than not because it’s not a guilt-inducing. Having a hypo is a nightmare when I feel like this – I’m eating calories that I don’t want to correct it and I resent them for it.
The last problem is how it makes me feel. I’m writing this after stepping on the scales to find out I’ve put an improbable 4lbs on this week, and it’s pretty much all I’ve thought about all day. I knew last week I would have put a few on (about 3lbs) as I’d been away for Easter and it’s a lot harder to stick to a calorie goal while you’re away. But being back home hasn’t improved things. I know I used to be a lot heavier, but I look in the mirror and I’m fundamentally unhappy with how I feel. I hate the nagging from my inner voice before I eat anything…
I’m used to seeing food as numbers – it’s impossible not to when you’re doing mental arithmetic before you eat anything. But I see calories everywhere too, and calories scare me a lot. Having diabetes puts me at a greater risk of stroke, heart disease and cardio vascular disease, than people who aren’t ‘in the club’. I’m about twice as likely to suffer from one or more of those as a result of my diabetes, and being overweight doesn’t help my chances much either.
I’ve noticed that gradually, I’ve stopped cooking new things almost entirely because I know I can rely on the knowledge that what I eat most days, falls into safe zone and I don’t want to stray from that safety. I know when I do stray, I’ll have put weight on. And when I put weight on I’ll be miserable until I’ve lost it all. I feel like I’m resigned to logging everything I eat for the rest of my life to be able to stay at a healthy(ish) weight, and the though of that exhausts me.
I wrote recently about how a day off from having diabetes would be nice. Having a day off from this food guilt and unassailable obsession with my weight would be nice too.
Thursday, 31 March 2016
When Neil and Athinyaa spoke at DPC16 at the start of the month, everyone listened - it was a heartfelt, emotive talk about providing care to people, not patients. This blog they've written continues that theme, and it's incredible. Enjoy.