Week Twelve - Paths not taken (or things I wish I'd known)

I drew a blank yesterday when I sat down to write - there was something there but I couldn't quite see it.  It vaguely came to me as I stared at the ceiling at something-past-midnight so let's go.

I should preface this by saying that it's Diabetes Week (8th to 14th June 2020) and so while this won't entirely depart from the mental well-being stuff I've talked about for the last three months, I was reflecting on my experiences specifically with diabetes more than usual last night.

I was trying to remember how old I was when I got got diagnosed with type 1 diabetes.  I always start by telling myself it was the October of my graduate year at university as I remember it being a fairly isolating experience in many ways.  But that's not true.  The date I mean - it was isolating in a lot of ways.  I remember trying to explain it all to a couple of my course-mates (and fellow 5-a-side colleagues) and how lower GI stuff like Shreddies would help.  "Shreddies - keeps diabetes locked up til lunch" still makes me smile.  But that must have been the start of my third year which was October 2001.

And that means next year will be 20 years with type 1 - half my life.  After that point it'll be something that'll be the bigger part of my experiences, not the smaller part.  Those 20 years without diabetes would always be a static thing, but soon that block of time will become a decreasing minority.

Memes for all occasions

Looking back at the start of this adventure I was woefully ill-placed to deal with it - not that there's ever really a good time to get diagnosed with a chronic condition but still...  A few ridiculous things really stand out from those first few months.  I remember being told to make sure I'd eaten before playing football at university so I'd cram all sorts in before a match and wonder why I was sky high afterwards.  I started off on mixed insulin so there wasn't really a concept (that I'd be told about at least) of correction doses so I just lived with it.

When I switched to basal/bolus a year or so later, that felt like a little more freedom, but I was still walking around with way too little knowledge in my head.  That's diabetes knowledge for those giggling at the back...  While I finally had the tools to finesse my own self-management, I didn't have the understanding.  One unit for 10g of carbs seemed to work, but I'm sure it took years for me to ask what would happen if I did insulin without food and finally understand if my levels were high I could just do insulin to fix it.  Seems so obvious now, but it was alien to me for so long.

And (as I gratuitously wield my crowbar) it got me thinking about other paths I'd not taken because of things I didn't know or was scared of finding out.  Opportunities I didn't take, places I didn't go, girls I didn't ask out, invitations I turned down... all because I was unsure of myself or scared.

I think what it made me realise (at nearly 1am...) is that the stress and anxiety that I've really only consciously started to be aware of has actually been around for a really long time.  Looking back, some "coping" mechanisms have been fairly common over the years (however cringe-worthy they were and how hard they are to let go of), some of the anxiety symptoms probably date back over 25 years.

So I think there are a lot of things I wish I'd known.  All the stuff I've accumulated over nearly 20 (TWENTY) years of living with diabetes would obviously have been hugely beneficial way back in 2001.  But I've been struck again by how much the mental aspects have been so important. Not just in terms of missing out on lived experience, self-confidence or self-esteem, but that overlap with managing the physical bits.

I had a conversation with someone recently about how easy it feels now to instinctively know what my insulin doses should be, and that the textbook answers don't reflect what I intrinsically know to be true about my own care.  But whilst that trial and error, and learning from those mistakes has been tough at times, it feels easy in comparison to understanding and managing things that aren't tangible or don't manifest themselves as physical problems to solve.

I don't know... it makes sense to me, and if you can relate too, that's good.  Happy diabetes week.  Until next time

Stay safe x

Week Nine - Any End In Sight?

I've definitely been trying to focus on One Nice Thing over the last week and it's kinda helped to some degree.  I had a few photos printed up as part of an early... *ahem*'th birthday present and they looked exactly as I'd hoped.  It'll be nice to have those memories on show if I get round to hanging them within the next five years.

Dubrovnik from the city walls

A view of Ambleside in the Lake District

I'm also squarely looking forward to a week off at the end of this week and spending some time not thinking about email and Zoom.  If the weather holds, we've cracked it.

I also managed to have a diabetes clinic appointment over the phone which was a lot less stressful than trying to find somewhere to park at the hospital and be staring at the walls of the waiting room forever.  Nothing too major to report - still work to do to stave off more hypoglycaemia episodes but as I've said in one of these blogs before - I feel like I'm taking the rough with the smooth when it comes to diabetes right now.

My consultant talked about pump upgrades again and is desperate for me to switch to the Tandem t slim pump and basically set myself up with a closed loop system of sorts that would probably reduce the number of lows.  I'd have to give up my funded Libre and then totally self-fund a Dexcom G6 (for about £2500 a year).  I'm going to take some time to think about it properly - it's a lot of money, but potentially a big difference in quality of life.  If you're using it all together and have any insight, I'd love to hear about it.

This flip side of this week's coin is just the relentlessness of everything.  Obviously this situation is tough for everyone in different ways.  I know I've felt it mentally - some days more than others and some weeks more than others as well.

A calendar image that lined up to today's date (if not day) was a happy coincidence

Having something to aim for makes a big difference and I think that's what I certainly feel is lacking.  Most of the time I don't feel too put out by the restrictions - in fact I think it's lead to some positive changes overall that I really want to hold on to.

But there are times when being locked in that cycle of shower, eight hours of video calls, cook dinner, load/unload the dishwasher, TV, bed feels a bit like Dr Strange battling Dormammu in the time loop (yes we've watched all the MCU films).

There are definitely days where I question the futility of that - if all I'm working towards is more of the same, then is there any point in that effort?  Not in a harmful way I should probably add.  I've always tried to put as much of myself as possible into what I do and I don't feel like I want to pull back from that necessarily, but it's taking a toll right now.

I think the trick here again is to focus on the short term 'ends' and the compress the horizon for everything.  It's all an adjustment for everyone and knowing that I don't always handle the internal aspects of things like this particularly well, I should be more conscious of how I approach it.

Bank holiday next Monday so will inevitably forget to post.

Stay safe x

Weeks Four and Five - Get Back on Track

I skipped last week.  Partly because it was Easter Monday and partly because it was the first lie in past 9am I'd had in years and I let the day get away from me a little.

I think it's fair to say my general wellbeing has deteriorated over the last couple of weeks - I'd forgotten how easy it is to let everything get out of control if you don't keep at least one eye on it.  At times like these it feels much harder to be conscious of it because it isn't one single thing - it's everything that you need to be mindful of.  As my friend Taylor would say, it's kinda like death by a thousand cuts.

So work has definitely felt tough - we've got a big opportunity to make significant change right now in the wake of coronavirus and that's genuinely exciting.  It's also genuinely exhausting and the lack of variety that a constant stream of teleconferences presents is really challenging.

I also find it hard to learn from my past experiences... just because 18 meetings in two days is possible on paper, doesn't mean it's a good idea.  One of my learnings for all of life is to feel OK saying 'no' to people.  It's definitely hard when you need to do things at pace, but I know I can't work at that level relentlessly so something will have to change.

Whilst diabetes and me haven't ever been best friends, the last couple of weeks have tested our relationship a little more than usual.  You'd think being at home would allow you to control for all those external factors like early starts and dashing for trains, but my levels have been on as much of a roller coaster as my mental health, and of course there's an intrinsic link between the two.

Being cooped up has definitely reached that point where I've felt a bit cabin feverish.  This is the bit I'm maybe most frustrated about because it felt inevitable that this would take it's toll and I feel like I've idly watched it creep up and then run right past me and now I'm playing catch up.

I'm sure I'm not alone in realising how much difference my weekly routine makes to my general positivity.  Catching up with friends at Hillsborough, bacon butty from the cafe once a week, seeing people at ballet while Violet dances.... even the freedom that walking round ASDA gave me feels hugely important right now and I'm starting to miss it a lot.

I've been out every day and that's definitely a highlight and I'll keep doing it even in the pouring rain.  I've got back into cooking and baking with Violet in a fairly big way (despite feeling a little ashamed that it's taken a Hello Fresh delivery to remind me how much I love cooking).  I've also found a new family friendly middle class hobby in rock painting.  I'm definitely not the most creative or artistic person on the planet (or in my family...) but it's calming so I'll persist with it.  The meditation and breathing exercises I've got make a big difference too.  If you're after an introduction to those, Headspace are offering some free resources at the moment.

Keeping up with this blog and writing stuff down for myself is helping too.  I think it's about working out what sensible support mechanisms I can put in place for myself and my own sanity while this is all going on.  And remembering that I find some bits harder than others.  I still haven't found a way to talk kindly to myself, even after StressControl and CBT.  I'm better at calming myself sometimes, but this is the hardest part for me by some stretch so it just means I'll have to keep working at it and celebrate the small victories.

If you made it this far I hope you're staying safe and staying well.  The pic above is definitely tongue in cheek, but remember it's a marathon, not a sprint.

Take care x

Week Three - Practice What You Preach

Like most people, Fridays were the day I looked forward to the most - you know, back in the day where this endlessness didn't exist.

I'd walk Violet round to school, jump in the car and head out for a coffee with my wife before logging on a little later than usual.  Hectic diaries meant that Friday mornings were usually the only chance we both had an hour or so of free time so we'd make the most of it.  I used to have very few meetings so could catch up on all my work and head into the weekend relatively relaxed and caught up.

Now every day has a pretty consistent feel about it, with the remnants of my old regular meetings being the only reminder about the old 'structure' that life used to have.

Instead of looking forward to Fridays, I honestly feel like I'm just trying to survive them.  The last couple of weeks it's felt like I've shut my laptop down at 5pm (if I'm lucky) and I'm broken.

My job means I need to be there for a pretty large group of people who are all going through the same things, but with different perspectives, challenges and fears.  Actually it's not that I need to be there, I want to be.  My team do a hell of a lot and I think feels as familial as it could be for 30 people spread right across the UK, and I want to support all those people who are absolutely my work family.

What I'm struggling with is the ability to follow the advice I give everyone else - certainly not to the same extent.

My wife asked me why, given I'm pretty well-practiced at worrying whether or not the sun will come up tomorrow, am I being pretty laid back about this whole end-of-the-world-global-pandemic situation?

Stress Control and CBT definitely helped to some degree.  I can only control the things I can control. I need to find the thing(s) that drive that worry and be objective about them.  I need to rationally see what's going on around me rather than live life through some anxiety-fuelled lens of madness (this one is still hard sometimes). 

But that's not always how I feel.  Friday afternoon usually has me at that point where my chest aches... not physically, but that feeling you* get when you feel like you've been tense for a week and have only just realised it.

*I say 'you' - could just be me...

I know it's not possible to stick to the same routine I had 8 weeks ago, and I've started making changes.  A 10 minute walk around the block when I can manage it is a big part of the day, as is sticking on some calming music or a 10 minute meditation on my phone.  It's hard to explain the difference some deep breathing can actually make.

What I need to get better at is remembering this is a long haul.  Cramming my diary with meeting after meeting might give the illusion of productivity or accomplishment, but I don't think the cost is always worth the payoff.  I'm getting better at skipping out on those things I think don't need me and gradually getting better at making time for myself - even just to get up from my desk and sit on the sofa in my favourite corner for a few minutes.

So I need to practice more of what I preach.  Always easier to be objective for other people and I need to give more of that to myself.

If you got this far - thanks.  Hope you're managing well too.

Stay safe x

Standing on the edge

"Come to the edge, he said. They said: We are afraid. Come to the edge, he said. They came. He pushed them and they flew." - Guillaume Apollinaire (1880-1918)


Today is a strange day for me.  It's the last full 24 hours that I'll be medicating my diabetes with multiple daily injections (MDI) for the foreseeable future.  Tomorrow afternoon I'll be switching to an insulin pump as part of a two year clinical study aimed at determining what is more effective at treating people with Type 1 diabetes.

I won't go into too much of the detail about the study here.  I'll be writing a blog for Diabetes UK about that later this week (and I'll post it here as well) so if you're curious, you can read that (or drop me a line on Twitter @Broomowl).

This blog is more focused on that greatest of intangible things - feelings.

I genuinely don't know how I feel about it to be honest.  Overall I'm pretty positive about it I think.  As I understand it, the pump will allow me greater control over my condition and allow me to alter my medication much more proactively around things like diet and exercise.  There's also some altruistic benefit I guess as it will help determine whether or not an insulin pump is truly beneficial for people with diabetes.  This should mean that, in the future, people being newly diagnosed with the condition will receive the best treatment possible.

If you've read a few of my blogs before, you're probably familiar with the concern I have that at some point, my daughter will also develop diabetes.  I think the odds are roughly around 1 in 7 so I suppose I'm partly doing this for her as well as me.

The other side of the coin is the fear and the doubt that accompany any lifestyle change.  For the most part, I control my condition pretty well.  I don't struggle to understand what to do or how to comprehend the science behind it all.  I struggle with self discipline.  I'll have some chocolate because I'm feeling a bit down, or I'll forget/not bother to test my blood as often as I should.  It's lazy and there's no excuse for it - I'm my own worst enemy.

But when all that's said and done, with the correct discipline, I can manage my condition pretty perfectly, which is something to be proud of.  But it's taken me a number of years to get to that level and from tomorrow I'll have to start from scratch.

Thinking about it rationally, the principles aren't going to change overnight and the science will remain the same.  I'll just have to learn a new way to practice it.  I don't think it can be quite as terrifying as it was nearly 12 years ago.  I'm also going to be part of a group of people all in the same boat, so I know I'm not alone.

My only other concern is how it will affect the day to day stuff I take for granted at the moment.  I haven't figured out how I'm going to sleep with the pump attached to me yet (though I suspect "not very well" would be a good answer for the first few nights).  I also don't want it to stop me playing games with my daughter because that's obviously a hugely important part of my life.

I think that overall this will be a good change for me once the learning period is over.  There's a chance I might take to this blog a little more frequently to 'think out loud' about it but as a mechanism for ordering my thoughts a little, the blog really helps.  I'm also lucky that I've got a group of close friends that I know I can rely on to help me when I need it.

Thanks for taking the time to read this.

Andy

Coping With Christmas

This blog was first posted on the DiabetesUK website on 13th December 2012


Whilst Roy Wood famously pined for it to be Christmas every day, I sadly don't.  That's not to say I'm some Dickensian miser who can't bear the sight of a bit of tinsel or the jingle of some bells (well maybe in October - I digress).  I geninely look forward to Christmas, but I know it'll play havoc with me.

I'm a creature of habit, a person of routine, someone who enjoys certainty as much as it can ever be found.  Christmas (and I suppose I'm talking about most of December really) destroys a lot of that and makes life a little more chaotic.

Whilst there are plus points like seeing family and friends, there are the downsides like over indulgence.  Last year I was into my London Marathon training and was incredibly measured with what I ate, but that's not really the norm.  I think it's totally natural to want to unwind and indulge during your Christmas holiday and being diabetic shouldn't stop me from doing that - it just means a little extra work on my part.

With all that in mind, I've come up with a few tips for surviving the festive period (note that I'm not offering any tips on dealing with your inlaws...)

• Don't worry.  It's easy to get sidetracked by the number on your blood glucose meter at the best of times and with mince pies and chocolates flying around, I think it's inevitable that at some stage, you'll get a higher reading than you'd normally expect.  That said...
• Test a bit more often.  If your house is anything like mine, not only will you be eating things that aren't the norm, your mealtimes will end up being different too.  If you normally test 4 times a day, sticking an extra one in should mean you don't stray too far off course.
• Don't deprive yourself.  A slice of Christmas cake or an extra mince pie probably won't be your downfall (unless the slice of cake is the size of a house brick) and there's nothing worse than feeling like a martyr while everyone around you is having a great time.
• Keep the packets.  I'm terrible for throwing away boxes with nutritional information on them.  It's usually convenient to check the back of a packet for the carb values per serving (*cough* per mince pie *cough*) and adjust my dose accordingly.  It's less convenient if I've stuck the box in the recycling bin along with all the wrapping paper so try sand save them if it'll help you.
• Take the help that's there.  As you may have caught on, I'll definitely be sneaking the odd bit of dessert over the next few weeks but I'll make sure I've got things like low fat custard or reduced sugar ice cream to go with them.  No-one else round the dinner table can tell the difference anyway.  I've convinced myself I had low-sugar cranberry sauce last year but an internet search has proved fruitless (sorry!)

I suppose the message is the same one that should really apply regardless - enjoy everything in moderation.  Of course it's a bit harder to do when you're diabetic, but all the tools are there to help you.  Being diabetic is just different, not worse.

I hope you all have a fantastic Christmas and a very happy 2013.  I'll be back in the new year to talk about my diabetes study and DAFNE (amongst a whole host of other things).

Merry Christmas!

Andy