Everything that you've come to expect

April 1st 2022 marks exactly half of my life lived in the company of type 1 diabetes. From now on, every day means more and more of my life has been given over to accomodating this condition than I've been free from it.  I suppose April Fool's Day is a pretty on-brand day for this particular milestone.

A look back at my blog timeline reminds me how woefully out of practice I am at this... whatever 'this' is.  I considered just letting the day pass by - it is just another day when all's said and done.  But there's been a lot of days that have raced past me lately and this seemed as good a day as any to reflect back on 20-and-a-bit years of a chronic condition.

Having type 1 diabetes is relentless.  It is 24/7 decision-making about keeping yourself alive.  There is no other condition that springs to mind where you have to actively assume the complicated biological role of one of your internal organs all the time and are made to live with the consequences of how well you can masquerade as that organ.  It also completely robs me of sleep.  I recently had between 5 and 6 hours of continuous sleep and realising how rare an achievement that is did not have me rushing to work out how many hours I've lost over the years. 

Of course, I also have another full-time job in diabetes and that itself can be a little bit of a double-edged sword.  The stand-out benefit is that everyone you work with just gets it - there's no having to qualify why you've got your camera off in a meeting while you treat a hypo. The effect of living with diabetes is front and centre all the time.

But of course, it's front and centre all the time.  Distracting yourself from life with diabetes with some work, is just... more diabetes.  Particularly as I start to do more that looks at access to peer support, tackling stigma and helping to build more communities for people living with diabetes.  It feels a little claustrophobic at times, and I think it gives added meaning to what a decent work/life balance really is.  

So, reflection.  I told part of my diagnosis story in a meeting a few weeks ago and it struck me how infrequently I talk about my own experiences, but also how much has changed for me in the last 20 years.

I'm not going to try and rehash too many of my previous posts - I talked a bit about my diagnosis in this post marking 5000 (ish) days of diabetes back in 2016 - but reliving it in that meeting made me feel an emotional vulnerability I don't even really remember experiencing at the time and that really shook me.  I've probably talked about the Kubler-Ross grief curve before, but it's such an accurate way of illustrating the stages I've been through.

I've also talked before about some of my lowest points with diabetes in this post about mental strength from 2013.  Looking back on that now, I feel like I've learned so much more about my own mental health and wellbeing.  I'm certainly more aware of the things that trigger either the diabetes-related stress, or my general anxiety.  I'm not always better at managing them, but I maintain that awareness is half the battle there.

Tech has come a long way in 20 years too. Gone are the days of clunky pens, mixed insulin and 20 second waits for finger-prick results. An insulin pump and a Dexcom continuous glucose monitor are my current weapons of choice and they undoubtedly make things smoother for me.  But ending up in a codependent relationship with my phone to keep an eye on my glucose levels is definitely just another exhausting thing you never expect to happen to you. 

I feel like I've really felt the weight of living with diabetes over the last couple of years.  Reading (and working with) the stats on diabetes and COVID was sobering.  Being reminded of that increased risk still isn't easy, and having had a lot fewer options to feel like I could physically escape during lockdowns 1, 2 and 3 was tough - I've felt that claustrophobia a lot more recently.  

The start to 2022 has felt relentless in a lot of ways and I think that makes it harder to feel like taking a load of conscious and intentional decisions has some pretty finite boundaries.  Yes, I'm keeping myself alive, but extra decisions on food, lifestyle and generally trying to be healthier seem impossibly out of reach.  It's hard to maintain the motivation to do 'the right thing' even some of the time when you're taking a couple of hundred extra decisions every day.  It's a stark reminder that it's relentless, and you need a huge amount of resilience to pick yourself up and keep going.

Aviation by The Last Shadow Puppets

But go we must, and into the future where tomorrow where the days with diabetes (all 7461 and counting) are finally more than the days without (7460).  Contrary to most of my life (where I'm a cynical nervous wreck 99% of the time...), I have some genuine hope and optimism when it comes to diabetes.  I have a real belief in some kind of cure, and I can barely keep up with the evolution in diabetes tech as it is which can only make living with diabetes easier.

It is hard living with this condition.  It is astronomically hard.  Nobody would choose this for themselves - a condition where one-fifth of one drop of insulin can be the difference between too much or too little.  A condition that is on top of you every single day.  But I try and remind myself that it's also a condition that's taught me so much about myself.  I've learned so much about how much I can do when I have to.  I've learned how to be kind to myself (well - sometimes), how to be resilient, compassionate and empathetic and so much more.

I definitely wish I hadn't had to carry this with me for 20 years.  And I can't say I'm running with open arms towards the next 20 years either.  But the experience of being his person with diabetes has given me so much more than I thought it ever could, and that's the thing I'll hold onto more than anything else.

(Blog title is a little throwback for when all my blogs were song lyrics because I was am that cringy.  But I guess it's also a reminder that diabetes isn't everything you've come to expect - it's a lot more than that)

My Own Worst Enemy

It's weeks fourteen to sixteen but I've abandoned all that now...

I was pretty surprised to find I'd not written a blog with this title before given how obvious a statement it is.  Better late than never I guess...

 I actually started writing this a week ago and ended up with no time and no mental energy to give to it and so it sat as an ignored tab on my browser until now.  Whilst it hasn't nagged at me, I've been glancing up from work and seeing it, not unfinished as much as not at all started and I think it's pushed me towards something to say.

I think a large part of my neuroses/anxiety/idiocy (delete as you see appropriate) comes from this inability to stop a half-thought from getting in my head and then being unable to stop myself following it through to some horrifically sad or depressing ending.

Whilst I don't like it, I'm prepared to make peace with the idea that this will happen if I'm consciously dwelling on something that I know is going to get me down.  But where I really struggle is when it ends up in my head totally uninvited and I go from minding my own business to the depths of despair in the blink of an eye.

Going from 0-100 really quick

I don't think these are 'intrusive thoughts', though there's maybe some overlap with that definition.  And I'm loathe to start Dr Googling myself into oblivion and giving myself more labels than I need - I've got enough going on as it is.

But there is something there that I genuinely find difficult about my mind getting ahead of me and not being in total control of it.  It feels decidedly unfair that a line in a song, a reference to a place on TV or even just a random word I overhear sends me spiraling and I just cannot control it.

Obviously I've learned how to manage it when I end up at Despair's Door and I have successful and unsuccessful days with that, but it seems like there should be more to head that off and stop it for getting to that point.  I haven't found it yet.

So I started thinking about why all this happens - there must be something that subconsciously pushes those thoughts around.  And as most things in life that hold us back are either fear or admin, and this isn't admin.. well that leaves fear.

So what am I scared of?  Apart from confined spaces, spiders and large dogs?

Help me

Definitely being alone.  If this blog has highlighted anything over the last million weeks, it's that being left alone with my thoughts for any period of time is Not A Good Thing.  I think there's also something about wanting to be, or to feel noticed, and that was a surprisingly difficult revelation this week.

We all have people we love and care about and those relationships shift over time.  I think my realisation was that there's a fear that I won't be noticed the way I notice others.  Or I won't be wanted, or cared about the way I do with others.  

Guess which one is the default?

And so of course, a lot of people go straight for the rainbow, while I'm already halfway down the right-hand fork in the river, futilely paddling against the current.  At CBT we talked a lot about how valuable inter-personal relationships are and how the 'intimacy' (and by that I mean closeness, vulnerability, honesty etc here) is important for us.

I guess the fear then comes from knowing that and then thinking that what you have or perceive isn't reciprocated or valued in the same way.  Or that you'll do so much to validate it that you'll ultimately doom it to failure.

It's almost certainly unfounded.  But that's really hard to reconcile.  Really really hard.  To the point where a crippling amount of time can end up being given over to the idea that I've irretrievably ruined a friendship or mortally pissed someone off who's realised that I'm not worth their time at all.

So it stupidly feels like this

And here's one unhelpful solution

And of course nobody likes to feel like this, least of all me.  And that's why it all feels so stupidly unjust that I can't prevent it from happening.  It's easy to withdraw a lot and keep from taking the risk in the first place, but that's no real way to live your life is it?

I guess lockdown has helped me gradually figure some of this out over the last few months.  But really being able to banish it feels a long way off.

I hope everything's OK between us.  Sorry if not....

Until next time.  Stay safe x

Week Thirteen - Perception

Another week, another post where the blank page has been open for 24 hours and half an idea is floating around in my head as I try to pin it down.

I think it vaguely ties in with what I said a couple of weeks ago about how it's sometimes hard to judge where you are in a relationship (short-hand for an interaction with someone else - not exclusively 'romantic') and how it can impact on self-esteem despite best efforts.

As most things often do, it starts with music.  Music is brilliant obviously - having that ability to conjure up a person, place or moment in time based on a few notes played in a certain order is something special.  Part of the problem of course is that it works both ways - for every moment you want to remember, there's usually something you're trying to forget (and obviously they're always the songs that stick in your head).  To steal from Jay-Z's Blueprint² album title - it's a gift and a curse.

This starts with a track from The Streets' 2008 album 'Everything Is Borrowed' - namely "I Love You More (Than You Like Me)"

'Perfect Sound Whatever' by James Acaster is a great read about music and mental health

Of course the thing with music that makes it so brilliant is that the interpretation becomes personal to us.  I can't ever understand what prompted Mike Skinner to write that song but I know that those 10 words - I think I love you more than you like me - have almost become a kind of shorthand for my perception of many of my relationships.

That's not to say it's actually true by any means of course, but that perception is sometimes difficult to disentangle yourself from.  I'd been trying to think about why that is and I think it's down to certainty - or more specifically, a lack of it.

Most of the time I'm fairly clear about what I'm thinking, even if actually articulating it is somewhat difficult (*cough* case in point *cough*) but knowing what someone else is thinking or feeling is a lot less clear and is often where our old friends Worry and Anxiety pop round uninvited and put their feet up on the sofa.

Objectively there's nothing to worry about of course - those relationships you've had for years have stood for that long because they're built on solid foundations.  Nothing to worry about right?

I love this one

"What if they didn't understand what I meant when....?"

"What if I upset them when...?"

"What if they're mad because...?"

"What if they don't want to be friends anymore...?"

I had my eyes opened at StressControl last year when I found out that not everybody thinks these things and worries about them like I do.  If you're one of those people, then kudos to you - but it partly felt like my reality was being torn down and rebuilt.  Again, objectively of course people don't all think like that because it makes very little logical sense.  But it's hard to free yourself from that when it's been your perception for so long.

Under the old regime there were a few tried and tested options when those questions started floating around:

1. Seek any kind of constant reassurance (explicitly or implicitly) that the last thing I'd said hadn't been misinterpreted or that you'd not upset the status quo
2. Qualify what (I thought) I'd done wrong in a painstaking level of detail that would make War & Peace look like a short story
3. Assume I'm burdensome and a distraction that people would happily do without (not in that way - chill)
4. Shut down - don't make the effort because it can't or won't be reciprocated in the way I expect - better to not bother than show vulnerability

Point number 3

Point number 4

Sorry - a lot of relevant memes this week...

And so, via a slightly circuitous route, we come back to Mike Skinner and the woes he and I share - "I think I love you more than you like me".  The last couple of points on that list above are the kinds of things I associate that line with - being at the extreme of one feeling while perceiving that everyone else is at the far end of another.

That perception genuinely feels hard to get over sometimes, though I've learned that often it's the arbitrary expectations that come with the perception that compound those difficulties.  Relationships can't be quantified or measured - they're things we know, feel and trust in.  

Worry and anxiety can make us question those things we know to be true, and have faith in and so, like with most things, it's the same few tricks that help us through.  What would we tell a friend feeling that way?  What is the likelihood that the thing we're obsessing over is actually happening?  How do we make mental space to be able to evaluate what we're thinking and experiencing in a rational way?   If in doubt, play the greatest hits right?

I envy the people that have that in-built way of just knowing this stuff is all OK without it being a large number of conscious thoughts.  Maybe you're all sociopaths or something?   Sorry - what I meant by that was..... please don't be mad at me.... are you upset....? Etc etc forever and ever...

(Oh - in diabetes news, I've had four consecutive days with bloods all under 10mmol so I guess I'm cured or something... - come for the sadness, stay for the diabetes)

Stay safe. Love you (more than you like me) x

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

Weeks Ten and Eleven - (Im)balance

Predictably I missed last Monday as it was a Bank Holiday and I had a week off.  I missed posting yesterday because I wasn't sure I had the right words to be able to articulate what I wanted to say.   I'm still not sure I do but let's see where this goes eh?

Since I last posed, I've edged a year closer to 40.  Facebook memories see to suggest I'm forever bound to say "older but not wiser - haha" and that absolutely feels true in one sense, but maybe less so in another.

Over the last year, I think StressControl and CBT have taught me some sense of self-awareness that I wasn't really conscious of before.  Whether I'm actually wise enough to be conscious of it in the moments I need to is a wholly different matter.

Absolutely I am Dwight

One of the main themes at StressControl was about how we often judge ourselves more harshly than we would others and are our own worst critic.  At CBT we talked about how powerful meaningful relationships are and how they can make a really positive difference to how we feel.  I guess that latter part at least is familiar to many people right now given that lockdown has many of us distanced from those people we rely on.

I think where I've often felt like I've struggled is in finding those relationships.  I've got a catalogue of reasons why that's the case - you can leaf through that at your own leisure - but I think I large part of it is down to not being able to understand where the right balance (or equilibrium - get some mileage out of that economics degree) is.

But this is where the words dry up a little.  I'm not sure how to get that final point down:

    a) without coming across with an inflated sense of self-importance 

    b) succinctly or 

    c) in any kind of way which actually gets to the heart of what I'm trying to say

I guess the point is that I often feel like I mis-judge what those friend/relationships should look like or what the dynamic is.  Pushing way too hard when there's no need, cutting myself off entirely because it's easier than working through what the middle ground should look like or just driving myself crazy with self-doubt, worry and anxiety.  Where this was bad before, lockdown has made it a lot worse.

Imbalance

I've thought about referring myself back to IAPT but I'm still not sure I'm clear on the thing that would be most helpful so I'm keeping that in my back pocket for now.  I've thought about seeing a GP though that's kind of a nuclear option I'd rather not take.  And there's no way I'm going near a surgery right now in any case.

I think I've got most of the tools and knowledge to be able to make this better (there's the wisdom) but it's still difficult to take that mental step back and use them objectively.  That bit is really hard, and the nagging self-doubt that asks whether I am good enough makes it tougher.

It's ridiculous when you see it like this - but seeing it like this is the tough part

As this blog becomes progressively about mental health and less about diabetes, I probably need to grab food so I don't have a hypo in a meeting later on.

Stay safe x

(And don't worry, I've ordered Lego)

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

Week Eight - One Nice Thing

At least I think it's week eight... I know lockdown officially began on March 23rd but I'd definitely been working at home for about a week and a half before that.

Some of the days do have that sense about them and at times it definitely feels like they're merging into an amorphous blob of stuff.  Some days fly by and then others seem to draw themselves out forever.  A three-day weekend definitely helped me reset to a large degree but there's something about this situation that's exhausting.  A couple of days with no alarm and no real need to do very much or even get beyond the garden feel like they've wiped me out.  I'm fairly sure it's down to the mental effort we're expending trying to keep on an even keel.

Most of this last week's diabetes problems have been about keeping out of the red and in the black which I will admit has felt a little relentless at times.  After some extensive research over the last few days, I think I'm close to publishing a paper confirming that bourbon biscuits have little to no effect on blood sugar whatsoever.  I am also implying that they therefore have no calories either...  It'll pass as it always does, but feeling like you're constantly scouring the kitchen cupboards for something to eat can be another layer on top of everything else you're trying to think about.

A couple of things sprang to mind this week.  Firstly that it's felt harder at times to maintain that 'deep breath, think before you speak' approach to communicating, whether that's at home or at work.  I think the current climate (sick of writing that) and how far we are into this way of living gets to us all at some point, and it's almost inevitable that some part of us will snap, however briefly.  It's also easy to have our head down thinking about our own situation, when the reality of it is that everyone has their own version of that too.  I'd like to think I've been generally conscious of that - what feels like 40 hours of video calls a week means you can't help but understand people's circumstances, but it's no bad thing to be more explicit about it in my thinking.

The other thing is really to think of One Nice Thing about the day and try and hold on to it.  After StressControl I tried to write three positive things down from each day before I went to bed as a reminder that the stress and anxiety was always balanced out by other things.  I've lowered the bar a fair bit for the time being, but hoping it continues to make some small difference.

After a couple of glorious days, the weather turned yesterday so we had some ultimate comfort food in meat and potato pie

This was the sunset on Thursday after my dad got taken to hospital (and thankfully discharged with antibiotics about 8 hours later)

Managed to order some Lego that's usually only available from one shop at Legoland in Denmark - they've made it available online due to COVID

It's still a massive set of ups and downs and it's the same for everyone I talk to as well.  In some sense, it's hard to take comfort from the fact that everyone is on this relentless roller coaster, but at the same time it's kinda reassuring that everyone can almost certainly relate to how you're feeling at any given moment, even if it remains largely unsaid.

Safe safe alert safe x