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

Rainswept

The most intense training week I've probably ever had is finally behind me...and I actually feel pretty good about it.

If you remember from last week, I was planning on 2, 3, 4 and 5 mile runs this week, using the shorter ones to try and have some actual speed and the longer ones to translate that into some pace over more miles.

Family and charity commitments over the next week or so meant I actually had to pull one of Week 4's runs forward into this week so I had an additional 6 mile effort in there too, making it 20 miles for two consecutive weeks which is something to be pretty proud of!

To say I've done 5 runs in 7 days (something I've never attempted before) I feel pretty good and my times have reflected that.   My average pace across the last 20 miles is 9:26 minute miles compared with an average of 10:13 for the previous week.

I know for most people, they aren't anything amazing to write home about (and I look at others on Twitter who are training for the same race and they're a lot faster).  The one thing about marathon running is that for 99% of people entering you're only really racing yourself - it doesn't matter how everyone else does so I'm trying not to pay too much attention to other people and just focus on doing what I'm doing.

I talked last time about how conditions are something you need to bear in mind when running and managing your diabetes.  This week the weather has given me a fair few challenges, varying between warm sunshine and monsoon rain.  Fortunately I've managed to take most of that in my stride (pun unintended).

The most difficult run this week was the 6 miler this morning (Sunday).  Having been out four times already meant I was pretty tired but I'd had one of those nights with my diabetes that meant it was all the more difficult to motivate myself to get going.  I'd replaced my cannula just before bed as the adhesive had lost its usefulness but this is something you should generally avoid because if you put the new one in wrong and you don't get insulin properly, it can be pretty catastrophic and you're unlikely to know during the night.

For some reason I still don't understand, the new one only lasted about 20 minutes so I was still up at nearly midnight putting a third cannula in (and sticking it down with surgical tape to be certain).  To make sure I was going to be OK, I set an alarm for 1:30am to get up and check my blood glucose (which was fortunately OK).  I then had a hypo at 5:30am so I was up again to eat and raise my blood before I set off to run.  That's a fairly good (but thankfully rare) example of a diabetes rollercoaster - highs and lows and the physical strain of dealing with everything in between too.

Thankfully I managed to get round in a pretty decent time and made it home in the rain before it properly bucketed it down.

Next week is relatively easy, two runs and some non-impact/strength work. I'll be doing 5 miles tomorrow (Monday) and then 12 miles on Thursday after work.  That definitely won't be fun as I'm not a huge fan of doing my long runs midweek, but needs must this time.  The distances are going to start getting bigger pretty quickly now so the next 6 weeks are crucial now.

I'll finish, as always, with a mention of the fantastic work that Diabetes UK do and why I'm raising money for them.  Living with diabetes isn't an easy thing to do a lot of the time.  Having a self managed chronic illness  takes a lot out you and knowing there's someone there who can support you is an incredible help.  Diabetes UK offer that help and support to millions of people like me who need it and to say it makes actually living life easier is a huge understatement.  If you can spare anything to help me reach my £1,000 target for 2014, then please visit http:www.justgiving.com/broomhead - I'm incredibly grateful for your support.

Thanks

DAFNE

This blog first appeared on the Diabetes UK blog site on 6th February 2013



As part of the REPOSE trial I talked about last month, I recently attended a DAFNE course.  I'll be honest and say that a couple of weeks beforehand I was still pretty skeptical about attending.  Not so much because I didn't think I'd get any benefit from it, but more that I'd never been given any information about what DAFNE was beyond "it'll help with your carb counting" and couldn't understand how it was a five day course.

That said, after I'd had the pump on for a few days, I was really eager to get started and by the time the course started I honestly couldn't wait.   I didn't feel too apprehensive at the start, as I'd already met half the people on the course when we'd had our pump induction, and I knew that everyone there was in the same position as I was.

I thought the DAFNE course (Dose Adjusted For Normal Eating) itself was very well structured.  We followed a daily timetable with 4-5 sessions per day, building on regular daily topics such as insulin dose adjustment and carb counting/nutrition as well as discussing other topics such as alcohol and exercise.

For the afternoon session on the second day, we were invited to bring along a family member to give them the opportunity to see what the course entails, and to speak openly about their experiences of living with someone with diabetes.  I think that helped a lot as it allowed us to reflect on what those we love have to deal with, which I would guess is a point of view we don't often stop to consider.  I think that afternoon worked really well and having everyone participate in the exercises was great.

What I found surprising (and a tad embarrassing) was the amount of the history/biology about diabetes that I either didn't know or that I'd forgotten.  While I suppose it's all a matter of personal preference, I enjoyed the sessions that touched on that information as I felt like it provided a great base for all the other topics we were discussing.

There were, of course, some more difficult sessions, and the one we spent discussing the long term complications of diabetes could have been uncomfortable to talk about.   We spent the time in two teams, playing a game of which complications could be specifically diabetes related, how they were caused and what could be done to prevent them.  It lightened the mood and allowed us to learn at the same time.

I think as a group we all agreed that being in a safe, open and honest environment with people all in the same situation was one of the best things about the week.  As I may have mentioned previously, I've not actually met anyone with Type 1 diabetes before and so to be able to share experiences, tips and frustrations with a group was such a positive thing.  I was also relieved to find out I'm not the only one who sometimes forgets to change needles and lancets as often as I should!


As part of the course (and over the next two years as part of the trial) we are all recording our BG readings, carbohydrate portions and insulin doses on a daily basis.  We began and ended each day with a review of the numbers.  I think that really helped to build a great spirit in the group and allowed us to share advice with each other.  It was pretty nerve wracking presenting your numbers back to the group for the first time, but by Friday, it was an experience we'd all got into and were going to miss quite a lot.

Being in that environment gave everyone a lot of confidence to speak up and discuss their own situations without feeling judged or under pressure.  That similar feeling when sharing BG levels (some not always the numbers you'd hope for) was valuable in discussing our progress.

It would be remiss of me to talk about the course, the environment and the structure that allowed us all to benefit so much from the week without a mention for our DAFNE Educators.  We were lucky to have three Educators supporting our course all week, two diabetes specialist nurses and a dietician.  Their enthusiasm and encouragement kept us going for the week and I personally think they did so much to help foster the environment that allowed the course to work so well.  Thank you Carolin, Val and Val.

After a full week using the pump with insulin I'm starting to get accustomed to it and DAFNE has put me in an excellent position to feel confident using it and adjusting my doses where necessary.  On a personal level, one of the hardest things I've had to do is learn to curb my desire to try and fix everything at once and adopt a more patient and measured approach to fine tuning my regime.  I'm not quite there yet, but having the confidence and knowledge to be able to make changes should hopefully mean I'll have all my BG levels within target very soon.

As a final word, I'd encourage anyone to follow this link to the DAFNE User Action Group’s e-petition and sign it to lobby for a centrally funded diabetes education programme.  Studies have shown that not only does education help diabetics manage their condition with better glycaemic control and fewer hypos, but that the education will effectively pay for itself within five years.  Please take the time to follow the link and encourage as many others as you can to do the same.

Whilst I may have been skeptical before I started, I'd nopw say I'm a huge DAFNE advocate!  I'd be keen to hear on your own experiences of diabetes education courses, DAFNE or others.