Week Seven - Ups and Downs

On their debut album 'Love, And Other Catastrophes" the aptly named Skint & Demoralised sang about major highs, manic lows and that's a little what this last week has felt like.

When it's been good, it's been really good.  When it's been bad, well... it's been bad.

Having diabetes has felt like a lot more of a job this last week as you'll see below.  Yesterday in particular ended up with me curled up, asleep on the sofa at about 3pm with a nice hypo headache.

I talked about distractions last week and that's still the name of the game right now.  A combination of things mean that I worked til 9:30pm - 10pm three days running (having stopped for dinner and half a film).  Normally I'd be cursing even the need to work after about 6pm, let alone actually doing it, but it felt strangely calm - almost relaxing - to have something to keep my find focused.  It also had the benefit of making me feel almost productive at some point too.

I talked a bit about managing the voices/thoughts last week too and that's still been very challenging at times, particularly when trying to switch off at night.  I'd taken to kind of half going to bed, but staying up til gone midnight some nights over the last few weeks just so I could exhaust myself.  The problem with that is that it's a great short-term fix but long term you end up asleep on the sofa on a Sunday afternoon.

And I think that's almost been a lot of lockdown in a nutshell - some of the short term difficulties can be managed, but I'm not sure I've figured out how to do it in a sustainable way that doesn't just create a different problem to solve another time.

Worth mentioning a few of the highlights as well just to remember the highs as well as the lows:

1. Made Australian Crunch over the weekend - proper throwback to school dinner desserts and one of the best chocolate things going (Galaxy milk choc on top for best effect)
2. Bought a new Xbox and played a lot of Lego Marvel Superheroes with Violet
3. Managed to run 10km (with Violet on her bike) on Sunday - first time over that distance in a year, and awarded myself this medal from a virtual race

Finally, I know I've been really lucky to be able to call on a couple of close friends who have helped me be objective and rational (for me at least) and taken the edge of some of those manic times. I won't name names, but if you're reading this and it sounds like you, it probably is.  Thanks.

I guess the message is the same.  It's hard sometimes, and lockdown life makes it harder to manage and to escape.  One of Violet's favourite quotes is this from John Lennon.  I find it hard to believe in it sometimes and it almost feels a little but trite, but to hear a 10 year old say it every so often does give you some hope

Stay safe x

5000 Days with diabetes

Today marks a milestone for me.  It’s my 5000^th day with diabetes.  It’s nothing special in itself I suppose – I’m coming up on 14 years since my diagnosis, and many people have lived with this thing for a lot long than I have.  But 5000 days… that’s worth considering.

Generally, looking back on life, we often find it hard to believe how naïve we were about a lot of stuff – laughing at our younger selves for not knowing things that seem so obvious to us now.  My relationship with diabetes is no different.

I remember my diagnosis.  It was the start of my graduate year at university, and I’d been flicking through a magazine when I happened upon a side-bar that was talking about some symptoms of Type 1 diabetes.  Reading through it, I was mentally crossing them off… tired all the time, drinking a lot (of water!), needing the toilet all the time… This had been happening to me for over a week.  I could never drink enough water to quench that thirst, no amount of Mars bars would give me energy to stop feeling lethargic (...seriously).  I couldn’t see the notes on the board from the front row of lectures.

So I went to see the campus GP and told her I’d read a magazine and I thought I had diabetes.  To be fair, I’d have been sceptical in her position – I suspect it’s the equivalent of Dr Google these days.  But  I had a blood test and got a call the next day…

“You’ve got diabetes.  I need you to go to the diabetes centre at the hospital…”

“Er…” *looking at lecture schedule* “I could go Wednesday afternoon?”

“I need you to go NOW.  Right now!”

And that changed my life.  There’d been a kid in my class at primary school who had diabetes.  He was insanely resilient – you never really saw much indication of it at all – he just got on with doing what other 8 year olds do.  We all knew he had to have a needle (and this was the 80s so it was proper needles) but that was it.

Now I was sat in a room in a hospital with my parents who’d just bombed up it the motorway, with a nurse (Vicky Clancey) who was telling me I had to inject myself every day (along with a lot of other information).  I think I asked if I could just have a pill or something not utterly terrifying but to no avail.  I came home with a mountain of papers, booklets and more medical supplies than you can shake a stick at and I got on with it.

Over the next decade or so I had a complicated relationship with diabetes.  I worked hard some of the time, and saw the benefits of it on that half yearly report we’re all so familiar with now.  Other times I gave up entirely.  I took insulin when I was supposed to, but testing became a thing of the past – used only to justify eating when I was low (both blood sugar and emotionally).  And I spent time in between those extremes, giving my health the minimum attention it needed.

I think all that changed about four years ago.  The chance to take part in a clinical trial looking at insulin pumps and education courses (here’s link to an article discussing the results) was a huge turning point in my life with diabetes.  It finally allowed me to fill in the huge gaps in my knowledge, gave me the opportunity to meet people in the same boat as me and let me see that there was a world of other people that I could talk to.  I spoke at the Diabetes UK Professional Conference earlier this year about how DAFNE changed my life, and I don’t think I could ever possibly state how much that is true (you can read/watch more about my relationship with DAFNE on the Diabetes UK Taking Control site).

So I look back at myself now, after 5000 days of counting carbs, injections, finger­-prick tests (sometimes!), set changes and I can’t help but laugh.  I wrote on the very first post on this blog (which started as a London Marathon training blog) that “Whilst I’ve been diabetic for the last 10 years, I’ve…never let it define who I am”.  I don’t think that could be any further from the truth now – at least in some sense.

I used to be a terrified young adult who’d never really accepted this… thing… he’d been given.  Someone who was scared to ask for help, didn’t want to hear about complications because I was too young - that stuff will never happen to me right?  Someone who felt so low he gave up looking after himself for almost two years without a thought to the consequences.

Now, it’s different.  Diabetes is absolutely a huge part of my life – it has to be.  I feel part of a community that I can ask for help whenever I need to, and I’ve made some truly amazing friends as a result of this condition.  It’s still not always easy by any means, but it finally feels like that millstone around my neck has turned into something a lot more manageable and, dare I say it, more positive than I’d ever expected.

I don’t think you can live with a chronic illness without experiencing highs and lows (…sorry) but I think it’s about how we emerge from them that really matters.  We all carry battle scars as a result of diabetes (physically and mentally), but we’re still here, we’re still fighting and we’re still living, not just surviving.

How I felt back in October 2002 is completely alien compared with my outlook on diabetes today.  You go through a lot over 5000 days and how you use that life experience is so important.  I’ve gone from being a naïve 21 year old to a 35 year old who understands so much more than I thought possible (or at least I think I do...). 

I’ll be almost 50 by the time I reach 10,000 days with diabetes.  There’s going to be a lot more to learn, but I finally think I’m up to the challenge.