Hello peeps. It’s been a while. Sorry.
I would say the wait will be worth it but there’s no singing red squirrels or videos of cats with toast on their back so I’m not sure but I hope you enjoy my thoughts anyway.
Over the last few months I’ve had thoughts about what to write next and I keep coming back to today’s subject. It’s a thank you but it’s also an explanation of what something means to me. So what is this thing that has occupied my thoughts so much? The D.O.C. or Diabetes Online Community. It’s a rough grouping of people ‘online’ and I’m guessing most of you reading this are already members. What I really love is that whilst the name seems simple it encompasses such a wide range of people, ages, viewpoints and experiences.
We’re made up of; people with diabetes, parents of people with diabetes, family members and friends of people with diabetes and a significant number of HCPs (healthcare professionals). Everyone is part of it for a different reason and what I’m going to try and explain here is what it means to me. For you it might be similar or it could be completely different but is that a problem? Nup. And that’s why it’s so good!
Without sounding like an ageing fuddy-duddy, diabetes has been a significant part of my life for over three decades and yet things back then were so different. Ee by gum. For me, only as far back as three years, I was operating in my own little self-contained diabetes bubble where I was the only PWD (person with diabetes) I knew and my support was limited to - but very ably catered for by - my close family and a couple of healthcare peeps I met every few months if I was feeling brave enough to be told off that day.
I’ll admit a few years previously I’d delved into the online world of forums but after reading a few posts bragging of HbA1c results and BG perfection a world away from where I existed I logged off and believed I was the only one who felt like I did. Of course it was the case that every 'diabetic' could manage perfection with a dedication and ease.
So what was my epiphany? Unfortunately I’m not sure. It’s one of three places and I’m not entirely clear which I stumbled upon first. In no particular order, it was either Emma the duck, the forum at Shoot Up or Put Up or Up and Down Mike. Over a few days the combination of these three made me realise that there were others out there like me who experienced similar issues and worries. After a small while I introduced myself on SUoPU and then found Twitter. Wow! There isn’t just three other groups of people from the UK thinking like me there’s a whole world full of them! Yes, I know! Who’d have thought it? Chance theory would suggest that there’d be at least a couple of me somewhere in the world but actually being able to find them. And chat. In nearly real time was just mind-blowing for me.
Over the past couple of years I’ve now been conversing mine and my wife’s contacts have grown giving plenty of pop-in-for-coffee opportunities around the world – yes, I’m looking at you New York! Added to this is the chance for my parents, family and other friends to see what living with D means to me in a way that I’ve never shared before.
So what does the DOC give to me:
- There’s normally someone, somewhere who’s either experienced my latest problem or is going through it at exactly the same time. An example of this was last night where I’d had two consecutive, slightly painful set insertions. Obviously this wasn’t down to my technique as I’m perfect ;-) so it must be a technical fault. A quick question to the twitterverse on whether the inserter has a functional lifespan gave me multiple replies confirming that it was me who was to blame and a couple also suggesting I try a different set (i.e. mio instead of quickset). I had the answers I needed within minutes without any need to pester my DSN or call the Medtronic helpline; although whenever I have called them they’ve always been very helpful. For me and my family the switch to Adam has been huge. And anything new always gives a thousand questions - i.e. where do you put your pump when you sleep? - but the DOC gives a real opportunity to get different opinions. Often the answers are consistent but sometimes they aren’t and this isn’t a bad thing either. It just proves that there isn’t always a definitive answer and it’s a case of picking the best one for you.
- It’s reciprocal. I’ve received a LOT of help over the last couple of years and now whilst I’m still there grabbing new exciting information, I’m also able to offer a little experience to those with questions. The new-pumpers ‘should I or shouldn’t I’ are always the best; especially when they read what I said last year and understand that others think like them too. You, yes, you, there’s someone who feels just like you do today. And someone else who’ll understand how you feel tomorrow.
- It’s not just about the D. Yes, we’re mostly closely linked to an annoyingly lifelong condition but other things happen in our life too. Recently a good friend on the DOC suffered some serious family heartbreak and I’m hoping the support the rest of us offered helped in a little way at a crap time. It can seem crass and oversensitive to call us a family but sometimes it feels just like an extended family with ‘relatives’ around the world and the support offered by me and others hopefully helps.
- It gives a chance to encourage empowerment. For years I was afraid to ask questions of my HCPs. Not their fault; just that I felt I should have known the answer already. How can I have diabetes for 30 years and not understand the liver's involvement in my condition? Everyone must know it, as they don't talk about it, but it does 'something'. The DOC has given me the strength to ask the questions I need to for my benefit. Once again pumps aren’t for everyone but for me it’s worked well and I wouldn’t have even considered one without reading other people’s experiences – Duck that’s you again!
- I can ask a question and get answers and then I can go back with my experiences. It’s a growing bank of knowledge and not everyone will read everything but if someone asks a question often there’ll be a link from someone else saying “Not sure but Dave has done that” and then I’ll dive in offering my expert knowledge . Well, I’ll let them know what happened and hope it helps anyway.
- We’re not all the same age. Whilst I may still believe I’m youthful and cool my passport says otherwise and my use of the word ‘cool’ just there proves I’m not! So I can offer a memory of how I felt and and what I did to get where I am today or I can do my part by pointing in the right direction and offering educated guesses although obviously being very careful about not offering specific potentially dangerous advice. Sometimes it’s just an encouraging word to a parent that their efforts will eventually be appreciated and despite the constant promises of complications it’s possible for their child to achieve whatever they want to – flying fighter jets excluded; yes Top Gun still hurts!
- It’s always there. My very capable DSN is available via answerphone message Monday to Friday 9am to 5pm. That’s 40 hours a week. For the other 128 I have my own personal encyclopedia of knowledge in varying levels of hypo, hyper or perfection.
- This one’s a big one. So I’ll build it up slightly. Are you ready? Really? Do you want to know the big one? The one that really makes me happy to be part of the DOC. You do? Good. Inspiration! Yes, that was it. I’ve never really had an attitude where the D will stop me from doing anything (excluding the previously mentioned highway to the danger zone) but the DOC has shown to me that anything really is possible. This month Roddy Riddle ran 156 miles across the Sahara desert in a time that anyone would be in awe of. Doing whilst attached to an insulin pump and CGM is truly, truly inspirational.
- We can offer support to people who’d previously be on their own (and maybe still are). If we can engage then almost by default control or even a willingness to try and gain control will improve. A consequence of improved confidence of our condition gives an improved chance we’ll engage with HCPs to improve our care and consequently control. It’s like a silent nagging but there’s no-one there saying that a high BG is judgement of you. More often it’s a comment on possible causes and resolutions. I seem to spend a lot of my time trying to encourage that there’s no such thing as a ‘bad’, BG just one that needs more correction than one within target range. For me removal the success judgement of a BG has helped a lot in improving my control. Which is a bit of squiffy thinking but it works so I’ll keep doing it!
At this point I do need to offer a word of caution. The DOC is a part of the real world and therefore also needs a certain level of care and protection. Just like I’d never eat horseradish just because the Daily Mail tells me it will prevent cancer, I’ll not act on a single suggestion which might have implications I’m concerned about. If in any doubt then I’ll store it in my unorganised memory to ask the Dr or DSN at my next appointment.
So that’s why I love you DOC. Yep, you. Thank you for being there and giving me something that didn’t and couldn’t have existed 10 years ago with such a level of portability and immediacy.
OK, so it’s helped me and it might have helped you too but how do we help more of the Dave from 4 years ago? Don’t know. I keep plugging the DOC whenever I can but I also know there’s a lot of people just like me who will read about people in Balance in waiting rooms believing that they aren’t part of their world and they couldn’t feel how they feel. Let’s do what we can and shout it from the rooftop and slowly we’ll get there. HCP involvement such as from Partha (lots of links today but this one is REALLY good - and it's from a HCP perspective too) can help a lot too.
There’s a tenuous link here to another topic I’d like to quickly mention but please bear with me as it’s important. I asked above how we could get more people into the DOC but for many people the O bit of DOC is a huge issue of cost and priority – food or Internet. I was contacted by Lucy Laycock from The Pendsey Trust www.thependseytrust.org. It is an absolutely fantastic charity providing resources for people with diabetes in India. I’ll point you in the direction of a fantastic interview with Lucy here. And just in case you skipped that link here’s a quote from Lucy to inspire you:
“One kid I met said "I wish I had AIDS, not diabetes." He said that because if he had AIDS, he would be able to get access to the medication he needs to survive. Additionally the kids face terrible stigma as people don't understand their condition. Many are abandoned by their families and forced to eat and drink from different plates and cups to other people.”
Welcome back. Thanks for reading the interview linked to above.
It’s been a long one this time so sorry about that but as you might have guessed by now I do ramble a bit :-)
Stay healthy and safe and please let me know if you agree or disagree with anything I’ve said.