Loving and learning from the DOC (diabetes online community)

30 Apr

Guest blog from Lis Warren @LisWarren

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Although T1 for 49 years, I’m relatively new to the DOC and am still finding my way on Twitter. Looking back, I knew of just one diabetic at school but I don’t recall EVER talking about diabetes to other T1s during my first two ‘diabetic decades’. One or two blood tests and clinic visits per year in those days – you had to wait over 3 hrs at the clinic for the result – and that was it. And I don’t recall ever talking diabetes with my GP. My control as a teen was poor, due mainly to erratic eating behaviour – but that’s a (long) story for another day… I’m really not sure how I’ve turned out relatively healthy, but since joining the DOC I’ve now read about a ‘protective factor’ that blesses some of us with few complications https://www.joslin.org/news/diabetes-veterans-may-show-ways-to-prevent-complications.html. This is just one of the hundreds of new things I’ve discovered from the DOC – I’ve learned so much!

It was only about 9 years ago, when I did the DAFNE course as a sort of refresher, that I ever had a real discussion about diabetes with other T1s. So that’s four decades of pretty much doing it alone, with a drip feed of encouragement and information from my Balance magazines and from my consultant, whom I respected and (mostly!) got on with well.

Meeting others was a revelation. I’d had no idea that for many years, most had not routinely been taught to count carbs and many knew very little about how to control their diabetes. I was appalled that at some point, the NHS had stopped teaching diabetics to count carbs and people went for years not really knowing how to manage. I began to appreciate how great it was to meet others and discuss common experiences – the good, the bad and the ugly! I also realised how lucky I’d been to get a basic D-grounding back in the 1960s at the now infamous Stepping Hill Hospital where I’d been taught to count carbs (the one where a nurse has recently been accused of murdering people with insulin – and in the same ward I used in 1965!).

About 18 mths ago I joined a research advisory group at Imperial College and began to get very excited about the development of their microprobe continuous glucose monitor (CGM) http://clinicaltrials.gov/show/NCT01908530. There were also other T1s to chat to! The idea of CGM had been a fantasy of mine for decades as I had poor hypo awareness and experienced them regularly. Last October I bought a Dexcom CGM, thinking this was the answer. My GP and then hospital clinic (I’ve now moved to Imperial) both felt unable to support me clinically, but I thought I knew sufficient to handle CGM well on my own… I could not have been more wrong.

Even with 49 yrs of diabetes experience, I found it really, really tough. Despite a reasonable A1c, I had no idea just how severe my blood sugar fluctuations were and I’d never appreciated how different food combinations were absorbed at hugely different rates. My blood sugars were going up and down like the proverbial Rocky Mountains and it became a full time worry trying to get things on an even keel. I grew desperate for support and advice and whilst waiting for a hospital transfer, I turned to Facebook where several lively D-groups became my daily crutch. I quickly got hooked – and thankfully, HELPED! The sudden access to masses of blood glucose info took me on an emotional roller coaster. I’d get upset when it went high, low, when it moved very suddenly and when the alarm sounded 3 times during the night. But most of all, when I didn’t understand the reasons for rapid changes in blood sugar I felt very confused. I use MDI and small doses of insulin, so the fluctuations can be difficult to manage when it’s not possible to give the micro doses possible with a pump. I discovered online that there were hundreds of others grappling with diabetes issues – and they were all helping each other. It was fantastic to read, share and learn with others.

Dr Stephen Ponder, a T1 endocrinologist in Texas, hosts an excellent Facebook page for diabetes and CGM https://www.facebook.com/StephenPonderMD. INPUT http://www.inputdiabetes.org.uk is another great resource for advice, forums, blogs and London meetings where I met others interested in diabetes technology. They gave me the opportunity to see the Animas Vibe pump I’m shortly to start using myself! I’ve never wanted a pump but after seeing the benefits others have gained and reading the research demonstrating that hypos can be reduced by 75% with a pump (Management of diabetes mellitus: is the pump mightier than the pen? JC Pickup), I’m now hopeful that I’ll finally be able to avoid most of them – and improve my A1c at the same time!

I can honestly say that in the last 6 mths of interaction with the DOC I’ve learned more about T1 that I did in the last few decades. The dozens of links posted to fascinating blogs, the latest research, plus the great online Twitter chats hosted by #OurD have all been an eye opener – and I’ve enjoyed every minute of it. I’ve also been re-motivated to improve my A1c. I can’t now imagine living without instant access to a place where I can ask questions, seek opinions, hear funny stories and give/get support. It’s been fascinating to read about diabetes in the USA, where access to pumps and CGM is such a different ball game. There are many shortcomings in the UK, especially re. access to diabetes technology, but I have to say that I’m now even more grateful for our wonderful NHS.

On the downside, keeping up on the DOC can be incredibly time consuming – I couldn’t have done it when working my previous long hours. I’ve also read many tales of woe online and it’s reminded me that many people struggle terribly with their diabetes. I’ve been shocked to read how some parents fret so about their T1 children and seem to think diabetes is a death sentence. It’s absolutely not! Chronic disease can, if you allow it, be a teacher and a blessing in disguise. Diabetes has provided me with an arsenal of precious tools: determination, resilience, tolerance, strength of character and self-control. (To be honest, that last one is tricky where food’s concerned, but diabetes did give me self-control in spades for other parts of my life!) I sincerely hope that via the DOC, I can now share some of the good things and the lessons I’ve learned with T1s who are struggling. They need to know that they will be OK. I am NOT a D-saint by any stretch of the imagination and I’ve had plenty of bad times, but I’m living proof that even when things seem too much to cope with, it is possible to have a completely normal, healthy and full life with diabetes. I’d encourage strugglers to share their fears and frustrations about injections, testing, hypos, hypers, complications and the psychological challenges these bring with the DOC and get the support that’s out there waiting.

Sharing and knowing that you are supported is essential and builds confidence. With confidence it’s possible to live at peace with diabetes. For me it’s not an enemy to be defeated, it’s a part of me that needs TLC. Ask for what you need and get support on your way from the DOC.

Good luck!

 

 

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3 Responses to “Loving and learning from the DOC (diabetes online community)”

  1. Scott K. Johnson May 1, 2014 at 5:36 am #

    Thanks for sharing, Lis!

  2. Katherine Sutton May 1, 2014 at 7:05 am #

    Super post Lis – know exactly how you feel 🙂

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