Posted by on Monday, 8 December 2014

Christmas Wishes - Guest post for Diabetes UK

Sometimes diabetes feels more like an uphill struggle than others. I'm in one of those periods at the moment. The months are rolling by with a constant sense of dissatisfaction with my BG levels. Strategies are being tried, seeming to succeed then seeming not to again. Then the situation turns on a sixpence and I'm having to reverse all the dose changes I have been carefully making - chasing lows not highs, vice-versa, or more usually both at the same time. It's relentless.

I'm not quite sure where I read it but I saw something online a little while ago that talked about why it is that you are more likely to be made unhappy by the little niggly things than really big important events. It seems our brain deals with life with a degree of caution and because all of the mental and physiological engines that kick in when Something Big happens are hard work and take up valuable resources it does not dish out these responses easily. So that if you were involved in some sort of nasty accident you might be able to think coolly and rationally about what to do, and be flooded with hormone responses so that you can work through the process of fight or flight; of escape, manage, repair or recovery with your happiness relatively intact. The small things, however, just slide under the radar and you don't get that helping hand.

Living with a long-term illness is often in the 'under the radar' territory. Sometimes for me, living with type 1 diabetes seems to offer little more than a gentle, relentless sense of failure. Occasionally this is not exactly helped at clinic appointments. How often have you been told to "Just keep doing exactly what you are doing - your levels are perfect!". No, me neither.

Living with type 1 diabetes is an ebb and a flow. Sometimes you discover a new technique, or make a big change like switching insulins or moving onto a pump and there will be a period of readjustment and relearning where you feel you are actively working toward something. It might be that you decide to tackle a long-standing challenge: exercise... overnight levels... restarting regular testing. These can provide short-term goals which allow you to measure progress, focus on achieving whatever it is. Even if you don't succeed straight away there can be a sense of positive feedback. Struggling through and getting it done.

But then there are the ebb tides.

I'm now starting my fourth year on an insulin pump. In the first year I quickly discovered I had no idea what I was doing. I managed to get the basics in place relatively quickly, but I think it was the best part of a whole year before I really felt I was making progress. The second year was more polishing and refining. Working out dual/combo and extended/square bolus options for 'tricky' meals (and them working out again, and then again). Improving results around exercise, and beer (all the important things you understand). In the summer of 2013 I had a run of absolutely extraordinary months of BG results. The best I have ever seen.

Then things got a bit wobblier. But I didn't worry - only to be expected after all. Then wobblier still. Ah well - maybe next month... And so it has gone on.

I wish I could have those levels back. But as much as I have tried to replicate the techniques, food choices, dose adjustments, basal pattern resets and everything else in the months since, certainly over the last 6 months it has just been one set of slightly disappointing results after another. Part of me wishes I had never had that glimpse of what was possible at all. Not had them to compare against. I have had brief periods of decent results since (notably with the Abbott Freestyle Libre), but all too quickly things have strayed again.

So here's the thing. If you are struggling a bit at the moment, and feel like it's all gone to pot - it is NOT your fault.

Keep chipping away at it. Keep doing what you can. You are doing an amazing job, and if the tried and trusted techniques you have been using are not working so well right now it is not YOU that moved the goalposts. You are doing your bit. It's your diabetes that needs to pull its finger out and start behaving again. If all else fails go back to basics and start again, but keep going.

So I wish you all more 'flow' this Christmas, and a lot less 'ebb'. All through the festive period and into the New Year I wish for you (and me!) to be happier with the results we are achieving. To lose any sense of disappointment or self-judgement where things go a little off-track and unlimited patience to gently steer things back toward the middle ground again.

4 comments:

  1. Oh how I relate to this! (you do say it well though!)

    Frequently it feels that everything you've learnt must be wrong because it doesn't work. I have to keep remembering that it's what life is all about, and this online community keeps reminding me to keep at it - unlimited patience, that's a thing!!

    Enjoy this season of hope and joy!

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  2. Thanks heasandford, much appreciated :)

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  3. What a lovely post Mike :)

    I think you're absolutely right about the potential for small disappointments to build up in the background - and so important to stay positive.

    All your hard work with the diabetic control simply illustrates how variable day-to-day insulin sensitivity can be. I really believe the simple way forward is to use CGMs more - in conjunction with the knowledge base that you have built up about the effects of exercise, different rates of absorption of different meals etc.

    So glad that you have tried the Freestyle CGM - I've been using the Dexcom one for three years now - the main advantage being that it runs in the background and will alarm when needed (working, driving or sleeping). The alarm will definitely wake you overnight - it's much louder than my alarm clock!

    A very Happy Christmas to you and your family,

    Best wishes,

    Ian

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  4. Thanks Ian - and to you and yours :)

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