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Sunday, 2 February 2014

Paraphernalia free.

Wearing an insulin pump and Continuous Glucose Monitor (CGM), irrespective of how life-changing and valuable they have become to me, does come with its drawbacks: the paraphernalia, for example. 

The insulin pump is a fashion faux-pas whose clunky outline forever graces my profile. It either sits on my waistline likening me to an 80s yuppie with my pager in tow (anyone under 25, look it up), or it nestles between the 'twins', occasionally protruding and distorting the shape of my chesticle area. Much to the horror of unsuspecting onlookers. 

My CGM sensor usually graces my upper arm and although a great deal smaller, is perhaps even more obvious because upper arms aren't normally fitted with their own on/off switch. Mine is, however.

Cannulas changes happen every two days (the drawback of steel over Teflon). And CGM sensors last between two and three weeks. So paraphernalia-free baths are few and far between. I imagine planets align on a more frequent basis. But now and then, the ducks line up. 

You very quickly learn to wash paraphernalia areas with a certain caution, because a knocked-out £50 CGM sensor ruins even the most sunny day, and a pulled out cannula is no picnic. So a day when all landscape is free and clear is a treat not oft-enjoyed, but deeply treasured.

This afternoon as my 18-day CGM sensor expired and my set-change alarm piped up on my phone, I knew what delights would lie in store for me tonight. The water heater is primed to stay on that edge hour for that slightly deeper bath, and my bath bomb has been retrieved from the back of the cabinet. 

Between 8 and 9pm tonight, the door will go unanswered. 

Do you treasure the paraphernalia-free moments? 

5 comments:

  1. Hi Anna, I hope you got to enjoy your paraphernalia free hour. I finally removed my first Dexcom sensor yesterday, not because of any readings issues, if anything it had got a lot better but I've just spent 3 days in hospital and felt I may as well give it up as I've got to get through a course of paracetomal which as you know can affect the readings. Anyway, this is the first day off and unsurprisingly my sugar was over 17.2mmol for first time in weeks! Just shows what happens when you get no alarm going off or warning from checking your Dexcom. So with that I'm swapping to ibuprofen from tomorrow so I can put 'Dexie' (sounds a little bit more female than 'Dex') back on. On a very positive note I had my HbA1c last week since using the pump and Dexcom and gone down from 7.4mmol prior to pump to 6.6mmol. Very happy with that and I do think the Dexcom has helped enormously though I do think it could (or is) easy to become a slave to! Jonathan H

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    1. I'm so sorry to have missed this comment! How did you paracetamol course go?

      6.6 is superb! Nice going! :)

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  2. Hi Anna Grateful for your comments above as most pumpers' comments are all totally positive! Am in the process of going for a pump after 6 mths of Dex use to manage hypos, which has prevented all major ones but still get lots and lots of 'beeps' and alarm fatigue, as trying to keep it below c. 10, makes it even more difficult to keep it above 3, if you see what I mean! Tighter control = more hypos unfortunately, albeit minor ones now. I've been pointed towards research that says pumps help prevent 70-75% of hypos. This has finally, after 49yrs with T1, persuaded me to give pumping a go. BUT my key worry is the 'baggage' you describe above. Most people say it's fine once you get used to it, but I still worry about the lumps and bumps and the tubing, though I have to say that the Dex transmitter bump is fine with me now, as the benefits far outweigh the horrid appearance. (Planning to wear it on my tummy in summer when short sleeves are needed.) You might guess that I have many issues around body image, having been somewhat overweight for many years in the past.

    So, question for you: is the pump really worth the dreadful feeling of being a 'mis-shape' if wearing summer clothes, or have you found a way of wearing it so that it's truly hidden when not dressed in baggy clothes?? Am going for the Vibe as it goes with my Dex, so there has to be tubing unfortunately. My hospital will only support pumps that have integral CGM - enlightened in many ways, but means I can't get an Omnipod or Cellnovo. What pump do you use, and if it's a Vibe for your Dexcom, do you still use the Dex receiver to read your BGs or do you rely on the pump screen?

    And a final word about my Dexcom: took it off for a week recently to see how I managed. Felt very free but despite being really careful, had two hypos, including one bad one, so put it back on and all is well (except for my purse of course). This had quite a big effect on my confidence as had thought that the huge amount I'd learnt over my 5 months with Dexcom would have stood me in much better stead that it did… Not a good feeling to realise how dependent one can become - but I managed for years when you couldn't even test your own blood, so it must be possible. Just not good realising how easy it is to lean on technology. Would be interested to hear your views about pumps in this regard - could you manage on MDI again? I follow Dr Stephen Ponder (a CGM using endo in Texas) on FB and he has returned to MDI after 30 years on a pump - his A1c is something like 5.6! I guess his diet is very boring!! LOL :-))

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    1. Hi Lis,

      I'm sorry this has taken a little while to get to, but I wanted to make sure I gave you as full a response as possible!

      The tubes and pump on my hip do sometimes annoy me, but truthfully I can't see that I would ever envisage giving it back. I remember night after night of chronic hypos and sever hypos. I remember being totally powerless to diabetes until I got the pump. Since being on the pump my A1c has dropped by 3% (from 9.6 to 6.6) and I can enjoy what I would call 'real life'. There are times when I think about being free of it and go on a 'pump break' but without fail I go back to it within a couple of days and am so thankful when I do. The freedom it has given me is worth the occasional annoyance of the pump. For me, anyhow.

      I use the Vibe but still use my separate receiver. Partly because the best place I have found to hide my pump without it being noticed is in my bra (between 'the twins'). Because of that it is a hassle to keep taking it out of the bra. But I will use the pump when we go travelling so as not to risk loosing the received in a campsite on the other side of the world somewhere.

      It will be interesting to see how you like it (or not, as the case may be). I hope that in future years they will become smaller and smaller. But it may be a good thing you didn't get an Omnipod. I stalk their FB account and there are so many complaints of failing pods. I'm quite grateful to have been on an Animas!

      I hope that answers your questions :)

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    2. Oh and I like Stephen Ponder too - his Dexcom insertion video was our guide for the first few tries! I had no idea he'd come off a pump though! I know a few people who have, but all of their A1cs have crept up I think.

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