Not diabetic enough.... apparently

I was so unaware that there was a pecking order in how you are regarded by fellow diabetes diagnosed bods. Over the course of this week I have had (admittedly) a troll tell me people like me are the blights on the NHS and that I had no right to be spending my money on a Freestyle Libre to manage my diabetes (quite aside from the fact it helped me reduce my A1C by almost half in three months).

Now someone I did admire starts lashing out at people venting their frustration on Abbott's shoddy stock management and lack of knowledge management for the issues multiple people have seen using the sensors.

All of which depresses me to the point... maybe I should just shut up, take the tablets my doctor wants to prescribe and no doubt more besides, and just keep doing what I was doing before I had an inkling in the spring/summer that something was not quite right. After all, ignorance is bliss... right? Coupled with roast potatoes no doubt.

If no one wants me to be proactive, virtually accuses me of singlehandedly ruining the NHS, then actually I may as well just revert to type. Let's not bother stabilising and bringing my weight down in a more controlled way than the sudden loss which was a symptom for me. Let's not bother with low-carb... there. Fixed it for the "real" diabetics out there.

Guzzler said:

Some people think that free speech gives them free rein. It doesn't. An opinion is just an opinion but some are under the illusion that their own opinion is inherently correct and anyone who expresses themselves differently deserves to be smacked down. These individuals do not warrant your time, they certainly do not merit your attention.
Do what is right for you and what works for you because you can be certain that they will never change.

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I thought I was. Now it turns out I am playing at being diabetic and have the organisational sense of a soggy paper doily.

Very true. I think I am going to take a break from trying to learn more about managing my condition or at least trying to highlight some issues *some* people are seeing with Abbotts.

I was going to update both a FB group and these forums with their latest advice about ordering in the hope it might help others like me - instead I think I will just stay schtum and not bother. No-one thanks you for telling them what they don't want to hear.

I will pick things up again when I get done with this next period away and after a non-stop run of shifts which (ironically) is the only way I can actually afford to contemplate a larger order. But I am sure someone will be along in a minute to criticise my life choices.

Guzzler said:

Sometimes a short break works wonders but do continue to tell of your experiences with managing your Diabetes, it would be unfair to allow those who live in an echo chamber to reign. Good luck, stay well.

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It was actually my intention to. I run a sports website that is galloping towards a fairly respectable 1/3m unique views in just this year alone, so I definitely think that and my built up knowledge of SEO would (have made?) it a very viable series of articles to write - As I understand it, I am not immune from never going on insulin... and it is incumbent upon me to give myself every fighting chance. Call me immodest but I think that is a fairly good audience for a little site, and could help drive a fair bit of traffic for those in the same boat.

I dunno. Maybe it is just end of season blues and I am just trying to give myself one more push to get over the line, and while I am truly thankful to have a fair few shifts for now on a much bigger sport site's sportsdesk, it means I am delaying my 'off-season' for a while and thus the time to write.

I probably will and perhaps one of the more reasonable admins on the FB group I mentioned also encouraged me to write and spread the word. Just right now I feel utterly demotivated by the judgement of others and it is easier to just think about getting this last one in the books, try and drum up some more lucrative IT writing work and then bury myself in a week of earlies and the full weekend of lates and think about it all again when I finally get my head above water.

Guzzler said:

Sounds like R&R will prove to be a necessary this time around. Enjoy recharging your batteries and remember that there is no proven link between any of the types of diabetes and a lack of emotional inteligence.

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Thank you... that made me smile

woodywhippet61 said:

Sorry but where are you being spoken to like this? Can't address the rest 'cause I don't know anything about it.

Re the Libre mine always reads low as in lower by 2 than a finger prick does. I just add 2 to whatever readings I get. This morning my fb's were apparently 2.8. So I had a think about how I was feeling - hungry ish but otherwise fine. If I'm worried then I finger prick test which is how I know that the Libre reading is low. I've also tested the Libre with their own strips and it reads a finger prick the same as a Jazz and a bit lower than a code free. BUT as we know they can all vary and it wasn't the same blood sample so ..........

It's frustrating but I still rely on mine as it is so convenient to use. ALSO the Libre average blood glucose levels were very close to my last A1c which tells me that it is more accurate than I thought. ( No doubt someone is going to come along now and say that that isn't the case).

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So I just had my usual brekkie of natural greek-style yoghurt, some crispy oat hearts and a drizzle of honey which saw my reading rise up to 4.7 (so potentially 6.7ish).

I guess I got lulled into a false sense of security with the first four sensors so my first two months I loved the thing. The last two or three months though have felt like an uphill battle!

The most direct criticism to me personally came in a FB discussion about Abbott's shonky stock rotation and delivery woes, and the criticism about being awkward and not having a finger-prick test and not making allowances to go get one while I am at a tournament was via FB messenger with someone very happy to throw their own opinions about but less happy to accept that not everyone has someone at home to run errands for them!

The latest was in an exchange of messages here - I felt that I am not in as dissimilar position as some who maybe cannot afford to buy as many sensors as others, and for one reason or another am not in a position to place an order when it apparently suits Abbotts and not me. I say that with the knowledge that the Abbott rep himself told me NOT to order December (and possibly January's supply) when I got back from Singapore. At the time I had 2 sensors in hand with expiry dates of Nov 2018. He told me to order next Monday (but that is not terribly convenient when you are working away, long hours and not honestly physically free to deal with admin until the last week of the month!), and also told me not to use any Apple device to place my order as they had problems with those too.

Anyway - I let rip at them on Twitter yesterday, and will call them first thing in the morning on Monday to place the order and see what they advice about this sensor that thinks I am all but clinically dead. I am really reluctant to just change it - not least of which it will be the end of the month before I can even physically send the **** thing back to them.

I know my frustrations will only get worse when the season proper starts again and I have to go through a full tennis season trying to manage with the libre.

I leaned a lesson. Until I get my A1C down to anything near normal, I see no choice but to have a fingerprick test (at my own expense as my doctor just wants to medicate and won't pay for it) and so if that is the case, I don't see why I should go out, cutting into my working day to find a decent pharmacist with a decent choice including those that lend themselves to the amount of travel I do. I don't believe my BG is between 2-3 at all and I certianly don't feel that it is in terms of within myself.

Mine was a little way out from the A1C - Libre had me at 41 and I came in at 59 so still a bit of a disparity.

OK so thanks @Guzzler & @woodywhippet61 for your words of advice.

My plan is...
1) Get through this week and a half or so away from home and then just be thankful I am at home for a spell of hopeful stability.
2) Call Abbotts first thing on Monday morning and at least get my order in, and if at all possible get their steer on this sensor that is stuck in the doldrums. I have a spare in my suitcase that was due to go on in about 10 days. This will be my earliest failing sensor.
3) Once I have some time at the end of this month, I will start writing proper articles about this journey. If people will indulge me I will drop a linkeroo in here from time to time.

In the meantime I am going to look forward to the last tournament of the year with my fellow itinerants who have been nothing but supportive of me since my diagnosis. I am also going to go back to the gym/exercise once I am properly free from 27 Nov and going to through myself into the pursuit of yummy low carb meals to prepare.

Catch you all in a few weeks.

woodywhippet61 said:

I haven't any problems with Abbott BUT I haven't had to put an order in since the November date that they were going to be paid for by the NHS. I have noticed that several people on Facebook have been complaining about not being able to get sensors. I also order online using my macbook. I've had good responses from them when I've complained about how far out the sensors are which is why I have Freestyle testing strips. I have only had one sensor fall off and they replaced it.

Two observations.
I am retired so I have a fairly easy lifestyle and I believe that my bgl's reflect this. However when I go and do something which I find challenging or new my bloods go up by 2 - 2.5 (liver dump). Given your job I wonder how that affects your bgl's?

My first sensor (when my bgl's were high) defo seemed to react as other people's do i.e. closer to a finger prick. Once I'd got my levels down and flatish (graph) then that's when they went really low. My levels came down like that by 10 days - 2 weeks. But that doesn't seem to have happened for others?

Given your lifestyle I would have thought that the Libre was best suited to it. I love the fact that I can be walking along or sitting at a table in a pub waiting for lunch and can just test.

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I would say my levels are at their worst when I am away at tournaments - they were a bit all over the place at Cincinnati (which to be fair has not bad concessions but still...very... American)! When I was then on hols in NYC I could find restaurants/diners and probably gravitated to lowish carb dinners.

Singapore was a bit more challenging. Not much available and the hours meant we were almost always opting for the media centre.

The caterers at the O2 seem to be a bit better, and there are places in the O2 to nip out and get something slightly more helpful ... IF time allows. That is the main thing.

When this current sensor went in I was sitting steady at around peaks of 7 and around 5-6 fasting and then suddenly a drop to well below it's default range of 3.9 - so... who knows. I am really reluctant to ditch this one until I speak to them on Monday. I need to order a stack although I shall do so a little disgruntedly!

No more tournaments but plenty of sportsdesk shift work over the next couple of weeks but more importantly back at home to control my cooking and exercise - let's see if that helps! My next blood test is in March (probably will do it before I fly to Indian Wells, which has THE WORST food available to us hacks). My next 'stress' though is the constant "oh you must do something for Xmas" - my mother died suddenly earlier this year, and my father died a few years before so... no plans for Christmas except a time for quiet reflection and maybe catch up with cousins (the ones who recommended the libre, actually) ... but I am finding people staggered I don't want to deck the halls quite stressful. Not that my libre seems to think so!

DCUKMod said:

@RFSMarch - In the post I responded to earlier, I could tell you were frustrated, but thought is was purely the Libre all going a bit wonky at the wrong time, which is bad enough, but, I hadn't realised there was more to it.

I realise you've mentioned that things happened in other places, but should that sort of thing happen on here, please do use the Report button, below each post to report the relevant one. That just brings these posts to the prompt attention of the Mod population.

Many thanks.

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It’s ok. Just a difference of views, but stark enough to make me realize that diabetic snobbishness also runs to those who have to juggle low income and trying to fund sensors around pay day. The sarcasm was enough to make me put them on ignore, and make me appreciate that not everyone can just take a financial hit. I know I can’t for an order of 4-6 but I will just make cutbacks elsewhere to have the money to hand.

Anyway... in more positive news I think I have identified the right finger-pricking kit to have as an a spare given Abbott’s utter uselessness at the moment.. will look for the Accucheck Performa Nano when I finally get back and can get some online orders in. Seems to suit us non-insulin T2s ... will post a request for info.