The pump call came!

[Spathiphyllum]

@Spathiphyllum A lot of what you have written above resonates with me. The long standing stress/anxiety/depression disorder particularly around decision making, living alone with diabetes and up until a couple of years ago, the fear/terror of hypos, particularly nocturnal ones. Interestingly what cured me of the fear was having a week of almost nightly hypos, despite adjusting my evening basal insulin.... right down to zero... this was during a period where I had really stepped up my exercise levels. Up until then I hadn't had any nocturnal hypos but not infrequent daytime ones and I think what reassured me was that my body woke me up, I dealt with them and carried on (with my sleep) in much the same way as I do through the day. I am now very aware that familiarity can breed contempt and of course I do my utmost to avoid hypos but it is such a relief not to live in fear of them anymore and to learn to trust my body..... to the point that I fully intend to disable the alarms on the Libre 2 when I have to upgrade at the end of this year, because having spent nights waking up every couple of hours to test or scan to make sure I wasn't hypo, I now really value my good night's sleep in the knowledge that my body will wake me if it need to.
This may not happen for you but I just wanted to say, that this was a real surprise and complete turn around for me and I actually feel more secure in trusting my own body than the technology of a pump. This happened not long after I finished my DAFNE course and before I actually got Libre which I was trying desperately to get prescribed at the time... a bit like you with the pump. For me managing these nocturnal hypos gave me confidence and my diabetes management has improved both literally in terms of levels but also emotionally since then. It was like a turning point I suppose and I no longer suffer anxiety with my diabetes now. It is certainly still frustrating at times, don't get me wrong. but the fear has melted away and I feel like I can deal with whatever it throws at me now.... and I have had a few challenges since then.

Even on a day like today when I am really struggling with panic attacks and I feel like I have metal straps around my ribs and my heart is beating 10 to the dozen, I just manage my diabetes as a background task and tonight when I have to figure out how much evening basal I am going to need, it may be a bit like pinning a tail on the donkey .... anywhere from 0-5.... I give it some thought pick a number depending upon how my daytime levels have been and how much exercise I have done today (bot all so far 🙄 which is part of the anxiety problem) and then usually adjust it by half a unit and jab it it. I make sure I am well prepared to deal with hypos through the night with JBs close to hand and reader under my pillow but otherwise I sleep soundly.

I really hope you can also reach this level of confidence but it only came with time and experience for me. Just wanted to offer a little hope in case your mission to get a pump takes time. Things can get better without one sometimes even if you very much doubt that they will. It certainly surprised me!

Dear Barbara-- So sorry to hear you have panic attacks too! Have you seen anyone about them? I'm lucky to have a really excellent clinical psychologist, who has particular expertise in anxiety disorders; don't know what I'd do without her.

If your nocturnal hypos wake you up, that's great-- who needs an external alarm when you have an internal one? Unfortunately, nocturnal hypos don't wake me up. On the bright side, I'm still alive! But I really don't want to play Russian roulette; I'm all too mindful of the fact that, if I slipped into a coma, there wouldn't be anyone there in the morning to notice and ring 999.

Sounds like you have a very low basal requirement too. I was started on 10 but they had to reduce it every day or two, and then get a half-unit pen, so I've been on 1.5 for about 3 months now. Not 'honeymoon period'-- my C-peptide result shows I'm long past that; consultant says I'm just unusually insulin-sensitive. Even on 1.5, if I want to be sure of getting an uninterrupted night's sleep, without Libre going off, I feel the need to make sure bedtime Libre reading is on the high side. So I've managed to avert nocturnal hypos for a while-- but still get unpredictable daytime hypos.

Of course I read a lot about pumps before forming a view-- I'm not the sort of person who just says 'ooh, I want that shiny new thing!' So of course I know they have their own problems and make their own demands-- but they are still a lot better than MDI. And I know there are some people who find pumps don't help-- but, for every one of those, there seem to be many more who say that looped pumps made a huge difference to their lives and their psychological wellbeing. And there seems to be research showing that most people find looped pumps reduce the psychological burden of T1D and improve their quality of life. (The Scottish equivalent of NICE didn't just say 'ooh, patients should have these shiny new things' either ... )

Anyway, deep breaths-- breathing exercises are very good for anxiety! And hope you sleep well.

 

[rebrascora]

@Spathiphyllum No I don't get any formal support with my anxiety. I am fortunate to be retired so I can give myself time and time always fixes it, but yes, breathing is good and walking is great because it makes me breath and steadies my heart rate, if I can manage to get myself out of the house, but that in itself can be challenging on days like today, but will go out shortly.
As regards basal, I actually take quite large doses for a Type 1. My morning dose is 20 units but I only need a small amount during the night, which is why I love my Levemir for allowing me that flexibility. I would never manage with a very long acting basal because of the disparity between day and night, but by adjusting each dose independently and changing the time that I take them, I can get pretty good basal stability to cover my needs and personally I have no interest in a pump for myself although I love to read everyone's reviews and reactions to them.

Interesting but very concerning that you don't wake up, especially when you are relatively newly diagnosed. How low do you need to go before you wake up or are you just going off Libre saying you were hypo? I think hypo symptoms are less obvious during sleep so sometimes your levels need to drop lower than during the day for your brain to respond and warn you. That said mostly I will wake up if I get to about 4 or high 3s (Libre will show me as low 3s or high 2s, but it exaggerates 🙄 )

Anyway, I wish you luck with your quest for a looped pump. As with all of us over the years for things like Libre, you need to make a good case for yourself... itemize critical points from NICE guidelines and maybe even document it in an email so that there is a paper trail and keep trying until you get a yes!

 

[Bruce Stephens]

I think hypo symptoms are less obvious during sleep so sometimes your levels need to drop lower than during the day for your brain to respond and warn you.

Yes, I seem to remember there being some specific mechanism that suppresses hypo symptoms during sleep. Regardless, as you say that's factor that ought to be relevant when asking for a pump.

 

[nonethewiser]

But the psychological burden is enormous.

@Spathiphyllum It took me around two years to really get used to Type 1. I still struggle, but I feel that after those two years things settled down a bit. However, Type 1 is a psychological burden and having a pump doesn’t make that go away. When everything’s going well, then the pump does make it easier, but it certainly doesn’t free you from the burden - because the burden is a lot more than the practical things. It’s emotional and it’s also involved with food, so is there each day.

If you have anxiety problems, then potentially a pump will just change those problems a bit - a bad site?; will the pump malfunction and ‘run away’ (inject too much insulin); is the basal rate wrong? why’s it making that whirring noise; occlusion alert; having to get up in the night to change the cannula, etc etc.

Pumps aren’t a magic answer. I say that because it’s very easy to think that they’ll solve the stress, but the stress is the condition itself, and until that’s cured we’ll have this burden.

Totally agree with you Inka, despite tech like libre & pump the mental burden of Type 1 is still there ticking away in background, maybe not as bad as before on pens & bg testing but it's still there & won't go away until diabetes disappears for good.

 

[Spathiphyllum]

@Spathiphyllum No I don't get any formal support with my anxiety. I am fortunate to be retired so I can give myself time and time always fixes it, but yes, breathing is good and walking is great because it makes me breath and steadies my heart rate, if I can manage to get myself out of the house, but that in itself can be challenging on days like today, but will go out shortly.
As regards basal, I actually take quite large doses for a Type 1. My morning dose is 20 units but I only need a small amount during the night, which is why I love my Levemir for allowing me that flexibility. I would never manage with a very long acting basal because of the disparity between day and night, but by adjusting each dose independently and changing the time that I take them, I can get pretty good basal stability to cover my needs and personally I have no interest in a pump for myself although I love to read everyone's reviews and reactions to them.

Interesting but very concerning that you don't wake up, especially when you are relatively newly diagnosed. How low do you need to go before you wake up or are you just going off Libre saying you were hypo? I think hypo symptoms are less obvious during sleep so sometimes your levels need to drop lower than during the day for your brain to respond and warn you. That said mostly I will wake up if I get to about 4 or high 3s (Libre will show me as low 3s or high 2s, but it exaggerates 🙄 )

Anyway, I wish you luck with your quest for a looped pump. As with all of us over the years for things like Libre, you need to make a good case for yourself... itemize critical points from NICE guidelines and maybe even document it in an email so that there is a paper trail and keep trying until you get a yes!

Yes, exercise is great for anxiety! My clinical psychologist insists on it; and even before I started seeing her I knew there was research showing the benefits of exercise for mental health. So, even if I can't manage to accomplish anything else all day, I try to force myself to get out for a walk or jog-- although sometimes it's a huge challenge even if the weather's good, let alone the sort of weather we've been having!

Of course the irony is that exercise adds an extra level of complexity to managing T1D. (There's that malevolent deity again!) As I've mentioned elsewhere, I managed to find, early on, expert guidelines on managing exercise for T1Ds on MDI and using a CGM; very helpful, but it would still be easier with a looped pump.

Regarding hypos: By the time I got my Libre, I had already found this forum and read lots and lots of posts! Including lots of people saying Libre can exaggerate.

So, whenever the alarm went off, the first thing I did after getting up was check my blood. Sometimes the Libre was underestimating my BG-- but sometimes it was overestimating. The lowest blood reading I've had was 2.6, and I didn't wake up until the Libre alarm went off. Ok, again, I'm still alive! But-- if my body doesn't wake me up when I'm under 3, I doubt it would ever wake me up.

During the day-- sometimes I sense when I'm going hypo, and sometimes I don't. So I test blood if either I feel I'm going hypo or Libre says I am. And I take Libre readings very frequently, and top up if getting a bit low between meals.

Of course, as Nonethewiser says, "the mental burden of Type 1" will always be "ticking away in background", no matter how good the tech. But the better the tech, the less loud the ticking. ; )

And now I've got to start preparing to get out for a jog before it starts pouring! Wishing you and all a warm, dry day.

 

[olliej96]

Ollie and Everyday, thanks very much!

I feel almost guilty about pressing for a pump (looped, of course) already, given that so many people grapple with MDI for decades-- and I was only diagnosed three and a half months ago!

But-- I suffer from a longstanding anxiety disorder. You may know the following, but I think not everyone does: Not all anxiety disorders can be cured, sometimes they can only be managed; and managing them can require a lot of work, because even minor everyday things-- in particular, even minor decisions-- can be very difficult and stressful.

Moreover, pre-T1D, the one thing I had no trouble with was food ... I like healthy food, I get a lot of exercise, I don't have any psychological problems with food, so that was one of the few aspects of life that was perfectly simple-- I could and did eat whatever I wanted whenever I wanted ...

So, if there were a malevolent deity who wanted to choose the worst possible disease to afflict me with, he'd choose T1D! ... I assimilated a lot of information very rapidly-- including from this forum! and e.g. doing the online BERTIE course before my team even mentioned carb counting-- and applied it; and my team got me a Libre 2 just 8 days after diagnosis. So I've already achieved quite good glycaemic control. But the psychological burden is enormous. Including but not limited to "the spectre of possible hypos", which looms especially large, I think, for those of us who live alone. And, with MDI, I'm pretty sure the psychological burden is not going to get much better with time; on the contrary, more like the Titanic heading for the iceberg.

I told my consultant and DSN straightaway, on the day I was diagnosed, about my anxiety disorder; and the last time I saw my consultant I had a little rant! Specifically about looped pumps and the NICE guidelines. He indicated that the guidelines are not always strictly applied, and that he would be happy to refer me to the pump team, but we needed to 'get all our ducks in a row' first. He arranged for me to do the carb-counting course asap-- I've already done the first part and will have the remainder soon-- and he said we'd discuss pumps again in the new year.

However, I did wonder whether he was just trying to placate me! So it's great to know that there is at least one real person, namely Ollie, who really has got a pump on grounds of psychological impact 'despite' good glycaemic control.

Now all I have to worry about is that the current dire political/economic circumstances might lead to a crackdown on pump funding ... But enough of that! And thanks again.

Anytime!

Good luck for the new year, it sounds like your consultant really does want to help your chances by getting some other bits out the way as you mentioned, especially the carb counting. It's a shame we have to jump through all the different hoops to achieve somewhat comfortability, but as I said keep pushing, keep asking your team questions. Always remember that things in time will improve as you're still fairly new to all this. You've got this!!

 

[SB2015]

Of course the irony is that exercise adds an extra level of complexity to managing T1D. (There's that malevolent deity again!) As I've mentioned elsewhere, I managed to find, early on, expert guidelines on managing exercise for T1Ds on MDI and using a CGM; very helpful, but it would still be easier with a looped pump.

I find that my closed loop deals very well with the day to day, and takes away a lot the work in those circumstances. It is not so good at dealing with extremes, such as prolonged activity or high intensity exercise. I have had to find my own workarounds for extremes, and tell the pump what it needs to know to get it to do what I want it to do. This takes a bit of working out and inevitably changes just when you think it is all sorted.

As @rebrascora said I was close to throwing my sensors out at the start of looping. I had pumped for 8 years and was very used to managing the various boluses, etc. The looping for me manages ‘normal‘ circumstances, without me doing much, apart from putting in boluses, but it takes some getting used to.

 

[VICTOR HILL]

not sure but Q was why did i get a pump many years ago 2006 kidney transplant so in year 2007 to help save my LIFE
i applied for and got a pump the NO ONE REASON not very good HBACI 1 results up in the 11/10/8/9/
control not so good busy working ..married 2 sons and 100 mile round trip commute to work tough still about today 64 on insulin