I hate my pump!

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Babysaurus

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Relationship to Diabetes
Type 1
Sorry to moan, but I think I need to get things off my chest instead of sitting here with watery eyes and feeling sorry for myself.

I have been on the pump since the 1st February due to being pregnant and being at risk of a serious hypo. While I love the accuracy of it, and things like the option of multiwave and extended dosage, I absolutely HATE wearing it with a passion! :( It makes me feel like I am ill, I am really self conscious of it (others don't see it but I can feel it) and if I am somewhere like a changing room, make sure nobody can see me get changed as I don't want them to see the cannula.

I know there can be much better control with the pump than there can be with pens, but my pre pump HBA1C was 5.3, and the one before 6.1 (with the pump its now 5.1) so I don't really feel as if that's much of an asset. I love the idea of no longer having to 'feed the insulin' before or during exercise, especially as plan to do the London Triathlon next August (and shift any baby blubber!), but at the moment I have found myself doing that anyway - me and the DSN are working on this, she thinks it may be that the basal rate isn't low enough (it was on 50% for an hour before and then set to an hour after exercise but now lowering it to 25% and perhaps even 10%) so maybe this will improve. The infusion sites are often uncomfortable - in the legs they seem to catch on things and / or bleed (one came off of it's own accord suddenly due to bleeding) and my middle is getting rounder and tighter so it feels more uncomfortable there too. I am reluctant to put them nearer my sides / hips too as I lay on them in the night and it can sometimes make it sore.

I realise I can give it back once the baby is born etc etc but am also not sure it's the right thing to do either! Am confused as to what to do and wondered if any of you can make me feel better with your pump experiences and points of view. Everyone else seems to love their's so am wondering why I seem to like it less and less.
 
Hi Babysaurus

A lot of what you write feels very familiar, and 4-6 weeks in I could have easily written something very similar.

BUT - many of the things that I strugged with at that stage I now feel completely fine about. Particularly the attachment thing which feels less and less weird by the week - and I'm only a few weeks ahead of you.

The first few weeks at the gym I felt quite self conscious - but made sure I didn't hide it away (impossible anyway). I even engaged people in conversation while checking the tubing for bubbles etc when reconnecting after my shower. No one has ever so much as batted an eyelid. If they are at all curious it just seems that it is so outside their frame of reference that it is easier to blank it than ask a question.

I'm hoping to write a compare-and-contrast blog fairly soon to get all this stuff out of my head so I've recently been comparing and contrasting results. My first A1c actually went up post-pump (not unusual) and while there are improvements between that and my 'best effort' on MDI they are not the complete transformation that some experience.

I have seen improved control though - and crucially I've seen more stability - almost no low lows or high highs. Not only that but the subtlety of delivery options suggests to me that further improvements are perfectly possible (for once I feel that I could actually try to run a 'little bit' higher rather than having to choose between 'verge of hypo' and 'double figures').You and I are still in the beginning phases of this don't forget.

Have you tried sets in your back? I'm having some success there and it gives me twice the area of abdomen alone. I can avoid my 'actual' sides so I don;t lie on them and use just in front and just behind, then as far back as I can reach one-handed. I'm not even going near my legs at the moment... No real 'spare' there and I know I'd just catch the cannula all the time with stuff in my (constantly full) pockets.

I would say hang in there. I'm reminded of a surprising piece of sociological research suggested in one of my fave YouTube videos of all time which suggests that if you compare the change of 'happiness' between people who win the lottery and people whom an accident confines to a wheelchair you initially see a dramatic difference (one rises massively, the other crashes). Then over time the happiness rating gradually changes until both end up more or less where they were to start with. There's an evolutionary advantage in being able to adapt well to a new set of circumstances. The time taken to return to 'normal'? 6 months. I'm sure it's a gross oversimplification... but it certainly seems to be working that way for me...

Pumping is gradually becoming my new 'normal'. I already found it a bit odd watching other people inject with pens when I met with Alan, Medusa and UKJohn a few weeks back.
 
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I'd add a couple of things to what Mike said.

Firstly, have you tried different infusion sets? Mine don't hurt other than once or twice a year when I feel like I've hit a nerve or something and I take it out immediately. If they're hurting, it could be that the cannula is too long - try a shorter version - or simply that you need a different style of set.

Secondly, re exercise. I lower my basal to about 20% around 90mins-2hours before exercise. Lowering it just one hour before would have me hypo, I need more time than that for the reduced basal to kick in. It might be worth lowering it earlier, as well as by a great %?
 
The jury is still out for me but hating the pump is a real possibility too. It does have a good side though so I'm trying to stay positive about it.
 
Thanks Mike for your long reply. It is very reassuring to read that someone felt the same as me, and not very long ago too. I am not too hung up on the benefits re control as my control was great to start with, and this does seem to be one of the main things people love about being on a pump. It was was interesting what you said about making sure you didn't hide the tubing etc in changing rooms and instead being very open about it - ironically I had exactly the same viewpoint with injections!

Alison, I think lowering the basal rate to two hours before may have to be done but I currently have to take it VERY slowly indeed in case of bringing on any highs (well, over 8 - which I never really thought of as 'high' before) due to being pregnant. Hence, it's tiny steps all the time. I have my basal rate lowered quite a lot in the mornings anyway, and then the carb ratio turned to a whopping 2.5 units per 4g of carbs (apparently insulin resistance is very high in the mornings with me, this is probably more to do with the pregnancy though) but I think more tweakage will be needed. I guess I am just sick of thinking about it all the time, hence today's gloominess. I have perked up a little bit though so thank you both once again.

Ypauly I'd be interested to hear how you get on in the coming months. How long have you had yours? And why did you get yours in the first place?
 
Babysaurus said:
Ypauly I'd be interested to hear how you get on in the coming months. How long have you had yours? And why did you get yours in the first place?
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I have had it a couple of months now, I have it because the consultant thought it a good idea and with all the good stuff I have heard I thought why not try.
 
ps Mike, I am reluctant to use my back as I can't currently sleep on my front so don't want to limit it to just my sides!
 
I don't really understand why you guys are dissing pumps! There are many people out there that are desperate to get a pump but for one reason or another can't get one. If you don't like it...give it back and maybe somebody who can't get one, might! Go back to 4 or 5 injections a day if you prefer....somehow I don't think you will...look at the positives of a pump and be thankful for getting one......sorry, but it has to be said!
 
I think a pump is a step too far for you at this time. Diabetics have been using an injection device for years and years with no probs. My HBA1C is 5.1 and has been for a couple of years (Nova Pen), this is down to paying attention to my readings and acting accordingly. I am pretty shocked you are on a pump expecting a baby, I would have thought baby first then start on a pump. Sorry.
 
Phil, you sound like you are having a go at me for not instantly loving my pump. I can't help the way I currently feel, if I could I would! I am more than aware that lots of people are waiting for them or can't get one, that is not my issue. I also realise I can give it back, and I did say I was considering that. However, at the moment due to the pregancy it would be a bit stupid to do this immediately but I may well be considering doing just that in due course if I can't warm to this more.

Austin, the reason I was fast tracked onto the pump was due to being pregnant but also losing hypo awareness due to the right control I was managing (tight control = good, no hypo awareness = bad, especially as I was having to wake myself every two hours to check. Nothing's bloody simple, Ive found!)
 
Phil65 said:
I don't really understand why you guys are dissing pumps! There are many people out there that are desperate to get a pump but for one reason or another can't get one. If you don't like it...give it back and maybe somebody who can't get one, might! Go back to 4 or 5 injections a day if you prefer....somehow I don't think you will...look at the positives of a pump and be thankful for getting one......sorry, but it has to be said!
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Yes, but it doesn't necessarily follow that just because obtaining one was relatively straightforward you are bound to fall in love with it. As with anything of such a personal nature, it will take people different amounts of time and circumstances to decide whether it is for them or not. I know of people who fought hard for pumps and then ended up giving them back.

Interestingly, we have had members on here who were due to go on pumps but because they became pregnant the pump start was postponed until after the baby was born, and clearly we have cases where the opposite happens! There is no consistency, it seems.
 
Hi
I've had my pump for a year now and have found that my love/hate relationship with it tends to go in cycles!!
It got thrown across the room the other week coz I was so fed up with it!!:( Luckily, it was fine (even the rep knows I threw it) and was put back on the next day. I know, I know and have promised not to leave it off for so long again!!
My HB1Ac has improved on the pump - down from 11.4 to 10.1 - and my sugars are getting lower. But my sugars were totally unstable before I got the pump and we're still guessing at what my rates should be (I was only on 2 injections a day before the pump).
In the last year I've only had 2 canulas come out at the wrong time - my niece accidentally pulled one out (ouch!!) and I woke up on Sunday with it having come out sometime during the night. But at least that explained the high!!
I just tend to wear mine in my belly - think it would hurt too much in my legs. But why not ask if you can have a meeting with the pump rep? Mine had a little picture that showed all the places that you could wear it and yours might have the same. You might be surprised by how far back you can wear it. Plus, there's also your butt - higher up that is rather than the bit you actually sit on!! :D
As for wearing the pump, I generally tend to wear trousers/jeans so I just clip it to my waistband. However, I do have a gorgeous dress that I want to wear but my pump would be too obvious :(
In bed I just tend to let it roam free but have now started to wear the actual pump in a soft phone holder - it tends not to hurt so much if I actually sleep on it.
I've only had one person ask what my pump was (on a girls night out!!) - they thought it was some kind of hearing aid and only spotted it coz it was clipped to the v on the back of my backless dress.
However, I have flashed my belly and canula to lots of people!! I showed it at work on Sunday coz they were asking about my diabetes and how I treated it. Besides, here in Scotland fewer people have pumps than in England, so I'm trying to spread the word!!
Feel free to message me if you ever want to discuss things further. I'll try to give you a balanced view - especially on one of my off days (which today is :( )
Phil65 - there's more to this than just hating the pump and going back to injections!! I got my pump because I'm needle-phobic and struggled to inject insulin. I struggle less with inserting my canulas and now intake more insulin than before. However, being attached to a piece of equipment is a constant reminder that I am no longer 'normal'. There again, I don't think I've accepted that I'm diabetic and blame this stupid condition/disease for loosing my job. Since then I've felt worthless and just want to cry all the time. (I have requested an appointment with the psychologist but the nearest one is 60-odd miles away and it's difficult to get a referral!). I prefer being on the pump than injecting but would rather not have this at all!!!! Even us pumpers are entitled to having periods where we struggle with our treatment - like everything, there are advantages and disadvantages to having a pump!!
 
I love my Pump. "A LOT" happier than 4 a day ! I eat when I want to eat & what I want to eat ? 😉
 
I knew my previous post might stir up a little controversy...I am not going to apologise for what I posted, after all it is a forum, and is only my opinion (albeit a passionate one)...of which I am entitled to. Nobody is made to go on a pump, the day I got a pump was for me..... life changing, I embraced it with enthusiasm and accepted it as a challenge, after all I worked hard to get one (even though I had good control on MDI). It was tough at first, almost like being diagnosed all over again, but was it worth the transition and hard work?....absolutely!! My control and A1c is better than I could of ever achieved on MDI, pumping as we know it is not perfect yet, but the technology is sure to improve and is the closest I will ever get to a fully functioning insulin producing pancreas. I still haven't met or spoken to anybody that has handed their pump back in and reverted back to MDI!
 
suzie, I think you put it really well. At the moment I do feel as if it is a constant reminder, which isn't something I felt with MDI. Hopefully I'll get over that one eventually!
 
I like that post a lot better Phil :D

I think you've hit the nail on he head - pumps aren't perfect, but they are the best we've got. I would not give mine back (at the moment anyway) as the pros far outweigh the cons for me... But there *are* still cons and I can't honestly claim that it's all completely perfect and trouble free all the time.

How long have you had D Babysaurus?
 
When you'll already pregnant isn't the best time to start pumping... As there's no way you'll going to set it up properly at all... Partly because your needs are bouncing around from day to day, so what was a good basal rate yesterday isn't going to be today or if it is, tomorrow will be a totally different story.... Then it isn't practical to do the necessary fasting tests you did to do for fine tuning the pump, as empty stomach and pregnancy doesn't go hand in hand at all...

BS, I would ask your DSN or Pump rep for several different samples of infusion sets to try out, if you can feel them or they feel sore etc then you'll using the wrong one for you... Perhaps try one of the angle ones you'll need to self insert these but self inserting is no different than injecting... Good thing about them is that instead on sticking into the under layer of fat, the go along is so you don't need much fat underneath to stick them into, I'm very skinny with no real fat layer but I find with a tenderlink telfon angle set, I never had a problem in 4 years of pumping..

In some respects I agree with what Phil said, it is frustrating after you faced a battle to get a pump to find somebody who's got a pump a lot easier do nothing but moan...

But I've have drawn a conclusion concerning the whys of it..

There pump experience isn't a good one, based on two factors;

Lack of knowledge, and they struggle with the learning curve of it all..

or

Unrealistic expectations, they think it's a plug and play piece of kit, and it going to resolve all their problems without having to really work at it... So get a bit of shock when their expectations are met.

Their is another factor that sometimes croup up from time to time, that's the sheer believe that they can eat what ever they want so attempt to eat large amounts of carbohydrates and expect that they can control said amount of carbs, then get angry and frustrated when they can't... We all have a sweet point of carbs that we can eat and control.... Go above that you'll don't stand a chance of control.
 
Ellie, my DSN, endo doc and the consultant all suggested the pump during pregnancy as it makes the fluctuations in blood sugars easier to manage and tweak if neccessary. This is also written in the info you get for the Accu-Chek Combo before you get it. I'd like to think that their combined experitise all coming to the same conclusion means that going on a pump during pregnancy is, in fact, a good idea. I was initially against the idea as I was fine on with my pens, but things started to get a bit more delicate when I got to the 16 week mark.

I am not sure if any of the reasoning you gave for why people don't like their pumps was meant to include myself but let me assure you, none of them fit. I have been a very well controlled diabetic for most of my life, and injections did not pose a problem to me until now. As I say, it looks to be the pregnancy side of things that makes things tricker and there is less room for error than there would be normally.

As for your cannula suggestion, I was told by both the rep from Roche and the DSN that the one I am using is the only option for the moment as I cannot risk any problems and high blood sugars. I cannot always feel them, but I am aware of them, if that makes sense.

Lastly, as for the 'nothing but moan' about having a pump comment, you will find that this is my first post mentioning anything of the sort.

Everydayupsanddowns I have been diabetic since I was 4 (32 years!) Up until very recently I have more or less self managed (and very sucessfully) on multiple injections a day. I can get my head around the pump side of things okay, how it works etc, but I think it's just the attachment thing. I guess like Suzie said it reminds you that something is wrong. As I have previously been injecting since I was 4 with no issue whatsoever, that seemed my idea of normal and now this is taking some getting used to as an alternative. It was great to hear that you felt similar only a few weeks ago. Its not the understanding and tweaking with me as much as the fact that is it there all the time. Perhaps I am being too hard on it as it's not been long at all since I've had it, and I am comparing it to 32 years of injections, so it will take a bit longer for it to become a non-event.

Phil, I agree that your latest post was certainly nicer! 😉 While nobody is forced to go on a pump, at the moment it is the best thing for me to keep things on a level as they are easier to tweak. My DSN said she has yet to have someone give their's back, and while I can see why I think it is still taking me a while to get used to wearing something all the time. By the time I have this baby I may want to cling onto it for dear life, and I can indeed see the pro's outweigh the cons but as my cons, pre pregnancy, were close to non existent it is taking a while to get into this mindset.
 
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Think we'll have to agree to disagree there Elliejones. None of your suggestions apply to me, and I've not had an instant love affair with the pump. I like mine, and want to keep going, but it's not all sunshine and roses.

I understand others frustration given that pumps are hard to come by, but I don't think expressing frustrations with some parts of the pump experience should be forbidden
 
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