Am I being incredibly stupid?

[DeusXM]

I've just got a letter through from my clinic asking me to come to the Insulin Pump clinic on Wednesday. Now, I don't have an insulin pump, so it looks as if the NHS is offering me a pump - yeah, that means it looks like I'm being offered a free insulin pump.

However, I'm seriously considering turning down the appointment. Firstly, it all seems a bit rushed - they sent me the A1c blood test form and the paperwork to keep a week-long food diary on Friday. Now, I'm no maths genius but if you want a week's worth of food recordings from Friday, you don't ask for it by Wednesday!

Secondly, I haven't actually been asked whether or not I want a pump - I made it very clear at the carb-counting workshop I was merely thinking about it and was really only considering it if Lantus didn't work out for me. I don't like how I've effectively been 'summoned' at the last minute.

Thirdly (and perhaps more relevently), I'm just not convinced I want a pump. I am getting reasonable (if not perfect) control on MDI right now and my lifestyle simply doesn't seem to be one that fits too well with being permenantly attached to a piece of tubing. I've asked before how people here cope with things like gigs or whatever where you're going to get knocked about considerably and it seems to be something that no-one else here has had to deal with, possibly because you actively avoid stuff like that. Plus I'm just not massively happy with the idea of being permenantly attached to something. I like being able to carry insulin in my pocket and not worry about it for the rest of the time.

Basically I'm thinking of cancelling this appointment because it's at too short notice and it's for something I'm not really that keen on having anyway - am I being incredibly stupid for turning down a free pump (even if it's something I don't think will be of much use to me) or am I right for sticking with what currently works for me and letting someone else have the opportunity?

[2high]

To be honest Deus, no, I dont think you are being silly at all. I'm obviously pro-pump, I'm starting on one soon, but its a commitment, and you need to be ready for it. It has to be something you really want to do, and if you are fine on MDI then why change?? "If ain't broke, don't fix it".

Also, less than a weeks notice is WAY too rushed. For me, pumping was something I had been thinking about for two years and really wanted. 5 days is crazy.

IMHO, you should cancel the appointment and reschedule when and IF you change your mind.

Kit.

P.S.... when I saw your name under the title "Am I being incredibly stupid?" I couldn't help but have a chuckle... lol Sorry...

[Diana]

Well, if they are offering you a free pump I would go. If you tried the pump and hated it you could always just stop using it, and at least you would have the option of using it again at a later date if you want to, without having to pay for one. I guess you can never know if pumping will suit you without giving it a go, but most people who have pumps do like them. I hated pumping at first, and gave it up for a few years after only a brief go. But a couple of years down the track, I pulled it out of my closet, got it connected back up, and have stuck with it ever since.

It sure does seem like short notice, but I would go anyway, just to get the pump. Remember, just because you get one doesnt mean you have to stay connected to it forever more. And if you feel terrible about getting a free pump then not using it, you could always donate it back to the hospital if you really felt that strongly about it.

So, in short, yes, I think you would be crazy not to go and score a free pump. I understand how you feel about it being so sudden though. Good luck with your decision.

[xMenace]

Get on a pump. It offers the best control and flexibility. Knowing what I know now, I'd have been on the very first ones.

[Gordonm]

Thirdly (and perhaps more relevently), I'm just not convinced I want a pump. I am getting reasonable (if not perfect) control on MDI right now and my lifestyle simply doesn't seem to be one that fits too well with being permenantly attached to a piece of tubing. I've asked before how people here cope with things like gigs or whatever where you're going to get knocked about considerably and it seems to be something that no-one else here has had to deal with, possibly because you actively avoid stuff like that. Plus I'm just not massively happy with the idea of being permenantly attached to something. I like being able to carry insulin in my pocket and not worry about it for the rest of the time.



I had the exact same concerns and put it off for years. I have been on a pump now for 2 weeks and it has not been an issue at all. It takes about 1 day to get used to it. No big deal to be permanantly attached to it. I work in a lot of industrial plants and am constantly bumping into things and around heavy machinery, a lot tougher than any dance floor. I have a friend who is a plumber who is constantly crawling around under over and through tight places. It is very tough. Yea I try to be a little more careful now that I'm wearing it but it is no big deal. You are doing nothing more than anyone else here has not done. People wear these things everywhere with no problems. You will be much happier with it. My A1Cs were always in the high 5s and low 6s on MDI. I just wanted a better system. This is it. If it were for free Iwould definitly try it. You have nothingto lose.

[Scratch]

If I were you, given the opportunity to try it for free, I'd give it a go even though I probably have the same reservations you listed.

The whole idea of having a site with tubing sticking out gives me the heebie jeebies oddly enough, but I also figure that there are pumpers who have felt that too, and ended up converting. So for free, I'd try it.

[Funnygrl]

I would definately try it! I don't think it's stupid not to like a pump, but I do think it's stupid not to at least try it when the opportunity is right there! I remember a previous thread about your reservations, and I think many of them will prove to not be a problem if you give it a try.

[notme]

Put me down as one who thinks you should just go and listen and then decide. It may seem rushed, but what have you got to lose???

[BriOnH]

The only reason I'd see not to try it, if it is truely being offered at no cost, is it would mess up your control for a little bit in the conversion process. Other then that, what's to loose? At least if you try it you can just validate what all us MDI'ers don't want; a leash. :)

[JanTx]

What about supplies? DOes the NHS ocver them at no co-pay?

[Stuboy]

i think maybe you should go to the appt. and see what they have to say... it doesn't mean you have to accept the pump. Maybe you can go through your thoughts about it with them and see if they can offer you any advice that's worth taking? A free pump has gotta be worth looking into right?

[Harold]

Like you I would hate to be pushed into it. However with the problems you have talked about, in the past, with Lantus causing depression it might be time to reconsider. Depression often comes on very slowly and unnoticed. Have you felt depressed, even if it's just a little? Maybe the person that referred you thinks so. No depression, I would try to put it off for 3 to 6 months to get use to the idea, and to get a better idea of how the Lantus is affecting you.

[DeusXM]

Ok, based on what everyone's said, here's what I'm going to do.

I'm going to ring the clinic tomorrow and explain a few things - namely they've given me such short notice that there's no way I can get an A1C done in time, and I am not about to make any changes to my treatment regime until I've seen how my A1C has been. They do seem to take the attitude that A1Cs are for their benefit, not mine - I remember the rigmarole I went through last time I was given an A1C form too late. I phoned up a week later for my result, only to be poked around every department and forwarded to the receptionist at my local GP's, who then helpfully told me it was 'satisfactory', before I forced her to tell me the number (7.2). I had much more luck the second time around when I had the test done properly prior to my appointment (6.8).

The other thing I need to explain to my care team is that I don't carb count, and I think this will rule me out from the pump. I took the carb counting workshop but to be honest I find carb counting incredibly impractical. It's all very well adjusting your dose to your carb intake but I have a massively fluctuating carb ratio and half my battle each day is working out exactly what my body's doing. A pump is going to complicate that.

But yeah, I'll go to the appointment but I'm going to make it clear that I don't think I'm ready for a pump. I realise that this probably sounds like heresy here but it is really, really not going to fit in with my current lifestyle. I regularly end up in situations with 100 or so people falling on top of me (I'm at the front of some pretty violent punk gigs every month or so) and I'd feel a lot safer with an insulin pen safely capped and zipped up in my pocket than having tubing and a canula in my side.

Of course, if my A1C is bad (over 7.5, I'm giving myself a little leeway because of some recent problems), then I'll be much more interested.

[Sharps]

The other thing I need to explain to my care team is that I don't carb count, and I think this will rule me out from the pump. I took the carb counting workshop but to be honest I find carb counting incredibly impractical. It's all very well adjusting your dose to your carb intake but I have a massively fluctuating carb ratio and half my battle each day is working out exactly what my body's doing. A pump is going to complicate that.


I think you may find that The Lantis may be complicating that -- before I went on the pump I had two different carb factors that worked ok but after I started the pump and started tuning my basal rates I only use one carb factor all day. The Long acting was over doing it at some times of the day and not enough other times, so my carb factor made up the difference. I would say give it a chance, You may like it and if you don't you can always go back to MDI.

[DeusXM]

Nah, what I mean is that whilst obviously my carb ratio varies during the day, it also varies greatly from day-to-day. For instance, I can spend all of Friday around the 1:5 mark and then on Saturday it can be nearer 1:20. I also very actively adjust my basal dose too - I vary between 22-30u of Lantus a day dependent on what I'm doing, have done or am about to do.

[Gordonm]

Nah, what I mean is that whilst obviously my carb ratio varies during the day, it also varies greatly from day-to-day. For instance, I can spend all of Friday around the 1:5 mark and then on Saturday it can be nearer 1:20. I also very actively adjust my basal dose too - I vary between 22-30u of Lantus a day dependent on what I'm doing, have done or am about to do.

I did the same thing for years and was always eating up a storm on the weekends. The pump will allow you to program in different ratios for different times. I have not got mine down totally yet but getting closer.

[Stuboy]

i dont understand how you bolus without counting carbs and have "perfect" control?

please explain? maybe i can try it out too sinse my evening numbers are nearly always high after meals because i can't count the carbs properly. How do you do it?

Oh, im not being "funny" about it, im genuinely interested!!

[rzrbks]

Heresey or not, you Have to do What YOU are comfortable with.............................................. ..................period.

[DeusXM]

i dont understand how you bolus without counting carbs and have "perfect" control?

Sorry, may have phrased things badly - what I meant was I don't get perfect control but I get reasonable control. I dunno how I do it, it's kinda hard to explain. But basically I get a feel for how much insulin I'll need based on what's on my plate in front of me. I don't carb count in as much as I'll weigh out how many carbs there are in a meal - I just look at it and instinctively know. Put two different meals in front of me and I won't be able to tell you how many carbs are in either of them but I can tell you which one I'll need the most insulin for, and by how many units.

Carb counting can work but I do worry that people get dependent on it and seem to trust in it too much. How many threads are there on here about people struggling with restaurant food or Chinese takeaways or pizza because they can't carb count for it? I don't worry about stuff like that - I just 'know' that any food I haven't cooked myself will for some reason have magically more carbs in it and I'll know I just need to take a bit more. Because I don't carb count, I don't unconditionally trust a formula. Carb counting is at best a guideline and nothing more. It relies on an equation with only three variables in it (carbs, insulin and current BG) whereas straight off it's obvious there's at least 5 visible ones (exercise and GI) and god knows how many unseen variables (alcohol, stress, temperature, mood, current level of 'fullness', orbit of moons round Saturn) that have a very real and dramatic effect but can't be measured in such a way to put them into a nice handy equation. That's why I don't carb count - life is too short for me to waste time doing an equation that's going to be wrong anyway, so I draw on my experience and go with that instead.

That's another reason why I don't want to go on the pump - I sorta know what I'm doing right now and I really don't want to have to relearn everything again for the sake of shaving off 0.2 off my A1c. Simply put, I don't manage my diabetes intensively enough to get any real benefit out of a pump.

[xMenace]

I got 911'd at age 34, 11 years ago. I'm up to 5 now and cross my fingers I'm done with that. At that age I lost my ability to 'feel' my lows while sleeping. They are now tough to tell when awake. That adrenal gland is subject to old age too, and they never tell you about that until it happens.

Enjoy your youth ... within reason :) :tee:

[am1977]

I think you are being a little foolish not attending the seminar/clinic.. I feel that you would be more wise to keep an open mind about it and at least get more information. Who knows, maybe something you learn about pumps will change your mind about wanting to pump, but, by not going, I think you limit yourself in, ultimtely, finding a better way to manage your diabetes. Also, don't forget, that even if you go, doesn't mean you have to start pumping- you can still say NO- but getting additional information about what pumping entails doesn't hurt.

Frankly, I think you should give it a shot (no pun intended). Many people would love to have a tool like the pump to help manage their disease, but for whatever reason, they can't utilize it. You are given this opportunity & a FREE pump- why not try it. You can always go back to injections if it doesn't work out.

Good luck with your decision. :)

[Funnygrl]

I totally agree with Am.

[LiveNormal]

DeusXM, this would be a dream come true for me if I am given the opportunity.

Like all others have said, go get the pump and whether you will like it or not comes later when you have actually tried it.

Honestly, I don't do carb count very well too. All I have gone about is just guestimation when come to how much to shoot at mealtime. My control is not perfect but acceptable given the guestimation skill I have applied. I feel lucky when I am able to hit the jack pot but feel miserable when misses it. I also don't like to being feel hypo unawareness as what xMenace has pointed out. My dear husband has been dead worried about me going unawareness when he is not around as he has seen the worst of me going low and act strangely. I have demonstrated that to him countless times. As a result, his travel plan, if plan without me, always have to go around my sisters/friends’ schedule. I am in any way an independent person but this is the only time when I find myself handicap and not feeling confident about myself. So if pump can help me gains back my unawareness, I will run for it.

How much dislikes it is to be hooked up to a device all time round is a secondary issue to me. I believe what is more important is to be able to live reasonably healthy to see that when a cure or a better alternative to pump is available, I am still a candidate to try it. To not like to be disturbed on how you are currently doing “carb counting” is just a matter of resistance to change in all human nature. For me, I welcome the change if it means more flexibility in lifestyle, better control in my DM and a more predictable me.

I am in a much worst position than you when come to types of insulin used in MDI: NPH and regular. They are known to stay longer in body, with more unpredictable peak time and site absorption rate. I tried to sleep in when comes to weekends but always ended up in high BS. To mimic what pump does, I split my morning dosage into 2 parts, deliberately wakeup 2 hours earlier to give 1/3 dosage and back to bed again. With this, my BS seems to be able to level off at reasonable range before and after my 1st meal of the day. Again, I am taking a risk here since I am hypo unaware. But at times, I just want to be able to live more normally and I don't mind the risk.

I miss the time when I can sleep in late in the weekends, I miss the time when I can just say ok I need to watch my weight now and skip a meal or two in a day, I miss the time when I can handle delaying the lunch due to a late dismissal morning meeting, I miss the time when I am able to stay back and help my co-worker trouble shoot a system error right before lunch time.. there are 101 things that I miss doing before DM and hopefully with pumps, I can live normal again…

To make long story short, I think it is being stupid to reject an opportunity to live DM from another perspective. You may like it after all!

[Stuboy]

ahh i see what you mean... i guess you do the same sort of thing as me then.

I mean, i can't weigh most of my evening foods. i just look at it and estimate how many carbs in each "big" thing on my plate, eg, a jacket potato i say 50, a plate of pasta i'd say about 70, etc.

The only thing i do weigh is my breakfast cereal and measure the milk... it seems to work well, most of my morning readings are nailed. except now cuz im ill.

Perhaps a pump wouldn't be ideal for you then. But i still think it would be interesting to find out what they've got to say and why they think you're ready for a pump?

[DeusXM]

To make long story short, I think it is being stupid to reject an opportunity to live DM from another perspective. You may like it after all!

The problem with your point is that you're coming from a position based on NPH and regular. I'm not. I'm coming from a much more flexible situation. ALL of those things you say you can't do at the moment - I can. I'm on Lantus and Novorapid. I can sleep in late, I can eat what I want, when I want. I can skip meals. I can scuba dive, I can drink beer. I can spend 29 hours awake hurtling through foreign countries on a train. I have full hypo awareness.

You don't need a pump - you need to get onto modern insulin therapy. I used to have the exact same problems as you when I used to be on Insulatard - I was having 8-9 hypos a day and I was falling apart. But a pump wasn't the answer, changing my insulin was.

I'm not resisting change out of human nature - I'm resisting it because a pump will offer me absolutely nothing over my current regime and could potentially cause far more problems.

Having spoken to the clinic this morning they've told me this is about 'assessing' my suitability for a pump. So I can tell everyone straight off that I won't be offered one - there's no way they're going to offer me one at this stage in my life. I've had the appointment postponed so I can get all the information over to them first - as I've said, I refuse to make any changes to my treatment regime until I've been able to look at what my current one is acheiving.

[Cyborg]

Deus, I know you are apprehensive about pumping and it sounds like you have reason to be. There are ways to not be tethered to the pump all the time.

If you get a pump, is it yours to keep? Are you obligated to continue to pump?

[xMenace]

When I look at my basal rates
- 12am .6
- 5am 1.5
- 8am .7
- 5pm 1.2

I shudder to think of the control I had with Lantus. Unless you are pretty flat, you do have gaps somewhere.

[jen_slc]

Having spoken to the clinic this morning they've told me this is about 'assessing' my suitability for a pump......as I've said, I refuse to make any changes to my treatment regime until I've been able to look at what my current one is acheiving.So if you've postponed the appt, does that mean it will happen sometime in the near future, when you've been able to prepare for it, or does it mean you've postponed it indefinitely? I hope you take the opportunity to go. Like you've said, you won't be getting a pump straight off, it's an assessment. Exactly what you would want before you committed to trying out something like this, right? So, being an assessment, maybe the docs will help you see where it can offer better control (possibly more than a 0.2% point drop) but maybe the docs will think it won't offer you a significant advantage and recommend not to switch from your current regime.

I understand where you are coming from. When I decided to stop pumping I was afraid of the backlash/resistance I'd get from everyone around me, including my diabetes team. I thought everyone on the planet believed the pump was a godsend and that I was crazy or was asking for death if I quit pumping. It was quite the opposite. While yes, there are some people who think it's impossible to have great control without a pump, it just doesn't work for some people and my team understood that. I am in much better control since having come off the pump and subsequently I am that much happier.

But having said that, I would not discourage others from considering the pump as another alternative. And that's all this appointment is, a consideration, an assessment. The docs may think it will offer you much improvement but if you don't think it's worth it or will fit into your life, then don't, it's up to you. I have a few problems with my Lantus that the pump may fix now at this point in my life, but it's not enough for me to return to pumping. And just because something might be free (in the future if the docs think pumping is a good idea for you) or somebody else might kill for a chance at pumping, doesn't mean you have to do it. But I would suggest you go to the appt at least. And then you can walk straight out and say 'nope, it's not for me'. Done deal, nothing lost. :dontknow:

[DeusXM]

The appointment's postponed till the next pump clinic in December. Evidently there must be several people in my PCT on pumps, otherwise there wouldn't be a separate clinic. This comes as a bit of a surprise to me.

Don't get me wrong, I'm sure for some people the pump is the greatest thing ever. But I really can't see it fitting in with my lifestyle. The end goal of my entire treatment regime is that I make sure diabetes doesn't affect my life. That means maintaining a good A1C but it also means making sure I don't have to work particularly hard to acheive that. Having something permenantly stuck in my side...I dunno, that feels like a total negation of what I'm trying to acheive here.

In 10 years' time or so when my life will presumably be slightly less active and for want of a better word, 'rough', then I might consider a pump. But right now I'm too busy making the most of my youth to start tethering myself down.

Actually I have to say, the more I've thought this through, the even more convinced I've become that a pump really isn't for me. I just don't seem to have the problems that other people have solved by going onto a pump. I guess I'm just very lucky.

[Gordonm]

If you are not wanting it to work you will not make it work. You have to want to make it work. Like anything else, if you go into with an attitude of "it is not for me" you are going to find everything negative you can about it. I had the same attitude for years about the pump. It has changed. I find I am not tethered to diabetes more now that I'm on the pump. I had great control on MDI, A1Cs in the 5.6 to 6.2 range so that was not the reason to do it. If you want to wait until later in life that is up to you. God luck with what ever you decide to do. I am happy I went on the pump but it is not for everyone.