First week on the pump - any advice...

[curlygirl]

Well it is almost a week since i started on the pump and quite honestly i feel drained and a bit disheartened as i really don't feel any closer to starting to be sorted than i did on monday. Don't get me wrong, i really appreciate having the opportunity to try a pump and i am still determined to work hard to get to grips with it, i just could do with seeing some progress to encourage me a bit.

One thing that i wonder if anyone else has experienced when switching to a pump is that i am feeling some anxiety and serious lack of confidence when bolusing. I think it is the 'remote' nature of the process - when injecting on mdi, the needle is there, in you, the pen is in your hand and you physically inject the insulin - it feels more real somehow than putting the numbers in and saying 'ok' and that's that - the insulin has been delivered. It's probably something people get used to, but at the minute it has fed an anxiety in me, making me think, 'have i put the right carbs in' 'did it say 2units' etc which i am finding a little un-nerving.

I was told to work on getting the overnight basal rates right first and a few nights ago i thought i was beginning to get there to a degree, but then last night my blood was 13.4 at bedtime. I think perhaps some people would put a correction in, but as i am yet to get the settings right i was not really confident enough to do this and then go to sleep. Should i have done a correction? Instead what i did was wake and test a couple of hours later in the hope it would have come down by itself and when it hadn't, i changed the basal profile up to the one they started me on(rather than the -20% one that i was told to put it on overnight following several nights of hypos). The result is a 5.6 this morning so i guess that is ok. I just feel like i am reacting to my blood, rather than feeling in control of it.

If i understood why it was so high last night that would at least be something to work on, but as i am deliberately sticking with the same amount of the same food to try to minimise the large amount of variable factors, i can only attribute it to the 'laws of diabetes' - one of which being that you can do the same thing, but get completely different results from it for no obvious reason sometimes!

Anyway, if anyone has stuck with reading this to here i thank you very much. Any thoughts/advice/encouragement would be appreciated.
Curlygirl

 

[everydayupsanddowns]

Haha! YES!! I remember this phase very well Curlygirl. You are certainly not alone and it definitely DOES get better.

Someone told me that moving to a pump from MDI gave them the feeling of being newly diagnosed all over again (not knowing whether this or that was 'felt right' or what to do next). I completely agree!

Here are some of my thoughts a from the time...

From this... http://www.everydayupsanddowns.co.uk/2012/01/pumping-for-two-months-little-bit-of.html

To this... http://www.everydayupsanddowns.co.uk/2014/06/the-i-can-of-insulin-pumps-diabetes.html

 

[Maryanne29]

Definitely know what you're feeling! Been there. The anxiety with bolusing is understandable as it's such a different way of doing things. I had been on injections for over 54 years when I switched to a pump and to be honest it was terrifying - a big life change.
It's very early days for you still but I hope you persist because I'm confident you'll get to wonder how you ever managed without the pump. Keep asking questions and experiment slowly with changes to basal rates. As long as you've got emergency jelly babies, or whatever you use, you will be ok.
Pumps are great but you do have to build up a trust that they will do what you need them to do. For my first few weeks I didn't believe the basal was going in every three minutes unless I heard the sound the pump makes at that time. I got over that though, thank goodness.
Stick with it Curlygirl. 🙂🙂🙂

 

[Aoife]

EDUAD is right, it's exactly like being newly diagnosed! It's difficult but as far as bolusing goes you need to trust your pump, I don't even look at how much it's giving me know, just enter carbs and go.
The basals are the hardest bit as the pump gives so much flexibility that it's easy to over complicate things. Plus the overnight basal testing is actually exhausting but once you have that sorted then things get easier, just remember sometimes things will change for no discernible reason. You will get unexplained highs and lows and you will have to tweak things from time to time.

It will be worth it in the end, just resist the temptation to throw pump / meter across the room in a fit of rage, it doesn't do them any good!

 

[curlygirl]

Thanks everydayupsanddowns, Maryanne29 and Aoife, your answers are much appreciated and give me hope that things will improve and that this stage is 'normal'.
This morning i did my first full set change of cannula, tubing and cartridge (i just did the cannula 3 days ago as instructed). I felt rather stressed doing it, but i got there and presumably this will get easier given time and practise.

I know you have to learn to trust the pump and also trust myself that i have inputted the figures correctly etc. Hopefully when i get through this early part and feel less exhausted and in a constant state of high alert then the whole thing will seem worthwhile.
Thanks again for taking the time to reply - it means a lot.
Curlygirl

 

[Sally71]

Hi Curlygirl

Not exactly the same for us, we got a pump only a week after dx so everything was still new then anyway! But would like to add that yes pump refills do get much much easier with time - at first hubby and I would do it together and it would take 20 minutes, now I could almost do it with my eyes closed and get it done in less than 10 minutes!

I would definitely correct a 13 at bed time, but I can understand your reluctance at the moment while you are still getting everything adjusted correctly! As other people have said, get your overnight basal correct first, then daytime basal, then when that's correct you can tweak your ratios. If your basal is out then nothing works! It's hard work but you'll get there, keep in touch with your DSN regularly.

I've also heard people saying that they don't like going to bed with bolus insulin still active, my daughter has no choice though and it doesn't seem to cause any problems. She goes to bed at 8.30pm and we usually set the bolus to run over an hour so she would have to eat no later than 3.30pm to make sure all of the bolus was gone by bed time! The key is to get the pump set up as accurately as you can and then maintain it as best you can (things need tweaking from time to time) and then it will look after you wonderfully. It takes time to get there though so please try not to feel too disheartened, it will pay off in the end! Good luck 🙂

 

[m1dnc]

I can only reinforce what the others have said; it's like starting again, but the frustration and feeling of helplessness will be overcome and you will never want to go back to MDI.

NOW I would correct a 13 at bedtime, but not when I first started. You have to remember that the object of getting the basals right is to keep your BG as flat as possible during the period concerned. If you went to bed at 13 and it stayed at the same level all night, you're well on the right path. The next step would be to make a small proportionate increase in each basal increment through the night. Perhaps then you would go to bed at 10 and stay at a similar level overnight. Another small increment change would bring you a little closer to the desired level, and so on.

You will get there! And let us know how you're getting on.

 

[HOBIE]

It took about 2 months to get sorted but really really love my pump. I do not use the remote at all & prefer to use the buttons. Everyone is different & DSN normally run them high till they now how you are getting on. Good luck 😉

 

[curlygirl]

Sally71, m1dnc and HOBIE - thanks for taking the time to reply and share your experiences, it really is appreciated.
Curlygirl

 

[heasandford]

I can't begin to say how much I love having my pump now (nearly 18 months) but recognise the hard work and thought-changing it has taken!

I think I expected everything to be so much better immediately, but of course that isn't so. I am still making mistakes, and having lots of ups and downs, but the control it can give leads to much better results overall. You are in charge, and can demonstrate that to the medical profession without them being able to disagree! Do it at the speed you feel comfortable with, a short period of time with rubbish results will disappear compared to the results for the rest of your life. And keep posting on here, there is such a wealth of experience and they are more than happy to help you, I have found it invaluable.