I'm all hooked up..!

[Marmite-lover]

So today was the big day that I had my pump fitted!

Last week I had been given all the mountains of booklets, paperwork and also the pump and cannulas to have a little play with. So although I haven't had the pump delivering insulin into me until today, I have had the chance to start getting used to wearing a cannula and I have also tried wearing the pump around to get a feel for it. So actually I am starting to get used to being attached to the equipment, but it felt a bit different once I was actually receiving insulin through the tubing and cannula!

It feels so bizarre that after 15 years of regular injecting, today I haven't once used my insulin pen! When I've been eating and not reaching for my pen, but pressing a few buttons instead, I feel like I am not managing my diabetes and keep expect my sugars to be sky high, but they have actually been quite the contrary! I have had 3 hypos today, but then there is probably still some long-acting lantus in my system. Also, it's very early days and so I do expect that my settings will need tweaking, so I don't feel too disheartened and I haven't thrown the pump out the window yet!!

On the other side of things, I do feel a bit frightened in terms of what if for some reason the pump stops delivering insulin. I suppose so long as I do regular blood tests and if necessary ketone testing, hopefully I will keep on top of things and if it happens I will be able to deal with the situation. I think it's the thought that if the pump did stop, I would no longer be receiving any insulin whatsoever that freaks we out! Because before if for some reason my rapid insulin didn't get absorbed properly, atleast my long acting Lantus dose would always be there in the background, but that won't be the case for me anymore!

I am a bit worried about sleeping tonight and where the pump will end up! Willl I wake up in the morning in a tangle of tubing? What if I lie on the tubing-will that stop the insulin delivery? Or equally, what if I press on some buttons on the pump in the middle of the night inadvertently bolusing myself?! I have been assured that these last two points will not happen-although the tubing looks very fine, it is actually very sturdy and has a double lumen design and the buttons won't deliver anything just by resting on the pump. I'll let you know about the tangling..!

It does feel strange to have a cartridge of insulin attached to me all the time-what if it all whooshes into me at once?! I know that sounds silly, but I am so used to injecting my insulin dose and having that element of control, that being hooked up to what is a pretty potent drug, 24/7 is a bit daunting!

Like I said before, it's only my first day and I'm sure I have a lot to learn!

It's just lovely to be able to share my feeling with people who will really understand what it's like to have diabetes. I do already feel a lot less isolated as a diabetic even though I only joined the forum last week!

Thanks for taking the time to read my post.

xxx

 

[Osidge]

Congratulations, Marmite-lover, on day 1. I am sure that you will be a pumping pro in no time.

Take care

Doug

 

[Marmite-lover]

Thank you Doug!

I didn't get too tangled last night! It's very nice to be starting at the same time as other people on the pump, so today we gave feedback about our first day and experiences.

At the moment I am quite happy wearing the pump in a bra pouch. The other people in my group are all male and have been wearing the pump on their waistbands. They've found it a bit tricky in terms of where to put the pump when using the toilet as there are a few worries about dropping it in the bowl! I have not encountered such problems having it tucked by my bra, but I was wondering if there are any suggestions out there as to what to do with the pump in such situations?!

 

[clarentina]

I am a lady pumper and usually have it on my waistband. When I go to the loo I usually leave the pump on my belt or if my clothes don't allow it I clip it onto the neck of my t-shirt just while I am in the loo. Strange I know- but whatever works!

Clare Bear

 

[TamsinB]

Good luck! I've been on my pump for just over 6 months and I love it.

I know what you mean about the tubing, it looks so fine I was paranoid about squishing it in the night. When you change infusion set have a play with the old one - you'll soon see that it's pretty much impossible to kink or squash the tube.

I wear my pump tucked in my bra - I tried it on my waistband for about a day and knocked it everything in sight - door frames, desks, all sorts. Thought it would be far safer to hide it in amongst some padding! :lol: I've heard a lot of men say they use a long infusion set and wear the pump on their ankle. I suppose that only works if you have a remote control.

 

[LittleSue]

I can relate to your worries the first night - the first couple of days I kept checking the 'status' screen to check it was still working or the rate had changed when it should.

With regard to practicalities of wearing it, I've tried several ways. I find most of the 'proper' cases/clips too bulky and not suitable for my lightweight work trousers. They either bounce about when I walk, or stick out a mile and are very obvious. I found a small mobile phone case with a swivel clip so I can have the tubing coming from the top, side or the bottom, cost £1 in a discount shop. Although still a bit bulky for my work clothes its OK with jeans. If wearing it on my waistband, I move it to the neckline of my top for loo visits.

Sadly, I don't have the cleavage to hide my pump there in the day, but at night it sits there inside a crop top-type bra and doesn't move. I put a baby sock or scratch mitt on it for comfort.

Best I have found for daytime is a 'Go body pocket' designed for hiding cash etc under clothes. I position it so the pump hides at the side of my natural waist, doesn't move when I walk, no bulge so it's not really visible. Tubing is also out of the way for toilet visits. Wearing this one day, I panicked that I'd left my pump somewhere cos I couldn't feel it bouncing while walking quickly. There it was safe and sound, just so comfy I couldn't feel it. This is how I wore the 'trial' pump while pumping saline and I've come back to it as the most discrete and cost-effective.

None of this practical trial-and-error has put me off. I view it like if I changed my handbag I'd have to find what fitted best where.

It sometimes seems strange not injecting, but I can live with that! As you say, your doses will need tweaking a bit. Also on the pump, you may end up with a totally different pattern from what you needed before. On MDI, I had to change my breakfast ratio as the month progressed, but that doesn't seem to happen now. Used to go quite high after breakfast, now unless I use a square wave, I go hypo 1-2 hours after breakfast. BG only rises about 1-2mmol after eating too which hopefully will be good for my HbA1c.

Try not to worry about the pump stopping. As you say, if you test frequently you'd soon spot there was a problem. Of course you can do an extra test if you don't feel right in any way.

You can probably 'lock' the buttons on the pump in case you lay on them in your sleep - ask your DSN or check the manual to find out how for your pump.

The first few weeks are hard because of the newness of it all. I'm seeing the benefits now - good control and its strange how being connected to a gadget 24/7 feels so liberating

 

[Marmite-lover]

Thank you so much everyone for your supportive words and very useful advice

I must admit, I am feeling a little disheartened at the moment. I knew that getting a pump would require putting work in to get the results, I think I'm just feeling a little overwhelmed and worn out by it all at the moment!

I have been having a lot of hypos since I had it fitted on Monday (atleast I know that it's definitely delivering insulin into me!) I have been doing very careful carb counting, so I think my basal rate needs a bit of adjusting. It's still very early days and I think at the moment, the amount of adjustments a pump can offer feels a bit more daunting than anything! :? But I'm sure with time, I will start embracing the flexibility a pump can offer me, that just feels a long way ahead at the moment!

Also having all these hypos is quite wearing, so I think that's just making me feel a little fatigued by the whole situation!

Even though the pump and I obviously have a very close physical attachment, we're not quite there emotionally yet..!

 

[josie38]

Hi marmite-lover

All the things you said in OP, a lot of pump users probably had the same thoughts when they first had one - I know i did!!

Hopefully you will get it all sorted out and your bs will level out.

Keep asking any questions you like and keep us posted onyour progress!!!

Josie

 

[iHs]

Hello Marmite

If you haven't done it as yet, look in your pump manual for instructions on how to go about changing the basal rates on your pump and also your insulin to carb ratios. It's not good to have to keep treating hypos with glucose because the pump is delivering too much insulin at various times of the day . Unfortunately the calculation that the dsn used to start you off with sounds as though it needs to be tweaked a bit so have a look at the times you are going low and then reduce the basal rate down just a tiny bit at first 2 hours before you know you will go low. If you find that you are going badly low 2hrs after eating a main meal, adjust your carb ratio so that the pump delivers less meal bolus insulin. Using a pump is a bit trial and error as everyone needs different amounts of basal insulin and also different carb ratios. It's only by testing every 2-3hrs that we are all able to work out what to do. I always write all my bg results, basal rates, carb ratios in a bg pump monitoring diary which Accu chek give me as I have a Combo pump. You can also do the same even if you have a pump from a different company.

Try not to be down about the pump as things will get better for you once you start tackling things yourself

 

[LittleSue]

Do speak to your DSN also about your basal rates. Its not easy to make logical adjustments while you're worn out by hypos. I'm sure she won't want you having loads of hypos and getting disheartened either. I was really tired for the first few weeks, even with ve yfew hypos. Hang in there!

 

[Marmite-lover]

I really am touched by the kind words and support I'm being given! Thanks so much to everyone!

That's very sensible advice iHs. I think being a bit overwhelmed, I haven't really known where to start! Looking back at all my blood sugars in my meter has been a bit confusing, so actually writing them down on paper has got things a litle clearer in my mind as to what may need a bit of tweaking. I think that's the key, not to try to change everything at once and just be a bit patient! My DSN said that quite often they can over-calculate the insulin requirements for new pumpers so that probably has been the case for me-I'll get there in the end!

I think I was just feeling a bit sorry for myself, because times like these do highlight how tricky diabetes can be to manage. I can't imagine what it would be like to not have to think about food, insulin, blood sugars etc on a daily basis! But equally, to get some perspective, atleast it is a condition that can be controlled.

I'm sure things will get a bit easier with practice like so many things in life..!

Thanks again for all your replies

xxxx

 

[josie38]

Hi,

You are right marmite - it does hi-lite how tricky it is.

When i started tweaking my basal I used to think "is all this hassle worth it" and it got me down, having to think about my diabetes all the time and worrying about my cannula and pump etc. Now, a year later, the hassle was worth it and i "tolerate" my pump!!!!

Josie

 

[Marmite-lover]

Thank you Josie

I think I am feeling very much like you did when you first got your pump. I'm really glad that all your hard work has been worth it and that gives me hope that with a little patience and work on my part I will start feeling a bit better about things!

I just wasn't really expecting the emotional toll this would all have on me, but like I keep telling myself, it is only the first week!

Thanks again for your support

xxx