So it was actually a week ago on Tuesday that I went to my first insulin pump meeting and it was nothing like I expected and very emotionally draining so instead of posting about it I wrote poems instead, one of which I shared with you https://endocrinegremlin.wordpress.com/2013/08/21/expectations-and-desires/ . Now I feel more ready to talk about it and describe my feelings and stuff.
I was informed that it was a meeting to talk about what we would need to do before receiving the insulin pump and that we would be ordering said pumps when we were there. Instead, the pumps had already been ordered and I was handed mine within 5 minutes. It was horribly organised. They started by running late, not being sure who was talk about what, not having the right equipment in the right room and without an agreed timetable. We were split into three groups from three different hospitals. There were 15 of us but we won’t all start our pumps at the same time. Some of us start in October, some November and some December. I am, of course, in the November group but they divided us by hospital instead of into the groups we would be working with on our start week. I didn’t get that.
Three hospitals split the training and my group falls in Edinburgh at a hospital I’ve never been to with staff I have never met so that made me super anxious to hear, of course. I had hoped I would cope doing the two hospital learning days myself with mum just picking me up at the end but there is no way I can do a day starting my pump with strangers in a strange place so she needs to take a day off now. I feel bad for that.That has all sorts of consequences for my mental health and how I feel about being diabetic and it would have been so much simpler if I was at my own hospital with people I knew but, I have to convince myself that I can do this still and there is time for that.
It actually turned out that the info of what we’d need to do before starting involved having a workbook and a dvd shoved at us and being told to look it over as many times as we could before we start. Then we were squashed into tiny rooms to do three mini workshops. One was basically paperwork, another was learning how to use the pump and the third was the cannulas and connection tubing. I started with the cannulas and it was hard to understand as we hadn’t seen the pumps so couldn’t really imagine them connected. I’ve read a lot, and I’ve looked things up but I’ve never seen an insulin pump connected to a person…in person. The pump users have their own clinic at my hospital and I’ve yet to manage to go to a diabetic meet up as such so it isn’t something I have had experience with. I think it would have been easier to understand the cannula part if I had seen it with the pump.
Next was paperwork which was scary.
I had a panic attack in that room -__- I had been led to believe the whole time that the course would be in my hospital and I’d be working with the nurse that I would work with going forward with my diabetes care. Instead it is a different hospital as mentioned and the teaching nurse is from the other Edinburgh hospital so when I am on my own after the training week I will be calling the hospital and asking for a pump nurse like ‘you don’t know me but help?!’ That doesn’t seem like a great system to me. I then had to sign a contract so that got me worked up again. It basically says that I’ve to try my best with it and not dick around. I’ve to promise X sort of results and I can’t and they know that. I can’t reduce my HBA1C average by the numbers started, I’d be dead! My HBA1C is ok; the problem is the numbers that make it up are all over the place. She said that was ok but it was still weird, to sign it or they wouldn’t give me my pump. Luckily it isn’t a serious proper contract but still, not good on the socially and generally anxious person.
Everyone was running late by that point. None of the paperwork packs we were given had all the stuff in them. People were running around photocopying stuff that should have been checked and then the pump dude overran because he didn’t think everyone was moving rooms yet.
What will take him a day to explain when we start the pump he tried to teach us in 20 minutes. My blood sugar was climbing with stress and I hardly took it in. We got our pumps out and ‘set them up’ to stop them alarming randomly so we can play about with them at home but clearly not enough because I wore mine to bed the other night and it kept alarming saying it wasn’t connected right. Ofc, cause there is nothing in it ¬_¬ But I don’t know how to stop it so I ended up just taking the battery out. He said he couldn’t teach us how to d X, Y and Z and the important thing was removing the alarms, so the pump won’t keep alarming to say ‘there is no insulin in me’ for example but he tried to explain anyway and I think he just succeeded in making me more terrified of the whole thing.He said if we didn’t leave confused and scared he hadn’t done his job right and I’m sorry but I have serious mental health issues and that just isn’t on.
I still don’t want to have to use an insulin pump. I am terrified of all the calculations and ratios that are in my future cause my maths is terrible but there is no other way as I’ve mentioned so onwards. My mum suggested I put it away for a week and leave it. I do have time and I didn’t want to fry my brain. I was emotionally and physically exhausted on the Wednesday after so it seemed a plan.
On Monday I got it out. I haven’t turned the pump on. Its only actions were to go mental at 3am. They advise that you hook yourself up to it and practice wearing the cannulas and such and having the weight on you. Getting the cannula in was easier than I thought and far less painful. It is actually like getting my finger pricked so better than injections! It is weird to have the pump in my pocket as it was on the first day though. I kept thinking it is my phone. The next day it was tucked into my bra and sometimes it would dig in but I will get used to it I guess.
I have discovered that the tubing is too short for me to wear it to bed and tuck it under my pillow as some people do. If the other cannula type that I have to try is longer I might be ok but otherwise I’m going to need some sort of strap or belt thing to fix to my person when asleep. I know you can get such things but I wanted to get my pump and be sure of its type before I started buying gadgets.
I’m still very unimpressed with how the whole meeting went and the way it ran over my 30 minutes. Forward though. I have a couple of pics of the cannula site, the pump and the whole shooting match all hooked up. I’ve named the pump Rogue, as my diabetes is a rogue wee shite 🙂