Rogue Arrives

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 🙂

 

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Expectations and desires

Finding it hard to write things down about my pump meeting last night, so I wrote a poem about it instead. Big news is the pump is home with me. Live in November.

 

Expectations and desires
they want this machine.
I hate that I need it.

Box. Folder. Paperwork.
Sign this. Promise that.
Everything will be ok,
they say but they always do.

Screech. Chair out. Move room.
Learn this. Read that. Everything
is going to change, now.

Not quite though. Not right now.
Live comes later. It only drips
air now, the alarms sound
with empty warnings that
pull at my heart. Failure.
Must learn. Live soon.

Expectations that it will work.
Desires because it has to.
There is no other option.

Sometimes Victory is going out without a Bra on

Sometimes, you just need to sit back, look at a crap day, and proceed to give yourself a pat on the back for what you have achieved rather than focusing on what your health has prevented you from achieving. Well, to be honest that is best for any day of the week but sometimes it matters that little bit more, when the achievements are that little bit harder to think of and would appear a little less relevant to those that don’t understand. For example, I started my day like any other with my breakfast, cup of tea, and internet checking. Then I realised I didn’t feel that great? I felt very full and very thirsty and thought ‘uh oh’. Grabbing the old blood glucose meter had me blinking in disbelief as a 27.8 flashed back at me. I then checked my ketones while racking my brains because I didn’t know why it was happening. I still can only reach the conclusion that my body is having a moment and being all ‘because fuck you, that’s why’ as it sometimes does. Luckily for me my ketones were very low and easily flushed away with all the water in the world that I decided was mine and that I was drinking at a pace that would challenge World Records.

It was pretty terrible.

Still, I managed to hoover and tidy a few things and make my own dinner rather than falling head first into the take-away menus and going ‘yep, that one’. I managed to slog my way through a chapter of a book and look up some feminist blogs.  Mostly I’m proud of myself for getting my dog ready and taking him out for a walk despite every part of me screaming that I was too tired and please no. I didn’t bother finding a bra for the outing; that seemed like far too much effort. I’ve come a long way as a woman and as a feminist to not be bothered by that fact. I was proud of myself for taking the dog out and not trying to work out how likely an accident was and if he would cope with just being taken to the end of my garden, minus shoes, under the cover of darkness in a few hours to wee on the lamppost. I figured that the victory was that I had put shoes on and gone outside and walked Nico when I felt I couldn’t. If someone worked out that my boobs were swinging free than fuck any negative opinion they had. I was outside while feeling crap!

The thing about my hypers, that is different from hypos, is that they just suck out your everything like a damn dementor from Harry Potter or something. I bounce back from hypos a lot better than I do highs. Of course hypos are just a lack of glucose in many ways while hypers can start to physically poison me. I think it makes sense that they can be harder to recover from.  For me it tends to take all, damn, day.People don’t see the danger the same way I find though. Unless you’re on the brink of being in hospital a hyper doesn’t seem to be as important. Take some insulin, you’ll come down right? They think it is that damn simple. A, B, C, all fixed up.Oh how I wish.

 You know, Doctor Christian Jessen got a bit of a backlash from referring to type one diabetes, or all diabetes, as a disease today. I hate that. I don’t agree with everything he tweets or what he tweets about diabetes. The character limit creates a lack of context I find but in regards to disease he is still right. Diabetes is a disease, and there is no running away from that or referring nicer terms because society thinks diseases are contagious and kill you. Not all diseases are contagious but they are still diseases and ours can and will kill you. Yes, it is a condition, yes it requires management but at the end of the day it is a disease of the pancreas that causes havoc with our bodies and can and does kill people all the time. A big part of being a good diabetic is admitting what you’re living with, in my opinion.

Today I lived with an awful hyper and made the best of it. Another day I might not. I nearly cried but didn’t. Another day I might not. Yes it is a disease but there is more to it than that, like the mental strain of living with said disease. You don’t just take X insulin to fix Y and carry on. You stumble through your day to day life and give yourself a pat on the back when it works out. Sometimes victory is walking the dog without a bra on. So what, it is still a win right?

 

Learning to Say No

I had been doing very well and my diabetes tends not to like that very much. A friend has been visiting so I’ve had the chance to do more things this week and that has kind of been my main problem. It is still very hard for me to realise that I can’t do certain things. Some days I’m just too tired and I can’t always predict when they will happen. Sometimes I know if I’ve done a lot one day I might be tired the next but sometimes it just happens. Sometimes my blood sugars are the same but I feel worse because of them. I don’t like having to say ‘we had plans but I can’t cause I’m ill.’ I’m learning to do that rather than pushing through and suffering but I still feel guilty and like I am ruining things for other people.

For example, my friend and I were meant to go to the Edinburgh Fringe festival at the beginning of the week but I couldn’t manage it so said we will go on Friday instead and then tomorrow I woke up utterly exhausted despite having a good amount of sleep and like my head was in a vice with more nausea than usual. I spent a lot of this morning cutting myself up between pride for saying so and guilt at taking away my friend’s chance of seeing the Fringe. The more I tried to do things, such as walk the dog or even walk up and down the stairs the more exhausted I felt so I know I have made the right decision in the end but I can’t shift the feeling. 

My depression is clearly playing a part in that too, trying to drag me down and ponder over things  that don’t matter anymore. It is done, we didn’t go, and my friend is awesome and is ok with it. I know she wouldn’t lie to me about how she felt over it. She has always been fabulous in dealing with and understanding my current health. Still, clearly it is something I need to continue to work on. I did what was important for me and that is important. End of.