Pumping Insulin: Thoughts At Three Months.

On Tuesday, I had my first pump clinic appointment since starting back in June. I was going to blog about it, but as I started pumping, I realised I had very little to say. It was a fairly standard appointment, my consultant and DSN are happy with how things are going, and I'm more than happy with where I'm currently at with regard to my diabetes. 

One question I was asked at my appointment, however, was has the transition from MDI (multiple daily injections) to pump been what I expected?

I wasn't really sure how to answer. I feel it's too soon for me to answer that question. I'm still making adjustments to make pump therapy work for me, and "experimenting" with different types of bolus and temporary basal rates (TBR). 

However, there are things I'd wish I'd known, which weren't mentioned before the switch:

Where I stashed my pump for Graduation.

I wish I had known that people would just assume that, because I have the pump, I'm practically cured. So many times, I've heard something along the lines of "so...that's it. You wear that, and it does everything for you..." Not the case. I still have to check my blood sugar and count carbs. I just don't have to do the injection anymore - the pump delivers the insulin instead. 

It takes time to adjust. Don't get me wrong, I was prepared to hate the pump initially, and I did. I missed the comfort of injections, as I knew what I was doing there. But I thought I'd feel a lot more comfortable with it at this point than what I do. However, as I said at the start of this post, I'm still making adjustments and "experimenting" to make insulin pump therapy effective for me.

Not necessarily for everyone, but for me, there's a lot of stuff that comes with pumping insulin that's not prescribed. Cannulas don't always stick, and I hate waste, so I make sure I always have surgical tape in my handbag/diabetes supply shelf. That, and I also find I have marks from where cannulas used to be, so use BioOil (although have been told tea-tree oil is better?) to help them heal quicker...to just insert a new cannula there. And then, of course, there are the glucose tablets (or other hypo-treatment of choice).   

It's okay to hate it. Now, I am incredibly grateful for my insulin pump, especially knowing how difficult it can be to get approval and funding for them on the NHS, and I am seeing the benefits of it. It's the fact that I need it in the first place that I hate. During my appointment, my consultant asked me if I'd hand the pump back, and I answered very quickly with a definite "NO!" and then I hesitated. "You wouldn't give it back, but you don't want to have to use it either." It wasn't a question that she asked me, it was a statement. A fact. I nodded, not really sure what I was meant to say. "That's okay...feeling like that is 'allowed'. Of course you don't want this. But it's working for you, you're seeing the benefits of it with regard to your health, well being and lifestyle." It's a constant, visible reminder of the fact that my body doesn't produce insulin, but one that, at present, appears to be suiting me better than MDI did. It's something I love and hate, often at the same time.

And, finally, on a lighter note, no one ever mentioned how awkward going to the toilet would be with the pump! Don't drop it/let it fall out of my pocket. Lower jeans/skirt/shorts/pyjama bottoms without pulling at the tubing or just getting tangled up in it in general. I feel it's something they should teach you the moment you're "hooked up", as my first toilet escapade was hilarious! (Housemate: "What took you so long? Actually, no, don't answer that!" Me: "I don't know how to pee with a pump!") Now, my pump tends to hang out in my bra instead of below the waistband, so I avoid getting tangled in tubing and tugging at the cannula site!

(Almost) Wordless Wednesday: Re-group.

Looking more like the "Fast Food Rockers" as opposed to Tweedle-Dee and Tweedle-Dum. Ha! Back from a fabulous weekend away, followed by a very positive pump clinic appointment. More on both just as soon I've re-grouped and can string some words together for blog posts. Happy Wednesday :-)

(Almost) Wordless Wednesday: Twenty-Two.

Twenty-two years old: time to start figuring out who I want to be and where I want to go. Simple enough...right?!

"I'm Gonna Pick Up The Pieces..."

Trying to un-Monday this Mondy morning with the help of Ed Sheeran, a strong coffee and a good ol' bullet point list of links. 

• "29 Things Only a Person With Diabetes Would Understand".
• "Dear Diabetes..." - a great blog by Kelly.
• A different spin on advocacy: check out @darthskeptic on Twitter.
• Ellie (My Bitter Sweet Life) writes honestly about her planned hospital admission to help get her diabetes back on track.
• Diabetes consultant Partha Kar writes about racism within his profession - an absolute must-read!
• Kelly of Diabetesaliciousness writes a lovely post following the passing of Robin Williams.
• Kim (Texting My Pancreas) took to the DOC a little while back, asking those who wear an insulin pump to tell her what you wish you were told about how insulin pumping affects you emotionally. Here, she blogs about what was said. 
• Mike blogs for Diabetes UK about their "Make The Grade" campaign.
• "To pump, or not to pump?" - a question faced by Jen, who's been weighing up the pros and cons. 

Waste.

I hate wasting diabetes supplies. Always have, but even more so since I interviewed Lucy, founder of The Pendsey Trust.

When I was on injections, I would use every last drop of insulin in the cartridge before disposing of it, even if it meant taking two injections (one to finish the cartridge, another to take the rest of my dose from the new cartridge). 

One time (quite a while back now) I smashed an insulin cartridge, and I was so angry with myself for doing it. I mean, it was an accident, but I was angry because it was a new cartridge, so that was a good two weeks' worth of insulin for me, if not more.

Since going on the pump, with some trial and error, I've been learning how to limit what I waste.

Cannulas that are starting to un-stick around the edges? Tape 'em down, and re-tape as often as necessary.

Leftover insulin in the cartridge after the six day limit? Don't fill the cartridge up with as much insulin. When I was first put on insulin, the cartridge in my pump was filled with the maximum amount of insulin (about 315 units!) and at the end of the six days, I had about 100 units left! I was so annoyed about having to chuck it. So, when I did my first cannula change, I filled it with just over 200 units, and have been doing this ever since. 

However, I sometimes find that I still have anything between 20 and 30 units left. I'm trying to perfect my cartridge refills so I'm in single digits when I switch it out. That would definitely be considered a win in my book!

The one thing I'm finding really hard though, with regard to waste, is having insulin left in the vial. Often, I'm finding that I don't have enough insulin left in the vial to fill up my cartridge with the approximate 200 units that I like. I hate the thought of just chucking it, so, at the moment, it just sits in the fridge.

So, dear diabetes online community, my question for you is this: what do you do with any remaining insulin in the vial? 

Any and all responses will be greatly appreciated!

Happy Friday!

Archives: Take A Moment.

My head feels busy at the moment, like there's too much going on. Well...there is too much going on...and I just need to stop...and breathe. So today, I delved through the blog archives and found a post I wrote about a year ago, which feels very applicable today.

 

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Over the weekend, I was talking to Lopez about year abroad/her being at law school and how quickly the last 12 months have passed. Yeah, there have been some times when the days seemed to drag, but on the whole this year has flown by! And then Lopez said something that really made me stop and think: 

 

"Sometimes I need to take a moment to stop and realise how far I've come." 

 

And this is true for all of us. 

 

Sometimes, we're so busy that we don't take the time to just stop and reflect.  

 

But we need to find the time to do that. I need to take the time to do that.  

 

Six months ago I was in a crappy place: I wasn't taking my insulin, I was rarely checking my blood sugar. I just didn't want to be doing it anymore. I gave being a non-diabetic a go. It's safe to say things didn't really work out in my favour. I felt awful for it, and I put a lot of effort into getting back on track. It wasn't easy (but then what is when it comes to diabetes?!) but I sorted things out.  

 

It's not until I take that moment to pause and think about things that I realise just how different things are: I'm back on injections and I sugar test more than enough times a day. My levels aren't perfect (and they never will be) but I know that I'm trying my best. I eat healthily and carb count as best I can. I started writing, and what started out as a place for me to vent and clear my head has accumulated actual readers, something that still surprises me, as that wasn't what I set out to do. However, I am glad of what has come of it. 

 

So take a moment to stop. You may be surprised when you think about just how far you've come. I know I am.  

Five For Friday: Pick-Me-Ups.

It's been a long week, so today I'm sharing a selection of (my favourite) pick-me-up blog posts.

1. I think this is one of the first blog posts I came across, not long after I was diagnosed with diabetes. Little did I know I'd end up becoming friends with the person who wrote it. Daisy becomes "a fully qualified self injector of insulin".

2. Jen (Young, Fun and Type 1) documents completing her Big Challenge - a London to Paris bike ride followed by a Bupa Half Marathon, all in aid of Diabetes UK. Amazing! 

3. For "No D Day" last year, Elizabeth wrote about music, and the moments in her life that certain songs are attached to. I love music, and always interested in finding out what other people listen to. 

4. "Recognize your inner superhero" - words brilliantly strung together by Stephen at Happy Medium.

5. Finally, the very recently written poem posted by Kerri at Six Until Me called "If I Were Ever..." It put a huge smile on my face.

Have a good weekend!

Psychosocial Support.

Psychosocial support and diabetes is a topic that's always interested me, as I very much believe that it is overlooked. So when I saw that Zoe Scott, founder of Hedgie Pricks Diabetes, was lined up to host an Our Diabetes chat on this very topic, I was excited...and then bummed out when I realised it was on a night I wouldn't be able to participate in the chat. However, thinking about it now, I know I wouldn't have been able to keep my responses to the Twitter-limit of 140 characters!

1. Are there times when diabetes gets you down or anxious? Are there particular triggers?

I'd be lying if I said there weren't times when diabetes gets me down and anxious. I panic when my blood sugar drops and I can't get it back up within range. I also panic when my blood sugar is high and won't come down, especially after that one time I ended up in hospital, not remembering anything. I have pity parties, where I feel sorry for myself, and "grieve" the life I had before diabetes. 

2. Do you feel you get the emotional/psychological support you need from your HCPs?

Yes, I do. I feel like I've been incredibly lucky with my health care team, and I worry about potentially leaving them if/when I move in the future. I'm scared that I won't have the same level of help and support. 

3. If you were given a questionnaire by your HCP would feel able to answer it honestly or would you lie with some questions?

I would like to think I'd answer it honestly, but thinking about times when I've been down in the past, I actually don't think I would. When I've been down before, it's not been something I've wanted other people to know about. I'd pretend to be fine and happy, and then when "behind closed doors" I'd let everything go. Knowing that, I think I'd lie if given a questionnaire, not wanting to admit to others that I'm struggling. It's a character flaw, one that I'm working on.

4. Does your team take your concerns seriously?

Yes, always have, and I believe they always will. And I hope wherever my care moves to in the future, I'm shown the same level of support. 

5. Do you know where you can get help for how you feel? 

I know that I can turn to the DOC - there's something about talking to other people who 100% get it. But, of course, if I really felt there was cause for concern, or my family or friends did, I'd definitely talk to my health care professionals, no matter how difficult it would be for me to do so. The DOC is great for emotional support, but there's a difference between needing emotional support after a bad day or a bout of diabetes burnout, and needing further (professional) help for some more deeply-rooted emotional problems.  

Comforts.

Although I moved out from my parents' house when I started university, I've never actually lived alone with type one diabetes. I've always had the back-up of having other people in the house the majority of the time. For the last week, however, my parents and siblings went on holiday, leaving me home alone. 

It was great. I could eat what I wanted, when I wanted to. I could watch whatever I wanted on the TV (hello re-runs of One Tree Hill). I didn't have to tell anyone where I was/when I was going to be back. Don't get me wrong, I love my parents, and my siblings, but living back under their roof after four years of having my own place is a hard transition. 

However, having the place to myself also meant that I was the only one around should anything happen with regard to my health. So when that low blood sugar hit at 2am, not only was I shaking and sweating, trying to count the sips of cranberry juice as to not over treat, but I also felt even more vulnerable as I didn't have the back-up of someone else there. And when my blood sugar checked in at 16mmol one afternoon, and that panic that I feel with highs set in, I didn't have the reassurance of someone else around should my blood sugar have not come down.

In these situations, I turn to this:

I know what you're thinking. It's a teddy. But it's more than just a teddy. I was given him (I never actually named the bear, it's just always been a "him") by E.Hales when I was first diagnosed, and he's lived in every house I've lived in since. Even on my year abroad. He's just been kept hidden, but he's the first thing I go to when I find myself in need of comfort when certain "diabetes-moments" hit.   

It's by no means the first time I've found myself in situations where I'm living alone for a period of time, and it won't be the last. But diabetes is one of those conditions where I'm fine...until I'm not. And when I'm not, diabetes often leaves me feeling scared, vulnerable and weak. However, I'm not prepared to let diabetes interfere with my life plans. Instead, I do all I can to stay as safe as possible, and when those highs and lows do occur, I learn how to cope with them. 

Even if 'coping' means turning to a teddy bear.    

Infusion Set Change Day.

Here's a run down of what my infusion-set-change-mornings (such as today) look like:

Step 1:

Disconnect pump and remove old set, hoping there will be no blood. 

Step 2:

Shower, enjoying the fact that there is no cannula attached to my body. 

Step 3:

Get dressed, and ponder wardrobe choices for the next two days as well, as this influences where I will place the new infusion set.

Step 4: 

Prepare new cannula and load the LinkAssist insertion device thing. Make a final decision about where the set is going to go. 

Step 5: 

Prepare. Jump up and down. Pace. Stare the LinkAssist and the mother of a needle that's used to insert the cannula out. Whatever works to then get me to press the button on the device. Keep on repeating this step until I can finally press that little button.

Step 6:

Hold LinkAssist where I want the new site and press button. Reconnect insulin pump.

Step 7:

Get on with my day.

Happy Friday!