Monday, 23 February 2015

Not Prepared.

Usually, I am so on the ball when it comes to making sure I'm prepared for whatever diabetes-related situation may arise. Spare battery, check. Ketone meter (which also doubles as my back up glucose meter), check. Back up insulin, check. Needles, in case I have to manually inject, check. Glucose tabs, check. Spare cannula, check.

More often than not, I'm pretty on it! I'd much rather carry everything on me, knowing that if my best friend calls and wants to go for an impromptu dinner, I can. Or go to the pub after work with my colleagues. Being prepared means I can be spontaneous when it comes to those decisions.

Last Friday, however, I was only partly-prepared!

I noticed that my insulin cartridge was running low. Not a problem. I grabbed the vial of insulin from my bedside table before I left for work and put it in my bag. I knew I had enough insulin left in the pump to last until lunch. Lunch came round, I checked my blood sugar, and saw I had 3 units left, so I bolused that to cover some of my lunch (I do my very best not to waste insulin - it's precious stuff!). I took my insulin vial from my bag, and then looked into my diabetes bag for my spare insulin cartridge.

Except I didn't have a spare insulin cartridge. And I'd just bolused the last 3 units I had in my pump, something I wouldn't have done if I had checked for the pump cartridge first. Because that 3 units could have been my basal insulin until I got home, and just done an injection to cover lunch.

But, feeling like a bad-ass and using up the last of the insulin in my pump, I didn't check, and this afternoon saw me doing a few injections, something I hadn't done since I started on my insulin pump back in June of last year.

Going back to injections, albeit for only a few hours, felt strange. It's weird how something that was my normal for four years suddenly feels alien to me. It's also made me very aware of the fact that I'm not actually confident anymore when it comes to injections. I wasn't entirely certain how to calculate my basal rates for the time I was disconnected from my pump, and I also didn't know if my insulin to carb ratios would be affected, as the way the insulin is absorbed is different. 

Perhaps I'll go on a pump break in the near future. For me, it's important to feel confident with your method of insulin therapy. And when using an insulin pump, like I currently am, it's important for me to feel comfortable with both my pump and injections, in case my pump ever breaks. 

A lot of this disease is out of my control. But knowing, understanding and feeling confident with my insulin therapy is. 

Monday, 16 February 2015

Invisible.

I'd felt a bit funny during my last hour of work, but a blood sugar check told me I was at 5.2mmol/l. I still felt odd before I left so I checked again, and clocked in at 4.9. I went to the shop to grab a snack and then made my way home as normal.

It was when I got to the train station and I was fumbing around with my ticket that I realised something still wasn't right. I managed to get onto the platform, and I whipped out my meter yet again.

2.9mmol/l.

"Fuck," I thought.

One look at this number, and every hypo symptom hit me with full force: I was shaky, sweaty, my heartbeat was racing, my lips were tingling, and rummaging for food suddenly seemed difficult.

It was the kind of low where, if I were with family or friends, I would have told them, for my safety and comfort. The whole "I'm low, and although I probably won't pass out [passing out is a hypo symtom that I am lucky enough not to have experienced], I need you to know that I feel like I might" spiel. But I was travelling alone (on my very short commute home from work), panicking. It got to a point that I wondered why people weren't looking at me weirdly, because I felt like I stuck out like a sore thumb. But no one seemed to have even noticed.

Source.
That's when I caught site of my reflection.

I did not look the way I felt, and it reminded me just how invisible this disease is.

Sometimes, I like that. I like that diabetes is something I can disclose as and when I want to.

Other times, I wish it wasn't. Like when I'm on a train, feeling like I might pass out, and not looking like there's anything wrong with me. 

The hypo passed, as it always does. I calmed down, and got home safely, thinking a little too much about this whole diabetes thing.

This disease, on occassion, terrifies me. It's not something I often openly admit because I worry that if I think about it too much, the weight of diabetes will become too much. Instead, I keep those fears locked away in a little box in my head, and try not focus on them. Fear has never been a great motivator for me, and, also, doing so often leaves me in a frame of mind I don't like being in.

But what has stuck with me was how "normal" I looked. That's scared me. Because the way I felt was not conveyed by my physical appearance. There are measures I take to make me feel safer. For instance, I disclose my diabetes. And I have the ICE App on my iPhone, stating that I'm type one diabetic, but you wouldn't necessarily think to look at a person's phone. 

What one might look for is a medic alert bracelet. Of course I own one...and wear one...or perhaps I've been meaning to buy one for a number of months (read: years) now. 

(Feel free to tell me off, I most definitely deserve it!)

I have now, however, ordered one (see picture above), and it should arrive within the next few days. I don't know how I've managed to go so long without one, and I am so lucky that I haven't found myself in a situation that required me to have one, but enough is enough. I've finally had that wake up call that has made me buy one, and buy one now.

I hope I never need it, but being reminded of, and terrified by, how invisible diabetes really is, I'd much rather wear one than not.

Thursday, 12 February 2015

Vicki's Notebook Turns Two! (Well, Yesterday!)

Two years ago yesterday, I was sat in my little flat in Alcalá as I tapped away at my laptop writing my first blog post. I pressed publish, and wrote another. And another. And another. This one marks post 288, not a number I was ever expecting to reach (like with most things, I was kind of expecting this to be a short-lived hobby - I'm glad it isn't!)

Pressing "publish" was one of the weirdest things - I'm well aware of the fact that once something is on the internet, it's very hard to delete it. I took a risk, and, so far, it has been more than worth it. I'll always say it - this blog is my diabetes therapy. And as a result of it, friendships have formed, opportunities have arisen, and it has helped me find my voice.

I don't know where this blog will go in the future - life seems to be getting in the way of posting, and I often worry about how read-worthy my posts are (I'm not analytical and I'm not scientific, and I wonder if people really want to hear about my life. That, and there are so many other blogs I can list that talk about this whole "life with diabetes" thing with way more grace, elegance and poise than myself!) What I do know, however, is that I love having (and am proud of) this little corner of the internet, because (despite the lacking grace/elegance/poise) I feel a hundred times better when I've put pen to paper (fingers to keyboard?) and organised my thoughts. And that's what matters the most - if there's just one person out there that this blog helps, then that's just a massive bonus!

So, Happy (belated) Birthday, blog! Here's to another year of posting!
Source.

Monday, 2 February 2015

Zero.

So, this happened:


"It's oddly satisfying when the insulin left in my pump is at zero on cartridge change day"

Insulin isn't something I take for granted. I'm so extremely lucky to have access to it. All I have to do is go to the doctor, put in a repeat prescription, allow 48 hours for the doctor to process it and get it to the pharmacy and then pick it up. Same routine for my test strips, lancets, needles for my insulin pens.

And I don't have to pay, thanks to my medical exemption card.


Insulin isn't a luxury, it's necessary to live.

The Spare a Rose campaign is live once again. The concept is SO simple: one rose costs about $5 (so, what £3.50 roughly?!). Buy your loved one one less rose this Valentines' Day, and donate that money to Spare a Rose. That money provides one months' worth of insulin through the IDF's Life for a Child programme. One month of life. Your loved one still get flowers (or whatever else you choose to buy them - I feel I should make it clear that this concept isn't exclusive to those who buy flowers!) and at the same time you help a child.

So let's share the love this Valentines Day, and help spread the word.

Spare a rose, save a child.



Monday, 26 January 2015

Let's Talk About The Pill.

This post has a pretty obvious audience. And will mention girl stuff like periods. Depending on your level of comfort when it comes to sharing, it could be seen as borderline TMI - putting that out there now! Also, please remember that I am not a medical professional. Information in this post reflects my experiences only, and links to other sources should not be considered medical advice either. We good?!

*      *      *      *      *

About a month ago, I decided that I wanted to go on the Pill. I'm not seeing anyone right now, so my reasoning for it isn't for contraception, but to help regulate my period (I told you - specific demographic with this one!) Pre-pump, I knew exactly when I was going to get my period. I had no need for a diary or calendar, because my blood sugars would tell me when I was due. Slightly higher a few days before, and then bottoming out, and being able to eat tons of crap food without seeing the horrible blood sugar peaks (well, stupid-high blood sugar peaks - no higher that 10mmol, usually).

However, since getting my insulin pump, things haven't been as predictable. Actually, things haven't been predictable at all. It wasn't something that bothered me too much when I was at uni, but now I'm working, it's becoming to be a bit of a problem. I can't just take time off because of my period. But when you don't have one for a couple of months, then get caught off-guard, it's not the most pleasant of experiences, one that results in me wanting to curl into a ball and shut the rest of the world out. No can do in the working world. So painkillers and tea are what I turn to.

I did a lot of research on this (and by a lot, I mean went in search of real-life stories, and pretty much drew a blank - nonetheless, please see the various hyperlinks in this paragraph) before booking my appointment with the sexual heath nurse (at my GP surgery, you have to see a "sexual health nurse" for things like the Pill, even if it's not for sexual health reasons). Long story short, I found that I had the option of all forms of contraception. I'd decided a long time ago that the Pill was what I wanted to use, purely and simply because if it caused fluctuations in blood sugars, I could switch types of Pill (there are two types of pill if you  didn't know - Combined Pill (progesterone and oestrogen) or a Progesterone Only Pill (aka the POP or Mini Pill) or even brand of pill. As effective as the other solutions are (injections, coil, implant), they aren't as easy to switch should I want to.

My consultant had said to me time and time again that the Pill is something I could use, for both contraception and regulation of my periods ("better the Pill than an unplanned pregnancy!" she always says to me). So I made an appointment to discuss the matter further with the sexual health nurse. It all looked promising until I mentioned diabetes. Here's the thing: in my experience, you say the word "diabetes" to a health care professional that doesn't specialise in diabetes, they freeze up. Not only had I said "diabetes", but I had also said "insulin pump". Before I knew it, I was being told that I may have to wait as the nurse wanted to get a second opinion. Two days later, I received a call asking me to go back in to see a doctor to discuss the matter further as "there's much debate as to whether people with diabetes should use the Pill."

Now, I understand that everyone is different (your diabetes may vary and all that), but I was confused as to why I was being referred to another doctor for a second opinion. My diabetes consultant told me the Pill was safe to use, and people I know, pancreatically-challenged like myself, are currently using the Pill, or have used it in the past. This is what has led to this post. I read a number of diabetes blogs. And you can find info on life with diabetes, parenting with diabetes, pregnancy and diabetes, sex and diabetes, but nothing (from what I could Google) about the Pill and diabetes. So here I am, putting my experience out there on the interweb.

Before the aforementioned second (second!) appointment to discuss this, I phoned my DSN to double-check my facts. Like I've said, each person is different, but in my case she was more than happy for me to go on the Pill. I asked her to send my GP surgery a letter, and a copy to myself to take to the appointment. I asked the second-opinion-doctor why there was concern about me going on to the Pill, and was told that it's to do with the increased risk of blood pressure and blood clot problems when taking a Combined Pill - these are risks for anyone that wants to go on the pill, but the risk is higher if you also have diabetes. The POP is the safer option. Or so I've been told (again, can I ask that you please, please, don't take this as solid-gold medical information!)

That's the one I've been prescribed. Getting it wasn't as straightforward as I thought it would be, but I got there eventually. I've been given a month's worth, and I need to go back when that's running out to have a review (blood pressure, weight, and to discuss the effect on my blood sugars). Providing the nurse and/or doctor (and my consultant, as I'm thinking now I'll email her my blood sugars to get her opinion too) are happy with things, I'll then be given three months' worth.

Now, I'm awaiting my next period so I can start the course of pills. Being irregular at the moment, I have no idea when this will happen. Actually, knowing my luck, after all this, I'll probably be on time! Sod's law, right?!

So, ladies, what are your experiences when it comes to the Pill?

Monday, 19 January 2015

Comfort.

"...and my blood sugars have been all over the place..."

I have no idea what led to that being said, but my ears pricked up, listening out for more info, as my brain weighed up the pros and cons of "revealing" that I too am diabetic.

I decided to remain silent. I'm never certain of the right call to make in those situations. Some people really appreciate the "me too" sentiment, others not so much.

The next day, the same thing happened again, but this time I was with a friend who's had the full disclosure talk.

"...he's really worried, because he knows I'm not right...It's just hard going...I really hate this sometimes...and I shouldn't let diabetes get to me..."

"Talk to her," Iddy Biddy Budgen said, looking over at me, "She gets it!"

"Are you diabetic too?"

"Yep," I replied, "type one, with my replacement pancreas clipped to my bra...I use an insulin pump," I explained.

"They've spoken to me about a pump...I'm not too sure though. Do you like yours?"

"I love mine, but it wasn't without its' difficulties in the beginning. And it's not for everyone. For me, it fits in so much better with my life right now."

"Can I ask you how it works?"

"Of course! The cannula's in my leg at the moment. You can kind of see the outline through my trousers, but I'll show you what it looks like properly next week [site rotation said it would be in my right hip my Monday - it is!] And the pump is here," and I unclip it from my bra to show her.

"And you trust that to give you your insulin?"

"Yes. Now I do anyway. Took a while to get used to in the beginning. But the pump's super-smart, and it will alarm to tell me if there's a problem. And, touch wood, I've not had any yet. Apart from a low battery alarm. And a low cartridge. But that's it!"

"Impressive! I have to get back to work, but I want to talk to you some more if you don't mind? And I think my other half will want to chat too. Would that be okay?"

"Anytime. You know where the office is. And you have my extension number. And here's my mobile number," and I scribbled it down on a post-it note, "if you need anything, you now know every way of getting in touch!"

"Thank you, I will! It's nice knowing you get it, even though it sucks you have it. That made no sense!"

"Actually it did. I know what you're saying."

I hate knowing that there's someone else going through it, that you reading this may be going through it, and as sorry as I am for that, maybe selfishly, it's also comforting to know you're going through the same shit as me. Here's hoping that sentiment doesn't make me a bad person. 




Wednesday, 7 January 2015

Easy.

Late last week, I went with my Dad to drop my sister back off at uni. We were talking about peer support, after my Mum was invited to an event for people living with her condition, polymyositis.

"It sounds really stupid," I began, "but the best thing I've ever done is get on a train to London and meet this girl called Lizzie. The rest, as they say, is history! You and Mum don't often see my bad diabetes days because I have this network of people I can turn too. Some I only know by name, others have become good friends, close friends, that I can't imagine not knowing. I think Mum could use that. The worst that happens is she goes and hates it. That's okay [no force-feeding of community is one of my rules]. On the other hand, it might be just what she, and you, need."

"I think you're right," my Dad said (he's a man of very few words), "so that's your secret to making diabetes look easy, huh? Friends with diabetes?"


"Yep! So simple, so effective! Because this disease is not easy, not in the slightest. And I would take a cure in a heartbeat. But, for me, community helps. Friends help. They've influenced who I am today and my attitude towards diabetes."

"If someone had asked me when you were diagnosed if you'd have coped, I honestly would have said no."

"I would have said no too," I laughed. "But it's not all my doing. I've had a lot of help and support from family and friends [and from the DOC as a whole] along the way."

And I will forever be grateful for that.