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  1. Patience

    Wednesday, 20 August 2014

    I was stocking a cupboard for work recently whilst we were on a residential. After going in and out of this cupboard a handful of times I grew to hate it with a passion. Well, not the cupboard itself, more specifically the door. It had no handle, and there was something wrong with the closer, so it took about a minute and half at least for the door to close. 

    A colleague of mine who hasn't known me very long stood and watched me go a few rounds with this door before making a very astute observation - 

    You really haven't got much in the way of patience, have you?

    And he would be absolutely right. Patience might be a virtue, but it really isn't mine, unfortunately. What I learned over the past few days though is that using a CGM seems to require a certain amount of patience, not least for me, the patience of waiting for start up day to arrive.

    I was slightly apprehensive when it came to actually inserting the sensor, as I'd read in various places that whilst the sensor itself was comfortable to wear once it was in, the inserter resembled a harpoon and it was quite painful to go in. 

    I was quite intimidated by the inserter when I got a look at it for the first time, and actually, yes it did hurt somewhat going in. It didn't even make my top 20 of 'things that have really hurt', but I believe my words at the time were 'my, that's not particularly pleasant', which probably does rank in the top 20 most stereotypically English reactions to things I've ever had. My experience though was that although I've never had problems inserting pump sites, I found that inserting that putting in the sensor on my abdomen was somewhat tricky having, well...amble breasts which made seeing what I was doing...difficult.

    Hey ho.

    After that initial ouch though, it turns out the sensor is, so far, comfortable to wear. It's not like the limited experience I had with the Medtronic iPro two years ago, where I couldn't sleep because I found it so uncomfortable. To be quite honest, I've barely noticed it's there. Massive thumbs up.

    Watching that blue bar count down to nothing was difficult. Like I said, I have no patience. I couldn't wait to see how this could help me in the time that I had it.  

    One thing I was that the first 24 hours are a real learning curve for the sensor as it learns to interpret what your body was telling it. I was warned - don't over-calibrate and confuse it. Have patience. Yikes. That was a test and a half. I did well to only calibrate it (I think) once more than the recommended amount, because it was at least 5mmol/l (90mg/dl) away from the scores on my meter. But by the time I got to day two, it was pretty much perfectly in line with my meter. 

    I can see why some people would find the constant stream of information overwhelming. I think you need to be the right sort of person to find it helpful. I know I've had to sit on my hands a bit to stop me from jumping the gun and reacting too quickly. I'd been given the advice to not over-correct and trust my IOB. For the most part, it seems to have worked, but when you see two arrows up or down you want to intervene immediately. It's been fascinating to see what different foods are doing to me, and reassuring to see that for the most part I seem to have been doing things right. For the most part. I don't pretend to be all knowing, or getting everything right, or that everything comes easy. That would be wrong and a whole stack of lies.

    Something that I did find confusing was the appearance of this...

    This kept turning up randomly. Particularly, for some reason, any time I walk into the bathroom in my house. Supposedly I need to bring the pump closer to the sensor. I only ever take it off to shower, and I've taken to leaving it on the shelf by the bath then. But one day, these warnings kept turning up all the time. My reaction...

    This, and other questions proves why the DOC is invaluable. I haven't been throwing as many questions out there to the Twitterverse in a good long while. Probably not since I started pumping in 2010 - it's very reassuring to know that people out there will help with all your worries, niggles and ponderings when you're breaking new ground with your D management. No-one was able to actually work out why I was getting so many ANT readings, or why my bathroom appears to be the magical land of no reception. But knowing that people cared was a massive help.

    So it's so far so good. I'm not wanting to confess the depths of my love affair with Dexcom just yet, as I'm not sure I'll be able to cope with the divorce process of when I have to give it up. 

  2. An unexpected (CGM based) party

    Tuesday, 12 August 2014

    I do get some very interesting emails on occasion. Some of which come with offers or invitations to various events or interviews. The problem comes when I have to reply and say 'thank you, but I can't'. These are frustrating enough when I get invites that are based in the UK - they're almost always based in London and being as I have a limited income and don't drive, I've always had to turn them down. Frustrating, like I say. But from time to time, I get emails asking if I'll be at this conference, or that conference - always based in the States - and would I like to meet this person, sit in something else. Nothing that I'm certain umpteen far more prolific bloggers than myself don't also receive. My response is always the same - 'Thank you, but I live in the UK and do not have the finances to attend. If an opportunity ever presents itself when they might be in the UK, please let me know.'. Best wishes, hit send. That's usually the last I hear of it and understandably so! But imagine my surprise and my pleasure when a swift reply entered my inbox - 

    'Would you be interested in a telephone interview instead?'

    Why yes. Yes I would! What a great solution! The lovely communications representative and I sent a few more emails back and forth and played some time-zone maths, and set it up.

    Which is how I found myself speaking to Terrance Gregg - the current CEO of Dexcom

    First off, I'll say that it wasn't something I ever thought I would have the opportunity to do, especially away from the ADA conference which was originally the time slot where he would be available. I was very aware of the sort of schedule he must keep and I was very impressed that he was willing to take the time out to talk to me when I was halfway around the world.

    I was struck by how much of a gentleman he was - mostly because he was very patient with me. Honestly, I was nervous and I ramble when I'm nervous. I usually make a point of telling people this, and making them know they're free to cut me off - I'm liable to keep on talking indefinitely otherwise! 

    We talked a lot about the future of Dexcom and CGMs in general in the UK - as I'm sure anyone who is reading this is aware, the differences in healthcare systems in the US and the UK are quite vast, and it is extremely difficult to get NHS approval for a CGM, with self funding being the only avenue for the majority. 

    'Reimbursement landscapes are daunting.' I wrote down as we talked. That's not particularly surprising. We covered some familiar ground for me as we discussed the need for devices, particularly in the UK have to demonstrate a high level of cost effectiveness in order to gain wide-spread approval. 

    Within the NHS that makes perfect sense. When you're funding the many, you've got to make hard choices and something like CGM technology has to prove that it can be effective and cost efficient to make it accessible to more patients. It makes sense, like I say. But when you're waiting for that time when the tech will be more easily available, you can potentially get a bit impatient. I like to temper hope and optimism with facts and realism. What was extremely encouraging was talk of recently received reimbursement in Sweden and Slovenia and that a dossier is currently being prepared for the UK. I wrote down a particular quote - 'the landscape is changing.' - which I think balances things in a way that I favour. Yes the landscape is daunting, but it is also changing. In order to make progress, there's a lot of work that has to be done. 

    I was also encouraged by the attitude to patient engagement that came across from our discussion. I felt a real sense of belief in the importance of talking to your users and listening to what they have to say. I personally don't think a company stands a long term chance unless they do - if a company isn't listening to my interests, then why should I want to use or continue to use their product or service? But I felt not only the sense of importance but a sense of pride in user engagement. If they're proud of that, then I think they can be proud of themselves. At least in my opinion, for what that's worth. 

    We left the conversation with my saying that, for the UK at least, my door, or phone/inbox was always open - I think they have a great products, from what I know of them from reviews, blogs, and all the ways I've come across them. I think they have the right attitude - a plan and long term strategy. 

    However, in the style of a late night JML infomercial for fountain pens that will stab through tin cans....

    But wait, there's more!

    I had a clinic appointment not long after this conversation. Admittedly, I'd been dreading it, but it turned out a million times better than I had anticipated. A HbA1c of 6.9! Almost certainly influenced by hypos, but I'll still take it. No complaints about my weight! Hoorah! But somehow we strayed on to talking about my speaking to Terrence Gregg, and this is where the discussion went - 

    Would I like to do a Dexcom trial, since I already used an Animas Vibe?

    After wondering if I was having my leg pulled, I managed to respond with a 'Yes. Yes I would.'. Would I like to? Getting the ability to switch on the Vibe's CGM function was, as I have put it several times to different people, a bit like having someone offer me the Holy Grail. Something I thought would never happen - magical and unattainable. If I can't afford a few train tickets to London to take up some of the interview offers I've had, then self-funding sensors was never going to happen. So we put a date in the diary. Turns out that Animas had some funding to run some trials. Everyone knew full well I wouldn't be able to carry on afterwards, but they would let me do it all the same. 

    That date in the diary was today.

    I was tremendously excited about the whole thing, up to a point where I apparently surprised the Animas training staff. And she's met me before. Several times. You think she'd have known better. So I'll be blogging about how I'm getting on with this trial. Right now I'm having a bit of a weird day with it, but I'm told that is completely to be expected with a new sensor. General wisdom seems to be that it takes a good 24 hours to learn what you're like. I know that's personifying it slightly, but it seems right.

  3. It's kind of hard to believe that this is day seven already - I keep thinking that I must have missed a day out somewhere (goes to double check), but it seems that I haven't. Which shows how time does fly away.

    I think it's also hard to say just one thing that you've appreciated from such a hugely varied week. But if I had to pick just one, I'd say I really enjoyed discovering this blog:

    I always like finding newer bloggers, and I ALWAYS like finding ones from the UK - there just aren't as many of us, and it's a real thrill to find one, especially one that writes as nicely! I'm looking forward to reading more from Phoebe. I recommend going and checking her blog out.

    Adieu, DBlogWeek - until next year!

  4. I'm not sure why I currently have two pots there. Better than none, I suppose!

  5. Wildcard time!

    I've never been one for the whole 'where are my keys?' thing. I've always been pretty
    good at keeping tabs on that. My phone? That's another story, but hey, I can call that.

    But my meter? That I cannot seem to keep a hold of. 

    'Ah?! Have you seen my meter? Where's my test kit?' is a frequent battle cry in my house. I shouted it around my office this evening  It's black, and in the world that I live and work in, there are lots of similar black things. I lose that flipping case all the time. Even when I did, once upon a time, have a bright pink case, I would still lose it.

    So my dream device? That would have to be some sort of alarm or gps tracker for my meter. Some way I could call it like I do with my phone when I can't find that.

    I think that would save a lot of heart in my throat moments, and a lot of headaches!

  6. So, mantras? Positivity. After the surprisingly downbeat entries I've made this week, this makes a pleasant change. 

    I like to think that I'm usually game for a challenge. Tell me I can't do something, and I'll generally want to do it, just to prove that I can. 

    But then I get to that overwhelming, sticky bit in the middle, where it all feels a bit too much, and I want to get out. Stop the world, please - I want to get off! The problem of course is that unless something radical happens, we're not getting off this merry-go-round any time soon.

    So what do you do?

    I consider the ducks.


    Yeah, it's kind of an in joke passed on to me by my wonderful housemate. If you've been to the University of York, you know about ducks. The flipping things are EVERYWHERE - they even used to be on the student ID card, and oh was I sad when I had to trade in my duck card for a plain, boring one. Yorkies are proud of the ducks. 

    Considering the ducks is another way of looking at Matthew 6:25-34. The ducks waddle around campus, not worrying about where food comes from, or what the day will bring, and yet they have bread and pondweed in abundance, don't mind the rain, and are more glorious even than the Vice Chancellor. Even when their little legs are paddling away like crazy beneath the water, they're just pedal boating, really. Even when they're working really hard they trust that despite everything, they will be ok.

    So I consider the ducks. 

  7. - So how are you?
    - Oh, you know. I'm fine. How are you?

    Yeah, that's pretty much how it goes. I'm fine. And I do care about how they are. 

    But there's many a time that I'm not fine. 

    So why do I say I'm fine? 

    Because I want to spare you from the things that I worry about.
    Because I want to spare you from my fear.
    Because I don't want you to think that I'm moaning.
    Because I don't want you to think I'm weak. 
    Because I don't want you to pity me.
    Because any of those are possible, and I don't know what would be the worst. 
    Because I'm tired and the explanation of why I'm not would take too long.
    Because I don't want you to think that I did this to myself.
    Because I don't want you to think that I'm not trying.
    Because I don't want you to be disappointed in me.
    Because we just don't have time.
    Because sometimes I just can't say why I'm not.


    But it's not because I don't think you can handle this.
    But it's not because I don't want to share with you.
    But it's not because I don't trust you.
    But it's not because I don't appreciate you.
    But it's not because I don't love you.

    It's because I do. 

    Sometimes I know you can handle it, but I can't explain what's wrong. I want to share with you, but I don't want you to think I'm weak. I love you, and I can't bear to disappoint you.

    So I suppose the most honest answer is - no, I'm not fine. But I'm trying to be.

    And having talked about negatives all week, I'm looking forward to focussing on the positives more tomorrow!

  8. I feel you, heat.
    Running up and down my body.
    Pinpricks on legs, waves on my collar.
    The world is off-balance because of you.
    You make me dizzy,
    Like only that ride at Hull Fair
    Ever had the power to do. 
    Let me off.

    I'm searching and coming up empty.
    Running my tongue around inside the pot.
    Fumbling with plastic that has no end.
    Straws bend, cans never open.
    And I'm fighting this hunger
    With my last crumbs of control.
    Because the guilt will taste bitter.
    After the fact.
    It's a bit like regret, peppered with shame.
    I tell myself next time will be better.

    There will be a next time.
    Let me off. 

  9. Weirdly, my last couple of posts have been about the things that get me really fired up. Bad, bad jokes and how they aren't as funny as one might initially think, and my current branch of advocacy, and how that gets me positively fired up, rather than just simply angry.

    So I'm having to think hard about what I want to say here. Partially because I've had about a week and a half now of just awful levels - I can't seem to keep down in range (or even close), and I'm worn down, and partly because I feel that whatever I'm going to say is almost certainly being said better elsewhere. 

    But then I thought more about how I'm feeling. Right now. Because of what D is throwing at me. Not physically, but emotionally. 

    I feel sad. And a bit useless. And flat. And empty. And then all the words come out. Those words that attach to feelings that I don't always like to talk about. Because those words can take me to dark places, and that's a bit like balancing on a see-saw for me. 

    This is a confession to you - reader, on the internet, and by proxy pretty much anyone who feels like seeing this. So basically the whole world. Potentially, anyway. I've not always had the easiest ride with emotional, and yes, I suppose mental health. I'm prone to long periods of what feels like 'empty balloon time' to me. Where all the puff, all the wind, the air, whatever it is that keeps me up and going, goes away. I can cope with a day of the blues, but I know what a day of the blue is compared to empty balloon time. When I'm just in a bad mood or a bit low, or, like today, I can pick up a book in a shop and start crying because, yes, that says exactly what I'm feeling just now (Michael Rosen's Sad Book, if you want to know. It's about death, but he describes sadness and emptiness in such an honest way). 

    And I think all of this has a lot to do with the fact I'm running really high for an extended period of time. It messes with me emotionally, but though D might be the cause, my feelings are still my own, and having and admitting them is not something I should be ashamed of. But I'm not ON my own. I am by no means the only one with feelings like this, or with struggles that are even worse. 

    Diabetes doesn't exactly give us time off. It's there all the time, even at the inconvenient moments, nudging away, wanting attention. I don't think it's surprising that people with diabetes are nearly twice as likely to experience mental health issues like depression or anxiety. It's also why I think it's important that we can admit that, hey it's not always easy. 

    It's also why I respect and admire the work of all the team behind the You Can Do This Project. Like I said, we should never be ashamed of feelings that are less than 'shiny'. None of us are any less of a person for feeling negative feelings. At least that's what I'm telling myself today.

    And honestly, this was not the post I was intending to write. I'm 100% sure where it came from. Which means it was probably exactly the post I needed to write.



  10. Moving forward

    Thursday, 1 May 2014

    Ah yes, here we are again. May Day. Common associations involve May Queens, maypole dancing, and for me, my diaversary. This year, five years. Wow, that's come and gone fast. I know that my blogging has got very, shall we say, sparse, but I thought this one was definitely worth marking. 

    I thought about the sort of anniversary that your fifth anniversary is. If it was your wedding anniversary, the common gift is, according to the internet, wood. Now I thought that was especially poignant as I had been working on something else to bring you.

    You might remember that back at the end of last year, I posted about finally starting to produce my own theatre under the name White Tree Theatre. Trees. Wood. See what I did there? Thematic linking, oh yes I think so! I talked about working on my one woman show about D advocacy, using the same name as this blog. 

    Well it happened. And it was well received. So what I'm letting you know today is that, amongst my other diaversary day activities (which involved meeting a waitress who was a pump user during my lunch, and more attempts at gardening which ended badly), I finally managed to make a trailer for the show out of the recording that was made. 

    It's not a great quality recording - I wasn't really doing the performance for camera, but you can hear everything, and what's more, you can hear audience reaction. It's just a little taste of what happened. 

    I do have the whole thing recorded - it runs at about 40 minutes. I also have one of the Q&A sessions that I ran after the performance captured. I will be uploading an edited version of the Q&A in the next couple of days, and I can share the full performance recording on request. 

    The really exciting thing, at least for me, is that since I performed it the first time back in November, I've had several people ask me how they can get me to come to their event. So what I'm doing is saying - ask me. Start a discussion. If I can get there, I'll try my hardest to come. If this show can help you or your community, I want to help.   

    I've posted more information about what the show needs to operate on this page. Please feel free to pass the information forward if you can think of someone who might want to know about this. 

    Five years. Yikes. Here goes year six, I suppose. 

  11. Getting a sense of humour...

    Monday, 10 February 2014

    I consider myself to be a fairly well read and educated person. I'm also surrounded by a lot of very well educated, well informed and well read people an awful lot of the time. Sometimes it seems that however well educated and well informed a person is, you can still find things that surprise you.

    Case in point - I read A Christmas Carol when I around twelve years old, and thoroughly enjoyed it. As adaptations of the book go, I maintain that The Muppet Christmas Carol is one of the best, even though I'm thoroughly aware it makes plenty of changes - it feels the most faithful to the book's spirit. No pun intended. 

    Just before Christmas I found myself having a discussion about A Christmas Carol, and more specifically The Muppet Christmas Carol with some friends. Someone admitted that because they love the Muppets version so much they sometimes forget that in the original there is only the one Marley brother. Which made me stop and think, then I realised that I had done the same thing myself more than once. How about that, when I'm actually well noted amongst people who know me as having a ridiculous memory for facts of this kind?

    Between us we decided that because the Muppets version was one of the most loved, and most watched adaptation, it was often what people came to know first, so no wonder they're surprised when they go back to the source material and see that something's a bit different. 

    Now, as amazing as the Muppets are, you might wonder why I'm talking about this. I have a point. 

    See this?

    This has been floating around Facebook again today. I've seen it before, and no doubt I will see it again. I know it's not just been on my newsfeed as well, as I've seen various members of the DOC addressing it. 

    'It's just a joke!' I've seen people saying. 'You're reading too much into it', when I point out that I find it offensive.

    I have a sense of humour. A good one. I know people often say that when they're trying to defend the fact that they don't get jokes. I get it. I get what you think is funny about this, but I'm sorry, it's just not. 

    This is exactly the sort of misinformed 'humour' that perpetuates myths about diabetes as whole, regardless of whether it's Type 1 or Type 2. There is so much ignorance and misinformation about there about what diabetes is, cause and treatment that does anyone think that 'jokes' like this are really helping anyone?

    Like with my point about A Christmas Carol, if a person's first point of contact with any sort of information is incorrect, and they then hear that repeated over and over, what do you think they'll believe? You only need to do a quick flick through your television, or a quick search on Youtube to see people making these sorts of 'jokes' again and again and again (and again and again - I could go on). It becomes mainstream. And no matter what you think, it still seems as though blaming anyone with diabetes for their condition is still an acceptable target. Couple that with the often downright dreadful portrayal of diabetes as a whole in fiction, and the blunders and idiocy of mainstream journalism, is it becoming clear now why I, and many others don't find this sort of joke funny?

    Would you make this joke if it was something that impacted you or someone you love? What if it was about something that you cared passionately about people understanding and getting right in their heads?

    When I saw this appear on Facebook today, I took to explaining to a few people exactly why I don't like it. And to their credit, they seem to have listened to me, so this is not me 'having a go' at them. Really, it's not. They're my friends and I love them. But things like this, for all the reasons I've just said, make me sad. They make me angry and tired and just want to sigh. Some days I just don't have the energy to fight these battles. So maybe you'll excuse me when seeing multiple people 'like' this picture on Facebook upsets me. Maybe you'll forgive me if I don't see the funny side.