Instructions Not Included

So I went quiet again for a while there. It's been turning into a bit of a problem lately. I think it's due to feeling a bit swamped with both work and work for my Masters'. 

I'll be honest, I've also not been sleeping particularly well. I've had a string of high levels lately, and coupled with the cold, it's been playing havoc with my sleep. So obviously, I've not been at my most chipper. So with that in mind, I want to say thank you. 

The wonderful and lovely Mike from My Diabetic Heart has declared this week to be Diabetes Blessings Week. So my first thank you is to him for what I think is a fabulous idea. Counting our blessings is something that it never hurts to take time over. So with that in mind, I want to cast my mind back a bit.

 

Every now and then, I like to think about how far I've come. I remember a time, not so long ago, when I didn't know the language of basal, bolus, and A1c. I didn't know how to order prescriptions. The thought of injecting myself was utterly terrifying. 

And now? Well, I'm not the world expert on any one thing, but I like to think that I know my way around. I've been extremely blessed to have access to a lot of really good education, and supportive medical professionals. I know what I'm doing. I've managed to get solid HbA1cs since my initial high ones post diagnosis. Judging by the fact that I'm still here, I've learned how to inject, and managed to do it.

In this situation which I never wanted, I've managed to come out ok. This happened at a time in my life where I was in an area with a well managed NHS budget, when I personally was able to absorb the important information and use it to make positive changes, in terms of diet, exercise, and life. If this had happened a year earlier, I'd probably have seen things go very differently.

And please don't get me wrong. This isn't me saying that things have been easy. That would be a huge monster of a lie. They haven't. They've been VERY difficult, and I've put a lot of hard work in. This also isn't me going 'Haha, look how easy I've had it compared to you!', because that's not true either. I'm not bragging, or rubbing it anyone's face. I know how hard you all work, too. 

The truth is, I've been blessed. And I count myself to be very, very lucky indeed.

I know a lot of people today will probably be thinking about where they were and what they were doing two years ago. It was a historic day, and one of those 'where were you?' moments. As for me, I know exactly where I was. But as thrilled as I was by the results of that night, this isn't about politics. 

I was at my parents' house, having literally jumped on a train to come back home. I would have gone to extremely long lengths to get there, and it almost led to me quitting my job at the time. It was the day I said goodbye to my oldest friend.

I was on my own the night I found out that she had died. My phone had broken, and it took me buying a new one, and picking up a voicemail from her sister to find that she wanted me to call her. Though I couldn't get straight through, I knew in my heart of hearts what had happened. It was freezing cold, when I got through to her, and I very nearly sank to my knees outside the bank when I actually heard the words.

Pam met me first when I was maybe six years old. A good number of years older than me, she was my brother's guitar teacher. After he gave it up, she was my guitar teacher, then my singing teacher. She understood me and encouraged me in a very different way to everyone else in my life. She believed in me, and I never knew her once to doubt me, or raise her voice at me, despite my being a very frustrating student. We were more than student and teacher. All the while, she was one of my closest friends, and we loved each other. We clicked. We had loads of the same interests, and she had every faith that I could do whatever I put my mind to. She helped guide me through the early stages of my walk with God, and a thousand other things that I will forever be thankful for. 

On 4th November, 2008, after running full sprint through York city centre to jump on a train, and change out of my work uniform in a still moving train's toilet, I was among the many others who gathered to say goodbye to her.

Monday was the 1st November, which marked my 1 year and six month mark of living with Type 1. And unlike last year, all I found that I could think about was how much I missed Pam. Possibly because of the whole media circus surrounding the US midterm elections, I don't know why, but all I could think about was how much I wanted to talk to her.

I remember our last conversation, which was on my mobile phone, whilst I was sat in an otherwise abandoned car with a completely empty petrol tank. I was on tour with a small scale touring children's theatre company, and whilst we were en route to our afternoon show, our fuel had totally run out. My touring partner (and really good friend) had gone to try and hitch-hike to the nearest petrol station, and left me locked in the car (I don't advocate this strategy to anyone else, for the record). The high winds from up in the hills were rocking the car back and forth, and I was nervous. So I called Pam for a chat. She was in bed, ill, but we talked for a good half an hour until he got back with a can of petrol.

If I had known that the last time we talked would have been the last time we'd talk, I would have said so many things that I didn't. How I would forever be thankful to her for how she had taught me how to be a better artist, a better Christian, and a better human being. That I loved her, and felt privileged to even know her, let alone consider her one of my best and closest friends. Of course, I didn't know it would be the last time we talked, and of course, I didn't say those things. I like to think that she knew, though.

Pam had serious chronic health problems, and had her whole life. She was born with spina bifida, and had many complications because of it. She had an amazing life, and accomplished so many things that it makes me feel lazy. Even in her worst periods of health, she was gracious and loving, and full of life and humour. To me, she was the epitome of a Chronic Babe.

When I was diagnosed in May last year, she was the one that I wanted to talk to. The one I knew would understand, and that I could say absolutely anything to. But of course, I couldn't. I've wanted to talk to her about things at least once every week, but usually more. But of course, I can't. And of course, I still want to. I wish I could talk things out with her. I've wanted to bend her ear over the whole pump issue, for instance. I've got to console myself with what I think she'd probably tell me. 

I wonder sometimes what she would think of me and the way that I've handled things. I like to think that she'd be pleased with my transition from total newbie to knowing my way around things. I know she'd be pleased in my keeping this blog. She was a wonderful example of a pre-internet advocate for all sorts of health issues. If she'd been online, she would have been one of the movers and shakers - that I know without a doubt. It's a shame she never owned a computer, really. 

I'll never know the answers to those questions, though. Not in my lifetime. All I know is that I loved her, and that right now, I really miss my friend.

Here's a blast from the past for those of you who read from the UK, and something to boggle the minds of those of you from elsewhere in the world.

Who remembers Going Live? Ah, Phillip Schofield when he still had colour in his hair, and of course the national institution that was Gordon the Gopher. Saturday morning kids' TV at its 'finest', in that wonderfully tacky late 80's and early 90's glory. Happy days.

So whilst I want to talk about going live, it's not that going live. Maybe another day?

I've been given my date for going live on the pump. Over the phone, I'm still waiting on the letter. But it looks like my 'plugging in day', as the clinic admin told me on the phone, will be Tuesday 23rd November. Wow. That's soon. I'd been thinking that it would have been in December, and pushing it to be happening before Christmas. Stranger things have happened though. 

In the end, I had a choice between three - the Accu-Check Spirit Combo by Roche, the Paridigm Veo by Medtronic, and the Animas 2020.I know how lucky I am to have a choice in the matter, so I spent a long time thinking about it before making my choice. Or at least I think I did. Andrew seems fairly certain I made my mind up pretty quickly, and just didn't want to commit to having made a decision. 

Well, despite having some rather 'interesting' information told to me by the three reps, at an hour that I'd much rather be having my tea/dinner (depending on your part of the country), and the hours of contemplation, I did finally make a decision.

I've gone with the Animas 2020, in 'it goes with everything' black. I was torn, colour wise, but came to the conclusion that I could always get skins for it. 

In the end, the Animas just had an awful lot of features that I liked. I enjoyed the fact it had a customisable database, the low bolus and basal incriments, and I just liked the aesthetic. The screen was large, clear, and didn't remind me of a late 80's text adventure game. The fact that the Paradigm Veo is CGM ready was something that was holding me back, but after a frank discussion with the DSNs, it seemed that with the way the country's funding is being 'handled' at the moment, the chances of sensors being available more freely within the four years I'd be tied to the pump are so slim as to make it rather a moot point. So with that not really an issue, the Animas won out for me.

There were 8 or 9 people in my initial pump meeting, when we met with the different reps. It seemed a mixed group, and I don't think everyone was necessarily convinced about pumping full stop. So it will be interesting to see who comes back, and which pumps they choose. 

I'm not sure how I'm feeling about it all, to be perfectly honest. I thinking having the choice of pump has helped me feel a bit more in control, and I'm certainly more convinced that I was to start with. I just need positivity about the whole process, which I've been getting for the most part from wonderful people on Twitter, and in the real world as well. I know as it gets nearer, I'll become slightly terrified, because that's just the way I am. I just need to get over that initial first hurdle.

A few weeks ago, I found myself listening to one of my favourite songs of all time. That's 'Mrs Robinson' by Simon & Garfunkel. A classic if ever there was one, in my opinion. Now, I normally pride myself on being fairly good at really listening to song lyrics, and thinking about the meaning - that's why they're there after all. But as I sat there listening to the song, I realised I'd never really listened to the lyrics. And when I did, I found the song taking on a whole new meaning. I'd never properly clocked that it was supposed to be about a woman dealing with alcoholism. Neither, it seems, did most people that I'd asked. 

Now, I know this doesn't seem like I'm going anywhere with this, but get on board and go with me - I promise there's a destination!

The line which I found myself being drawn to again and again though, was the line about Joe DiMaggio:

I poked around online for a while, and found an analysis of the lyrics (which was really interesting reading). It talked about this part in particular. How DiMaggio himself had been confused by it. As he said, he hadn't actually gone anywhere, so what was it referring to? 

The analysis says how DiMaggio was considered "the quintessential secular American hero-savior", who was widely idolised, was handsome, charming, talented and 'got the girl'. He was a pop culture hero, who was fading from the spotlight as he stepped back from baseball. 

At the start of November, I will have been doing this whole diabetes thing for a year and a half. Whether you think that's a long time or not is, I think, a matter of perspective. You can accomplish a whole lot in a year and a half. To channel my musical theatre nerd for a moment, let us consider Rent. There are many ways in which you can measure a year. They suggest a whole variety of things, but also measure a year as 'five hundred twenty five thousand, six hundred minutes'. So half that again would be... according to Google.... 788 923.149 minutes. Yes I googled it. That's far too much maths to be doing in my head on a Saturday. 

My point being that if you look at a time like that, it suddenly seems like an awfully long time. On my part, dealing with T1 has become such second nature in a lot of ways that it feels strange to think about 'the time before', because that's almost like another person these days. But that's how I look at it. Other people will see it differently. And that's what I really wanted to talk about. 

So I have Type 1 Diabetes. Big revelation there, but it's true. I was diagnosed at the age of 24, and apparently 'well past' the prime age for T1 diagnosis. It does seem that T1 is thought of by many as a 'kid's disease', being that yes, the prime age bracket for diagnosis is childhood, and for heaven's sake, it used to be called Juvenile Diabetes. What does that mean for the rest of us? Kids with T1 grow up. Adults get diagnosed with it too. I know I'm not the only one who was diagnosed outside of childhood or puberty. 

I remember being in hospital after being diagnosed. A doctor (who is now my consultant) came and asked me if I wouldn't mind talking to some medical students. Because I was 'unusual', and they 'almost never got someone being diagnosed outside of childhood.'. I was put on metformin as well as insulin at the hospital as well. Because I was clearly in DKA, but they still weren't sure I was a T1 for a couple of days. Because I was 'too old'. This did make me feel just a little bit like there was something wrong with me. Apart from the whole broken pancreas thing, obviously. 

Like I say, I know people who were diagnosed outside of childhood, but the majority of T1's that I know were diagnosed as children or teenagers. They're the norm. So what does that make me? 

I've thought long and hard about how to say what I'm about to say. Sometimes life as a T1 diagnosed as an adult can be a bit 'lonely', for want of a better word. You were never a 'child' with diabetes, and as far as I know, my mum and dad have never sat up at night thinking about my diabetes. They've never had to 'deal' with it - it's always been my thing (please feel free to jump in if you feel I'm wrong, Mum, since I know you'll be reading this!).

I have heard from various sources that I 'don't understand', because I never had to deal with growing up with D. I'm an adult, and I've not had their many years of experience. But that doesn't mean that I don't know a thing or two. I've been dealing with this myself since day one. Sure, I've had a lot of help from wonderful people, but the shoe drops with me and no-one else. Just because I haven't been doing it as long, doesn't mean that I don't know what I'm doing. 

I was amazed this summer, watching twitter, and reading the many blog entries about

CWD: Friends For Life Conference. I had always assumed that this event was....well, for children, as the name does suggest. I would never have considered attending, because I'm not a child with diabetes, nor am I a parent of a child with diabetes.  But then I saw all the reports coming in about it (and the Roche conference, but that's another case entirely!). And I wished I was there. I think it's about needing a sense of belonging.

I will never be able to reminisce with you about 'way back when'. I never went to diabetes camp. I never had to deal with teachers not understanding. I never went to a prom or graduation and worried about it. But we're all here in the same boat. We all have 'Lost Boy' pancreases (pancrei?). One day they decided not to grow up, and all ran away to Neverland.  We have the pancreases that never grew up. Mine just ran away a little later. And despite that, I'm here, and I'm on the same journey with you. I test, I carb count, I inject. I hypo, I hyper. I get blood drawn, I think in numbers. It's like in The Velveteen Rabbit, which was one of my favourite books as a child. I do all these things that you do as well, whether you've had T1 since childhood, or if you're like me, and joined in a little later in the game. Regardless of the starting point, we're all real.

 Leaving it til late in the game here, I know, but I thought that, since I missed it last year, I really should get around to doing the '30 things you might not know about my Invisible Illness' meme, being as this is the last day of Invisible Illness Awareness Week for 2010. So here we go.

1. The illness I live with is: Mainly? Type 1 Diabetes, but of course you knew that. However, also Asthma and IBS, which you might not have known. But I'm going to be answering this in reference to T1.

2. I was diagnosed with it in the year: 2009

3. But I had symptoms since: The start of 2009, at the latest.

4. The biggest adjustment I’ve had to make is: Being much more self disciplined, and analytical.

5. Most people assume: That T1 is either the end of the world, or it isn't a big deal. Neither of those statements are true.

6. The hardest part about mornings are: When I've gone to bed higher than I would like, or I've had an evening hypo. Either way, I always feel like absolute rubbish the morning after.

7. My favorite medical TV show is: Scrubs! Love it to death, and also the fact they have a diabetic character (Turk has Type 2, in case you don't watch it) whose diabetes doesn't just disappear after one episode. Also the bonkers humour is just about bang on.
 

8. A gadget I couldn’t live without is: My Bayer USB. Honestly, I can't imagine a meter I'd rather use. 

9. The hardest part about nights are: When something goes wrong, and I have to make the call on what to do.

10. Each day I take __ pills & vitamins. (No comments, please) Well, being as insulin is neither, none, actually.

11. Regarding alternative treatments I: Have no time for people who are flogging false hope through 'treatments' that have no actual medical application. Insulin is the only treatment option for T1. However, I'm not completely dismissive of 'alternative' therapies when they are appropriate. I'm a big advocate of aromatherapy and massage, for instance, but I would never suggest that these should be used in isolation.

12. If I had to choose between an invisible illness or visible I would choose: to instead try and make invisible illnesses 'visible'. It's achievable to think that we can break taboos and educate people about invisible illnesses, whilst science works on cures.

13. Regarding working and career: There's a part of me that's concerned about broaching the subject of diabetes with my next boss, whenever I move on. I think that's part of the reason I'd either like to freelance or run my own company.

14. People would be surprised to know: That sometimes I'll say things are ok, because I don't really want to explain the whole story. But it's not as easy as I'll make out.

15. The hardest thing to accept about my new reality has been: That sometimes diabetes will make demands that you have to pay attention to, and can't push aside. Also sometimes you've got to be a little bit selfish.

16. Something I never thought I could do with my illness that I did was: I've never really thought that there was anything I couldn't do.
 

17. The commercials about my illness: I've never actually seen one. Although, the leaflets that come with various magazines and letters that always seem to be for hearing aids, walk in baths, and funeral plans do annoy me.
 

18. Something I really miss doing since I was diagnosed is: Drinking fruit juice, just because I'm thirsty.
 

19. It was really hard to have to give up: Grazing.
 

20. A new hobby I have taken up since my diagnosis is: DanceSport - I love it.
 

21. If I could have one day of feeling normal again I would: Cherish it. Not having to calculate every bite of food, or think ten steps ahead would be wonderful. Oh, and drink a lot of fruit juice.
 

22. My illness has taught me: That you can't ask for patience without expecting that you'll be given a chance to show how you can be patient.
 

23. Want to know a secret? One thing people say that gets under my skin is: It could be worse, it could be a,b or c. Yes, I know I could have any number of other things. But I don't, I have Type 1 Diabetes. Telling me that doesn't help me deal with what I have, it just makes me feel like I should feel bad or guilty when I find things difficult.
 

24. But I love it when people: Genuinely want to know more, or ask questions.
 

I know that You can do all things, and no plan of Yours can be ruined (Job 42:2)
 

26. When someone is diagnosed I’d like to tell them: It's ok to be scared, but there are people just like you out there who just a bit further down the road. They will help you.
 

27. Something that has surprised me about living with an illness is: I'm actually probably a more well rounded person with my illness than I was without it.
 

28. The nicest thing someone did for me when I wasn’t feeling well was: Just sit with me when I needed it.
 

29. I’m involved with Invisible Illness Week because: I meant to do this last year, but never got around to it!
 

30. The fact that you read this list makes me feel: Like you have a lot of patience! And that you might post your own list.

So I've been a little bit on the quiet side recently. As the old cliché goes, it's not you, it's me. It's been a busy and strange month, and unfortunately, writing here had to take a back seat during that time. 

I did miss you all though! I've been quiet all over the place, really - Twitter, Facebook, forums. Not through a matter of choice, but rather necessity. I had certain things that I had to get done. For the most part, it's done, but some things are still yet to be done.

Relating to my last post, about pumping - thank you to those of you who commented, or spoke to me elsewhere - I really appreciate your thoughts. I have decided to go ahead with pumping, at least for the time being. It does make sense to try. So I'll be starting at either the end of October, or the start of November. No news yet on what pump I'll be using, and I've still not decided whether I want to push for the Animas or the Medtronic. Still one more decision to make there!

October's going to be another busy time. Can't believe how quickly it's rolled around, but it's only a few weeks until I start my MA. With that, and Dancesport starting out again, I'm going to be rather stretched for time. Hopefully I won't go 'dark' for as long as I just did - it's all about the routine!

Interesting piece of news for you though. If you're at all nearby, I'm going to be speaking (briefly) at the Diabetes UK Volunteering Conference for the Northern & Yorkshire Office. So I'll be in Darlington on 9th October, if you're in the vicinity and want to say hi!

So, if you're still reading despite me being quiet for this long, hi, again, and let me know what you think of the new layout!