Monday 20 December 2010

Pick your battles.

Everyone living with type 1 diabetes, or indeed another other chronic condition, has coping techniques. I've spoken about this a couple of times (here and here). I think we'd all go mad if we didn't, even if we don't realise it!

One of the best ones I have, for me, is one I've been thinking about a lot recently. I'm kind of at a stage with my diabetes where I am...well, burning out. The desire to take excellent care of myself is there, but the motivation is not. That's not to say I am sitting here letting my body do whatever the hell it likes - I am still taking *good* care of myself - but I know I could be doing a lot better. This has caused a lot of negative feelings towards myself, I am berating myself for something I need to be doing. Which in turn makes me feel even worse.

I am really trying to take active steps in regaining my motivation. I think, with the switch to pumping, everything has become a bit 'much' - I need to readjust the focus of all of this. The huge battle I have faced with getting access to an insulin pump, and gaining funding for my very own pump, has used up huge amounts of my mental energy, and has dug into my reserves. I think this has a lot to do with how I am feeling now. I need to recharge my batteries.

As a child, I apparently went to battle armed with a fork
& a Christmas cracker hat
So! The thing I have been reminding myself of: pick your battles.

This is to remind myself that as long as I have done what I can to keep my BG levels in range, I do not need to beat myself up if they go back out again. If I hypo, it is not the end of the world. If I cannot get my BG levels below 10, there is something I need to look at - I don't need to give myself a hard time for it. I need to deal with the problem, and move on. If it could have been avoided, I'll usually sigh at myself, tell myself to do better, then carry on. I cannot battle everything I encounter in D-land. I just do not have the energy to go to battle all the time. I need all that precious energy for motivation!

It's a frame of mind that I have had to force myself into. I find it helps. Some people might find it too cheerful or jolly or the like, I appreciate that. I am a person with a chronic illness and I have the same amount of mental energy as someone without - so if I can find a way to conserve that mental energy, to stop it going on the diabetes, I'll do it.

As I say, I have found this technique has helped me, a lot actually. I'd encourage everyone to give it a try. Instead of burning precious energy on this stupid condition, pick yourself up and move on. Don't fight every battle - it just isn't worth it. Pick the ones that need fighting, and leave the rest for another day.

Sunday 19 December 2010

Speak of the devil

2 days ago, I wrote about the way I am still trying to get 'up to date' with thinking through the technology I have available to me.

Today? I'm coughing, sneezing, feeling all stuffy, and my sinuses are hurting.

So on goes the 140% temp basal, and small prayers that I will get through this okay!

Friday 17 December 2010

Changing old habits?

...or rather, old ways of thinking.

With all this cold weather, I'm reading lots of stories of adults and children with type 1 getting ill. The majority of people with type 1 will, when ill, experience high blood glucose levels. I'm not a scientist and can't explain why it happens, but it does, and it's incredibly frustrating when it does happen.

I haven't been ill in any way so far since being on the pump. I'm yet to get a cold or a bug or anything like that. Touch wood it stays that way. I've had a few 'off' days, where I've been a bit under the weather or felt generally ill, but nothing that's knocked me back, yet.

But my old school ways of thinking has made me question myself a lot recently.

I was diagnosed in 1991, almost 20 years ago. I was on mixed insulin for far too long (until 2006, at my own discretion). Being on this regime for so long meant that I got to know the way things happened for me. One of these things being illness.

When on mixed insulin, with no access to fast acting insulin (which some families did have access to, I was one of the ones who did not), the basics of sick day management went as follows:

- your BG levels will shoot up
- they will stay up
- drink lots and check for ketones if you get worried (ketones are produced when the body has no insulin to tuck glucose away into your cells - thus the body has no fuel source, and breaks down fat to use as fuel, then acid known as ketones are produced and essentially poisons the blood, to put it in layman's terms)

I find myself, today, in 2010 with my pump and my awesome testing kit and my fast acting insulin on tap, still sometimes floating back to this way of thinking. If I'm getting ill (I've had a few days when I've had high levels and thought I was becoming ill - only for it to fizzle out into nothing) I tend to just sit there being 'okay' with higher numbers. I accept them as part of the diabetes deal - only the obvious thing is, I can do something about them! I won't let myself sit in the teens, but if I see more 8s/9s/10s/11s than I would like, I just kind of sit back and let it happen rather than setting a temporary basal (giving myself more insulin per hour than normal).

I'm trying to put my thoughts into concise words. I suppose what I am saying is I am so, so used to the old school ways of thinking that sometimes I literally forget that I have the technologies to do something about these situations! When I'm ill, I accept higher numbers as part and parcel of being ill.

I am trying to get into the habit of questions myself on a more regular basis - am I doing everything I can right at this moment in time to get my BG levels in range? Would a temporary basal be useful right now?

In other news, I'm planning to do some basal testing over the next few days. What fun that will be!

Monday 13 December 2010

James!

I have spent the past few months quietly, excitedly anticipating seeing my favourite band: James (wiki page HERE).



I'd happily have the lead singer's babies:

Tim Booth, looking as hot as ever - yes he is 50!

They were mostly famous in the 90s and sang songs such as Sit Down (that video is live from last night!), Sometimes and Laid. My dad has been a fan of them since day 1 and thus I grew up listening to them. They broke up in 2001 but reformed in 2007 and we have seen them at every UK tour since then (sometimes twice on a tour if we can make it).

I had so hoped I could write this post without mentioning diabetes. But naturally - diabetes had other ideas.

Before we went into the soundcheck - we had purchased extra tickets to see the soundcheck and have a question & answer session with them - I checked and found I was 16.8. I had changed my set about 5 hours previous to this, and had hypo'd in the mean time - so I assumed the set had worked. But such is life.

I gave a correction via the pump, waited an hour - then discovered I was 22.3. I rummaged around in my bag only to discover my spare set had managed to go AWOL. Thankfully I had my pen with me, so I was able to correct down - but I have to say, it took what felt like hours and hours to come down. I'm guessing that's a combination of ketones and insulin resistance. However, the show must go on!

During the soundcheck, which was absolutely amazing, I was feeling incredibly sick, thirsty, headachey, etc. I really want to keep this post focused on James though so I want to tell you all about it!

The soundcheck and q&a were very informal, there was only about 50 people there, so in between songs they took questions. My dad asked about a song, Five Oh - he wanted to know why it was called Five Oh and the band explained that when they were jamming that song back in the day, it didn't have a name but they needed to remember it and apparently it reminded them of the old TV show Hawaii Five-O, so the name stuck!

As I had (literally) run to the front/centre of the stage, I also asked a question about the huge anthology thing they are releasing next year and found out it's going to be delayed by over 6 months! Very sad - I had planned to buy it for my dad's 50th in Feb! Oh well.

After that had finished Tim came down from the stage to sign stuff and I got my pass signed. I asked him about the 5 Rhythms dance class he goes to in Brighton (he lives in the same city as me yayyy) and he told me I should go to them. So I think I might!

We then headed back out to get something to eat. I was still 22+ and so just had some fish (I took the batter off). Because of our VIP passes we were let into the main gig first, so we got good standing room - to the right of the stage, but at the very front up against the barrier!

Here's the token diabetes rant - the venue had run out of diet pepsi on tap. I explained politely that I was type 1 diabetic, could not drink anything else they had on offer - then spotted that they had pepsi max in bottle. I asked that due to the circumstances would they be able to sell it to me at the same price as the tap pepsi. The young girl behind the bar stroppily told me it wasn't her problem and that I would just have to pay the full price. I was getting very hacked off with her attitude but my dad told me to chill and go and get somewhere to stand. However, when he came back with the drinks I told him I felt strongly I wanted to speak to a manager (the bar girl had denied there was a manager around). The manager was very empathetic, said he was sorry he did not have anything else I could drink and that there was no excuse for bad manners and therefore he would speak to the bar girl. I explained that whilst I did not want to cause a fuss, I just wanted the same opportunity to buy the same priced drinks as everyone else in the room. He then offered to get me another drink for free - he offered me OJ to begin with which I politely explained I could not drink due to the sugar content. He happily passed me another bottle of pepsi max and I left it, feeling very satisfied that he had taken my concerns into account.

(let's have another picture of Tim Booth to make us feel better)


But the GIG! Oh my goodness, the guys were on TOP FORM last night. I've seen them several times now and this was definitely my top gig I think. They played a brilliant variety of songs, ranging from their REALLY old stuff right up to stuff from the latest album. My favourites were Lost A Friend (again, a video from last night's show - so rarely performed he had to have the lyrics on paper!) and Johnny Yen.

Why was Johnny Yen a favourite?! Well - Tim climbed down from the stage, and asked my dad to hold his hand as he stood on the barrier in front of us!! He looked down at me for a while whilst he sang, I could straight up his shirt and THEN he climbed over the barrier aka slid down in between me and the barrier! I practically cuddled him! He headed into the crowd and did some crazy dancing before coming back onto stage.

When I read twitter this morning, Tim had tweeted that the band felt like they had blown it. I 100% disgaree with that! The energy in the room was brilliant. The venue itself - the O2 Academy, Birmingham, isn't very well laid out and there were a few issues with bass volume (I lost most of my voice and my hearing due to standing too close to the speakers).

I'm afraid I'm one of those fans who, even if the gig did go horribly wrong, would LOVE it. Their music has been such an inspiration for many years, such a comfort. Often it's their lyrics I turn to when in a crappy mood - especially with the diabetes/living with a chronic condition thing.

By the end of the gig, I was sitting in the 11s/12s, feeling much much better. Due to the heat and the massive drop in BG level over the course of the gig, I had felt quite faint at some points and got in a bit of a panic that I would actually faint - thankfully I didn't!

The icing on the cake was my persistence in geting a setlist. At first we were told noone would get one. Then some got handed out to a different part of the small crowd that remained. I finally gave up and went to get my coat from the cloakroom - only to eye up one of the stage crew handing a security guard the last setlist! I ran over shouting "ME ME ME ME ME!" and got it off him!

So thanks to my dad, who paid for my tickets (to the gig and the soundcheck), who paid for a taxi home, bought me an official tshirt (we normally just buy them cheaply outside!!) and bought all the drinks. Also...a huge thanks to James for being, in my eyes, the coolest band around.

Monday 6 December 2010

Good days and bad days

I've just read Mike's latest blog over at The Type 1 Game. In summary, it describes the horrific low his daughter had, and the ensuing rollercoaster of blood glucose levels - and yet when asked how her weekend was, Adele said she'd had an 'awesome' weekend.

It kind of got me thinking a bit about how much I bring diabetes into my 'bigger picture' - such as a question like, how was your weekend? My immediate thoughts are never with diabetes. I think it's because it is so ingrained into me, that I just don't let the highs and the lows register on my radar on the grander scheme of things.

As much as the highs and the lows affect me at the time - no matter how upset I get, or how crabby I end up feeling - they are such a part of routine that I just don't register them. At the time of course I do - but I soon forget them.

Is that a good thing? In my opinion it is. I'm able to deal with things in the moment (or hour or hours) but I'm also able to forget them quickly enough. I think it's a coping mechanism, a way my mind lets me carry on with things despite the proverbial roller coaster it is riding.

Sunday 5 December 2010

Ouch!

About a week ago, I decided to try a new area for my cannula - I went for the top of my right thigh. I wasn't sure of exactly the best place to put it, so I picked a bit that felt nice and 'fleshy' (for want of a better word).

It went in fine, but a few hours later it started to get tender. I figured this was because it was the first time I'd used that area, so I persisted with it - my levels were fine.

The following morning, after sleeping on it (I toss and turn in my sleep, so even if I fell asleep on the other side, I knew I'd end up lying on it at some point - I'm a side sleeper), it was red, hot and sore to touch. Safe to say I changed it and it soon settled down.

I think perhaps it was a little too close to muscle. I'm not sure. But I'll definitely be sticking to my 'really fleshy' areas, just to be on the safe side!

Thursday 2 December 2010

The battle? Half won!

Last week, I saw my consultant. I had received a very mysterious email from my DSN the week before saying the consultant was 'keen' to see me to discuss pump funding. I was very impatient and excited to see him after hearing that!

I had travelled from Brighton to Birmingham a couple of days before, and due to travel back after the appointment. Tom had come up to Birmingham on the day to be at the appointment with me...but before that?

We hit CADBURY WORLD!


Now Cadbury World provides a LOT of childhood memories for me. The big 'CADBURY' on the top of that building? You can see it from the top of my mum's road (aka where I spent years living!). I went on several school trips there. Over the years it has expanded, changed, developed, and had loads of cool features added to it.

Just a hint: on Thursdays, it offers 2-for-1 tickets; you just have to print out a voucher and voila! 2 tickets for the price of one.

Unfortunately, being a school day, it was rammed with school children and we couldn't get away from them the whole time. Definitely took away from the visit, but certainly didn't ruin it. It did mean we missed out on writing our names in chocolate though, there were so many kids we didn't even get a look in. Oh well!

After that we made a pit stop for some food and carried onto the hospital. Of course, being this uber important appointment...naturally the clinic was running behind by over 90 minutes! I sat there, biting my nails, twitching my legs, feeling very hypo (I wasn't though! It was just nerves).

The eye screening lady tried to get me to have my eyes done before I saw the consultant. I pointed out that I normally like to be able to see the consultant...to which she replied "well, do you ACTUALLY need to be able to SEE him?!" at which point I firmly told her I did NOT want my eyes testing right before I saw him and I would have it done after the appointment, which suited her fine. Honestly. Yeah, I've travelled all this way and spent 90 minutes waiting just so I can see a blurry face...not!

When I finally got in to see the consultant, he didn't waffle on too much - and told me that YES, he is going to request funding for a pump for me!

He also:

- had a go at me for continuing to use my pump after the trial had 'finished'
- told me he had no idea what happens now, he will just write the letter
- had clearly been listening to my DSN, who believes I test far too often (in comparison to some, I'm a relatively light tester; this is why sometimes I have to filter the info I send to my team, because I get berated for testing 'too much' - too much, in their opinion, is more than 4 times a day, just so we're clear on that one!) as he quizzed me on how often I test. I'm afraid to say I gave him the answer he wanted to hear, and told him pre meal, waking, and before bed.
- poked around my feet and said they were fine

So...as soon as Brighton PCT send through the funding, I will officially be a pumper! Remember all that time ago, in July, when I said I had my heart set on a Medtronic Veo (purple)? After seeing the Animas pumps at Friends for Life UK 2010 I am really torn. There are features I like on both of them.

Medtronic Veo:
+ purple!!
+ smallest basal AND bolus rates around
+ the bolus button, the most used button on my pump
+ about as easy to use as you can get
~ has CGM connectivity; as an adult in the UK, this is unlikely to ever be a possibility, but I like that the possibility exists
- can't see basal history (on the 512 at least)
- not waterproof (I hear some of you going "ppfffftttt why would you care?!" well ladies and gents, water sports are soon to be appearing semi regularly in my life, as I train for a fundraising event next year!)
- I seem to keep running into problems with the sets. I realise this is just bad luck, but you know when something niggles in your mind...well, this is a niggling thing.

Animas 2020:
+ has colours I would be happy to wear (can't beat purple though!)
+ smallest basal rates going
+ easy to use and navigate
+ 500 item food store; not sure how much I would use it, but sounds like a useful feature
+ I liked the aesthetics of the pump; small, lightweight, not too clunky
+ waterproof
+ more basal rate profiles (ie day off, work, weekend, etc)
- its bolus increments could be smaller, ala the Medtronic
- no CGM compatibility; again a moot point really as I won't ever get funding and am incredibly unlikely to be able to self fund one (must.start.playing.lottery)

Until I hear from the PCT, it's not something I really have to knuckle down and think about. If anyone
has any thoughts, opinions, etc - please let me know! I'm always up for hearing what you think.