Saturday, 16 May 2015

The Power of Communication

Welcome back.
As always I'm writing about diabetes today. Again. However this one is for anyone with a long-term medical condition. What works for diabetes works for other pains in the arse too.
I'm often rambling on about how great the Diabetes Online Community is and how it gives you the ability to connect with people who can share the frustrations and annoyance at living with diabetes. 

It also frustrates me that there are potentially vast numbers of people with diabetes who are still travelling along life thinking that everyone else with diabetes has got it mastered and they are the only 'bad diabetic'. 

I'm very fortunate that by doing this blog I'm occasionally contacted by someone who is reaching out for the first time and wanting to feel that they are not on their own. 

I wanted to share with you an example of this as it's made me feel warm inside at how their life has changed. (Although everything is anonymous I have the person's permission to share this story). 

Back in January I got an email from someone who was reaching the peak of frustration with their diabetes. Amongst others things they said to me was:

"I was diagnosed with Type 1 Diabetes in 2013 and feel absolutely defeated! My glucose control is fairly, to put it bluntly, mental. I see my consultant every month (even though it should be every 3-6) and I do everything he tells me, yet he won't give me the go-ahead for a pump despite my conscious efforts still leading to poor control." 

This person had only been diagnosed a couple of years ago but was getting more and more upset at how they were being treated by their healthcare team and wanted some advice on whether they had any chance of turning it around. Through exchanges of emails we quickly agreed that they weren't useless and that to move forward they needed to own their own numbers and if they weren't getting the care they needed then this could be challenged. 

To be fair to this person, they pretty much knew as much as me but I gave you them the confidence to not be ashamed of anything and challenge where it was appropriate. 

I was also very fortunate to be able to signpost them to other sites and groups for further support. In this case I mentioned:
INPUT Diabetes

This week I received another email from them that just filled me with happiness:

"I feel like singing off of a rooftop as I have met a couple of people my age in my area with Type 1 and it's absolutely invaluable and indescribable how it feels to talk to someone who 'gets it'. You have really opened my eyes to the diabetes world out there and I am ever so thankful! I've met some absolutely wonderful people. Yay!"

Through sending one small email this person now has a local peer to peer support network - which is a fancy way of just saying 'group of friends close by'. 

In the space of five months they've turned their approach to diabetes around and by connecting with someone else they've changed their future for the positive. My role wasn't much really as I just gave a few tips and pointed towards other groups that would give them the specific detail they needed to make any changes needed. From this they owned their diabetes again and went looking elsewhere to connect even more.

I feel very fortunate to have been involved but now know that for it to be truly successful this person has to encourage others in the same way. The diabetes community is huge but at the same time small. For some people speaking online and ultimately face to face with other people with diabetes is just not for them. That's fine. But there are plenty of people who don't connect through not knowing about it or a fear of being judged. It's really not like that!

My journey into the online world started in a similar way with the help of Mike at Every Day Ups and Downs and Tim and Alison at Shoot Up or Put Up.

There are plenty of bloggers and writers out there and if you're reading this thinking that you'd love to connect or get help but don't want to be judged or made to feel useless then don't hold back. Most blogs have a 'Contact' button, so use it. Find writers who you like the writing of and let them know it. If you have a look at the links on the right of this page there are a few to start with. It's that simple. At the very least it will confirm to us that we're not only writing for close family - Hi Mum! Without sounding like Billy Graham or Barry Scott it could change your life in such a positive way.

Thank you so much to the person I've been quoting today for allowing me to share and their job now is to encourage others. The power of a community of peers to change individual lives for the better cannot be underestimated. 

Thank you, you and yes you, for reading. 

Friday, 15 May 2015

Animas Sports Weekend 2015

Last weekend involved a trip to the fifth annual Animas Sports Weekend at Loughborough University. 

After hearing and reading such positive reviews of previous years I knew that demand would be high so as soon as I found out applications were open I filled in the form and got it sent off. Thankfully I was in the first 50 to apply and I'd secured a place! Excitement built over the months and with typical coincidence my biggest bug of the summer arrived the day before. After a little weeping and moping around I realised there was nothing I could do about it so I might aswell just enjoy it anyway! 

I arrived at the Burleigh Conference Centre at about 2pm in advance of the 3pm registration. After getting the keys to my room I went and did a quick unpack before nervously going downstairs. Although I'd met a few people elsewhere before the weekend already and communicated online with a few more I'm not a natural for walking into a room of strangers talking and just diving in. So with a few nerves I went back downstairs and started chatting. That's pretty much how the weekend continued whenever I needed to go into a room. There was always someone there to chat with and share experience and pick up a few tips. 

You might be able to see me lurking at the back of the photo below. I'd obviously messed up the dress code. Those in green t-shirts were official Animas Heroes and those in blue were Animas staff and volunteers. Slowly I shrunk into my blue t-shirt and got it changed at the earliest opportunity into my white delegates shirt.

Next up we went into our first seminar of the weekend. This was led by the always knowledgeable Dr Ian Gallen and gave a fantastic grounding of information that would be used through the weekend and now in everyday use.

The 'classroom' sessions were always great in that discussions on real-life experiences were mixed in with qualified advice. At this point I'll let you know I'm not going to paraphrase or try and repeat what was said. But I will point you towards the website set-up by Dr Gallen to give advice on diabetes and sport -

Following the afternoon seminar we retired to refresh before dinner that evening. The food was marvellous and I found myself sharing the table with many great people including a delightful lady called Ellie. An experienced mountain runner she was an endless source of fantastic tales including self-teaching a diabetes dog (more of those later) and then taking the dog skiing!

Saturday was always scheduled to be a busy and so it proved to be. An early breakfast (7am on a Saturday!) was followed by another seminar led by Dr Alistair Lumb who provided further advice on insulin and carbohydrate management when exercising.

Next up came the practicals. These were to be done at the sporting facilities around Loughborough University. The bus trip on the way highlighted what fantastic options for sport are available there. On the way we passed games of many sports in action including cricket, hockey, football, tennis, netball and quidditch!

The delegates had been split into four groups. I was in group A and we paired up with group B to do spinning first. For those not up on the lingo spinning mostly involves sitting in lines on an exercise bike getting shouted at by the incredibly fit instructors at the front of the room and trying to keep going at the rhythm of the pumping music.

Here's me looking fresh and ready for action. Thankfully there isn't an 'after' photo to compare with.

After the spinning we had a short warm down and then moved on to running. Up until this point my blood sugars had been behaving and I was feeling quite confident as we moved outside. Running is what I like to do the most of any exercise but the spin had really taken it out of me. Rather than taking it easy thinking about the run ahead I'd gone all out and my fitness levels meant quick recovery was going to be a challenge. 

As we headed out on the run we split into three groups. In the interests of self-preservation I chose the middle group. This meant we did a steady 5km in about 31 minutes. A few minutes rest for testing in the middle for safety and hypo correction meant we returned not too out of breath but exhausted enough to feel a little like Magic below.

Magic is a bit special. Magic is another example of a diabetes alert dog and is owned by Claire. Magic lets Claire know when her blood sugar is going too low or too high. In the instance below Magic is sharing our relief at the end of the exercise. For now!

My blood sugars on the run dropped to an almost inconvenient 3.1 during the run but had recovered to 5.5 by the end. Not ideal but thanks to the morning seminar I knew the cause precisely. Too much insulin on board.

Next it was time to jump back on the bus to return to the conference centre for lunch. This time everyone was watching the carbs and trying to work out the best way to refuel without causing blood sugars to fly high. I'll admit to failing badly here. My BG went up to 15 and decided to stay there for the next hour. This led to a knock-on problem that we'll come to later.

The next seminar was all about nutrition and was led by an expert nutritionist. As she focused on food only it was interesting learning specifically about diet without many tie-ins to insulin delivery. I really liked this hour and Candice did a great job of keeping everyone interested in the post-exercise, post-lunch slot that could have easily been filled with sleep.

After nutrition came a trip back to the sports hall. On the way we passed a sport that I've never seen before but so much want to do!

Zorb football (soccer) has to be in my future at some point. 

Anyway we were on our way to do circuit training and continue to our practical application of what we'd learnt so far. I did say I wouldn't be passing on any tips but this is where I got wrong so I'll explain why. Firstly I'd been shovelling in insulin for the previous 90 minutes to try and correct my lunchtime high. This meant that by the time we arrived in the sports hall for the circuit training my blood glucose had arrived at 8.1 but I had too much insulin still active. Tied to this I'd misunderstood some advice earlier in the day. In common with a few others I'd wrongly guessed that the upcoming exercise would be short-term anaerobic meaning that my blood glucose had the potential to rise. What actually happened was that the high intensity exercise was prolonged so this turned it into aerobic session meaning that blood glucose would drop.

Sadly for me this led to a very quick drop and I had to dip out of the last round of the circuits. The huge advantage of this weekend was the ability to try different things and if it all went a bit pear-shaped there was plenty of expert support around help. In this instance one of the dietitians James kept a watchful eye while I guzzled down the Lucozade to get my numbers back above 4.0 mmol/L (72 mg/dl).

I will say that again the student from the university who led the session was outstanding and fully accommodating to allow participants to hydrate and test at regular intervals. Their enthusiasm and goodwill was unending and are another group from the weekend who deserve a lot of praise and thanks.

After the circuit training we returned to the hotel for a short rest before dinner. It's worth mentioning here that in every moment of non-exercise there was always chance to speak to either my fellow participants, the heroes or the staff about living with diabetes. For me that meant I could speak to Drs Gallen and Lumb about very specific questions I had and they both gave great advice whilst listening to what I thought too. This for me was priceless and worth the trip alone.

Dinner on Saturday evening was preceded by a talk by the wonderful Roddy Riddle who is living proof that diabetes shouldn't hold you back from anything. After his pre-dinner speech I had the greatest fortune to be sat with him at dinner and talk about some more of his past and future challenges ahead. Truly inspirational. Have a read through his site linked to above and then have a look at his next challenge here. 350 miles across the arctic! Even writing that down is mind-blowing!

After dinner was a small awards ceremony with many celebrated including a certificate for one participant in the weekend who'd only been diagnosed for two weeks. I can't imagine what a rollercoaster he'd been on up to Friday but I'm sure by the time he left on Sunday he knew that although it might not be easy, nothing was beyond his reach.

Much wine followed and considering the exercise we'd all taken part in, insulin juggling and wine drinking Magic's owner Claire kindly volunteered to do a phone round at 3am to anyone who wanted a wake-up call for a blood test. Very generous and appreciated by those who took up the offer I'm sure. 

Early to bed for me (01:30) but not before I'd chance to catch up with a few more fantastic people and pick up some tips and "don't ever do x" advice. Oh and a few more glasses of red wine.

The next morning was a lie in (8am breakfast, 9am start) and a final seminar to recap and a chance for me to say a personal thanks to a few people. Sadly because I had to return home for some very important non-diabetes stuff I was running out of the door at 10:15 and didn't get chance to speak to everyone I wanted to. So please accept this blog as a thank you for your time, advice and conversation whether you were with Animas, a hero or a delegate.

A lot of people over the weekend experienced blood sugar levels a little higher than they'd normally be happy with. This can be explained that along with all the gorgeous food we were also trying to manage the adrenaline being released. Personally I was so excited to be in this environment that I know my blood sugars rose because of this. This is another example of how keeping the blood glucose line as flat as possible is always a challenge in new environments.

The charge for the weekend is £150. Before I signed up I thought this was steep and wondered if it was fair. Wow! How wrong could I be? Two nights in a 4* hotel, full board with a few glasses of wine on Saturday night. Add on to that worldwide respected experts giving group and one to one advice and the access to world-class sports facilities and you've got an absolute bargain. And the final priceless benefit was the ability to mix with over 50 other people with diabetes and a dog to share horror stories, achievements and comedy moments.

To maintain the intimacy and quality of the program numbers are limited to fifty delegates. But priority is always given to first time attendees. So if you've not been before and you do any form of exercise I would thoroughly recommend it. 

As a Medtronic pump user I was a little nervous going into the weekend that everything would be about Animas and pumping. It wasn't at all. There was a lot that was focused on insulin pumps but at the same time there were plenty of delegates who were on multiple daily injections and they got plenty of value from the weekend too. In relation to the brand of pumps, there were many different manufacturers present and apart from some light-hearted Animas promotion there was no offence taken by anyone at my (super-duper) 640G. Added to this there was a variety of glucose measuring devices on show. I had the Enlites to go with the 640G pump, some had Dexcom sensors to go with their Vibe pumps, others had standalone, Dexcom, there were a lot of Freestyle Libres on view but the vast majority of delegates were happily using finger prick blood tests. Once again an example of each person having different needs and preferences.

Once again I'll say thank you to Animas for putting the event on and to all the staff, heroes and delegates I spoke with thank you for your time and thoughts.

Now I need to get the forms for deed poll so I can change my name and go back next year!