PWD Conference

Last weekend John & I ventured across to Nottingham to go to the PWD Conference held by GBDOC and TeamBG, the first conference for PWD by PWD. No medical professionals or stands. Just everyone learning from each other and enjoying themselves.

I'll be the first to admit how nervous I was on the morning, I've been to a couple of forum meets a couple of years ago which were great however I've never been to a conference! So I was very excited/nervous about going, and meeting various PWD from Twitter and the weekly chats. (John got this by all the running around and over checking I was doing...)

We arrived just as the conference got going, and it was lovely to finally see the wonderful people who had organised the event, Paul & Midge! It was great to see so many people attend, and also funny trying to figure out people from their Twitter names (I think it was suggested to have name badges next time).

The agenda was a complete blank canvas. People who wanted to learn or speak about a specific topic were asked to bring it to the floor for us to decide whether we wanted a session on it or not. Nine topics were chosen, and after a very soothing cup of Early Grey (yes tres posh I sound) we were given our rooms. Paul was very clear on the sessions, if you felt you weren't getting what you wanted out of it or you finished early, go into another room and join another group! It was a very free flowing format, but worked brilliantly :)

I went with the intention of getting more information on the pump with peoples varying experiences, unfortunately this session clashed with the 'Partners Moaning' Session which John was keen on going to. John puts up with a lot with me and my Diabetes, so we decided to go to the Partners Moaning to give him chance to talk to others in the same boat as him. 

Tea break and the first #bgbingo of the day. I cannot describe the smile I had on my face when all you could hear was the clicking of lancets!

Session one was held by James, who attended with his wife/partner Phillipa. He spoke of her 'monster' and how they cope during hypo's/rows and other day-to-day scenario's. There was only myself and another lady with Diabetes in the room, so occasionally we piped up with our two penneth, but it was an eye opening experience to hear what partners go through. A lot of common issues were when to intervene when your loved one is low/high and needs to test, getting them to accept hypo treatments and how to deal with them when in an aggressive/emotional state of mind. John said he found it very useful, and I did too. We've even gone drink shopping so when hypo I have a drink I actually don't mind!

Session number two was 'Stigma in the Media' held by Lis (who has had D for 50yrs!). This got a lot of interest from people so was held in the mahoosive room. Lots of mention of ignorant comments in the media in the past few months and how we as a community can change that. A few people agreed that although these comments are infuriating, that a response needs to be handled in a calmer, more structured way to get the point across. People sharing awareness through their loved ones/co-workers etc. was seen to be the easiest way to spread awareness, however bigger platforms need to be reached. Lis did suggest having a GBDOC TweetChat about lobbying and people volunteering to create some sort of organisation or branch of GBDOC itself to handle situations like this. Personally it'd be nice to see some adverts on the TV with how to spot the symptoms of Diabetes or how to help someone who is hypo, rather than just assuming they've been drinking for example.

Lunch time! And a further highlight of the day for me was meeting Vicki. We've been talking via Twitter for quite a while, so to finally meet her was awesome! I think John compared it to meeting a pen-pal :) The only downside was that we didn't stay for the evening social so didn't get chance to talk for long.

Session three sadly wasn't chaired by the person who suggested it so the 'Mental Health' discussion didn't quite run as smoothly as the previous two. Another very popular topic, which meant the mahoosive conference room. I think the sensitive subject coupled with the size of the room meant people (such as myself) weren't overly forthcoming with their views/issues. Lots of people highly praising the care they've received in Nottingham, one lady mentioned she goes to Diabetic counselling in the city centre which I thought was great. Others discussed how Diabetes affects parents looking after growing children and switching the balance when they start getting older. The major point raised was that there needs to be more support available, and that healthcare professionals need to be more aware so they can recommend to people.

I can't begin to say how happy I felt coming home from the conference, and how I wish these events happened more frequently. Not feeling so alone and learning from other PWD was brilliant and a great confidence booster. John & I took a lot out of it, and I think it's brought us closer together as a D-unit :)

Can't wait for PWDC '16!

Results

Wednesay was HbA1c results day for me, and I have to admit I was bricking it.

The thought of it going up again got me panicked. I had my bloods taken before my holiday as I'd had a pretty good few weeks beforehand and didn't want my holiday to be taken into account. A couple of the guys at work even noticed I was a little on edge.. so I must have been bad!

Shortly after arriving my dad turned to me and said "isn't that one of your muckers from work?". I looked around and couldn't see anyone. Turns out one of the sales people I work with also had his appointment that afternoon. He's a man in his early 50s, and likes to think he's my work dad so took great delight in seeing me and sitting right with us. To top the moment off the nurse came along with a piddle pot for me.. All I heard was "Errrrrrr Ems!!"

Arrghh! *dies of embarrassment*

So move into the other waiting room and two ladies who I've never met before come out and call my name. I jumped up feeling a little like I'd been called into the Headteachers office.. Turns out they were both new and just wanted to check how I was doing, and if I had any questions or concerns. Really I could have done with the chat AFTER getting my results xP

After talking through BG results, carb counting, annual checks and holiday stuff, one of the ladies suggested a NovoRapid Echo pen (a half-unit pen if you've not heard of them). She said it might help me with more precise carb-counting as a full unit can often be too much or too little. So next week I'm going to make an appointment with my GP to see if I can get them on my prescription, along with some more test strips (getting fed up of my chemist constantly not having them ready when I need them, 100 strips just doesn't last long enough).

Finally the consultant calls my name, and after the usual questions (What units of Lantus are you taking/are you still carb counting/do you have any concerns or problems) I get told that my HbA1c has dropped from 8.4% to 8.2%. I know that any drop is a great result, but I can't shift the feeling of disappointment that it hasn't gone down a little more. 8.2% is where I was this time last year.

I admit this to my consultant, explaining that I'd had a great few weeks before my bloods so was expecting a little more of a drop (only like another 0.1% or so - nothing major). I asked if my bloods could be spiking too much between BG tests resulting in a higher average. A blank face looked back at me, and all I got was "well if your meter results are coming back good then you should be fine".

So I came out feeling a little.. deflated. I find it a lot easier talking to my local GP/Diabetic Nurse as they're a lot more approachable, so am saving my questions for them. I know consultants have to see so many patients in an afternoon, but making me feel like I'm on a conveyorbelt isn't going to encourage me to speak more frankly about my Diabetes.

DSMA October Blog Carnival - Listen to Teacher

This month's blog carnival is all about what HCP's/diabetes educators can learn from us :)

I think there's a pretty long list, unless you have one with Diabetes (like my GP) or that have had Diabetes in their family. They can be a big part of your journey, so the more they know and understand the more people they can help now and in the future.

A great support network is brilliant to have throughout the many ups and downs, and conflicting advice from a HCP and people with Diabetes can be very confusing, especially when you're a newbie!

So here's my two penneth!

Diabetes isn't all about numbers - Numbers don't always give you the full story as anything and everything can affect results. Meters aren't 100% accurate so you never really have something solid to work on. Emotions also have a massive impact on results, so emotional support is a must, possibly more than anything else.

Connect with other PWD - HCP's suggesting places online to look for help, support and guidance would be brilliant. I spent a year in Diabetes limbo, not really knowing what I was really doing but finding forums and sites like DSMA really do help and should be available on prescription! They can turn your frown upside down and make you feel less alone.

We're not just Diabetic, we are people! - We have lives outside of being Diabetic, it doesn't define it. Its just a little part of the jigsaw that makes us who we are :)

We do talk to each other - We know the levels of care others are getting and what we should be getting. Also we hear about new D-related gadgets etc so we're going to ask about them and if we're eligible to have them. Just because HCP's don't suggest them doesn't mean we don't know about them!

This post is my October entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/october-dsma-blog-carnival-2/

DSMA April Blog Carnival - Don't Let Me Fall

This months blog carnival topic is all about support..
Describe your ideal diabetes “support group”? What would you discuss?

Unfortunately I don't have any local support groups in my town, I'd love to have the time to start one as being with other PWD is great :)

Testing together, injecting together (or showing off pumps) is awesome!

If I did have a local group I'd love it to have people with various types of D and diagnosed at various ages. On my PDAC course everyone was very different which made it more interesting for me and I learnt a lot in a short space of time. I'd like to feel welcome and comfortable to be myself, whether I'm loving D at that moment or not.

I'd also like it to not revolve around D completely, I like talking about films, hobbies and other stuff apart from D too! Support groups need to be ''real' just because we live with it doesn't mean we wanna talk about it all the time.

With regards to what I'd discuss, I guess it'd be the problems I've had in the past and fears for the future along with successes (and a good old chunter) too :) I like learning and trying out new things with my D to help and also to possibly help others with their D journey.

This post is my April entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/april-dsma-blog-carnival-2/