It’s been a week since we’ve arrived home from PWDC16 (People With Diabetes Conference 2016) and I’m only just finding the time to write a blog about this fab conference so I’m way behind everyone else. But hey ho, here goes.
I was thrilled when I was informed that a generous donation had been made to the GBDoc meaning that the PWD conference in Nottingham was now free of charge. Disappointingly, when the information came out about the conference we just couldn’t afford for the two of us to attend (me and the hubby Allun that is) on top of travel and hotel expenses. We had been to last years first conference and had really enjoyed it. As soon as I learned of the change I text Allun asking if we could now attend, his response was “well if you can find a hotel we can go”. So the computer was fired up and I was excitedly looking for somewhere to stay.
Time soon came around for the weekend away. I think we were both looking forward to it. We left on the Friday evening after work and planned to stay over till the Sunday. This year there were to be two days of the conference instead of one. I was really looking forward to meeting up again with some of the people we had met last year and also some others who were attending for the first time. People who I have connected with via Twitter initially through the #doc (Diabetes online community) and #GBDoc and later on through Facebook.
We arrived in Nottingham around 7.30pm, got settled in our room then went down to the restaurant for some food. First time in a long time that we’ve sat at a table for 2 (without 3 kids basically).
Next morning we made our way to Colwick Hall, a very impressive building. WE spotted a few familiar faces in the car park said hello and made our way to the conference. It was held in an equally impressive marquee that was situated around the side of the main building. As we went in we were greeted and book in by Rhodri. We put our names on a “Hello my name is …” sticker and popped it on. Immediately we spotted Abby & her husband James, Adrian & his wife Sue, Ellie and her mum Mary. I had met Abby, James, Adrian and Sue last year so was meeting Ellie (and her mum) for the first time. All we stood around with a cuppa in our hands having a good old chat. It didn’t feel like it had been a whole year since we had met for the first time. That might have something to do with interacting via social media over the year.
Before I go any further PLEASE forgive me if my memory fails me and I don’t mention you. We saw a few more familiar faces arrive, Phil, Jules and her husband Lee. Other people introduced themselves as they were unrecognisable due to their profile pics not showing them, for example Steve (and his wife Suzie). A short while later Lydia arrived. I also met Alyssa at some point too.
Soon it was time to take our seats and Paul opened the day, explained the open format, he asked us to write up the type of things we’d like to hold sessions on and to pop the sticky notes on the board. The board filled up rather rapidly with lots of ideas. During this time I noticed that my BG (blood glucose) was dropping so I was testing and treating with Jelly Babies. I did this a few times and it just kept dropping. Alex must have noticed me stuffing my face with sweets and from the front mouthed to me “are you ok?”. Thankfully, they had started to rise back up so I was able nod my head (thanks again Alex for making sure I was ok). This is one of the great things about being in a room full of people with diabetes, they know exactly what’s happening. I wasn’t just being rude rustling around in my bag for my sweets, I needed them. It’s great to be with people who just “get it”.
I had two things that I had gone to the conference with that I wanted to know more about. 1) I wanted to know how to start exercising, as someone who does not exercise, because I don’t know how to work things around my insulin and not go hypo (short for hypoglycaemia or low blood sugar) for hours later. I used to go to the gym years ago but I’d end up consuming more than I was burning off so I didn’t see the point in going anymore. 2) How others dosed for those “tricky” meals that include carbs and fat, like pizza. Dosing so that you don’t go hypo before your body finally decides to release the carbs and for the 4 to 6(ish) hours later when it’s still releasing the carbs.
Alex started to pair up similar ideas so the sessions could be arranged. We all had a voice in the arrangement of the day so people would be able to attend all the sessions that were most important to them. My queries went into the Sports and Exercise session and the Food/Diets session. Thankfully they were being held at different times so I was able to attend both. We were also encouraged to “vote with out feet” if a session wasn’t for us and go to another discussion or grab another cuppa and have a chat with someone. Tea and coffee was on offer all day. I’d love to know just how many cups of tea/coffee we all got through over the 2 days.
And so the itinerary was set, by us.
I went off the the Sports and Exercise session which was chaired by a rather nervous Paul but he did a great job. It was a very popular subject. Allun went to the Mental Health session whilst I was at this one. Whilst listening to the conversations it became apparent that exercise was definitely made easier if you used and insulin pump and being able to set temporary basal rates (TBR’s) and even suspend insulin supply if necessary, I’m on multiple daily injections (MDI). It was there that I found out that Ellie’s mum, Mary, was a fitness instructor and helped T1’s start exercising. I knew I needed to talk to her. A conversation did start over the table but we were having trouble to hear each other amongst the other little chats going on, so we arranged to catch up later, we did and connected via social media so we could chat at a more convenient time. I was a little excited now that I was going to be able to start some sort of exercise in the near future, only a little bit lets not go crazy!! 😀
We had a game of BGBingo and a cuppa. Some chooses a random number, we get out our glucose meters, check our blood and write the number with our name on a sticky note, then stuck it on the door. If you weren’t in range you put your note on “the naughty step”. Don’t worry it’s done very tongue in cheek and there were a lot of people on the naughty step, so no one was alone. At the end of the conference two people we going to win an Abbott Freestyle Libre, 1 who was the closest to the chosen random number and someone off the naughty step, so it’s not all bad. At the end of the GBDoc tweet chat every Wednesday evening there’s always a round of BGBingo. Last Wednesday (2nd March) I actually won for the first time ever and was only 0.3 off the chosen number, I was a little chuffed. 😀
I then went off to the Food/Diets session hosted by Paul, and Allun went to a CGM and Pump (Tech) session hosted by Tim, more tech sessions kept being added in as they were so popular. The main topic of conversation at this session was the low carb high fat diet (LCHF), some people needing to bolus for protein and how much (percentage), some others not needing to bolus for it and lots more information. One girl shared that she (I do follow her on Twitter but I can’t remember her name atm) needed the complete opposite – high carb low fat. It just goes to show just how different we as diabetics/people with diabetes are. There don’t seem to be many hard and fast rules when it comes to diabetes. I’ve often said if there was a rule book for diabetes, diabetes wouldn’t have read it! Again a lot of the conversations covered how people did things using their pumps for certain meals, combo bolus, multi-wave bolus, square bolus, extended bolus (I think all those names are correct, I’m sure someone can correct me if I’ve got them wrong or missed some out). All of these things can’t be done with MDI. Since using the Libre I have recently started splitting my basal doses to try and emulate this but not always with much success, it’s a new learning curve for me. During this session I was chatting to the woman (Karen) next to me, realised she was on Twitter and decided to look her up only to discover I was already following her!
Then there was lunch. Lunch was a buffet, it all looked and tasted fantastic. Lovely filled wraps, sandwiches and bagels, quiches, onion bhajis, spring rolls to name a few, cheese cake, and a big platter of fruit, yumm!! I must admit though my first thought was “where’s the salad?”, then “what are those who eat low carb going to eat?” I obviously wasn’t the only one.
You could tell the ones with function pancreas’ in the room, they were the ones with a mountain on their plates. Ahem, Allun!! 😀
Time for the final session of the day. Allun went to the tech “hacking” session. Paul and Adrian had arranged for Adrian to hold a Freestyle Libre session as well during this time. Kirstie (not on Twitter) went along with Adrian to answer any questions people had. It’s always better to get first hand information from the people who use a medical device as they are living it day to day, unlike a sales rep. I decided to join in this session and also share some of my experiences with this.
Once all the sessions were over we got back together and had a summing up time. After which some people made their way home, some back to hotels to get ready for the evening and some people stayed and chatted. We went for a quick freshen up and a change of clothes for the evening.
We hadn’t been there long when Lavina arrived, we met for the first time last year at the first PWD conference. Hugs and hello’s were said. We stood chatting in a group when a young woman came up to me and said “Hi, Nic how are you?” I don’t know what my face was like because it was swiftly followed by “I’m Jo… @Yoga_pumper!” The penny dropped and there were hugs all around again. It’s so great to put a real life person to a picture and Twitter handle.
A 3 course meal had been previously booked for approximately 60 of us.
For once at a meal table the type 0’s (non-diabetic) were the odd ones out. Usually at a meal table I am the only one sat there carb counting/estimating, checking my blood sugars, and injecting insulin before I can start my meal. It was great to see everyone else getting their blood glucose machines out and taking insulin etc. At our table there was Abby & James, Phil, Paul, Steve & Suzie, Lavina and Jo. We had a great meal whilst chatting. After stuffing our faces several people arranged to meet in Nottingham for a few drinks.
We eventually met in the Canal House, just a 10 minute straightforward walk from where we were staying. I thought it was fab that there was a real canal with boats in it. We had to go over a little bridge to reach the bar. There was rock music playing, I knew that this was the kind of place our 20 year old would have loved so I took a little video and sent it to her, yep she loved it.
People slowly arrived and we all sat about chatting. I think I spent the majority of the night chatting to Phillipa about insulin pumps. At midnight Allun suggested we leave. Where did the time go?
As I arrived two familiar Twitter faces were already there, Nick and Kevin, so I introduced myself. Day 2 started of pretty much the same as day 1, we wrote our names on stickers, had cuppa’s and chats then sat down to decide the agenda for the day.
Today we had a group photo (this was originally going to happen on day 1 but as we were all so busy it got forgotten about). It was worked out that between us we had 1000+ years of diabetes experience. Going from 50+ years down to 5 years or less each. I was in the 10+ years group. Actually I’ve had diabetes for 13 years today (8th March).
Onto the sessions. This time I wanted to know about transitioning from MDI to pump, how to go about it, what to expect when asking for a pump. Again tech was an extremely popular subject, this and MDI to pump were put together during the first session.
Mark (I believe) had been using an insulin pump for only 9 months so he kicked off the session and explained his experience of starting a pump. A young lad in the group said that he was starting on a pump in the next week so had a few questions to ask too. Lots of people were able to share their experiences of using various different pumps. Some that are used in conjunction with continuous glucose monitors (CGM). Every person who was already using a pump sang its praises and said they would never want to go back to MDI. Advice was given to make sure others insured their pumps and it was noted to check out travel insurance and household insurance to make sure it was covered. Some companies would send replacements for free but not all. How long they were guaranteed for was also talked about and was different depending up the medical company. Hints and tips were given for travelling (x-ray machines and body scanners etc, hand luggage etc), using in hot/cold weather. The discussion then moved onto CGM in the cloud, X-Drip and Nightscout. Kevin, reluctantly at first, gave information on his experience of using this. It was extremely fascinating listening to him explain all this even though I don’t use a system that can show my blood glucose on a watch. There’s some very clever people out there in the diabetes community. Open loop (suggests corrections etc for you) and closed loop (does the corrections for you) was also discussed and people’s preference if they were to use either. All very interesting stuff to learn about.
Just before the start of the next session I heard another “Hello, Nichola!” I turned around to another unfamiliar face and was immediately informed “I’m Fluffy Monkey“. Ahhh!!!! Hello’s continued. Again, it’s always great to put a real life face to a picture. I’ve just realised though Fluffy, I didn’t ask you what your real name was, DM me :D.
The next session I attended was about diabetes and hormones. I was expecting it to be mainly women but a few brave men joined the group. The age range of people varied as always during the sessions. Hormones effect your blood sugar levels when growing up (male and female), as a woman of child bearing age and the more “mature” woman (The Big M). To be honest I’m not sure if hormones are an issue to males at any other time other than when growing up, no one said. Sarah kicked off the discussion and I think everyone had something to say about how hormones effect their blood glucose levels and even mental health. It causes numbers to go sky high and stay that way for a time or to run low so people were fighting off hypos for days at a time for “no apparent reason”. I think it was very cathartic for us all to know that not only were we going through day to day life with diabetes but with the same problems that come with life and diabetes too.
Whilst having a cuppa @lizabetic came over and introduced herself (another person on Twitter that I follow that I didn’t recognise). We chatted about the first session, MDI to pump, she had realised that we were facing the same difficulties about wanting to use an insulin pump but not having got anywhere. A lot of our reasons were very similar. I’m so glad that I put that subject forward as there seems to be quite a few people who also wanted to know the same.
Lunch! This time I think the message about low carb had been received. Lunch included salads, cold meats, chicken satay, chunks of salmon, grated cheese, egg etc, cheese cake (lush) and another big platter of fruit. My plate came back a bit fuller this time. 😀
After lunch, I chose to go to the complications chat. Several complications were mentioned, diabetic retinopathy seemed to be top of the agenda. A lady (I don’t know her name sorry. *I do now! 😀 Beccy) explained about the laser surgery etc that she was currently going through along with other personal information about her life with diabetes. Shaun, who had joined us the previous evening also, also explained about his experiences. A lot of questions were asked about other complications including heart disease and dupuytren’s contracture, which I had never heard of before. Towards the end of the session Paul came over and after a short while asked how many people, in the group, had had a problem with a frozen shoulder at some point. The answer was a lot! It seems that people with diabetes tend to be susceptible to a frozen shoulder.
Whilst having a cuppa, during some point in the day, I went and sat and had a chat with Jules at the table that had been set aside especially for the “queen” of the day.
I can’t believe how quickly the day went, before we knew the day was nearly over and it was time for the summing up of the day. Allun and I went and found our seat. I thought it was a good time for a selfie and Phillipa thought it was a perfect time to photobomb us. 😀
After a fabulous weekend it was time to travel back home. We had had great weekend away, it’s not very often we go very far without the children, thank God for grandparents. Both of us had taken in a lot of information over the weekend and talked about it most of the way home. From what Allun has told me its also a good weekend for the partners of those with diabetes. He had also learned a lot about life with diabetes, the tech out there to help live with it and many other things. Thank you GBDoc and Team Blood Glucose (TeamBG) for arranging a fabulous weekend.
* Updated 12th March 2016