‘They say that diabetes is an invisible disease. But it isn't for the person living with it. Because we can see the bumps and bruises caused my injections and cannulas. We can see the holes and black dots on the tips of our fingers. We can see the way our skin pales when we have a hypo, and the way we look when we have a hyper. We see the brutal reality if our disease. So diabetes is not invisible. Its incredibly promenade and obvious for the person living with it’.
For those who follow me on Twitter and know me closely in real life you’ll know that I haven't been getting on very well with my diabetes recently. Sometimes living with diabetes can be isolating and sometimes overwhelming. I find when I've got a lot on with University, going to the gym and trying to have a social life the constant toll of my diabetes can just tip me over the edge especially when you try really hard and the results are just unfathomable.
Don't get me wrong I feel like I know everything I can about my Type 1, I'm always researching, reading and blogging about my own experiences - so I have lots of knowledge of how to control my diabetes, its just sometimes diabetes can be unexplainable! Its hard to explain to someone who doesn't have a chronic illness, but those who have it will get it. Its just consuming from time to time and you want a break. Whether its testing less frequently, getting frustrated with your blood sugars being too high or low when your constantly trying to keep them in range or just wanting a break. Burnout.
‘I think one of the worst parts of having a chronic illness is how it sometimes just breaks you. You can have several bad days in a row and handle it; then one day you lose it because you’ve gone so long taking it that you eventually get to a point where you just cant do it anymore. After a period of inconsolable grief, you pick yourself up and begin the cycle anew.’
Im a social media addict and like to voice my opinion and feelings online. A couple of years ago I found a community that welcomed me with open arms the #GBDOC. The ‘Great British Diabetic Online Community’ for those who don't already know, but I have a question for you - how do you not know?!
Over the past two years i’ve been on Twitter every Wednesday night at 9pm to talk about different topics to do with diabetes. Over this time I’ve become friends with diabetics (not politically correct!) from all over the country who have profile pictures of lego figures, monkeys and (thankfully) some people had pictures of themselves! (This made my life a lot easier at PWDC!)
This year (for the second time) the GBDoc along with Team Blood Glucose held a conference in Nottingham for just people with diabetes (NO HEALTH CARE PROFESSIONALS ALLOWED!) This was my first time attending and I was very excited! I just wanted to meet the community in real life who had helped me so much reminding me that I'm never alone and who are always up for a chat and we share advise no matter what time of the day!
However as the day approached I was very excited and slightly nervous! I was meeting my best friends Alyssa and Grant from a Diabetes Uk Care Event camp we went too and was incredibly excited to see them after 2 years - as well as meeting Ellie after not seeing each other for two years since JDRF Parliament. But what if i didn't recognise people from Twitter? What if they didn't recognise me? Do you do an awkward handshake? Or do you go for a hug? Its a strange concept when you know someone well but you've actually never met.
Walking into the very swish marquee at Colwick Hall I was greeted by Rhodri (who I now know after two years of mystery that Paul and Rhodri are in fact the GBDoc!) and Alex who were both incredibly lovely and instantly the nerves went. Running over to greet Alyssa and Ellie it didn't feel like we’d spend two years apart as we get on so well and within seconds were in full flow of conversation. Turning around to see if I could see any faces I recognised I couldn't help but smile - the weirdest experience ever. Seeing people from twitter who are more than just a face! ahaha!
I met Jules who I was very excited about meeting as she's been my rock in the community this past month with her constant support and promise of a cuppa at the conference.She is one of my biggest inspirations within the community and it was fantastic to finally meet her (even though we didn't get a picture!)
Meeting Adrian -LibreGod ;) was so lovely as he was exactly as I had portrayed him from twitter and it was very strange as it feel like the weekend wasn't the first time we’d met. (Of course we had to mark the occasion with a picture).
P.s We all went for the hug
The day started by figuring out what we wanted to discuss and ‘voting with our feet’ to what we wanted to talk about. The first session I attended was ‘mental health’ which was really interesting and everybody got the chance to speak. The open format was led by Tim and it was interesting to see that everybody had been through the same trials and tribulations with their diabetes. The one confession that makes me laugh and everyone could resonate with was filling in your blood sugar book the night before with different pens and different handwriting to make it look like you'd been filling in your book! (I've never done that;)) For me this session was invaluable. Reminding me that whenever you think you're the only one - you aren’t.
|Talking about the untalkable|
After the first session we had our first game of blood glucose bingo! The aim is to test your blood sugar, a random number is generated, and if your blood glucose is that number you win - if its higher than 8mmol you get placed on the ‘naughty step’ (reminds me of Supernanny!) We play this every Wednesday night at the tweet chat on twitter - most of the time I end up on the naughty step! I braced myself for a seat under the naughty step sign, however in a miraculous twist of fate I made it on the wall of fame side! Wahey! Oh and we didn't have to sit on the chair under the sign either (phew!) It was very strange to see everyone testing (and swiping on their posh libre’s - which we have now established the long standing debate about how to pronounce it. Fyi its pronounced ‘librae’ - Spanish apparently!) I haven't been in a room where everyone has tested their bloods since volunteering at camp in summer! With everyones pumps making noises as lunch was carb counted and it sounding like a rather techno disco, lunch was devoured - a very carb lunch at that - although I'm not complaining! - and we were back to our next set of sessions.
After lunch there was another group of sessions this time including a ‘mank and moan’ for all the partners and people without diabetes. I don't really know what they could have spoken about - we are faultless ;P. In all seriousness though it sounded like a brilliant session for people without diabetes as sometimes we forget that although to directly diabetes can have a major impact on the loved ones around us. (What a bunch of soppy gits!)
At the end of the day we had a round up allowing us to find out what everyone else discussed in their groups which allowed everyone to learn something new, and after a brief photoshoot with our pumps, it was time to say goodbye to Ellie (who hopefully i will see before two years again!) and everyone else who had only come for the day (*cough* Adrian)
|Reunited with my two favourite girls|
We stayed for the meal later that evening and it was lovely to be able to chat about diabetes and meet new people. We were on a table with Paul, Rhodri and many others whilst we discussed some slightly controversial hypo games! To name one (before I get told off for copyright ;) - Hypo on Ice!
Day 2 followed the same format as Day 1. Today we started off with a group picture as some of the GBDoc were nursing a sore head! In the picture we calculated that there is over 1,000 years of experience and there was more people there on the Saturday! How crazy is that! HCP’s have got nothing on us!
|Over 1,000 years experience!|
The first session today that I went to was about technology which was so so interesting! I already know about pumps and have my own pump but it was nice to be able to give a bit of information to people who were hoping to transition. Kev introduced the group to the Nightscout and XDrip which blew me away! Id never heard of this before and its amazing how parents and people with diabetes are figuring ways to improve diabetes technology! It is seriously cool - go have a look if you haven't already heard about it!
Again Bg Bingo - 6.7!
On the Sunday I got the chance to speak to other people who I knew from Twitter - it was lovely to speak to Nichola, Philippa, Kev and Lizabetic! It was lovely to meet Lis and Patrick who have both lived with Type 1 Diabetes for over 50 years! How incredible is that!
|Two years later and we are reunited!|
The final session I went to was about sports and exercise and really made me excited about the Animas Sports Weekend in May! I got to share my experience about Duke Of Edinburgh and found that it wasn't just me who has problems with low blood sugar whilst hiking! I also learnt some valuable tips about spin classes and i cant wait to try them out now!
Overall this weekend has been absolutely fantastic! It has reminded me that I am not the only Type 1 Diabetic, sometimes its normal to feel defeated, and the GBDOC community are amazing (well i already knew that!) We were able to see the real world of diabetes today, not that behind a screen, a virtual world. An invisible disease with a very real community. ‘One of the most beautiful qualities of true friendship is to understand and be understood’ - I don't think I can describe the community in a better way. This weekend has been amazing and i cant wait for PWDC17! Thank you to everyone who made the weekend possible and thank you to the GBDOC because without you - the world of diabetes would be a lonely place.
Lots of Love the Backpacker and the Pod xxx