Type 1 Diabetes isn't Easy

This weeks post is from Kieran Flanagan who I met at Thriveabetes 2015, I didn't know him then, when he leaned over and jokingly told me not to get a swelled head. :-O It was only in the weeks after when he contacted me about how to set up a type 1 diabetes support group in Galway for adults, that I came to know him a little. Kieran's guest post is about not ignoring when type 1 diabetes becomes more of a struggle, that it's ok to not feel ok but that feeling not ok should only be temporary.

Kieran has lived with type 1 diabetes for 21 years, he's just two years younger that me - diabetes years that is. Today though, Kieran is a member of our diabetes online community who needs it more than ever to keep him on his journey with diabetes. And we know that he is not alone. Out of the blue Kieran emailed these words to me and I felt they needed to be shared. We tend to over accentuate the fact that diabetes doesn't stop us from doing anything but the truth is, sometimes it does put a spanner in the works and talking about it is always good.

So in Kieran's words, here is his story;

OK here goes nothing.

I took part in a small group discussion at Thriveabetes 2016 about living with diabetes complications and I’ve decided to write about what I’ve been going through these last few years in my life with type 1 diabetes.

I’m not going to start from the beginning as I’m sure being diagnosed was troublesome for us all. My real trouble started after my twins were born three years ago. Everything just got too much for me; trying to balance work, sleep, diabetes and doing my bit around the house. I work long hours; 14 hour days but I’m off for 3 days a week, so just managing my diabetes with work was tough alone. But just after the babies came along I hit a wall in my life and I didn’t think I was any good to anyone. I was deeply depressed.

It took me a long time to understand what was wrong with me and it didn’t make any sense until one visit to the clinic and where my consultant and his words changed a lot of things for me. His words were “How are you feeling and don’t say fine?” That was all it took, I spilled the whole lot out; from feeling crap one day to feeling on top of the world the next. I believe only for my consultant and my family, I wouldn’t be here at all today.

I went to counselling for 18 months and got the help I needed and learned so much about myself and others around me. My counsellor didn't know anything about type 1 diabetes but they didn't need to. Diabetes was just the sideshow of what was really going on but that's what was suffering the most. That was about two years ago. And everything seemed to be back on track. But then, just when all seemed rosy, I was hit again, this time with a diabetes complication. This time I think it’s bigger.

My kidneys are failing.

I was told 6 months ago that I’m heading for a transplant in 2 or 3 years but, if I’m honest, I think I’m looking at one a little bit sooner. And my a:c ratio is one point away from putting me one the transplant list. The irony is that my HbA1c has shown a sharp drop in last 6 months. After I changed my lifestyle completely to try lengthen the time to a transplant. But it seems my a:c is doing the opposite.

I will never know if those couple of years where I was struggling to manage my diabetes are the cause of my kidney failure but my gut tells me that that period wasn't long enough to do all the damage it has done. It doesn't make sense how I got here so fast.

I know I’ve a huge battle on my hands in the coming years. . I don’t know if this will make sense to any of you but if I can help one person out who is like me, who feels like they are the only one living with diabetes complications feel less alone then I will tell all. I hope I can. I have two messages for everyone living with diabetes. If diabetes gets you down, and it probably will at some point, Please talk to someone! Or if you’re pissed off with it, just don’t ignore it!. It doesn’t go away. And talking about it can only help. If that has to be a counsellor then remember that they are people just like us, except they don't judge and they are better equipped to say the right thing.

Thank you Kieran for your courage. And remember if you are struggling with your diabetes or anything - find someone to talk to.

Thanks from Insulin for Life

Thriveabetes 2016 facilitated a collection of unneeded, unused diabetes supplies and insulin to send to Insulin for Life/InDependent Diabetes Trust. This was all organised by a member of the Diabetes Community and mother of a child with type 1 diabetes, Sarah MacCann from Dublin. There was an amazing response! I'll let Sarah tell you all about it.

Thank You from Insulin for Life and Sarah MacCann.

It's taken a little while but I've finally sorted through and sent off all the spare insulin and diabetes supplies so generously donated by delegates at this years’ Thriveabetes conference. And what a result! - 10 vials of insulin, 21 pre-fill cartridges and 31 pre-filled insulin pens - 30+ packets of 10 insulin syringes - 8 full boxes of insulin pen needles - 8 full boxes of lancets - 15+ full boxes/containers of glucose test strips - 12 blood glucose monitors - As well as lancing devices, i-ports, sterile wipes, insulin pens and more.

All new, all unused, all going to save lives and enable people living with diabetes in the developing world to thrive in their own communities.

In all, five boxes were sent off to the InDependent Diabetes Trust, who are Insulin for Life's local partner in the UK. We don't yet have a local partner here in Ireland, but we are working on it. IDDT will send all the donated supplies to local projects in the developing world. Last year alone, they sent 110 parcels of donated supplies including £32,000 worth of in-date insulin to diabetes clinics in Africa. You can read more about it here.

So I just wanted to say thank you so much for bringing along all your unwanted supplies for such a great cause. And thanks for coming to talk to us at our little stand in the exhibitor’s area. It's great to get a chance to spread the word that we can do something really positive with our unwanted diabetes supplies.

You can send your unwanted supplies directly to the IDDT all year round, at: Insulin for Life InDependent Diabetes Trust PO Box 294 Northampton NN1 4XS U.K.

They accept: - Unopened, in-date insulin with at least 3 months until expiry date - Unused insulin pens - Unopened packs of syringes & pen needles - Unused lancets and unopened lancing devices - Unopened glucose test strips - Unused blood glucose monitors

Make sure everything you send is unused and in-date, ideally in its original packaging. And don't forget to say that you heard about them at Thriveabetes!

Thanks again for all your support again and looking forward to meeting you again next year.

Sarah email: i4eireland@gmail.com

Thriveabetes 2016 Summary

Well another Thriveabetes is done and dusted ☹️ And while our attendees are filling out our survey forms giving us priceless feedback, I thought a little summary was in order from my perspective. By the way the survey forms were emailed to attendees through Eventbrite, check your inboxes, and maybe even your junk folder, this feedback is really important to us as it helps us focus on providing what you feel is most important. Firstly, I would like to thank ALL of the organising team - and despite what they tell you, it is a team effort. And secondly, I would like to thank the Diabetes online Community for their neverending support and encouragement.

Thriveabetes 2016 was 50% larger than 2015, with 248 individuals attending;

- 62 children aged 5 to 16 years

- Approximately 70 adults living with type 1 diabetes and

- Approximately 90 parents of children with type 1 diabetes.

We had 45 people on a waiting list and it never seemed to get shorter! Most of whom were looking for more than one ticket to Thriveabetes. This demonstrates a clear demand for this type of event which ensures it's future for at least another year.

From my perspective, I feel like it achieved what we set out to achieve; to provide information, motivation and inspiration to all living with type 1 diabetes. There were a couple of things we tried as experiments, which mostly worked but it did provide us with information on how to make it better.

But also in our primary objective to provide emotional and mental support to all the adults (both parents of children with type 1 diabetes and to adults with type 1). Why? Well, because most of the medical information on living with type 1 diabetes is available from your diabetes clinic, from attending diabetes information conferences and from the internet. But diabetes doesn't read textbooks (thanks Liz Warren on Twitter for that quote -it's priceless) and everyone's diabetes is particular to them, this is what makes Thriveabetes different from other diabetes conferences.

And because, Parents of children with type 1 diabetes, how often does anyone ask YOU how you are doing? I bet people ask about your child plenty, even about their diabetes! But not about how you are doing!

Adults with type 1 diabetes, are you ever asked how you're coping with this life long chronic illness? I bet not often. But I'm sure people ask how your diabetes is doing.

Thriveabetes is first and foremost a support event for adults. Everything else, such as the children's programmes to allow more parents attend, is a bonus. We do have plans to repeat Thriveabetes, we are just not sure if we can pull it off in 12 months or 18. But our blog is here to stay. And if you would like to share stories with us on the blog we'd love to hear from you. Because you ALL have stories to tell.

Looking to the Future of Thriveabetes.

In the coming weeks we will upload all the photos taken at Thriveabetes and our conference booklet. The Thriveabetes organisation team will have a debriefing session on how we move to plan the next Thriveabetes and how to overcome the financial challenges we faced this year. As always you can keep up to date with our planning progress through subscribing to our email newsletter or through our Facebook and Twitter pages.