Dear Blog, I missed you

Writing blogs posts is so therapeutic for me and my life with type 1 diabetes.  And in the last couple of months, I've had so much I wanted to write about and no time to do it while we were organising Thriveabetes. So now that Thriveabetes is over for another year, I thought that I would end up bored because I have so much free time. Yeah right!!! There is so much going on in the diabetes world right now, so many events I want to attend and I'm still struggling to keep up. This week the count is five diabetes related events for me in the next seven days. All of which I'm excited about because only two of them I'm organising, the rest I get to sit back and hang out with my diabetes tribe. I really, really enjoyed meeting old friends, Kieran, Ger, Michael, Carmel, Cyril, Pauline & one of the other Grainne's, and new friends; Cliona (sorry I didn't get back to chat to you proper:-(, Deborah, Linda and Barbara at the Type 1 Diabetes event in Galway the night before last. And lots of thoughts in my head to post about later!!!!

Thankfully though, none of this madness has an, umm, unexpected, effect on my diabetes. Sure,  there have been a couple of bumps, but nothing has hit me from out of the blue. And this year with Thriveabetes, my stress levels were much more manageable . Instead of a month long period of elevated blood glucose levels it was condensed down to 48 hours:-) My bloods sugars only went completely nuts on the trampoline once I arrived at the Killashee hotel on Friday evening. As for the Saturday morning of the event, I think everyone I bumped into as I was running back and forth that long corridor from room to room can bear witness to my stress levels. Thank goodness for that running back and forth though. It kept my blood glucose levels from rising above the mid teens. The experience of organising last year's Thriveabetes made me more confident in adjusting my insulin to compensate for stress and I was fairly confident that I would have dozens of hypos.

So, in the coming weeks I will be back to my weekly blog posts and sharing lots of information from the diabetes media that I find valuable on my facebook and twitter pages. And it feels so good to be back.

I'm Missing in Action...again

Many of you will know already that I'm up to my armpits involved with a type 1 diabetes conference called Thriveabetes and so for the next couple of weeks that's where you can find me. But for the benefit of my new readers and followers - let me catch you up:-) Thriveabetes came about because myself and a few others recognised a need for more that just a diabetes conference. We wanted a space where we could learn something new but also to spend a day with others just like us. We place extremely high value on learning from our diabetes peers and their support.

Our mission is to entice knowledgeable speakers who really know how to connect with their audience and who get it! A lot of our speakers live the life of a person with diabetes too. And to allow for people to hang out and form friendships as much as possible.

Thriveabetes will take place on Saturday, October 1st 2016 in The Killashee House Hotel, Naas, Co. Kildare. The event has sold out but we do have a waitlist up and running through Eventbrite for any cancellations that may arise.

Click HERE if you would like to know more about Thriveabetes.

Diabetes Discrimination in the Workplace

This is part 2 of my Diabetes Discrimination post. The first part focused on Diabetes Discrimination in your career choices. This piece was prompted by a presentation on “Diabetes Discrimination in the Workplace” at the Diabetes Hands Foundation MasterLab 2016 conference. Unfortunately the recording is no longer available.

I’ve never had a problem in any job that I’ve had but I also did not talk openly about my diabetes. I should probably add that I haven’t worked outside of the house in over 10 years (YIKES!!!) I felt that it was too difficult to communicate to people about an illness that I knew very little about and I got tired very quickly of the only response being “How awful, you can’t eat any sweets”. This was pre type 2 diabetes stigma. But I’ve also always had desk jobs where I could store my handbag and meter in my desk.

I do remember the one time that I disclosed my diabetes in a job interview and got the job. Soon after I started, my boss asked what should they do if I collapsed on the floor. This was in the days where I downplayed my diabetes becauses I didn’t want it to make me different. So I said, “Nobody panic! Call an ambulance, I wouldn’t be going anywhere”.

Other occasions, I didn’t disclose my diabetes until after I had received a job offer or started in my job. It still didn’t affect they way I was treated in the workplace. But I know that my experience isn’t everyone's.

I do find that these days, working/volunteering from home, that I tend to ignore things like pumps alarm reminders to check blood glucose levels because I just want to “finish this one thing”. I have to force myself to stop what I’m doing to do a check.

It’s up to you when to tell your employer that you have diabetes, or if you tell them at all. Unless you are asked (see below). But it is a good idea to tell them or your co-workers at some point, if only to know that someone has your back should the unlikely happen.

This information comes from Diabetes Ireland and I recommend that you keep a copy of it at your place of work to remind yourself that you do have rights.

Entitlements around Employment/ Education.

“You are legally required, if asked, to inform any potential employer of any long term condition during the recruitment process. Under the Employment Equality Act, the company cannot use your medical condition to discriminate against you in terms of successfully getting the job. Diabetes Ireland does not consider diabetes a disability nor do we consider it to have a substantial effect on any person’s ability to carry out normal day to day activities.

As a person with diabetes, you have certain rights. They are;

• - The right to eat food (either on the job, or to have a reasonable number of breaks to do so) is crucial for people with diabetes.

• - People with diabetes also have the right to monitor their blood glucose, and administer insulin or medication accordingly. If you work in a public environment, you might ask to have a relatively private space in which to give yourself injections.

• - People with diabetes also need freely available bathroom breaks.

• - As a person with diabetes, you might also request to work regular hours, rather than shift work, if your doctor feels that your glucose control will be made more difficult with changing patterns. However, this is at the discretion of the employer.

• - A person with diabetes is entitled to time off to attend hospital appointments. However, payment for this time is at the discretion of the employer. Medical information is confidential, and so you do not need to share your medical past with your employer. You can share what you want, but you should also share what will be needed.

The first step is to educate your employer. Explain what the effects of diabetes are and how diabetes can be managed. A person who manages their diabetes will not hold back any team. If anything, we suggest that a person with well-managed diabetes will be a benefit to their workplace, because they have learned organizational skills, self-discipline, and they lead a generally healthier lifestyle which results in fewer sick days.”

There is also more information on Diabetes UK’s website, as well as an Advocacy Pack on what you can do if you feel you are being discriminated at work because of your diabetes.

Diabetes Discrimination in Career Choices

Lucky for me, or maybe for the world :-O, I never aspired to be an astronaut or an airline pilot for my career. But I have met just a few people with diabetes who did. In particular, a couple who all they wanted in life was to fly airplanes. But when they were diagnosed with type 1 diabetes they ruled it out. At the Diabetes Hands Foundation MasterLab 2016 conference there was a fantastic presentation on “Diabetes Discrimination in the Workplace”  that prompted me to feature this issue. I’ve divided it into two posts though as it was getting a bit long.

The first of which is how diabetes may affect your career choice. The second post will feature discrimination in your workplace and what your rights are.

Did you know that it’s only since 2015 that a person with type 1 diabetes can apply for An Garda Siochana in Ireland? But there are still difficulties for people with type 1 diabetes who want to join the defense forces, emergency services, railway workers and some careers at sea? What this probably means is that no one with type 1 diabetes has succeeded in passing the fitness tests to qualify for any of these careers. (source; Diabetes Ireland). But other countries don't have these restrictions. Why can a person with diabetes be a member of the police force in the US and not be in Ireland? Well, it's because these rules are being challenged in those countries and winning!

In the UK, some NHS Ambulance Trusts, still have restrictions in place on people with diabetes who wish to be ambulance crew. But these restrictions are being challenged.

In the US a person with diabetes CAN be a firefighter or a police officer! You CAN be a commercial pilot in the UK and Canada but not in the US. This is being challenged also.

My point is if you have a dream, if you know what you want to do with your life, don’t let people put you off. If you feel that you are right for any of those careers, then go for it! Where there is a will there is a way!

Here's the video from MasterLab 2016 - well worth a watch!!

https://youtu.be/Cmw31JpoZbE

I had hoped to publish part 2 of Diabetes Discrimination along with this post but Ha! Intentions were good but time did not cooperate. Part 2 next week!

Blood Glucose Diary Faker

Renza from Diabetogenic wrote this piece on "fudging" our bg numbers in our blood glucose diaries and it fuelled my fire. It’s such a coincidence that we both attended conferences where the “Fake” blood glucose diary of a person with diabetes was held as an example of a “bad” patient! Renza’s piece is well worth a read on how she handled the situation and spoke up for all of us. She rocks!! My experience was more of the sitting quietly at the back in disbelief that this was how this conference was beginning. The conference I attended focused on changing the way care is delivered to young adults with diabetes.

I was diagnosed as a young adult - age 20. The instant I saw that photo and heard those words I had vivid flashbacks. I remember doing that! I even remember why! I remember that every out of range blood glucose number in my diary was questioned, I felt interrogated and I never knew the answer. Back then, there was no carb counting and no one told me that if I ate more food but still took the same amount of insulin that my blood glucose levels would be higher. It wasn’t bad behaviour or poor choices - it was ignorance. I remembered being lost, feeling so isolated and not knowing anything about diabetes, let alone how to manage it. I remember that I never felt I could ask for help with my diabetes from my health care team.

I did it because I didn’t want to be judged or reprimanded for something I thought had no control over. I was letting my diabetes team down.

This conference, supposedly, about health care professionals finding a better way to deliver care but this made me feel like the reason young people with diabetes were not doing well was their own fault.

What should have been said, and said clearly, was that if a person with diabetes feels they have to hide their blood glucose numbers from their diabetes team the patient is the one being failed. That the diabetes team are to ones letting the patient down. That your reaction to people’s blood glucose diarys need some work. That the fact that a patient has actually written down their blood glucose numbers at all is an achievement to be celebrated. That you, despite your best intentions, are being judgemental.

Thankfully, these days, I am much older and wiser and more assertive these days. And of course, there's the fact that I don't care very much what other people think of me. I do ask for help - it's not always available but I keep asking. I also have a team that seem to be a bit more open to conversation about what I need. But I am a little perturbed that 20+ years later, young people with diabetes STILL feel that they have to cheat to pass their diabetes test?

Oh and BTW, I ALWAYS use the same pen to write down my BG numbers cos I keep the same pen in the case with my bg meter!! So this is not an effective way to flush out or prove a diary is being faked.

How many people actually use a written diary these days not anyway? Aren’t we all uploading to software programmes or using Apps?

Valuable Lesson in Advocacy

I really don’t know why I have to learn this lesson over and over. I think maybe it’s because I’m so focused on one key message when I am advocating for diabetes that I forget I need to explain the very basics of diabetes before I launch into that message. The Diabetes Hands Foundation’s MasterLab Advocacy conference in 2015 was where I heard this lesson for the first time; never assume that people know what living with type 1 diabetes is like. Really like! OR know much about it at all. (Thank you, Stacey Simms (http://staceysimms.com/ from Diabetes Connections Podcasts for that message). It can be a huge oversight because if people don’t know those basics then everything else I say may have less impact.

It’s such a simple thing. Every conversation HAS to start with what diabetes is and what I have to do every day to manage it.

This lesson was reinforced when we went to Leinster House to brief our TD’s and Senators about why people with diabetes needed a better health service. Our two patient representatives, Davina & Rebecca, explained all the blood glucose checks they do, the measuring and calculating carbohydrates and the calculating how much insulin to dose every time in both of their speeches. Among the comments they received afterwards were “I had no idea that you had to think about ALL of those things”, and “there is so much to think about in diabetes”.

Rebecca explained that something as simple as going out for an ice cream, which is a normal thing to do for a teenager, but for a teenager with type 1 diabetes it has to be planned and accounted for with insulin.

These speeches were real eye openers for our audience. And they listened! So the lesson in advocacy that I have to drill into my head is to first explain my diabetes before I delve into what the issue of the day is.