Diabetes and Mental strength

I was reading a blog entry on TypeOneNation.org by Kady Helme recently, about her trial of the artificial pancreas. I was actually really excited to read it because I had imagined that wearing the artificial pancreas would be like not having type 1 diabetes at all. Especially after listening to Aaron Kowalski, JDRF's Vice President of Treatment Therapies at the Friends For Life UK conference in Windsor.

Anyway, it is a well written piece and not at all what I was expecting. I had a "stop-me-in-my-tracks" moment though as I was reading it, where Kady used a phrase that I feel encapsulates the big struggle we face every day in living with type 1 diabetes. The "struggle" that is sometimes there a lot or sometimes there only a little. She wrote; "It wasn't until I was without the AP system that I understood what a mental burden had been lifted.  It was such a treat to have something monitoring my sugar levels every five minutes and reacting to it. I only really had to focus on T1D at mealtimes."

We have lots of daily tasks that we need to do to live well with diabetes and that's what most people think is the difficult part of living with Type 1. But really, the finger sticks and injections are just small things in the big picture. Its what's going through our minds as we continue on with our day beyond the time it takes to complete those tasks. The "what if's", the toing and froing of the guesswork, the checklist of questions we have to go through before we make a decision on how much insulin to take. Questions like; when did I last take insulin and what did I eat at that time? Have I been active this morning? What am I going to do this afternoon, is it going to be active? When am I having my next meal? Will I have time to eat?

Any treatment for type 1 diabetes that can lift that mental burden even just a little is as good as a cure to me.

Diabetes De-Cluttering

I am a house wife! And as a housewife I, sometimes, while in the middle of doing one task, will immediately decide another task is more important and switch. I don't know how I ended up on my knees, on the floor of my bedroom wardrobe but I did, and that's when I noticed once again my emergency diabetes supply stash. You know the back up meter that never gets used, the needles for Novapens, old meter cases in case some day another meter fits into it or just in case the current meter case gets something gross spilled on it. You get the idea. I even have my old record books and my old Long Term Illness book from before I moved to the states and came back (hint 8 years ago). Those I keep as mementos or for posterity - "Look, what I used to do back then"

Anyway, I performed a de-cluttering of old meter cases and old, out of date meters. Here's what I recycled; The Accu-Chek Compact Plus was a meter I got in 2002! Meters have evolved so much that there is no point letting the ones that I, or anyone else, will ever use, take up space.

This is the nice little pile I have left. (Note, I am not showing the stack of record books on the shelf below.)

However, I have a number of other "piles" of diabetes supplies all around the house that need a bit of de-cluttering.

#walkwithD

My Night-time Basal Rate Tests

Basal insulin refers to our background insulin; the insulin our body needs when we are not eating. People who are on multiple daily injections (MDI) would have their basal insulin in the form of Lantus or Levemir. People on insulin pumps divide their day into sections and would programme their pump to deliver their basal insulin at different rates during the day.

For instance I have divided my day into midnight to 4am, 4am to 7am, 7am to 12pm, and so on. I have programmed my insulin pump to deliver my insulin at different rates for all of those times.

I perform basal rate tests when my blood glucose readings go a bit mental and persist in being mental. My fasting blood glucose have been acting up for a couple of weeks now and I decided that it was time I figured out why.

So, I tested at 10pm, before going to bed, which is normal for me. My result was 6.7mmol, great! So, I'm all set.  I set my alarm for midnight for my next test and fell asleep pretty quickly. The tests followed every 2 hours and results were 5.8, 5,4, 6.3 and 6.1. WHAT!!! I couldn't have wished for better readings.

Initially, I thought to myself that I had just put myself through an interrupted nights sleep for no reason. But the results are telling me that my nights are not the problem and that I need to look at my basal rates for during the day. The thought of doing this is more stressful because it involves skipping a meal and during the day I take care of my children. I'm nervous about both of those things.

However, Joe Solowiejczyk suggested that my husband could help out a little with the driving and the children so that I didn't panic too much about it. I think I'm mostly worried about driving under 5mmols. Then, in the last month my husband has been travelling on a weekly basis.

So, it looks like I'm just going to have to "man-up" and practice lots of deep breathing.

More information on Basal Rate Testing can be found here; http://www.diabetesselfmanagement.com/articles/insulin/getting_down_to_basals/all/

Am I hiding my diabetes?

I've been a person with type 1 diabetes for over 21 years. And some days it seems that I don't have any interest other than diabetes. I read ALL the blogs and participate in a number of Facebook groups, I subscribe to Diabetes Daily, A Sweet Life, Insulin Nation, and many, many more. I volunteer with my local Diabetes Ireland group and organise my support group.

But, recently, I feel like I'm hiding my diabetes!?!

While my daughter attends her piano lessons, I wait outside the class with my son. I chat to another Mum whose children go to my children's school. During my daughter's lesson my insulin pump vibrates to remind me that it's two hours since my lunchtime insulin bolus and it's time to check my blood glucose again.

I turn it off rather than test in front of this mum. It's not because of the mum; she's really nice and I admire her a lot (raising 5 children and completing her HDip!!), it's because as soon as I take out that glucose meter I know what we are going to talk about. And I'm tired, and I have had my afternoon caffeine.

I'm surprised that I do this, I didn't plan it. Then, I thought about my Friday morning coffee meet-up and I've chosen not to do blood sugar tests in front of them either for the same reason. I had decided that I didn't want to be that person, you know, the diabetic. But also I think I need to have diabetes-free time.

I know it will come out eventually but for now I enjoy talking about everything other than diabetes with all of these interesting people. Diabetes is part of me, a significant part but it's not all of me.

Diabetes Little White Lies

I am guilty of using my diabetes to get myself out of stuff. And don't even try to tell me that you haven't too. I've talked to people and I know I'm not alone.

Only as a last resort though. I don't know how many boring Rich Tea biscuits I was offered before I decided to say No thanks", and when Fr. Ted's Mrs Doyle appeared I used the diabetes.

But I think I've taken it to a new level now that I'm a mother.

I've used the "my blood sugar is low" excuse for having an afternoon treat, when my children have asked why I'm having sweets in the middle of the afternoon. The rule in our house is that you can't have sweets or desserts if you haven't done a good job on your dinner. It applies to everybody! But sometimes I just need a little piece of chocolate.

The truth of this particular situation is that its the afternoon slump and I'm having tea or coffee and just want a little something to give me a boost. Or I'm too tired to resist temptation or an honest reply.

Does this make me a bad person? I think not, it makes me a Mother who survives;-)

FFL/Children w/Diabetes, UK 2014 Diabetes Burnout

Avoiding and Overcoming Diabetes Burnout

Presented by Jill Weissberg-Benchell who is a licensed clinical psychologist and a certified diabetes educator for 20 years. She also co-wrote Teens with Diabetes: A Clinician's Guide which is available on Amazon. She currently works in Chicago, Illinois.

Do you know what Diabetes Burnout is? If you don't, you are so lucky! But I'm thinking that a lot of you know EXACTLY what it is. Or maybe you're not lucky, that you have experienced it but didn't know what it was called.

For me, diabetes burnout is the feeling of being done with diabetes, I feel so tired of having diabetes, tired of having to do all the things that I do to keep well. I still end up doing all of the tasks of type 1 diabetes but I don't have any energy left to process the information to make the changes that would make life better, easier.

So, I was especially interested in this session because I've been finding it more and more difficult to fight burnout and wanted more knowledge and power over it.

Firstly, let me tell you about how Jill Weissberg-Benchell should be worshipped. She does not have type 1 diabetes but she understands type 1 diabetes like she has it! People like Jill are few, very few. She could describe scenes from our lives as if she had been to all of our homes and witnessed it herself. She really got everyone in the room talking. 

However, I was a bit disappointed in the session because even though we laughed, cried, shared and patted each other on the backs; it was dominated by parents of children with type 1 diabetes. Usually, this isn't relevant but when the parents were sharing how they avoid burnout with weekends away from their children I was a "smidge" jealous. 

But my envy was short lived. Parents really do have a tough time and while I can't get away from my diabetes, I only have to take care of myself; I know exactly how I'm feeling at all times. I don't have to guess like a parent has to with a child.

That aside; Jill was a mine of information. She reassured us that today there is only a 3% risk that people with Type 1 will develop complications. I had suspected that this was true because of the better management tools and treatments available today. Its nice to have someone say it.

Also, when someone in the room voiced everyone's biggest fear; "dead in bed" syndrome, she said that in most cases (not all but in most) dead in bed is caused by alcohol or drugs. And I believe her because she is a medical professional, has access to the data, and because I need to believe her. 

I did get something out of this session that I hadn't expected. I realised that one of the ways I tackle burnout is through my diabetes support group. I always feel uplifted when I meet my other D-people. I do the opposite of what parents of children with diabetes do; I immerse myself in all things diabetes to try and avoid burnout.

Attending the Friends for Life UK conference in London was definitely exceeded all of my expectations and I met some fantastic people from the world of diabetes. People like Melissa & Lesley from InPuT Diabetes, Angela from Scotland, Joe Soloweijczyk from A Mile in My Shoes, to mention but a few. 

Friends for Life UK 2015 has been scheduled for October 30th to November 1st. More details will be announced on www.childrenwithdiabetes.com website.