Wednesday, 26 February 2014

Miss "Manners" forgot her manners

DEAR MISS MANNERS: I am a businessman who frequently flies both domestically and internationally. I also happen to be an insulin-dependent diabetic.
I currently do my glucose testing in my seat. It does involve using a lancet device to get a drop of blood to test, but is fairly unobtrusive. Of course, all lancets, alcohol preps and test strips are stored in my test kit for proper disposal later.
Am I being rude to perform this test next to a stranger? Injections I perform privately in the plane’s lavatory. In the airport, I use the counter by the wash basin, since most water closets have no room for insulin vials and other supplies.
Many people seem to stare and resent the fact of performing such a function in this space. I have also had children ask, “What is that man doing? Isn’t that a bad thing?” (They’re obviously thinking of their drug education classes.) Am I too self-conscious?
GENTLE READER: Absent an emergency, medical applications (like bodily functions and grooming) are properly done out of sight — meaning in private or in a restroom — unless they can be done so surreptitiously as to be unrecognizable as such. Miss Manners does not object to a pill taken at dinner, so long as it is not accompanied by a dissertation on your cholesterol.
The technology associated with diabetes is fast approaching this standard, although Miss Manners draws the line at drawing blood. Restrooms exist to provide a proper location for such necessary activities when away from home, and those who use them have no business monitoring the respectable, if sometimes unaesthetic, activities of others.
You may chose to tell children that it is a medical procedure, or ignore them and let their parents do that. Miss Manners would hope that any parents present would also resolve to teach their children to be more discreet with their curiosity.
Those "medical applications" she speaks of are something that diabetics take a long time to pluck up the courage to actually do in front of other people. I spent a long time feeling conscious about doing my finger pricking and giving insulin in front of others, I always thought people would think I was weird and I hated the fact that it set me aside from other people. Then a couple of years ago, I finally thought "you know what, there is no point in trying to hide this any more" I learnt that my diabetes is nothing to be ashamed of and I realised that I shouldn't care what other people think. 
So to see this absolutely ignorant response from "Miss Manners" it makes my blood boil. How insulting. Who gave her the right to tell this man that he should take care of his diabetes in private or in a restroom; that's incredibly demoralising, the reader has already questioned his self-confidence. Not to mention that telling someone to deal with sterilized needles and testing strips in a bathroom is not the most hygienic of activities either- "restrooms exist to provide a proper location" I beg to differ. Plus sometimes there aren't any private places around, what does "miss manners" suggest a diabetic person does then? Just not test their blood sugar or give insulin in front of the people around them for fear of being judged, then become unwell? 
 "Miss Manners does not object to a pill taken at dinner, so long as it is not accompanied by a "dissertation on your cholesterol" In effect, she has just implied that testing blood sugar or doing an injection is accompanied by a "dissertation" on diabetes. Testing blood sugar takes a few seconds, as does doing an insulin injection- not that this ignorant woman would know that. 
The mannerly response to this reader's letter would go something like telling him that he should not be ashamed of his diabetes and if children do ask him, to just explain to them what he is doing or simply, ignore the attention. Dealing with your diabetes care in public instead of hidden away in a public toilet somewhere does not mean that you are ill-mannered; it means you are courageous enough to show that diabetes is nothing to hide. Embrace who you are, even if part of who you are is a type one diabetic.

UPDATE:

I have just found this article and apparently Miss Manners is actually a D-mum herself as her son has been type 1 for over 20 years. 

http://www.diabetesmine.com/2014/02/a-response-from-miss-manners-and-her-son-with-t1-diabetes.html

I don't want to be rude here, what I'm trying to say is that this response could have been worded so much better and if it didn't imply that a diabetic should be ashamed of their condition and deal with it in private- it wouldn't be so bad. It's nice to see that their intentions weren't to insult anyone. The response was just interpreted in the wrong way. 


Sunday, 16 February 2014

I'm getting there

I used to not let anyone know how type one was making me feel; I felt like I couldn't do it. I found myself asking "Why me?" I'd question why I was given type one because it appeared type one was only given to those who could handle it, I couldn't handle it, I thought. I said to myself that I wasn't cut out for being a diabetic. Then again, who is? Who has it instilled in their brain from birth that pricking your finger and artificially replacing a pancreas for the rest of their lives in natural? Absolutely no one. Nobody. So then I started not to feel so bad about not controlling my blood sugar; I began to acknowledge that what I was experiencing was completely normal and actually has a name "diabetes burnout". 

I'm not sure of the longest amount of time someone has had a "burnout" but I feel like I could be in the running for the longest. I'm going to say roughly two years. Two years I struggled a lot to control type one. Whenever someone asked me about it I would say "I don't know why I don't do what I'm supposed to, if I knew then I would sort it out" That's the thing, I just had no idea. It was clear I wasn't testing or taking insulin like I am supposed to, but the reasons why were a mystery; to me, they did not exist. Not even the motivation to control my blood sugars existed. It's like being stuck in a vortex, spinning round and round...wondering when you will be able to see straight and find solid ground again. 

When I was diagnosed nearly five years ago I took this disease in my stride and I took it like a champ; I don't have memories of feeling down about type one, but I do have a fond memory of a conversation I had with the receptionist at my school when I was half way through Year eight; she said to me "You're taking this really well aren't you?" Yes, yes I was. Maybe it's because I was younger, I hadn't hit my teenage years, I didn't really understand it, I mean, I understood it but not really, not fully. I was yet to experience the emotions my diagnosis would bring, the struggles, the hospital stays...It's safe to say I didn't really expect them, but then again I never expected the positive side either.

But nearly five years later I have experienced them. I have been through them. I now understand it all. I understand more about type one diabetes than I ever thought I would, before I was diagnosed all I knew was that it was something that required insulin injections...and to that extent I believed it would stay. But it didn't, and I am writing this now, with an insulin pump on my hip, a cannula in my stomach and small scabs all over my finger tips from checking my blood sugar, but also memories in my mind of the amazing opportunities that type one diabetes has given me. 

And guess what? I am okay. Type one diabetes hasn't dampened my spirit for more than a few days at a time. I will endure many more years of this disease until there is a cure, it has been a rough journey and it will continue to be. But in between all the rough, I have experienced good. I feel like it has shaped me to be the person that I am today; stronger. I have my own life in my hands every single day and handle it. For a very long time I had no control over type one, but now I feel like I do. 

I have really taken back the reigns and it feels amazing. Having high blood sugar for a long time I forgot how brilliant it feels to see a normal blood sugar smiling back at me, a stark contrast to a high one screaming back. I feel so much more optimistic about my next Hba1c in March and I am proud of myself. I feel proud for overcoming whatever it was that caused my "diabetes burnout". 

I knew I needed to take control, not only for myself but for my parents,  my family, my diabetes team, these being all the people who have never given up on me and been there every single step of the way, especially my parents. I can't stress how crucial it is to have a support system when dealing with type one diabetes; I do not know what I would do with out my parents and family. It makes it so much better to know that there are people around who love you and you love them, and know they want the best for you. It makes me even more determined to have good blood sugars. 

I feel like first I had to acknowledge the deeper message in the fact that this is my life. The deeper message being to never let anything take charge; I let diabetes control me for a long time but it came to a point where I couldn't let it any more, because type one is just a part of my life; not all that I am. 

At clinic the last time my consultant said to me "We'll get there" 

I'm getting there.

-Ellie
[Peace&Insulin] 



Thursday, 6 February 2014

My HbA1c is...

12.5%

Yes it is not a good number, at all. In fact, it is the highest I have ever had.

In December I switched from my insulin pump to multiple daily injections because I was much too reliant on the basal insulin. I was terrible at doing boluses and basically I just wanted to go back to basics. Fast forward a couple of months to now, I have got much better at doing meal time insulin and checking my blood sugar- my consultant looked at my blood sugar meter in clinic today and it is clear that I am doing way more blood tests and doing my meal time insulin quite often, but I keep forgetting to do my basal insulin in the morning and this throws my blood sugars off completely for the rest of the day.

The solution: Try going back to the pump.
I think this is the decision that I am going to take because now that I have got better at doing meal time insulin and checking my blood sugar a lot more, I feel that I will use the pump properly now. Also, as I am struggling with basal right now, I will not have to worry about basal insulin whilst on the insulin pump.

Despite my HbA1c I feel like my appointment actually went quite well- my consultant is happy that I've improved in giving insulin at meal times and testing my blood sugar so that's a really good upside. I'm trying to find the positives, I really feel as though I can do this now. It's almost as if I had to go back to basics to try and find my feet again, I stripped my diabetes management right back to simple injections and now I have managed to get a hold of the testing and meal time insulin, but not doing my levemir throws it all off.

I feel like I was focusing so much on getting everything else right, that my background insulin was not really at the forefront of my mind. My next appointment is in March and I feel like I can really do this now. As you can tell, I have never ever given up on trying to get my HbA1c down, a high reading just makes me even more determined to do better.

-Ellie
[Peace&Insulin]