9.7%

I had my hospital appointment yesterday.
Just 6 weeks after my last appointment, in which my Hba1c was 12.5%, my Hba1c was tested again yesterday and it is now 9.7%!

 I can't even explain how great I felt when my consultant pointed to the little number on the sheet...I guess you know you've done great when you get a high five from your consultant. He was probably more eager to find out than me! This is the lowest my Hba1c has been in well over two years; I can't remember the last time I saw a Hba1c under 11% let alone under 10%. I am feeling extremely proud of myself. It's been a long time coming, but we all knew I'd get there soon enough.

"You've found your mojo again!"
-"What's a mojo?"
"You know! Your mojo" *does a little dance*
-"Oh! Like, motivation?!"
"Yeah. But you were always motivated weren't you? You just had to get past that mental block"

I am so grateful that I have the support system that I do. My parents are amazing, my family and friends are great and so is my consultant. He didn't give up on me, I didn't give up on type one and he never gave up trying to help me. Everyone believed in me this whole time and I suppose that's what makes it better. This massive drop in my Hba1c just proves to me even more that I can do this. For a long time I struggled to keep in control of my blood sugars; there was a time where I just felt so helpless with myself that I wanted to give up, I had no interest in dealing with my diabetes. I didn't want to. I didn't want to face the high blood sugars that I knew I would be greeted with every time I did a blood test, I didn't want to count the carbohydrate in my food...I just had no motivation; for reasons I am unsure of. I always said that if I knew the reason as to why I found myself in a 'diabetes burnout' for the last two years then I would have done something more about it, but I just couldn't get past my mental block.

I did it though, I absolutely did it.

And I cannot stress this enough to anyone who is struggling with type one: Do not give up.
Really really try not to give up because trust me, I know that it is never going to be easy but it is all so worth fighting for. It is all worth it in the end, it takes courage and strength but the outcome of all the hard work is worth it.

I know 9.7%  isn't that great.  It still means my average blood sugar is around 12 but you know what? It's a huge difference from 6 weeks ago when my average blood sugar was 17 and my Hba1c was 12.5% and for me it is pretty damn good. Also, this reading was still affected by the two months prior to my last Hba1c test because it has only been about a month and a half since I last had it measured...so I feel like if my Hba1c wasn't so affected by the last Hba1c result then I have every reason to believe that it would probably be lower than 9.7% which I feel even better about.

I'm really hoping that at my next appointment in June I will have got this Hba1c down more. I hope I will. I know I will. I have to stay on track, like I said...I know I can do this!

-Ellie

It's that time again

It's that time again.

The dreaded Hba1c check. My Hba1c was 12.5%, while this is a really bad number...I had been and still am, doing lots more blood sugar checks which is a major breakthrough for me because that is something I struggled to keep up with the most. It was clear from the data on my blood sugar meter the effort that I had been putting in; so although my blood sugars hadn't been good...my efforts were obvious and so my consultant was proud of me for that. It's always nice to find the good in a Hba1c that is otherwise, really terrible to put it lightly.

I say dreaded, but this time the word doesn't carry so much weight. I don't dread it this time. I have been really trying for the past 6 weeks since my last Hba1c check. It has been a time of immense pride in myself for managing to keep on top of things for this long, it used to be, in effect, a vicious circle. I would go to my appointment, come out feeling really motivated to "do things right this time" and I would do it for about a week or so, but then slowly the drive and the motivation would fade out. I am determined not to let that happen any more, I am determined to get my Hba1c down. As I mentioned earlier, it has been just 6 weeks since my last appointment and a Hba1c test is a three month average and so, I realise that the blood sugars I have had for the past month and a half won't have a huge impact on the 12.5%, I have a feeling tomorrow's Hba1c will still be dominated a great deal by the blood sugars I had 2 months prior to the Hba1c I had a month and a half ago.

I am not asking for it to have dropped a huge amount because I know this isn't all that possible; but what I am asking is that my Hba1c has dropped. Even just a bit, I just need to see progress...I want to know that all my hard work is having an impact. I know I can do this, I absolutely know I can.

-Ellie

It's a...

I know there is loads more I could add on to that list, but I can't remember them so they aren't there. This is also not in any particular order either.

It's a...
Finger pricking,
Insulin injecting,
Insulin pump wearing,
Pump bolusing,
Basal rate setting,
Carbohydrate counting,
Test strip re-filling,
Insulin cartridge replacing,
Cannula changing,
Balancing act,
High blood sugar fighting,
Water drinking,
Low blood sugar treating,
Glucose tablet eating,
Nauseous feeling,
Hands shaking,
Still there while you're sleeping,
Tear inducing,
Pain inflicting,
Possibly organ damaging,
Life threatening,
Life changing,
Chronic disease,
Hospital appointment making,
Hba1c measuring,
Carefree years taking,
Supplies cupboard stocking,
Media mocking,
Lack of understanding,
Scientists working on curing,
Money fundraising,
Everyday you're learning,
Parents and family support needing,
Lumpy skin feeling,
How-to-stay alive training,
Very challenging,
Brings on struggling,
Secret-snacks smuggling,
Ketone fighting,
DKA avoiding,
Complication preventing,
Prescription ordering,
Sleepless night spending,
School day missing,
Diabetes information reading,
Blood sugar balancing,
Kind of life.

Lessons

Type one diabetes taught me a lot as a person, it teaches me things every day. For the last couple of years I had a big "diabetes burnout" and these are some of the more specific lessons I have derived from it. Even when I don't struggle so much and type one appears to be being nice to me, I still refer back to these things and know that they all come together to make one more person who believes they are stronger than type one.

I am still doing great with my blood sugars, I think this is the longest that I've kept up the routine of doing all that I am supposed to. I'm proud of myself for that; but in all honesty I feel proud of myself everyday just for dealing with this disease, even if I don't deal with it so great physically, mentally I feel like I have this. I can do it. Over the past couple of years of struggling a lot with type one, I learnt a lesson. The lesson is this: It's never going to be easy but it's all worth fighting for. It is so true. As type one diabetics we fight every single day to keep our blood sugars balanced, to stay out of hospital, to stay healthy, to stay alive; and this fight is not easy. It is never going to be a walk in the park with type one diabetes. So much affects blood sugar, stress, exercise, hormones, food, etc. But exactly as the quote says, fighting this disease is all so worth it, you learn to put a lot of effort into keeping the disease that can take so much, at bay. I feel like I had to change my attitude towards it slightly too...I have never had a negative attitude towards it so to speak, but for the last couple of years I feel as though I have possibly been taking the wrong approach.

We all take it three months at a time. Everyone works towards their Hba1c which is normally every three months. and so you vow to do great for the next three months until your hospital appointment. For me, that doesn't work and perhaps it really doesn't work for others either, especially those who struggle like I did, and still do at times. So I have learnt to take it one day at a time. It's less daunting that way; maybe that is part of why it's such a struggle to keep up with the routine? Three months is a long time and if you take it as one big chunk then it's going to be a big challenge. It's like the term "You bit off more than you can chew" So I learnt to take type one diabetes one day at a time. Think about it, it's 24 hours. Just make it through 24 hours with good blood sugars. Then when you wake up the next morning you vow to keep your blood sugars good that day and then make it through that 24 hours doing as you're supposed to. It all adds up, and before you know it the Hba1c test rolls round. It's worked for me to take it one day at a time, it really has.

I learnt how to accept help where it is needed. I needed it. I still do. I tried to do it all by myself, I tried to deal with the emotions associated with type one diabetes on my own sometimes. Bad choice. I found that doing this only made me feel more frustrated with everything diabetes-wise. Type one diabetes takes a toll on your emotions as well as your body. It's just the way it is. My mum and dad are my rock and I don't know what I would do with out them,  I love them with all my heart. I feel as though I tried to hide my feelings from them during my "diabetes burnout". I'm not sure why; it isn't because I didn't want their help because I did/do. It was perhaps because I just wanted them to see that I am stronger than type one, then I remembered that they already know that, of course they do...they tell me I'm strong and I show them everyday- I've learnt that letting out your emotions is not a sign of weakness, it's a sign that you are courageous enough to let yourself fall and trust that your family and friends are there to catch you. Love and support is everything. My parents and family are everything.

Hope. "A feeling of expectation and desire for a particular thing to happen" A life with type one diabetes would be even worse with out hope. Hope helps you stay positive. Everyone with type one diabetes lives in the hope of a cure; with hope that one day we will no longer have to deal with this disease.

-Ellie

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. 

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] 

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]