Diabetes, gastroparesis and weight loss

Hi everyone! As some of you may have noticed I have been AWOL for quite some time on social media and although I am trying to keep up with my diabetes activities I'm finding it a bit of a struggle. The main reason for this is the sudden and (currently) unexplained lack of energy I have been experiencing which has left me with little to no "get up and go" to do the extra work that I used to do on my blog. I say it's unexplained, but there are a few reasons which stand out to me such as being unwell with gastroparesis which had caused me to vomit almost daily for around 3 months now, sometimes up to 4 - 5 times a day. Sexy, right?

Guest Blog - So what is a diabetic diet?

A big thanks to Dan for writing this guest post! You can check out Dan's social media platforms at the end of this blog.

How many times have you been asked the question:

"But you're a diabetic, can you eat that?"

If you're anything like me, it's been a fair few times.

I understand the well meaning of this from those who aren't familiar with diabetes. They've heard certain stories from the media and word of mouth about how diabetes is essentially a sugar related disease and they've assumed that you can't eat sugar or anything fun.

My monthly article for The Diabetes Times is a delicate discussion about understanding the reasons behind insulin restriction, omission and diabulimia. Please click this link to read it. I would love to hear your thoughts on this, so please comment here or find me on twitter (@ninjabetic1) or on facebook (ninjabetics) to let me know what you think.

Laura x 

Life isn't always sweet

I saw this post on twitter recently by Kim/Diabetes - aka @txtngmypancreas and it got me thinking about what I hold back on when I blog about my diabetes and why. I believe my biggest reason is because I don't fully understand how I feel about my diabetes at times, which can be incredibly frustrating, but how else will I understand it unless I address it?

So one of my "this is really hard and I'm struggling but I'm HERE" stories revolves around the way I see myself - how I physically see myself when I look in the mirror. 

I look in the mirror and I don't like what I see. It's not the fact that I have an insulin pump bungee jumping from the side of my stomach, the little pin prick marks on my finger tips from testing my blood sugars, the yellow bruise from a previous cannula that I put in at a dodgy angle or yanked out in my sleep... No, what I don't like is my figure and every day I wish I looked different. 

12 years ago, at the age of 16 I was very aware of how I looked, what I wore and how quickly my body had changed. I'd started to develop lovely curves (I was finally becoming a woman!) but I soon lost them due to undiagnosed Type 1 diabetes. I lost a lot of weight in a short space of time and looked gaunt and fragile - at times I really felt like I was going to break in half. Oh the joys of undiagnosed diabetes! After my diagnosis however, my curves soon returned as I started to take insulin and become healthy again. Then, due to 10 years of being stubborn and neglecting my diabetes, failing to take my insulin and not listening to what my body wanted/needed, my weight dropped again. Following an admission it would rise to a normal range and drop again when I resumed my regime of neglect... rise, fall, rise, fall... Talk about a yo-yo diet from hell. 

Now when I look in the mirror and I'm very aware that my weight hasn't fallen for 2 years. Perhaps this is a good thing in other people's eyes (my doctors for example), but for me, my weight consumes a lot of my time. I spend far too much time trying not to think about it which, in turn, leads to me thinking about it. I'm very aware that it's something I don't like about myself and it always sits at the back of my mind, nagging away at me. The temptation to revert is often strong. Sadly, every time I eat I need to think, in quite a lot of detail, about food; the carbohydrate content, the fat content (which always leads me to the calorie content), the portion size, the last time I ate, the next time I plan to eat, if I'll burn any of it off with exercise, if I'm going to be less active and burning very little off etc etc. I do feel that this constant flow of information contributes to some quite negative feelings about my weight because I'm so aware of what I'm putting into my body and the affect it may have. 

On the other hand though, is this necessarily a bad thing? Surely being aware of what's going into my body is a good thing? In recent months, since studying bits and pieces about nutrition, I've learnt huge amounts about what my body needs in order to function and repair itself when necessary, so why does food still instil some fear into me? At the back of my mind I feel that it may be due to the way that diabetes is portrayed, the stereotype that is projected to the public with such negative connotations, but my honest answer is that I just don't know. I suppose that's the point to this blog - my diabetes has impacted on me in a way that I can't understand, that my HCPs don't seem to understand, and there isn't (as far as I can tell) a text book answer. 

I suppose there's no other way to end this other than saying that, yeah... my life isn't as sweet as it sometimes seems. 

Ninjabetic x 

Insulin pump trial - Week 1

So a few of you may have heard me mentioning that I started my insulin pump trial. This is a 6 month trial with frequent reviews at my diabetes clinic to ensure that I’m getting the best out of my pump and that I can use it safely.

Before starting I sat down with my consultant and set myself 4 goals to achieve by the end of the trial:

• Reducing my A1c by 5mmol/mol
• Maintaining a healthy weight and BMI
• Reducing blood glucose variability by 20%
• Reducing hypoglycaemia experience by 30%

I’ve already attended a diabetes educational course (JIGSAW) and intense insulin therapy appointments (for almost a year) to try to improve my control. Now I need to make sure that an insulin pump is going to be effective treatment for me. Once my 6 months is up my pre and post trial data will be sent away to the CCG (people with the money) to assess my need to keep the pump.

Go time!

The night before my start date I ran through all of my biggest pump worries.

These were:

• Inserting the cannula myself
• Being able to hide the pump in my clothes
• Catching the tubing on handles/people/my dog/anything that sticks out
• Hypos/DKA

After a week of having my pump (named Iain after my consultant) the only issue that I’ve had is with inserting the cannula. However this reminded me of when I first started injecting, when I would spend ages trying to put the needle in. Soon after diagnosis I had no issues, so I really hope that I will get to that stage soon with my pump.

Iain the Pump - Accu-Chek Spirit Combo

After 2 days of pumping I was amazed at my blood sugars readings and how controlled they had become, I fell in love with Iain the pump (and soon regretted calling him Iain). Pre and post meals blood sugars were within my target of 5-10 and although I was having a few lows my rebound highs weren’t anywhere near as bad as they were when I was on MDI (multiple daily injections). I actually look forward to testing my sugars now, whereas before I used to dread seeing my readings because I would feel so disappointed with myself if they were off of target (which was quite often).

Taken today - After 1 week of using the pump

All in all my 1^st week of being a pumper has been a big turning point for me. If I’m honest I was starting to despair with my diabetes and it was really upsetting me, to the point that it affected my life far too much. Now I have a lot more hope and have a positive outlook again.

If there’s anyone out there who is thinking about insulin pump therapy then I would definitely recommend you give it a go if it’s possible (I know it’s not always easy to get one). And if it’s not for you, then at least you’ve tried!

Ninjabetic x

Pump it up!!

Hi! My name’s Laura and it’s been 2 years since my last DKA!

As strange as this may sound, staying out of A&E for two years is quite an achievement for me! If I turned up now I bet none of the staff would say; “Oh you’re back again!” or recognise my face. Often I felt like a part of the furniture. I even knew how to disable the annoying beep on the sliding scale machines.

Although I’m proud of myself for all I have achieved so far, my blood sugars still aren’t where they should be and this is having a huge knock on effect, physically and emotionally.

Despite numerous changes to my insulin regime, CGM loans, regular and lengthy appointments with my (very patient) consultant and a diabetes educational programme, I’m not getting any further towards good control – In fact my results show that I’m going to opposite way!

I knew diabetes wouldn’t be easy but for months now it has been a time consuming, energy draining, unresponsive  pain in the… pancreas!

My a1c has crept up - My frustrations have also crept up with it (can you tell?)

Hypos have become a regular occurrence - In the last 30 days 15% of my blood glucose readings were hypos.  Weight management is distracting and affecting me… even losing a few pounds is an impossible task.

It’s been almost 11 years since my diagnosis and still I regularly wake up feeling like I’ve not slept for weeks. I worry about falling off the diabetes wagon wheel and getting crushed by complications. I still feel faint at the sight of injecting myself… the bruises injections leave on my legs and stomach.

So soon I will start my six month insulin pump trial and hopefully this will be the start of getting me back. I desperately want to feel like me again… I want to be the bouncy, carefree, energetic ninja that I know is inside me! I don’t want to feel that I’m taking one step forward and two steps back anymore… I just want to keep stepping forwards.

Bring on team pump!!!! :)

Ninjabetic x

Don't pity me - learn from me

Today's blog post wasn't meant to be here. It was going to be written for my nursing blog as I wanted to talk about my first patient experience. Instead I'm writing about a comment which was made in response to my diabetes.

I'm volunteering at a local centre, gaining some hands on experience with patients. Today I was chatting away with a patient who has Type 2 diabetes. I struck up conversation as soon as he mentioned his diabetes and chatted with him as we both have the same consultant. As the nurse who I was shadowing came into the cubical she caught the end of our conversation.

"Do you have diabetes Laura?"

I replied (quite proudly) that I have Type 1 diabetes and was diagnosed 10 years ago at the age of 16.

"Oh you poor thing, but you're so slim as well!" was her response.

I was stunned and quite disheartened by this. I felt my face drop and didn't really know what to say at first. Admittedly it wasn't the first time that I'd experienced a lack of knowledge or understanding about the different types of diabetes, but I've never experienced it from a health care professional before. I couldn't not say anything could I? Diabetes is important to me, it's a part of me, it's the area that I want to have a career in and I think of myself as a diabetes advocate now. If I didn't correct the comment then I'd be letting the side down. Go team!!

I explained that weight has nothing to do with me having diabetes. I reiterated that I have Type 1 diabetes and explained that it is an autoimmune disease which has nothing to do with my lifestyle, and I had no influence or control over my diagnosis. I felt that what I was saying was such an obvious statement to make that I may have sounded patronising, but I was polite and I didn't let on that I'd been offended.

However there was no getting away from the fact that a health care professional had said this. The comment hadn't been made out of malice and could have been an honest mistake, but to me this just shows what a lack of education there is out there. We need to trust people to care for us and to know how to manage our condition, but can we trust people who don't know the basics of diabetes?

Hopefully the tiny bit of knowledge that I passed on will be remembered and passed on again... hopefully.

What has also been playing on my mind was the pity; "Oh poor you." I didn't understand why someone was feeling sorry for me. I'm happy healthy and fit! I don't look ill and I'm learning to manage my condition. I personally don't see diabetes as an illness the majority of the time. Occasionally it does give me a good beating but I still live a normal life.

I know the effects of negative perceptions about diabetes. I've experienced those effects first hand and I can honestly say that supporting someone and highlighting the positive aspects has much more of an impact than pitying and focusing on the negatives. No one should be blinded by the media and the way that Type 1 diabetes is wrongly portrayed. Ask us, make the effort to see what we can do, look at us and see the real image of a person with Type 1 diabetes. People will be shocked that we aren't the stereotype that is projected to the general public, maybe that will shock them into thinking next time before speaking.

I would never pity anyone who has a chronic condition; in fact I would praise them for picking themselves up time after time and getting on with their lives! I'm a stronger person for having diabetes and if anyone feels sorry for me then they can walk on by.

Ninjabetic