Guest Blog: How an annual review showed I'd made no progress

After my last post on the need to clean up the dirty language sometimes used by HCPs I was contacted by someone who asked if I'd allow an anonymous guest post and I was more than happy to do so. I hope, like me, you think it's worth sharing.

Diabetes, eating disorders and my annual review

Type 1 diabetes changed my relationship with food.

I developed an eating disorder but I didn't tell anyone. When I lost weight everyone told me how great I looked and how well I was doing, so I carried on. It was about control and I was very good at it! Everybody wanted to know my secret so they could lose weight just like me.

Eventually I couldn't carry on doing what I was doing. I'd controlled my eating so much that I could hardly eat. I tried to fix things on my own because I didn't want to admit what I'd done or what I was doing. At first I made progress and I was pleased with myself. I ate food and things didn't go wrong like I thought they would. When things happened that I didn't like I stopped until I got my confidence back and then I tried again. I wanted to have a normal relationship with food. But I wasn't addressing the cause of the problem, I was just trying to control it differently.

I'd traded one eating disorder for another. Now I struggle with a binge eating disorder. I'm putting on weight and people now comment on that. Eating disorders have been my secret for a long time. I don't like what I do but it doesn't stop me doing it.

I finally managed to tell my diabetes nurse (the one I see at hospital) what I was doing and I was referred to a psychologist. It seemed to take forever to see them even though it was only a couple of months. I'd unravelled my problem but had no help to put the genie back in the bottle whilst I waited.

Eventually I had my first meeting. Nothing really changed. Same with the next and the next and then something changed. Talking and thinking about what I was doing started to help me and the binge eating started to become less regular. The gaps between binge sessions stated to become bigger. I still had them, I still found it hard, but I was starting to deal with them better. I knew I wasn't better but I felt I'd finally started to make progress.

When I had my diabetic annual review with the practice nurse I realised I wasn't as far on as I thought I was.

She checked by blood pressure, told me my hba1c (7.6%) and then asked me if I wanted to be weighed.

I told her I'd just seen my diabetes nurse at hospital and had been weighed there. She seemed put out that I was seeing someone else about my diabetes but I carried on and told her my weight anyway. Then she commented that my weight had increased significantly since the last time I'd seen her. ARGGH! Tell me something I don't know! I have to see myself in the mirror every day! I thought they knew I had an eating disorder and so I mentioned that I was seeing a psychologist for my binge eating and then it got worse. She decided to lecture me, er, give me some advice.

"Well you know the difference between those who are over weight and those that are not? It's that they stop eating when they've had enough. They don't eat when they aren't hungry or bored."

WHAT???!!! That's not it? You really don't understand, you don't understand what I'm going through and you REALLY, REALLY aren't helping with your advice!!! If you asked me about what is going on rather than assuming then maybe I wouldn't be shutting down whilst sat in this room with you!

I just said "yes".

Thankfully she had no further advice to give and didn't want to check anything else.

I was going to ask why she hasn't checked my feet; what my urine results were, ask about all those other things you are supposed to check. Instead I just wanted to leave and that's what I did. Kicking myself.

I went home and binged. I hadn't done it for three weeks but this pushed me back to the bad place I've lived in for so long. In the evening I did it again. I've never binged twice in one day before. I feel like I've gone back to square one, no, to square zero.

The following day I woke with a bg over 22.
The first thought that drifted through my head was that it would minimise the weight gain.

So thank you to the practice nurse who gave their advice. It helped me realise I've made no progress at all.

I'm not sure if I'm more annoyed with what the nurse said or how I dealt with it afterwards.

I think I hate myself more for what I did.

Demons in your head?

I was in McDonalds recently.

To be honest I've been there quite a lot of late, usually around 11:00pm after completing some DIY at the house I've bought. I pass a 24hr McDonalds on my journey back to the rented accommodation I'm currently living in and just as my Levemir injection alarm goes off I'm usually tucking into a McFlurry treat!

The other night whilst eating a delightful Dairy Milk McFlurry, a song came on and I asked my phone to tell me what I was listening to... why? because I'd heard "the c word" in the lyrics.

For the avoidance of doubt, "the c word" is... carbohydrates!

...and it turned out the song was Vertigo by Rumer.



The song isn't the style of music I'd normally listen to, but ever since my diabetes diagnosis my ears have been able to tune into any conversation that mentions the c word with laser like precision. Although the song isn't about diabetes (far from it!), with a few tweaks here and there it certainly could be...
The concept of carbohydrates at 4am in the morning obviously has a slightly different meaning in my version of the song and I'll admit to playing it on repeat at the moment because (in my version) the lyrics are ALL about diabetes.

The challenge of diabetes isn't always obvious to those around us, sometimes there can be battles going on inside our heads and dealing with those "demons" can take its toll on our emotional, mental and physical well-being. Yet, bravely(?), we continue to tell those around us that we are fine. Trying to fool everyone (including ourselves) that everything is ok and that we are "managing" to deal with the condition.

Why do we do it? Are we too hung up with "not being a burden"? Do we decide help won't be available without really knowing and therefore decide not to ask? Maybe we feel ashamed of the need to ask?

There certainly isn't any shame in asking for assistance to overcome the "demons" and there should be no barriers in obtaining the help needed. So why do we lie to ourselves and others?

Imagine informing someone that they'd been signed up to a full time job which they cannot quit, that it came with no holidays for the rest of their lives, no weekends off, no opportunity to have a day off sick and indeed if they were unwell they would need to put in a double shift. It wouldn't take long before they were screaming for help. That's how cruel the employer Diabetes is - and in many ways it can be much, much worse!

So why not go into battle with the demons in your head (and help yourself and those around you) by sharing them with your HCP? After all, a problem shared might not be a problem halved... it might be a problem resolved.

Appropriate lyrics?

Pass me the bottle, pour me the wine.

I might be face down on the table, but I assure you I'm doing just fine.
Give me a cigarette, you heard what I said,
'cause I'm going into battle with the demons in my head.

'Cause I've seen trouble, I've seen more than my share.
I said I've seen trouble and I don't care any more.
No, I don't care any more.

You say I'm outspoken, that I'm loud, that I'm obtuse.

While I'm here all screwed up, baby, tell me what's your excuse?

Gimme carbohydrates, at four in the morning.

Gimme carbohydrates, 'cause I don't care any more.

No, I don't care any more.