7th May 2015
Gemma Norris Blog 07/05/15. Aged 29
I’ve never really had a problem with being diabetic, the idea of injections and blood testing, nor have I struggled with knowing the ins and outs of how it all works and how to get good control. I never wished I didn’t have it or felt unlucky in any way.
What I have struggled with is feeling fat! Even then I struggled not to write being rather than feeling, but I now understand that my idea of fat is just that, an idea, an opinion, and not a fact!
I was diagnosed at 16 which in my view was probably one of the worst ages, starting to think more about my looks, my weight and boys and feeling inadequate when comparing myself to others. Food had never really been an issue to me up until that point, I thought about my weight a lot and didn’t like the way I looked but had been lucky in that I could eat whatever I wanted without much effect. Diabetes emphasized, compounded and accelerated everything!
Suddenly my world became about food, what I could and couldn’t eat, and slowly over the next 2 years my weight just kept creeping up.
One night I watched a programme on tv where a woman was talking about how she lost her sight because she stopped taking her insulin in order to lose weight. The sight part didn’t really resonate with me; all I remembered was the part where she said she could lose weight! And of course I thought, that’s for me! I’ll give that a try.
So that’s where it all began, some 10 years ago, and yet still it isn’t officially recognised as an eating disorder!
The first few weeks were hell, having never been in a state of ketoacidosis before I didn’t really know what was wrong me, even though I knew I had stopped my insulin I didn’t make the connection. I was so short of breath, going to the toilet every two minutes, a mouth like the Sahara desert, pain throughout my whole body that brought me to tears. But the main thing, I had lost weight!!
Over the next 6 years I was in and out of hospital, never for poor diabetic control though, I always knew how to hide that, how to inject just enough units to bring me back from the point of no return so that nobody would find out! I had a tumour develop in my liver so went for an MRI each month, damaged my oesophagus so badly I lived on milkshakes and had surgery for perineal abscesses, yep that’s right a great big abscess on my bum!! You’d think the embarrassment alone would be enough to make me stop!!
After the surgery I decided to give recovery ago, but it didn’t last, the clothes I went to hospital in were already tight by the time I left! And I suppose trying to recover from something alone, still keeping the truth of why I was really so ill a secret, was never going to work.
This brings me to 2 years and 2 months ago when I finally decided enough was enough, the main reason was that we had just spent 2 months caring for my husband’s brother who was dying from cancer, I saw what that did to my husband and I didn’t want him to suffer that sort of loss again, yes it was inevitable that one day he might, but what I was doing was guaranteeing that would happen, and a hell of a lot sooner than it should!!
So, I joined the DAFNE course, I practically had to beg to go on it as the diabetic nurse said I wasn’t worthy of a place with such poor control! Needless to say I don’t see that particular nurse anymore, but equally I can’t blame her, she didn’t know the truth of what I was really doing!!
From day one of DAFNE I was determined to keep good control no matter what. Something about spending a full week with 5 other diabetics who had good control made me not only ashamed but even more adamant that I wanted to be like them.
I decided to be completely honest with them all, I told them what I had been doing and why, how awful the side effects are and how I didn’t want any of them to go through it. It was the first time I had really been open and honest and it was so liberating, like a weight had been lifted!!
Since that day I’ve continued along that path. I can’t say it’s been easy, I developed insulin neuritis for the first year, an unbearable form of neuropathy that left me housebound and in a wheelchair and wanting to die just to be rid of the pain!! I had maculopathy in one of my eyes and became embarrassingly incontinent for a while!! I had 8 months of CBT, ditched the scales and girly magazines and try not to let my weight rule my life.
But now, present day all of that has been reversed, I have been so lucky in that the damage I did to my body wasn’t lasting, my hba1c has been at 5.8% for 2 years, I have more energy and my hair and skin are much improved.
The damage is real though, although mine, through hard work has been reversed this is rarely the case. The side effects of what I was doing were even worse than going through it at the time and had they not been reversible I’m not sure I could’ve lived that way, the sooner you start recovery the better, I can’t emphasise that enough, before it really is too late to ever have anything close to a normal life again.
The worst thing of all is the damage it did to my relationships, what I put everyone through. Having family and friends worry about me when I was ill and knowing that although it’s a mental illness, I ultimately did it to myself. I was the moodiest most miserable person to be around for those 6 years and I’m lucky I still have a husband!!
I’m working hard now to try to explain to people what was really going on, being open and honest and hoping that they may in some way understand.
I know it’s an incredibly hard thing for people to empathise with if they haven’t been there, something that can’t be seen physically, that goes on in someone’s mind always is.
But I want people to know that recovery is possible, it’s a long journey and nothing worth doing or having is ever easy but believe me when I say it’s so worth it.
No matter how much weight I could’ve lost I never would’ve been skinny enough, and the life I was sacrificing for the sake of a few pounds was far too big a price to pay.
I’m now looking to the future, planning for things I never would have dreamed of when omitting because I knew I wouldn’t grow old, have children or even the energy to go for a walk.
Now the world is my oyster! and I wouldn’t omit insulin again for anything, you can all do it, I promise it’s so worth it and a life without insulin really is no life at all.
Arnie will be taking part in the London Marathon to help raise money for SEED
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