Spare a Rose: Save a Life.

There are times in life - when my cannula rips out on a kitchen counter, or my Dexcom itches at my skin from lack of air under the over-used tape - that I find myself feeling less than grateful for the medical technology which keeps me alive. When the clumpy pump won't hide under a slinky top, or my Dexcom sensor protrudes from my leg under my skinny jeans like some kind of bodily 'yuck', I find myself frustrated with diabetes and the cyborg 'kit' that comes with it. But the truth is, that 'kit' - that expensive, wicked clever kit - does more than just keep me alive, it helps me live the life that I want; the life I deserve. 

It's hard to imagine, given my fortunate life in a developed country where it is considered wholly unacceptable for any person to have to die from lack of basic necessities like insulin, that there are children and young people in this very world - the one we share with them - who live on a constant perilous precipice.  Why?  Because they don't know whether or not they will have enough insulin to keep them alive today. 

This situation, which millions of children around the world face on a daily basis, is not only unacceptable, it should be impossible.  No child should die because of lack of access to insulin. Every child deserves to live, and not in constant anguish or fear that today may be their last. Every...single...child.

A group called Partnering for Diabetes Change, came together a while back to see how we, the diabetes community and the wider population of the world, can help.  That's when the 'Spare a Rose: Save a Life' campaign was born.

The Spare a Rose campaign invites people around the world to donate the cost of just one rose on Valentine's Day, just £3, to the International Diabetes Federation's Life for a Child programme which provides insulin to those living in developing countries.  That £3 will keep a child alive for a month.  That romantic bunch of roses, will keep a child alive for a year.

Last year $25,579 was raised, from donors in 684 countries, which kept 426 children alive for a year.

On Valentine's Day, why symbolise your love for someone by buying them something which will whither and die within days, when you could declare your love with a gift which will grow and thrive for a year.  Give life.

Spare a Rose: Save a Child.

Bra shopping and Trainspotting

I've reached the stage in life where my brain is officially full.  Not with useful information or anything which could contribute to a long and happy career, of course.  Quite the contrary; I know nothing of politics, science or history, but ask me the theme tune to 'Captain Planet' circa 1991, or what PSSO means in knitting, and I truly come into my own.  The problem is, due to being full to the brim with theme tunes, lyrics to every Julie Andrews song and the detailed workings of how to make a strawberry smoothie (it's all in the yogurt), in order for new information to enter I have to go through what is officially (not even a little bit officially) called 'brain leakage'.

When I gave birth to the little three months ago, brain leakage of momentous scale took place.  Out went information like how to access my online banking, mathematics and the location of my car keys, and in came how to put on a nappy, the theme tune to Rasta Mouse, and who the hell Macca Pacca is.  As a result of this mass leakage, other key knowledge was lost - like why I had previously always packed spare infusion sets wherever I went.

The thing about people living with diabetes is that we are nothing if not resourceful.

It was shortly after lunch I ripped my cannula out today when a careless trouser waist-band re-adjustment manoeuvre took place.  I was an hour away from home spending a rare few hours with my best friend, buying bras to fit my post-baby body (see also: small refugee family could camp in the cups...).  I was desperate not to go home, but with an abundance of insulin in my possession and no way of administering it, I feared our day together might be coming to the most swift of ends.  Unsure of whether or not I would be successful, we hot-footed it to the local Boots, hoping that our foray into the world of well-fitting bras wasn't the end of our fun today, if we could only secure a hypodermic needle.

I explained my predicament to the pharmacist as she asked me questions about which kind of needle I would need.  Sadly that information was lost in the official (not official) Brain Leakage of 2013, when I got a new job. But between us we managed to establish that 'nothing fancy' would do.

"Would you like one of the drug user kits?" she asked, helpfully.

Slightly taken aback but glad there might be an option, I rummaged through the kits given out free to intravenous drug users in a bid to encourage safer and cleaner ways of using drugs, if they must.  With a veritable Pandora's box of thingameejigees, I eventually came across an individually wrapped  hypodermic needle.

"Perfect!",  I proclaimed as an examination of the needle showed a clear gauge on the side which I could use to draw up insulin to the correct amount.  Sheepishly (but gratefully) I tucked the kit away into my bag, hoping no-one with a knowledge of drug use might see me excitedly fumbling through the kit. 

Luckily, the lady in Boots saved my day, and my diabetes, a great deal of hassle.  On arriving home I was a happy 4.4 mmol, and pleased that I'd found a workaround for not having been prepared. But having learned today that carrying a spare cannula in my bag is absolutely vital, I only dread to think what else has now leaked out of my too-full brain... 

Control Freaky

This picture gives me the shivers. Not the butter compartment, well-known as the des res living accommodation of insulin, but the fact that this butter compartment is in a communal refrigerator of a public campsite inhabited by up to 100 people at any one time. 

I'm a self-confessed control freak about most things - no doubt a result of 28 years of having words like 'control', 'in-range' and 'compliant' (*shudders*) a part of my lexicon since diagnosis. But I'm especially control freaky about my diabetes. I feel safer that way. Anything I don't have control over with regards to my blood sugars, medications - even complications, unnerves me. 

In England, leaving your insulin at the whim of any would-be trouble-maker is a big no-no,  and I would rather leave my car open with a sat nav on display and a large sign saying 'take me', than leave my insulin out for the taking. 

That said, I am currently at the beginning of a eight-week trip around New Zealand, and while my Frio case is doing a good job at stopping my insulin from warming up, it doesn't feel as though it is keeping 'refrigerated' exactly. With its chemical stability comprised after 28 days, and my trip lasting 65, I am trying to keep mu insulin in as good a condition as possible and trying to keep it refrigerated. This means embracing the public fridge now and then, come what may. 

Let's hope New Zealand lives up to its name of being a safe place. And let's hope leaving my insulin on display is the turning over of a new relaxed leaf for me. 

Although there is a chance that the total control freak in me may also have 2 bottles stashed in my emergency, 'goes everywhere with me' travel bag, and one more cheeky bottle hidden in my handbag. I'm also insured up to the hilt and have an app which shows me all the nearest hospitals and doctor surgeries. You know, just in case. 

Eating Disorder? Unexpected.

"I'm a fraud", I thought, as I sat beneath a brightly-coloured and decidedly 70s-esque 'flower power' sign with luminous lettering, welcoming me to join in with 'Eating Disorder Awareness Week 2014'.  I was painfully aware of the emaciated girl sitting across from me, avoiding eye contact with me at all costs. I was avoiding hers, too, in fairness.  Could you have picked a more inappropriate week to come here, Anna?

I was sitting in the waiting room of the April House Eating Disorders suite in Southampton, having been referred after an emotional out-pouring to my dietician at clinic some weeks before.  I had told her through choked-up tears how all my adult life I had been overweight, except for a brief stint in my early 20s of extreme dieting, over-exercising and dabbling with diet pills (the ones that have no label and are kept 'out back' at the beautician's).  I explained that I had been on every diet going but remained obese and utterly ashamed of it; ashamed of myself.  Worse still I was gaining weight, again.  I cried and asked her for help, because I had recently found myself behaving in an inexplicably compulsive way around food - a way I had never noticed before, but which would explain why I was the weight I was, despite always exclaiming to people "I just don't know why I can't lose weight!"

I was asking for help.

Now, a few weeks on I found myself in a clinic with clinical psychologists and a host of other degree-holding professionals all wanting to take what I said seriously.  The thought now of being branded with the label 'has an eating disorder' was becoming a little too much for me.  I had said for some time that my eating was disordered, but an eating disorder?  No.

I picked at the label on my drinks bottle and shuffled my feet - left over right, right over left - all the while making sure my eyes didn't meet with anyone else's. It would be mortifying to see the looks of 'what are you doing here?' on their faces.  

"What are you doing here?" I angrily demanded from myself.  "You don't have an eating disorder, you just need to diet and lose some weight. You're just fat, that's all".

As I toyed with the idea of simply getting up and leaving - of not wasting everyone's time - the decision was all too swiftly taken away from me.  "Anna Presswell", a voice called. 

"Oh God.  Shit.  This is going to be mortifying when they tell me I shouldn't be wasting their time. Just get through the 2-hour assessment and GO!"

Lucy, was my assessor's name.  She was warm and friendly, with a clip-board full of questions about my life that in any other situation would be considered obscenely intrusive.  Perhaps the hardest question of all was "When did your issues with food start?". I still couldn't answer it, truth be told.  

We trawled through questions about eating, lifestyle, living arrangements, diabetes, food-regimes and my feelings towards myself.  Half-way through I was convinced that I would never need to see Lucy again, because I was clearly not in the right place, and we both knew it.

"Have you ever self-harmed?", "No".  

"Have you ever tried to take your own life?", "No". 

"Have you ever made yourself sick?", "No".  

"Do you have a desire for an empty stomach?", "No". 

"Are you isolated from loved ones?", "God no".

I was right.  This is dreadful.

"Do you exhibit frantic behaviour around food?" "Um, yes". 

"Do you hide your eating behaviour from loved ones?", "Uh, yes". 

"Do you eat to the point your stomach is uncomfortably full?", "Well, yes".  

"Do you eat in secret?", "Yeah". 

"Do you experience shame after eating?", "Every single day".  

The yeses started to multiply. And the questions went on.  The open-ended questions left me in tears because I had to explain things I'd never before said out loud.  Each one exposing more of my twisted relationship with food.

I told Lucy about what had brought me there: about the day when I decided to have a chocolate bar after work, and found myself six minutes later having eating four chocolate bars and three packets of crisps. Of how I saw people watching me in the car park as I ate the chocolate bars in three enormous mouthfuls, but was too frantic to care. Of how I came home, already disgusted with myself and feeling the blood sugar rise from the chaotic eating my insulin could never catch up with, and about lying to my husband about having bought myself one chocolate bar as a treat.  Of how ashamed I felt when I caught myself lying about food to one of the few people I could have told.

As the session drew to a close I suddenly found myself desperate for Lucy to tell me that I wouldn't just be left hanging if their services weren't going to be right for me.  I suddenly realised how glad I was that I hadn't run off at the start of the day.

"So, if you aren't able to help me, will anyone else?  What if I don't have a diagnostically recognised condition, can anyone still help me, or is this it?".  My eyes pleaded with her.

"Anna, our decisions about who we can work with and whether our service will be suitable for someone are made at our Wednesday morning team meeting.  But unofficially, it's clear to me that you have some real issues around food, and we would recognise those issues as an eating disorder.  You are on what we would call the binge-eating disorder spectrum.  And I am confident that we have something we can offer you."

With that I found my head in my hands as I let out a mixture of sobs and cries, as I found myself thanking Lucy.  I was grateful, but I didn't know what for.  I was relieved, but I couldn't understand why.  I felt lighter, but I had no idea what this meant.  

My relationship with food has always been, complicated.  I was diagnosed at four years old, when my parents were forced to impose strict rules around eating.  Sometimes I went hungry; sometimes I was forced to eat when I didn't want anything.  It kept my body healthy, and for that I am grateful.  But what that diagnosis did to me emotionally, is only just being picked at 27 years down the line.