Diabetes Wise

The Girl at the Crossing

Standing waiting to cross the road, she lifted up her shirt, looked down and peered at her infusion set. The lights changed. She put her shirt back down and carried on her way.

The girl wasn't me.

I've been overwhelmed in the last couple of weeks. Being in plaster and having to wait for surgery, knowing that it will be at least another six weeks in plaster after surgery and just wishing I could get it done sooner, to end this thing sooner.

I still have to get up and go to work. I'm self employed, so if I don't work, I don't make any money. And the bills won't pay themselves. I have to hop on and off the bus and hope the drivers don't pull away sharply before I'm safely seated.

While my friends and family are great, they can't be with me 24/7. I don't have a partner, and I live alone. (And, in fact, most of my close family have chosen this very week to be on holidays in far flung places.)

I ran out of milk today, and there was no one else to get some for me. Picture this: girl on crutches with two pints of milk swinging from  the little finger of her right hand, and a box of fabric conditioner pearls tucked under her chin. I swear the guy on the till sniggered, but no one offered to help!

There was no one to take out the rubbish today, and I didn't want it sitting in the kitchen overnight. The laundry still needed doing. The bathroon needed to be cleaned.

But seeing that girl, standing by the roadside checking out her infusion set reminded me that, at least as far as diabetes goes, dealing with the crazy effects all of this is having on my blood sugar, I'm not alone.

It is just a matter of typing the words.

'Snap'

Once you've heard it, you never forget the sound of a tendon snapping.

Yes, that is my leg.

And yes, I am very pissed off.

It seems I have managed to rupture my right achilles tendon for the third time in eighteen months, hence the plaster cast.

Damn.

The Monster Unleashed

I suppose I shouldn't be embarrassed by what happened this morning, but I certainly can't help feeling  thoroughly ashamed at how rude I must have seemed. In front of a whole queue of people.

I knew I was hypoglycaemic before I even got off the bus. A test confirmed: 2.3 (41). A frantic rummage in my bag turned up my tube of glucose tablets.

With one tablet in it.

Damn.

How could I have forgotten to fill it up? I know I'm only human, and these things happen, but why did I have to be hypoglycaemic at a time when I had just four grams of carbs on me? It seemed like a cruel joke on the part of fate.

I was on my way to hospital for a non diabetes related appointment. Fortunately there is a branch of WHSmiths right inside the entrance to the hospital. I grabbed a bottle of Lucozade and, knowing I still had a lot of active insulin on board, (which was a remarkably coherent thought given that ten minutes including a five minute walk to the hospital had passed since the test and I was probably now even lower) a cereal bar.

I joined the queue.

I'm always told that queueing is a remarkably English thing to do. That doesn't mean we enjoy it, just that we do it without question. We even form queues when we don't really know what we are queueing for. But this queue had to be the slowest moving queue in England. In fact, it wasn't moving at all. It felt like five minutes passed, though it probably wasn't more than one or two.

If I had been in a logical frame of mind, a non hypoglycaemic frame of mind, then I'd probably just have opened the Lucozade there and then and drunk some. But if I wasn't hypoglycaemic it wouldn't have mattered. Instead, with all the stubborness of hypoglycaemia, my brain hung on to the hard-wired thought that we queue first, then pay, then eat and drink.

So instead, frustrated and impatient with sweat pouring off my brow and legs turning to jelly, I did something totally stupid: I marched to the front of the queue, slammed my potential purchases on the counter and declared loudly "I wish you could all get your act together" before storming out of the shop.

This was in a hospital. I'm sure they've seen worse. But only I knew I was hypoglycaemic. The queue of people gawping at my outburst didn't know. The bewildered cashier, who probably had no idea what she'd done wrong, didn't know.

They probably just thought I was rude and inconsiderate, and breaking the cardinal rule of being patient in a queue, waiting your turn.

And worst of all?

I had to swallow my pride two minutes later and return to the very same shop, the only one available, retrieve a bottle of Lucozade and go to the counter, thankfully now queue-less, to pay.

I placed my purchases on the counter, accompanied by a few drops of the sweat coursing from my face. With shaky hands I threw a five pound note at the cashier and grabbed the Lucozade back before she even had a chance to scan the barcode or think about my change.

But I couldn't get the damn bottle open. My hands were shaking too much.

The cashier looked at me. Wordlessly she took the bottle from me and opened it.

"Are you OK?" she asked. I shook my head, tears adding themselves to the sweat on my face.

"It's OK. Drink some more" she urged. "You're shaking really badly. Do you need a chair?"

I shook my head again, this time mumbling "I just need sugar"

"It's OK" she repeated "Don't worry, you just take your time"

I couldn't believe her kindness. Her rationality. Her total understanding. Perhaps she recognised my hypo. Perhaps has diabetes herself. Perhaps she has a relative with diabetes, or her best friend has it. I'll never know what made her just get it, but alongside being incredibly grateful that she did I can't help feeling all the more guilty and ashamed for my outburst of rudeness.

I'm cursing the monster inside me, and hypoglycamia for unleashing it.

My Insight on Insets

For many of you, this may well come under the 'totally uninteresting' category of blog posts: Anyone who, or whose child, doesn't pump, anyone who uses or has ever used an Inset themselves, or anyone who is perfectly happy with the infusion set they already use, thank you very much. That is probably quite a lot of you, and the rest of you will probably be struck by how much like a High School 'Compare and Contrast' science essay this is, but since at least one person (thank you Tiffany) has expressed an interest, here I go.

As I stated here, I was lucky enough to acquire some Insets on my trip to San Francisco. This is significant because Insets are not available in the UK and I am currently only able to order Comfort and Comfort Short sets without having to pay out of pocket for them. There is a part of me that really likes 90 degree sets, as I have always found they scar my skin less and stick better, especially when swimming. So when a friend offered to trade me a box of Insets (I took a box of Comforts back in return) I jumped at the chance.

The verdict?

Love 'em!

The sets stick to my skin brilliantly with no peeling after three and half days, which is how long I'd ideally like go between set changes, in order to make it a twice a week routine that is easy to stick to. I always find with the Comforts (Silhouettes/Tenders) that the little window (see picture on the right) that enables you to see the cannula starts to pull away from the rest of the infusion set after a couple of days leaving it semi-uncovered. I worry that this raises the liklihood of an infection, and also seems to cause the skin around the site to redden, which in turn leaves a mark on my skin after removal. I often end up changing these sets sooner than three days, which obviously pushes costs up.

The connector between the set and the tubing on the Inset is universal - it can be connected either way round unlike that on the Comforts, which have a 'right' and a 'wrong' way. This saves fumbling in the dark after I've disconnected for a trip to the bathroom in the middle of the night! And the different colours on the plastic of the set area nice, if totally unnecessary, touch!

One of the biggest benefits of the Inset is the built in Inserter. I've used Quick Sets in the past, but when I was out of the house I either never had the Inserter with me, or found it in the bottom of my bag (usually covered in crushed glucose tablets and biscuit crumbs!) Although these sets can be inserted by hand, Medtronic don't recommend it, and I tended to find that hand inserted ones led to more problems - kinking and crimping.

The Inserter also has the value that you can replace the lid on it after the insertion which instantly securely covers up the used insertion needle until you get somewhere to dispose of it correctly. Comforts are a nightmare in this regard. If you have to insert one whilst out and about you then have an inch and a half long needle to carry around with you without sticking it into anyone. I've often had to find creative ways of keeping them safe.

Today was a case in point. I accidentally pulled out my Inset while trying on new spectacle frames. (The spectacle frames are not related, but this proves how you can trash an infusion set in the most unlikely ways!) I was just about done with choosing, and needed a coffee, so I popped next door to Starbucks, where I proceeded to insert a new Inset, seal the inserter off and enjoy my Macchiato. I often wonder if people will look at me strangely when I insert a set in public, but when I got up to leave I spotted a man caressing and sniffing (yes, sniffing) a pair of shoes. By London standards, inserting an infusion set is not odd at all!

A Damn Big Hole

---

"I'm a disabled person"

"That's not how I see you"

"Why not? Why? It's who I am. Who I've always been. It's how I grew up. It is how I see myself. I have never considered myself handicapped or broken. I don't need to be fixed. If it weren't for this pain, and the limits I'm facing at work and looking after my son, I'd never even consider getting a new hip. This surgery is going to take away my crutch forever, and everybody says that is sooo great. But what else will I be giving up? Who will I be then?"

---

So says Dr. Kerri Weaver, of the operation scheduled to replace her congenitally abnormal hip. The hip that has caused her to walk with a crutch for her entire adult life. Leaving aside that she is a fictional character, she almost certainly isn't the only person to feel this way in relation to a disability or chronic illness. In fact, I  know she isn't. Because there is a part of me that can take what she says and apply it to me.

I don't consider myself to be disabled.

But I do consider myself to be diabetic.

And that is what I am, what I have always (bar three years) been and how I grew up. Diabetes most definitely doesn't define me, but it would be pointless to deny that it is a huge part of who I am. It shapes so many aspects of me and the way that I live my life: self awareness, self confidence, responsibility, empathy, compassion, determination, tenacity... Would I have turned out to be the person that I am today, the person that I love being today and everyday, without diabetes along for the ride?

I don't consider myself handicapped by diabetes either, when handicap is considered under its internationally agreed definition: a disadvantage that limits or prevents the fulfilment of a role that is normal for that individual. It is a social concept. And quite simply, there is nothing that I can't do because of diabetes. I refuse to let there be. Diabetes demands effort and time from me for good management but it has given me things: skills, strengths, positive emotions; Sometimes I think the one thing it hasn't given me is the words to explain how I feel properly. It has taken very little away.

But my feeling still come tearing apart from Kerri Weaver's when I consider the idea of being 'fixed'.

Of course I want to be fixed.

I want a cure with the same passion and desperation as every other person who is affected by diabetes. Sometimes I'm overwhelmed by impatience and longing, when I let myself dream just a little too long about what it would be like never to have to think about blood glucose levels, carbs and insulin doses again; What it would be like to be free from the fear of hypoglycaemia and the fear complications.

Somehow though, I still grind uncomfortably, harshly, reluctantly back, because like Kerri and her pain, if it weren't for that fear of lows and complications, and if it weren't for just how difficult and frustrating diabetes so frequently is to manage, I'm not sure I'd be so bothered about getting mended.

I know I won't have to give up all those things I've listed above that it has given me and the aspects of my personality in which diabetes had likely played a role. I know that I will still be me. But diabetes keeps on giving. I learn new things from diabetes almost every day. And I make new friends. That will be a shame to give up. More simply, diabetes takes such a chunk of mental and emotional effort everyday, and such a chunk of physical time, that even though I long for it, I can't imagine what I will do with that time and energy if diabetes is not there to consume it.

I want diabetes gone. I have no doubt, though, that it will change me.

And it will leave a damn big hole.