Diabetes Wise

How My Pump Ended Up in the Trash

Wearing an insulin pump, with or without CGM, can be challenging to even the best person's patience. Between incessant alarms, strange bulges under clothing, tubing that pops out at the most inopportune moments, especially when there is a door handle in the vicinity, itchy infusion set adhesive and the pain in the morning after a night of the pump under my back, I'm no exception. Sometimes this device really gets on my nerves.

But it's fairly easy to tolerate a long list of annoyances when the device in question at the same time makes life so much better. The control I was able to achieve on as many as eight to ten injections a day is nothing to the control I can get with the tiny doses that a pump delivers, and its hour-to-hour variations in basal insulin delivery. When the CGM beeps from under my tunic at work to warn of a low I'm simultaneously embarrassed by the possibility of it being heard by the patient whose wisdom tooth I'm about to pull, and grateful that it has potentially prevented a dangerous situation from occurring. The latter emotion wins out every time, and every good A1c I get whilst using this technology reminds me of that.

I'm still human though. And I can be a very irritable and obstinate specimen of humanity, not least when my blood sugar is out of range or bouncing around like a rubber ball.

I've definitely been heading through a bit of a rough patch, diabetes-wise, lately. I'm seeing far too many high numbers and daily low numbers with rapid swings between them. I've been getting deeply frustrated that despite the technology and knowledge I have, I haven't been able to find either the skill or the motivation to turn things around. The messier things have got, the more I'm allowing fear to keep driving it on. I'm eating too many carbs at lunch and under-bolusing for them, fearful of lows. I'm over-correcting highs, in a rage at seeing these big numbers and thinking about the complications they may point to, and I'm over-correcting the resulting lows in a panic.

On Sunday night, it got a little too much. I'd swung from high to low and back again all weekend and my mood was touchy to say the least. I was fed up of the annoyances of the pump when it didn't seem to be helping me any to reign it all in. The final straw came as I stood up from the sofa and the pump came away from my waistband. The short piece of tubing between the pump itself and the point it was tucked in to my clothes was enough to allow the pump a nice swinging arc, straight in to an open bottle of wine we'd been about to enjoy a glass of, knocking it off balance and on to the floor.

Something inside me snapped an in a split seconds rage, I'd twisted my infusion set apart and the pump went sailing in to the waste paper bin in the corner with a resounding “fuck you” from me. It wasn't rational or sensible, but at that moment it had all got to much.

After I'd had a good cry, and Ian had told me it was okay to be mad and angry,after he, recognising my burnout, had tested my blood sugar for me (low, unsurprisingly), he also extracted the pump from the bin for me.

But I wasn't ready to be friends again that easily. It just felt like all of the hassles of wearing this device just weren't worth it anymore, that I could do almost as well without. I'm a stubborn person, and for some reason, this time I wanted to have a stab at proving the impossible.

I flounced off to bed without my pump, leaving it lonely on the dining table.

For two hours it sat there in the dark, while I got engrossed in a good book under a cosy duvet. My blood sugar climbed from it's low to 5.9 (106) and stayed there.

“Hah” I thought. “I can do this without you.”

Believing my point sufficiently proved, I reluctantly allowed Ian to reconnect me before I fell asleep.

Of course, diabetes had the last laugh, as I knew, deep down, that it would. The missing basal, that I didn't bother to replace, ensured that I climbed steadily for the next couple of hours and suffered an interrupted nights sleep.

From the moment I tossed my pump in to the trash, I knew I was being ridiculous. I knew I couldn't win. But sometimes throwing an enormous strop is the only way I know to deal with the enormity of diabetes.

I honestly felt better for it.

Britain's "Diabetes Epidemic" in the News...

The UK news has been full of figures released today by Diabetes UK stating that one person is diagnosed with diabetes every three minutes in Britain. Last year 150,000 people were diagnosed with the condition, up from 100,000 the year before.

I may be just a little bit cynical, but I can't help but think that the 50% jump in diagnosis rates, which reports acknowledge is mainly made up of people with Type 2, has a large part to owe to performance related pay for General Practitioners. GP's pay is topped up if they meet a number of different government targets. Diagnosing type 2 diabetes, and putting people on medication to control it, are things which attract reward.

Don't get me wrong, I believe an increased diagnosis rate is far preferable to having the estimated million people walking around without knowing they have diabetes, whilst elevated blood glucose levels do untold damage to their body systems. Of course diagnosing people with diabetes is a good thing,  if they are accurately  diagnosed. And I'm well aware that there are many people diagnosed with Type 2 who don't fit the profile that is classically portrayed in the media. If the people receiving treatment actually need to take tablets, or insulin, rather than receive proper individualised care and support to modify lifestyle factors that may be contributing to their health, I have no objection.

I'm sceptical for a reason. My own GP has attempted to get me taking an array of medications from ACE inhibitors to statins, simply because I have diabetes. For the record, I have no other cardiac risk factors, I do not have elevated blood pressure or microalbuminuria. Most of all, I have a cholesterol level well below the recommended safe level and stand only to suffer side effects from taking cholesterol lowering statins. Reading internet message boards and email forums, I know  that I'm far from alone in being a "healthy diabetic" put under pressure to take unnecessary medications in order for the GP to tick a box and claim their extra pay.

The irony, of course, is that Diabetes UK is using these figures not just for the admirable purpose of urging the Government to put diabetes at the top of the health agenda for 2009, but also to ensure that people diagnosed with diabetes get "the best possible care, information and support". In other words, not just being stuck on medication to tick a box!

Again, don't get me wrong. Anything which raises the profile of this often devastating condition has the potential to be a very good thing, But yet again I can't help feeling that this news will do nothing to raise profile of Type 1, and has the potential to actually damage the cause for more support and research.

As usual, we can rely on the Daily Mail to stir thing up. The Daily Mail, for those who don't know, is a UK newspaper that balances precariously in the no-man's-land of journalism. It is not a tabloid paper that supplies those who want it with the latest celebrity gossip and "human interest" stories about tragic death but does little harm to those who choose not to read it. Nor is it a broadsheet paper that may be somewhat biased, but openly so, by political affiliation but at least upholds ethical standards of reporting and attempts at balance, as well as covering "serious" political and financial news. The Daily Mail is gutter press. It switches affiliation depending upon the story and bases reporting on who it can "have a go at". The Daily Mail is legendary for creating more health scares than a hospital full of unqualified doctors. The only thing the Daily Mail truly does well is sensationalism.

So I wasn't entirely surprised when I read the Daily Mail's reporting of Diabetes UK's research. It is full of vitriolic criticism of "fat people" and clearly lays the blame for diabetes at the feet of those who have it, whilst pointing out how it will contribute to crippling the NHS. The article mentions that the majority of cases are Type 2, but no where does it even mention Type 1, yet alone make clear what the difference is.  The overwhelming message of the article is that diabetes is exclusively caused by obesity. It will do nothing to help move type 1 diabetes up the health agenda if all efforts are solely aimed at lifestyle modification and obesity reduction.

Diabetes isn't always caused by the people suffering from it. And poor control isn't just down to the patients if they haven't been given the education and resources to manage their condition. Supporting people with Type 1 to live well will reduce complications and enable people to live longer lives whilst working and contributing to society - contributing to funding of the NHS, far from crippling it.

It is tragic that so many people are being diagnosed with diabetes. But the way the media, the government and so many misinformed people respond to the emotive subject of "diabetes" is equally sad.

A Year in Review... Introducing Ian

Finding an adjective to sum up 2008 isn't easy. The first one that came to mind was "roller coaster". But all things considered, it wasn't much of a roller coaster at all, having, as it did, only one real low point. And that was followed hotly by the biggest high of the year.

They both came in February. My 16 month relationship with Rob came crashing to an abrupt end in the space of a single phone call. As with the breakup of any relationship that has ever really meant something, it was a painful time.

Two days later, I trekked up to the Castle Climbing Centre in North London where I met a guy called Ian. We were both in need of a regular climbing partner and so began a friendship that grew through regular sessions battling our way up challenging climbing routes and drinks in the pub afterwards to either celebrate or commiserate our respective successes and failures.

In the meantime, I took a proactive approach to coping with my new single status. For the first time in my adult life, circumstances came together such that I had the heath and physical ability, the time and the finances to do a lot of things that I'd previously not has an opportunity to.

I had the chance to catch up with relationships that had suffered through my frequent trips to Liverpool. As I said at the time:

"I'm living a new, different life. I've done a lot of things in the last six weeks. I've spent more nights at the pub than I should. I've gone out with friends and stayed up all all night to watch the sun rise in the morning. I've stayed out in the rain until I was soaked through to the skin, but had a good time anyway. I've had lunch with two amazing women, one in her eighties and the other in her nineties, both of whom were friends with my grandmother when they were younger than I am now. I've drunk more alcohol than I probably should on more than one occasion. I've aggressively pursued my rock climbing, pushing the grades I can climb, free of fear of not measuring up."

And I tried new things too. I'd been skiing in Italy and France in the earlier part of the year, for the first time since my catastrophic ankle injury in 2004. In March I swapped two slidy things for one and had a go at snowboarding. Ultimately I think I'm definitely a skier at heart, but it was still great fun to learn. I went powerkiting, and got pretty adept at controlling enormous sheets of silk in a fierce wind. I learned to body-fly (or indoor skydive) in a giant wind tunnel. I took dance classes again for the first time in over ten years.

In April I went speed dating with a friend for the first time and it actually turned out to be a lot of fun, and would have been even had I not "matched" with someone. We actually met up a few times and this turned out to be the catalyst that pushed me in a clear direction.

When I met Ian, it was far too soon to think about relationships and our friendship developed uncluttered by even the thought of romantic attraction. I got to simply loving spending time with him. He made me laugh. He listened to everything that I had to say, and amazed me with tales of a year spent travelling.

I don't really know where it started from, but after my speed date experience, I knew the only person I wanted to be dating was Ian.

Fortunately for me, he felt the same way.

"Date" is exactly what we did. Exhibitions (Psycho buildings a big favourite), trips to the theatre (Avenue Q the best show I've seen in a long time) and late night museum visits (Ripley's Believe or Not until almost midnight, believe it or not!)

We have a lot in common, including a love of photography. In May I finally upgraded my camera and we've spent a lot of time jointly improving our skills.

The latter half of 2008 also saw a bit of travelling.

In August Ian and I took our first trip away together and I fulfilled a long held dream to visit Marrakech, which stemmed from my arents tales of a visit there in the 1970's and was intensified when I read Esther Freud's Hideous Kinky some 14 years ago. Marrakech didn't disappoint. We shared the unmade streets in the Medina with donkey carts, dogs and throngs of people. Motorcycles weaved through the crowds, sometimes with a whole family of four perched on the back. We dived into the souks and developed our bartering skills and in the evening wandered through the maze of food stalls that spring up each evening in the Djemaa El Fna as the stall holders battled for our business. It would be wrong to say it wasn't a culture shock, but it was a fantastic weekend.

In September I took my second trip of the year to Italy with a group of twenty ranging in age from 25 to 80. We stayed in an enormous house which, due to a mix up in booking didn't have quite enough beds! It was a wonderful relaxing week with good food, good wine and great company. It also fired me up for the Italian classes I've been taking this autumn.

At the end of November Ian and I took the Eurostar to Brussels where we spent an enjoyable weekend exploring the city and the Christmas markets. We encountered a lot of people who spoke no English, but my French held up well enough to get us on the correct train and bus to Liege and back again. We drank a lot of Gluwein, and ate waffles, mussels, steak and fondue, as well as managing to buy a lot of unique Christmas gifts.

The end of the year has come around alarmingly quickly and I'm shocked to find Ian and I have been together for eight months. As well as all the fun times, he's learned all about lows and highs, pump malfunctions and what it means to live with diabetes. He knows how to check my blood sugar, and seems to know better than me when I'm low.

Over a meal on New Year's Eve as I fiddled and calculated and was bothered by both my pump and CGM I commented "It's fun this, being with a diabetic, isn't it?".

Ian shrugged his shoulders and said "It just is."

There isn't a lot more I can say to that.

So finally... Whirlwind. This year's been a whirlwind, in terms of how busy it's been. It's also been a whirlwind because this amazing guy walked in to my life.