Leaps and Bounds

Let's get one thing straight; I hate diabetes.

Most of the time I just get on with things and try not to moan about it too much, partly because if you moan too much people stop listening, and I want people to hear the truth about diabetes. It's also partly because I believe if you keep moaning, you just convince yourself of what your saying and don't have a chance to feel better about anything. So I try to save my rants for moments when it truly does get to me. But under the surface that gives off the impression that I manage it well and don't let it stop me doing what I want, there is always that grey cloud on the horizon - the one which brings a sombre mood, a feeling of defeat and a number of extra boluses (the insulin pump equivalent of an injection).

BUT - I still find something amazing about it every day. By 'it' I don't mean the actual disease, there really isn't that much you can find amazing about this disease other than realising that when you thought the disease couldn't be any more of a pain in the butt, it somehow finds a way.

What I mean by 'it', is the growing list of ways to treat it, the ways to keep complications at bay, the ways to treat those that exist and the amount of cures on the horizon. Granted, if the 'cures' were a little closer than 'on the horizon' I would be a little more enthusiastic, but 'there is a cure just down the road by the semi-detached' doesn't have quite the same ring to it does it?

That being said, even thirty years ago, diabetic patients had to use monstrous glass syringes to inject insulin with. Ones that needed to be boiled and thoroughly cleaned between sittings. Now, I wouldn't call myself lazy, but I do have a distinct aversion to washing up. I would say I'm a little allergic but Jamie would probably disagree! But in all seriousness, if I had to boil every syringe after using it, I would probably have died a long time ago through some sort of nasty infection. PLUS, I have a nasty habit of dropping/falling over/standing on (ask the cats) and losing, all manner of things. If I had to keep track of glass (or as I prefer 'easy to smash') syringes, I would probably have been forceably euthanized due to the NHS struggling under the weight of my cock-ups alone. Also, just take a look at them...

I mean come on! I think I saw something like that in that film where people pay to murder other people for fun - Hostel was it? Eurgh!

Luckily, in about the 1970s, the first US patent for plastic disposable syringes arrived. I haven't managed to find out at this point when they came to the UK, but seeing as we are about 10 years behind them in our treatment options, I would hazard a guess at somewhere in the 80s. Now these may not look much nicer...

But compared to the glass syringes they were light, small and thanks to not having to boil them, Anna is still alive (can I get a 'yay!). Be honest, all you pen and pump users who have had the condition over 10 years, how weird is it seeing this! I thought I had done a good job blocking these out of my mind, but they sort of feel familiar. Thanks for keeping me alive you little orange and white implements of torture!

Next came the 'pens' with disposable insulin filled cartridges. Granted, mine were never quite as 'sexy' looking as those shown below, but oh my what a change!

Now at the time these were truly the COOLEST things in the world. When sitting down to eat, there were no longer stares from people thinking you were injecting heroin at the table (yeah, cos every heroin addict can afford dinner in a restaurant!). Granted, you still had those who stared at you because they felt you would be making their lives better if you injected in the scuzzy toilet (it ain't ever gonna happen lady with the purple rinse, so get over it!), but at least the heroin years were over. Plus not going on holiday with 147 hypodermic needles was kinda cool. I can't tell you how many Spanish cleaners gave me the filthiest looks when they came out of our rooms on holiday. I bet they are telling this story somewhere else but have quite a different take on what kind of scumbags we were!

Now, the world of diabetes has been truly revolutionised by the introduction of the insulin pump. Granted, any Americans reading this will think it's old news (they are already about 15 years ahead of the backward UK when it comes to new treatments), but for us pale skinned rain loving Brits, the insulin pump has landed. Dun dun dahhhhhhhh...

Now I do happen to be a fan of this particular one, because it happens to be the very one that I will be sporting for the next 3 and a half years. And may I add what a fine device it is. I now no longer have to inject, I have a completely tailored (I prefer customized) insulin delivery plan, and most of all, I can have a giant curry and no longer feel like I just hit myself in the face with a brick afterwards. Hoorah!

But this isn't the end of it. Not by a long shot. The one drawback for me with the insulin pump is the tubing. I have no problem wearing the pump, trusting it or relying on it, but I have got a habit of tugging on the tubing (please see earlier comment RE clumsiness - said clumsiness applies here too). It's not generally particularly painful, certainly not for me, but sometime it is a pain in the backside (or arm or leg or wherever my cannula site happens to be).

So the next thing on the horizon (when the UK hurries up), is a tubing free, wirelessly enabled pump (I bet Apple are gutted they didn't think of that!)

There is currently one on the market, the Omnipod. Don't get too excited you pasty face rain sodden Brits, it's not 'here' yet, but it is on the horizon (that damned word again!).

And to rival it by being smaller in size and detachable from the body, is the Solo pump.

This one isn't even available in the US at the moment, but soon enough hopefully this wireless, tubeless brilliant white piece of heaven will make it's way to our misty shores and will have a welcome committee of about 500,000, with yours truly at the very front waiting to trample anyone who gets in my way. I know you are all my diabetic community brothers and sisters and I love you all dearly, but there are Indian take-aways and Lindor chocolate at stake here (dribble, dribble)

There are also plans for an 'artificial pancreas', which will combine the technology of insulin pumps and CGM (continuous glucose monitoring) and will enable diabetics all over the world to take that big step closer to joining the 'normal' gang, as the artificial pancreas will be able to monitor glucose levels and respond by either administering insulin (if glucose levels are too high) or turn off the pump (if glucose levels are too low) . I have no doubt that this is still years in the future, but at least it is there. The ingenious invention in some bright sparks mind. I thank that person, because every step closer we get the more hope I have.

My point of this article I suppose, is that although we are still along way from perfect treatments or dare I say it, a cure, we without doubt must have one of the largest amounts of medical treatment options available. There are diseases out there which people still have no idea how to treat. Even with multiple sclerosis there is no known way of treating the actual disease, just the symptoms after they happen. They take steroids after each relapse in the hope it will absolve some of the damage done during the last episode. Whereas diabetes, even though still treating the symptoms, has a growing number of ways to try and stop those highs and lows before the even happen. I'm not saying we have it any better or worse than anyone else, but every day that I see there is a new treatment available out there, is a day I feel safe in the knowledge that as far as treatment is concerned, this really is the best we have ever had it. It may not be perfect, but it's a damned sight better than over sized glass torture devices and a guaranteed trip to an early grave.

I just can't wait for the day the world press announces the cure has arrived.

There will be tears in my eyes when that day arrives.

Forget diabetes - get some 'you' time.

As some of you may know, Jamie (my partner and long-suffering diabetes 'watchman' ) got engaged last year and have been planning our nuptials for a while. This weekend we decided to visit the venue where we were hoping to hold our ceremony and have all of our friends and family stay with us to enjoy our big day.

We packed up our stuff on Friday and bid the kids (cats) farewell. We hit the highway excited and keen to get on the move and headed west; Cornwall west.

Normally when I have a trip planned, diabetes is the number one priority. It is impossible for it not to be really - if I don't look after myself, things go wrong. Very wrong. I usually do at least 50% more tests, usually err on the side of caution and let myself run a little higher and usually bulk buy food like Armageddon is nigh! Remember how crazy everyone went when they thought the year 2000 meant every electrical item would fail meaning chaos would strike? Well you know how everyone started storing food underneath beds and in secret cupboards? Well that's how my bags look when I go away. Like the bag of a mad woman who is going to be living on a deserted island somewhere.

This weekend however, there was something else distracting me; The wedding. I did carry out the usual bulk-packing of medical equipment, making sure I had enough equipment to negotiate some sort of tropical disaster, and made sure I had packets of sugar stuffed in pockets and bags, but one thing was different about this weekend. It was almost as if once I hit the road I forgot I was diabetic.

It felt good.

Really good.

I must have only done about 3 or 4 blood tests all weekend! Now I'm not saying that was the 'best' decision in the world, and I certainly wouldn't go telling people to do the same. BUT, the fact that my trusty pump just carried on doing it's thing, making little clicking sounds now and then and delivering the insulin as I trust it to, meant I was able to just 'get on with things' and enjoy my weekend.

I can't be sure, but I didn't feel like at any point I went overly high or worryingly low. This can only be a guess as my blood tests would have confirmed it. But the freedom I have found with the pump is such a breath of fresh air.

Of course I didn't really feel like I wasn't diabetic, and of course I didn't ignore it all together. I did have one low on the evening we arrived after misjudging what I needed to bolus for dinner, but generally I felt just great!

That just never used to happen to me on injections. Injections meant highs lows, having to eat at certain times, waking up to inject even if I wanted a lie in and having to religiously weigh and measure every damn thing I eat.

This weekend I had a chance to just let the pump do what it is paid to do. Keep me alive.

And it did a damn fine job!

How the iPhone almost killed me.

OK, OK, I may be exaggerating just a touch, but in a round about 'what if' way it did.

I have been eagerly awaiting the arrival of my shiny new iPhone for days. As of yet, I haven't really bought into the whole iPhone crowd thing, primarily because I don't feel the need to belong to the messy-haired, NME reading, skinny jean-wearing, must-have-an-iPhone-or-you're-not-'cool' crowd. But I do have a confession; I can't help it, but I do love the feeling of slicing the sellotape away from a shiny new box containing a new phone. One which I invariably won't be able to use without being all fingers and thumbs for days (why does every mobile phone have a different space bar or punctuation button?), one which I will probably drop in a puddle days after saying I would be more careful with this one, and one which I will no doubt have to spend hours transferring numbers to, because as much as I love technology, it always gets the better of me. But, just as you get a new pair of shoes and can't stop looking at them, or get a new car and can't stop finding reasons to drive to the shop (it's five minutes away but it's dark outside - it's the safer thing to do, right?), I just have a thing about new phones.

Today at work, my insulin pump was running low on insulin (the clue is in the name - it's kind of the key feature!). I had done the rough calculations in my head to make sure I had enough to get me through the day: In other words, 1.5 units per hour x eight hours = 12 units, plus the six units I use for lunch = 18. I had 19 units left so thought I would be safe. One problem, being the human (and occasional scatter-brain) that I am, I had forgotten to calculate my morning dose for my breakfast (4.5 units). That means I was now 3 hours short of insulin. Hmmm, I know that I can take an hour off the pump safely, so I can get through until 4.30pm without worrying too much. I agreed with the wife (he's a good wife) that we would leave work at 4pm today (thank the Lord for flexi time!) so that I could top up the reservoir in the pump and harmony would be restored.

Turns out, I am more excited about getting my new iPhone than I am in making sure I have enough insulin. You know, the 'stuff' which keeps me alive and stops me going into a coma (!). I got home with all the best intentions. But not intentions of filling my pump, Nooooooo. Instead, I had intentions of getting acquainted with my lovely shiny new friend - the stuff of dreams - my iPhone.

Unfortunately the phone of dreams hadn't arrived. I have no doubt that any normal non-obsessed person would probably have given up there, but I am no mere normal person. I, managed to spend about 2 hours staring at the tracker screen on the DHL website (useless, by the way) watching it say "out for delivery". After having some dinner and trying to accept (and failing at it) that my shiny new companion wasn't arriving today, I went to meet my friend for a drink. We strolled along Langstone harbour for about 45 minutes, chatting about anything and everything under the sun, enjoying the summer evening (aren't they bliss?).

We strolled back and sat down for a drink. After about another half an hour, my pump made the most disturbing sound.

BEEP, BEEP, BEEP, BEEP, BEEP.

"What the hell?!"

"SHIT!" (excuse la French).

"I haven't filled the reservoir! I have to go."

It was 9.30 pm at this point. I was currently in my sixth hour of no insulin, having eaten 85 grams of carbohydrate for dinner and injected for it (or so I thought).


I raced home with Lauren in the car behind - following me to make sure I was OK (she's a good lass). I raced in doors, grabbed my testing kit (weirdly enough I never leave home without the damn thing - except for today when I forgot it) and tested my levels.

9.9mmol.

I don't know how, but after 6 hours of no insulin and having eaten a dinner which should have warranted 8.5 units of insulin (which I never received), I managed to be at a reasonably good level!

I have set the pump to release 150% the amount of insulin I normally need and have tested three times since getting home, but nevertheless have some how managed to avoid a potential nightmare! In fact, I may need to eat something before bed because my levels are dropping!

For all you diabetics out there I have one message:

IPHONES + PUMP REFILL DAY = DISASTER.

I still can't wait to open that box though. Fingers and thumbs at the ready!

Do we dare to dream?

Since as far back as I can remember there has been a promise in the air. It is a promise which could quite literally save the lives of two hundred and eighty-five million people. It's hard to imagine how many people that really is. Look at it again:

285,000,000.

That is almost 5 times the amount of people in the UK. Imagine all your friends, family, loved ones, work colleagues, celebrities you like and those you don't, political leaders and favourite authors. Imagine all of those people lived with a disease that dictated many of the decisions they make every day. Imagine those people spent every day piercing their fingers, doing injections, recording results, weighing food and calculating insulin doses. Imagine if most of them developed complications. Complications such as kidney failure, ulcerated feet leading to gangrene, blindness, heart failure or death.

Ever since I was diagnosed - or at least since I can remember - 'we' have been promised that there is a cure on the way. At first it was pancreas transplants, this fantastic new concept or replacing the damage pancreas with a shiny new(ish) fully functional one. At one point in time this was the 'cure' to diabetes. There was just one draw back; rejection. The problem with a transplant is that when the organ is replaced, the human body - amazing as it is - is very likely to reject anything you put in it which wasn't intended to be there. Granted, you might think I would prefer anti-rejection drugs over shots, calculations, complications and all the other pain in the backside things that come along with this disease, but the truth is anti-rejection drugs come with a lengthy list of health warnings. For starters, you have to find the right concoction. I looked up just a few of the anti-rejection drugs and found this lovely list of side effects:

Tremors
High Blood Pressure
Abdominal Pain
Liver toxicity
Kidney toxicity
Significant hair growth (I'm thinking women with beards)
Overgrowth of gum tissue (Yuk! Right?!)

Many of these will have to be taken several times a day. And the effects of how they make you feel and the effects they have on your body are huge.

OK, so you've reached the decision to go for it, you have sat in a numbered queue on a waiting list and finally found a pancreas donor. You have had the procedure and have gone through the above symptoms as a way of getting rid of the diabetes. The fact is there is a real chance that your new organ STILL won't accept.

Believe it or not the pancreas actually does a lot more than just produce insulin. It also produces digestive juices which your body needs. So if the pancreas rejects, which is a very real possibility, you then effectively become diabetic (again) and now have to take a bunch of pancreatic enzyme supplements so you don't struggle to digest anything you eat (watch the carb content, you're diabetic again now remember?).

OK, I think we all catch my drift here - as wonderful as it sounded initially, there are health warnings screaming at you from a mile off. I'm not convinced that putting my body through all of that will really make me live any longer. In fact I am fairly sure that my body would give up after 24 years of diabetes and then countless more on drugs and supplements, or with diabetes AND drugs supplements.

Right, next the cell research phase arrived. Stem cell research has dominated the headlines in the last few years and has given many people with diseases (not just diabetes) a ray of hope. Embryonic stem cells have the unique ability to become any other kind of cell, from skin cells to brain cells. Unlike adult stem cells which are hard to locate and identify, embryonic stem cells have the potential to also become insulin-producing cells; those which were destroyed in people with type one diabetes. The idea of stem cells is that you will be able to 'top up' or replace cells which are no longer able to produce insulin.

Pancreatic islet cells on the other hand are taken from a corpse, 'cleaned' and injected into the Liver. They too should begin to produce insulin and may be the answer to diabetes.

However, as with a full pancreas transplant, this kind of transplant still requires a concoction of anti-rejection drugs, which can still leave you open to serious illnesses and diseases. Added to this, the procedure itself is very invasive.

I think you can see that I'm not a scientist and my explanations are brief and broad. The truth is, all the scientific stuff can baffle me and I live with diabetes, I don't study it for a living. But I never intended this blog to be about science, or even about fact. It was always supposed to be about experience. And my experience was that I went to a conference a couple of years back and asked the question, "When will there be a cure?". The specialist proceeded to tell us that in America they had already tried this on 6 willing participants. With one, the jury was still out but it seemed to be working. On another, the procedure hadn't worked at all. With two, the procedure worked but ceased to work after a few months. There was one story I can't remember, but the one that stuck in my mind the most was the last, the final participant died.

Granted, the developments since then have been phenomenal and as far as I know people aren't dying left right and centre, but that story has stuck with me. Out of six people who thought they'd been handed a winning lottery ticket, one ended up without a life.

The jury is still out on this for me. Although stem cell and pancreatic islet cell transplantation apparently goes on all the time, and indeed you can go abroad and pay to have the procedure yourself, there are warnings all over the place about having it done overseas where research and clinical tests are not as rigorous as here in the UK.

In total it costs the NHS £9 Billion per year to treat diabetes, which is ten per cent of the NHS budget. If this procedure was fool proof or at least had a great chance that the host of the disease was prepared to take a risk for, would it not mean the NHS would be saving money left right and centre within the space of a few years? Imagine the good that money could do; better cancer treatments, better maternity care, newer hospitals, better pay for NHS staff, less disease (stem cell research is also key for other highly expensive to treat diseases). I would have thought (again, just my opinion) that even if it cost £20,000 per person to carry out the procedure, they would be very keen to spend that on all those who have worse control, use up more resources (sorry to sound cold, but it is a reality) and are more likely to develop the condition, and then work there way down the list of those needed the cure. I don't know that for a fact, but it seems like common sense to me.

Anyway...

The latest in the way of promises comes from a report I read on the Discovery News channel. Apparently scientists have been able to cultivate tissue that has grown into a new pancreas in pigs. This was then injected with the stem cells which in turned began to produce enough insulin! I know, amazing huh?!

I was amazed when I read this and for the first time in a while felt a little glimmer of hope spark inside me. But I had to step back and remind myself that it can take years to get medicines and procedures through the clinical trial stages. I was once told the longest a drug had taken from testing to the chemist shelves was 18 years, with new drugs taking anything between 10 and 15 years to get through all the clinical stages. As wonderful as it is that new treatments are always coming out of the woodwork, in the last 15 years I certainly haven't seen or heard much other than 'this is currently undergoing rigorous testing'.

As much as I would love to be able to get my hopes up about this, I have to constantly remind myself - as a person whose life could quite literally be saved by this - to remember that if any highly regarded and promising new procedures fail any of the 3 testing stages, they are then back to the drawing board. Some say (and I would agree) that animal testing is now almost obsolete due to the fact that even with apes one drug can kill them but not harm us and vice versa, but the fact remains at the moment this is the type of trial that these new promises have to make it through. And if anything goes wrong, it's curtains.

I truly hope and will keep everything crossed that this is at least in one stage of testing, but the article sounded a little as though this was still in the experimental stages. It was just a good enough piece of news to reach the headlines of one publication.

I guess we'll find out when I update this post.

I just hope there are still laptops in 18 years....

Brittle Diabetes: Not the final answer

Four years ago I visited my doctor because I couldn't take it anymore. I was tired, hungry, emotional and bordering on depressed - again. I was going to the gym, had lost weight and was incredibly healthy, by any standards. I was trying to eat in a way my blasted body might agree with and could say with one hundred per cent certainty I was giving it 'my all'.

And yet this still wasn't enough for my alter ego - diabetes. Every single day there were blood sugar levels from 2s to 32s (40s to 500s). There was deep hunger, shaking, tiredness, grogginess and distress. When your meter starts to tell you that you are no longer on the number scale anymore, but instead has found so much sugar in your blood that it now simply reads 'Hi', it could make even the most thick-skinned person break down.

I told my doctor this, in a flood of tears and in a cry for help.

I should probably explain here that my doctor at the time was someone who didn't beat around the bush. The last time I had seen him he had disapprovingly rolled his eyes as I told him I hardly ever got my blood sugars under 8mmol. He had told me that, 'I knew what would happen,' if I didn't work harder.

I did know. That's what was hurting me so badly, couldn’t he see?

But this time things were different; I was exercising, dieting, monitoring, analysing, weighing, recording, obsessing. Yet still I was swinging from 'eurgh' to 'uh-oh', on a daily basis. I could not have done anything more, and yet when I realised I was going to be seen by the same doctor, that feeling in the pit of my stomach returned. The five letter word all diabetics become all too well acquainted with. Guilt.

 

'It's my fault, I'm still not doing enough, I should be at the gym more, weighing things better, shouldn't drink, shouldn't smoke, shouldn't affect my routine, don't get too upset, don't get hot.'

There aren't enough expletives to describe how I felt that day. That year. That decade.

But to my disbelief my doctor told me that he could see how much I was doing. He congratulated me on losing weight, commended me on doing so many tests and welcomed me for asking for help.

"I can see how much you are doing, Anna, and there is a small group of diabetics who are described as 'brittle' diabetics. That means they are very sensitive to any kind of change. The kind of change you can't really cater for. I believe from seeing you today that you fall into this category."

 

Two things happened that day.

 

Firstly, I finally breathed a sigh of relief. Relief that at long last I had some sort of explanation as to why my sugars swung from 2 - 30 (20s-500s) within a matter of hours.  Why exercise meant one thing one day and something entirely different the next, and why no matter how hard I tried, I seemed to get it wrong. But I wasn't wrong. It wasn't my fault.

 

Secondly, I sort of - for want of a better explanation - 'gave up'. I didn't stop injecting or worrying about what could happen if I carried on like this. Believe me I wish I could have. But I did resign myself to the fact that this was just how it was going to be. I was going to have to face this battle every day and if making extra effort to control it made no difference, why bother at all? Why put myself through it?

 

I 'gave up' for about 4 years.  Dealing with each high and low as it happened, I fought my way through each day. Crying over one test result and smiling over others. The swings and roundabouts went on like this until August 2009, when I finally decided I'd had enough of the games. The swings and roundabouts did nothing but cause my head to spin and leave me dizzy. I decided the pump was the next thing to try. It was my only option left and my chance at not losing my sanity.

Since that decision my world has become almost unrecognizable. Suddenly effort paid off and 'stable' was no longer just a place you keep a horse, it was something I could expect from my diabetes. My sick time at work declined, my retinopathy was stopped dead in its tracks. I even got the feeling back in the left side of my foot.

I was also no longer 'brittle'. I am no longer brittle.

I make a point of commenting each time I see someone talk about brittle diabetes and say they can’t help it; that it’s just the way they are.  Because I no longer believe brittle diabetes is something you have to put up with. It is NOT an explanation. It is NOT a get out clause.

But I still remember the desperation. I still remember the pain.

I know that at the doctor’s that day all those years ago, I needed a kind word. I needed to hear that I wasn't a failure. I needed an explanation. But the effect that explanation could have had, may have led things in a very different direction for me. I could have given up all together. I could have stopped taking my insulin, I could have carried on smoking in my anger at the world and I could have stopped looking for answers.

I could have lost it all by now.

Brittle diabetes is a very real problem but only because it is handed out as a get-out clause that people are told they have no control over.  One that people don’t realise is something they may be able to address. I hope others will realise this before the specialist tells them it’s too late. I hope it comes before they lose the ability to walk, see or live. Their ability to thrive.

 

I live in hope.