Shoot Up or Put Up

Generic diabetes-related pictorial filler

If, for some weird, inexplicable and entirely hypothetical reason you were given a choice of which chronic illness you had to be inflicted with, diabetes might actually be somewhere at the top of your list.

None of us wanted to become pancreatically-challenged and I daresay if a cure arrived tomorrow (it won’t, by the way (and even if it did, it wouldn’t be available on the NHS)) we would all jump at the chance of finally being shot of diabetes once and for all. But, while it’s undoubtedly a pain, it’s a lot better than other, inferior, chronic illnesses because:

•   It’s under our control. Very generally speaking, the better we look after ourselves the better our quality of life and the fewer bad consequences we’ll suffer when we’re ancient. We do actually have a lot of control over our chronic illness. It’s not as if we expect to find ourselves writhing and foaming on the floor at utterly random times, or regaining consciousness in a seedy motel room 300 miles from home with no idea how we got there, á la Fight Club.

•    Short term problems are easy to treat. Obviously extreme highs and lows can lead to a spell in hospital but these are very rare. If our blood glucose goes too high we can shove in more insulin. If our blood glucose goes too low we simply guzzle down a pile of cakes, fruit pastilles or other delicious, sugary delicacies. Minor problems can be quickly and easily treated ourselves.

•   We only need occasional hospital visits. Everyone, without exception, hates hospitals. But I only have to go up to my local hospital for a thorough check up every 7 months and it takes about an hour or so. Frequent visits to the doctor and long, painful treatments are not required.

•   It probably won’t kill us. With well managed diabetes we can expect to live out our three score years and ten. Diabetics don’t tend to die young. I don’t know about you but I think this is actually quite a Good Thing.

•    It’s actually quite healthy. Aside from the whole pancreas-not-working thing, diabetes is pretty good for you as we’re encouraged to have a healthy diet and exercise a reasonable amount. The fact that life is easier if we do these things is quite a good incentive for actually doing them.

•   There’s not much blood. We might get a few bruises and our finger tips might be ravaged, but diabetes involves seeing only tiny amounts of blood for testing, etc. – and most of our blood stays within us. This is definitely a Good Thing. Try eating lunch and reading blogs about haemophilia (with lots of photos, of course) and you’ll know what I mean. We’re lucky!

•    It’s inconspicuous. Unless you tell them most people will not know you are diabetic as there are no outward signs you have it. This allows us to be as open, or as private, as we like about our diabetes. Some people like to only tell their partners or a few close friends that they’re pancreatically-challenged, while others delight in injecting in full view in crowded nightclubs. So at least we have the choice how we deal with it.

So there you have it. Diabetes might be a complete drag at times, but compared to other chronic illnesses it’s a walk in the park. Thanks my non-working pancreas chum!

I’m lucky in that I get to talk to quite a few pancreatically challenged people, both in the real world and online. I like to hear their views. There are a few things I seem to disagree with a few people on though and I’m sorry, but they’re things I’m not willing to apologise for.

• I can’t get excited about a cure. Many people believe I should have my insulin withheld for a week to torture me for this abhorrent view. I’ve had diabetes since I was 4. If I’d have spent all that time wishing and waiting for a cure I’d have had a pretty dull life. It’s a great marketing ploy – it’s so much easier to raise funds for research into a cure rather than research into a project to examine the best ways of helping teenagers live with their diabetes. But ultimately, it’s not something I waste much time thinking about.

• I will not feel guilty about costing the NHS money. I pay my taxes, I did nothing to bring this on myself. I don’t look at people with asthma, eplilespy, multiple sclerosis or cystic fibrosis and think “they’re not worth the money it costs to keep them alive” so why should I think it about myself.

• I will not apologise for having an“expensive” pump and CGMS. The amount of times I get told – by a mixture of healthcare professionals and the pancreatically challenged  “pumps are very expensive”, “they’re not suitable for everyone”, “you’re very lucky to have one” is to be frank, a little tiring. Let me take those one by one.

• “Pumps are very expensive” – compared to what? Compared to a packet of biscuits they cost a fortune. In comparison to kidney dialysis they’re an absolute bargain. Compared to the cost of providing a blind amputee with the support they need to live, they’re a drop in the ocean.

• “They’re not suitable for everyone” – I agree. At which point did I suggest that the world and his wife needed a pump? I did the research and decided it was the right route for me, that’s not the same as forcing the entire country onto insulin pumps. Research by John Pickup* says about 20-25% of people on insulin would benefit from a pump, so no one is suggesting they’re for everyone. I am keen though that everyone who’s done the research, assessed the options and decided that a pump would be good for them is given the chance to use one.

• “You’re very lucky to have one” – yes, I am. And if I’d made no effort to educate myself about how to use it, or I’d got it and left it on a shelf gathering dust I should whip myself daily with a paralysed porcupine as a punishment for wasting valuable resources. As it is, I’m using it to give me good diabetes control and great quality of life. What more do you want?

So, there’s my list of things I’m really not willing to apologise for. Sorry

* Pickup JC. Are insulin pumps underutilised in type 1 diabetes? Yes. Diabetes Care 2006; 29: 1449-52

What I turn into when someone starts saying I'm unhygenic

By Samantha

Something that really bugs me is how rude people can be sometimes. It really annoys me, whether it’s someone being rude to you in the street by stepping on your feet and not saying sorry or if its someone giving you bad customer service. But what really gets on my goat is when people are rude about something they have no idea about, when they’re rude about the diabetes.

It’s happened before. I’m sure it’s happened to all of us. And in most cases it’s probably just ignorance. And after being slightly offended in those cases, I can usually get over it and move on. But sometimes there are those individuals who I am sure do it deliberately, who like to sit there and make you feel uncomfortable. And they obviously feel amazing knowing that they’ve made you feel really, really small.

Lunchtime rolls around, and I’m sat at the table surrounded by piles of permatrace whilst looking at the carbohydrate values on my shop-brought sandwich (no bread in the house…mouldy. Yum) before pulling out my insulin pen and dialling up the amount of insulin needed. A few chairs over from me, one of the builders coughs loudly. And when I ignore him he coughs even louder until he obviously gets so fed up of coughing that he bangs on the table.

“Can you not do that in here? It’s unhygienic!”

I can’t believe my ears. I’m looking at this guy and I notice the huge grin that’s plastered all over his face, as if he’s enjoying the disbelief that in turn has plastered itself all over my face. I’m sat there, my sandwich open in front of me, my insulin pen held at the ready but I can’t do anything because I just cannot believe what I’m hearing.

“Excuse me?” I manage to stutter the words, aware of everyone else in the room looking at me and this idiot.

The grin doesn’t move from his face, “It’s unhygienic. I don’t want to have to eat my dinner in the same room where you inject yourself with a dirty needle. I might get infected or something”

I begin to wonder where on earth this man has come from. Did he not go to school? Does he think I’m injecting some form of class A drugs? I glance at my colleagues who are also staring at this guy, who by the way was new to the site that morning, in complete shock and amazement.

“What do you want me to do then?” the words are spat; I’m starting to get really angry now. How can anyone think that a diabetic could infect them? I’m not infectious and I just changed the needle!

“Go into the toilets or something. Just get your dirty needles out of my face”

I flip. Surely it’s expected right? Any other diabetic in this situation would do the same. I just can’t help myself. I can’t sit there and let myself be practically called a drug user. I start shouting at the guy, ranting at him, asking him how he could be so bloody stupid. I tell him more than firmly that injecting in a portaloo is so unhygienic I would probably catch something and die (my words exactly, thank you angry rage), or would he rather I don’t inject and end up in a diabetic coma in the middle of the building site? And I am really flying off the handle, telling this guy he really needs to stop being so ignorant and learn that just because I’m injecting, it doesn’t mean I’m using class A’s or anything, and that I’m certainly not using dirty needles.

And in the end, this guy gets all uppity though knows I’m right and turns back to his disgustingly muddy lunch box. And me being my nasty horrible vengeful self decide to deliberately do my injection facing him, and watching him with the biggest grin on my face ever. It was rather rewarding to see this guy grimace into his cup of coffee.

Not that I’m psychotic or anything, but I’m sorry, if someone can really be that rude and ignorant then I will go out of my way to make sure they know how disgusted I am by their sheer presence. Take for instance the following morning. As we all know, this country now has the smoking ban, and public places, such as site huts on an archaeological/building site all have signs over them saying DO NOT SMOKE. This guy decided to ignore that. Until I walked in coughing my guts up.

“ISN’T IT AGAINST THE LAW TO SMOKE INSIDE NOW?” I yell across the site to my supervisor, “THOUGHT SO!” I turn to my friend the Muppet, “Didn’t you know that? Not only are you invading people’s personal bubble with your poisonous smoke, but it’s really unhygienic. I don’t want to eat my sandwiches in the same room as you breathing out arsenic thank you very much”

The look on his face was priceless. Normally I’m not one for vendettas, but this is personal. Luckily I haven’t had any more comments off him, but it really makes me wonder how ignorant people can be. How many more of us have had to put up with stuff like this? I really hope it’s few and far between because it gets me so angry, and I will personally come down and reign my vengeance on anyone who dares be like this to any other diabetic. I’m serious kids; drop me an email if it’s happened to you.

Not a psycho indeed. That is, until this happens. Then I start mutating and turning green……

—————

Samantha is Type One and regularly blogs at http://www.talkingbloodglucose.com/

The Portaloo. My new best friend

By Samantha

So on Thursday of last week, after dragging myself out of bed at 5.30 in the am and chilling out with a nice few (four!) coffees to get myself ready for the day, I inadvertently found myself rushing like a lunatic to get everything ready and get my backside out of the door at 7.15.

Now of course, usually I’m alright at doing this and if I forget anything usually realise within moments of getting out of the door. Except on this particular Thursday, I was almost twenty minutes down the road when I realised that I had forgotten a few very important things.

First of all, the pills I take for my so called foot issues and then I realised with horror as I was nearing work that I had forgotten to put a new pot of test strips into my kit bag. I honestly wanted to slap myself across the face and yell obscenities at myself for doing so, but of course, wandering down the road in the middle of Southampton muttering to yourself isn’t exactly going to go down well is it? And I didn’t particularly fancy being carted off in a white van.

So instead I phone my other half and moan down the phone at him about how stupid I am and end up bursting into tears. It’s a scary thought, being at work without test strips or the pills that mean my feet will actually function without shooting pains. But I guess I had to deal with it. I was too far away to walk home as that would have meant being late for work, so I told myself I’d get on with it.

And I really wish I had gone home and gotten these supplies.

Up until lunch, things were relatively fine. I had enough test strips to see me through till lunch but of course, me being me I was wandering around this busy, hellish archaeological/building site having a right mooey all day. And in the end I got so fed up I went to the shop and brought myself the biggest chocolate bar I could find for my lunch. Except, lunch was my last test strip. And I was getting really concerned that I hadn’t taken this tablet too, searching frantically in my bag for anything resembling a strong painkiller. Thankfully I had something with me, and by lunchtime I needed it because I was seriously feeling the cold (thank you poor circulation) and nasty shooting pains in my feet matched up with numb toes (thank you transient peripheral neuropathy…not!).

And then, I think the hyper started. The thirst kicked in and I kept running backwards and forwards to the horrible plastic portaloo. Except I couldn’t test my blood because I had run out of test strips. Cue panic. And by this stage I had been sent to the office to do paperwork, so instead of sitting there doing ‘very important work’, I was pacing backwards and forwards trying to work out a solution to the tiny little problem in front of me.

It’s worth noting too, that this ‘neuropathy’ really sinks its teeth in when the bloods are high. And even if it looks amusing when I’m hopping around yelling obscenities, it’s really not.

Forgetting stuff. It’s something I do a lot. It’s assumed everything is always where it should be when I run out of the door, and when it’s not it feels as if that carefully built word of diabetes is slowly starting to crumble. And it’s even worse when you get out and realise that you should have changed your insulin, because now you’ve run out. But let’s be honest, I’m sure we’ve all done it and all felt like muppets when we realise. And spending the day hungry due to being forgetful isn’t very nice. I guess it happens though, we all do it.

It just makes you feel really stupid when things happen that could be avoided. And playing a guessing game with the blood sugars is just silly. I had no idea what I was running at and spent most of the afternoon feeling horrific, yet I could have been running low and have no idea about it. So one thing’s for sure, I certainly won’t be leaving the house without this stuff again in the near future. Yet saying that, what’s the betting that come next week, something else will be forgotten. Although saying that, I walked out of the house without my trowel this morning – my archaeology soul right there…and also my lunch. But that’s a different story for a different day!

—————

Samantha is Type One and regularly blogs at http://www.talkingbloodglucose.com/

Stock footage of glucogen injection - too fatigued to find a better picture...

Every once in while, each member of the pancreatically challenged hoard comes up against diabetes fatigue. This manifests itself through the victim running themselves down into a slough of despond, shaking their fist at the heavens and generally cursing their wonky pancreas. I’ve been suffering for diabetes fatigue recently and it’s not entirely fun.

I suppose the thing that gets me down isn’t really the fact that there is unlikely to be a cure in our lifetimes (unless you’re an immortal member of the clan MacLeod – but then I suppose fictional immortals don’t tend to have problems with their internal organs. Or do they? If you go by Jonathan Swift’s version of immortality in Gulliver’s Travels then those immortals tend of have terrible problems – probably with Type Two more than Type One, given their great age. But I digress somewhat).

No, it’s not the lack of cure thing that gets me down; it’s the sheer downright tedium of diabetes. You have to admit that constantly checking your blood glucose, injecting or pumping, keeping a vague eye on what you eat, calculating how much insulin to put in after going on a bike ride, explaining to taxi drivers what Type One is, and on and on and on is extremely and brain-numbingly boring.

I wonder whether it would be different if the symptoms were more varied? For example it might be less dull if a lack of sugar gave diabetics a rather pleasing green – mottled with purple – tinge to their skin rather than just boring old sweating and the shakes. Too much sugar could lead to any number of random symptoms – the ability to briefly hover, the power to crush girders or the superhuman skill to change energy supplier in ten minutes flat. If these symptoms were utterly random, as Forest Gump says “life would be like a box of chocolates”, which would be far more entertaining than the boring old fact that said box of chocolates requires 16 units of humalog to balance the carb intake.

Sadly, though unless we get some very cool scientific breakthroughs in the next year or so, we’re not going to be able to vary our symptoms when we screw things up. So we’re stuck with the terrible tedium of diabetes. Booooooo!

Ambulances queuing up to not treat diabetics

Regular commentator and blogger extraordinaire Mark drew my attention to a recent article on the BBC web site in which it was reported an ambulance man in sunny Liverpool decided that a diabetic woman who collapsed on a bus with a hypo was in fact utterly “drunk” and refused to treat her.

Happily the moronic, cretinous ambulance man in question resigned before he was fired and has since been struck off the register of health professionals. According to the BBC the industrial tribunal ruled that this imbecilic, dozy, twit-trained eejit failed to check the blood sugar level of the woman and then compounded his error by lying to his control room, claiming she was refusing treatment.

The report reminded me of the story a few years ago in which a diabetic commuter on a bus in Leeds was shot by police with a Taser gun. Twice.  The subnormal, dopey, doltish, dense underdeveloped brains of the policemen in question thought that the man posed a security threat. Admittedly, the poor man was sweating profusely and clutching a large rucksack not long after the London bombings.

Both you and I know that hypos are not the most pleasant things, but to have that misery compounded by a recalcitrant ambulance man or being shot with a bloody Taser of all things is hardly helpful.

While fortunately, such episodes of subnormal, underdeveloped, brainless, unthinking idiocy are rare it does demonstrate even those who should know better do clearly hate diabetics. Bastards!

Anyway, in other news utterly unrelated to diabetes, I’ve discovered wonderour Intermaweb music service Spotify and have been listening to Johann Johannson while writing articles this evening. His composition The Rocket Builder (Io Pan!) is particularly great! Just thought you might be interested.

For years I’ve had a nasty habit that scares and un-nerves my closest relatives. At first they were completely baffled by it, then they came to understand it and have now developed some coping strategies.

I coped fine with my diabetes at university. My housemates were great about not eating my emergency food, they picked up the pieces on the odd occassion there was an alcohol/food/insulin/sleep miscalculation and I didn’t really have any serious problems. I just got on with it.

The problems started in the holidays. Everytime I came home from uni I’d go hypo. Not just a bit low. Proper, need help hypo. I pondered insulin doses, changes in activity levels, sleeping patterns, diet etc but nothing really seemed to explain it. Then the parents spotted the problem. I wasn’t reacting to feeling low. I’d just ignore it. When I look back, I remember sitting in my parents house numerous times thinking “I feel low” but not doing anything about it. I was just waiting for someone else to deal with it.

And even now, if I’m at home with the husband my CGMS alarm always wakes him before me. I can ignore it for ages. Yet if I’m alone, I hear the alarm pretty much as soon as it goes off.

When I’m alone my self-preservation instinct is strong. I react to what my diabetes is telling me and ignoring a hypo wouldn’t even cross my mind. But put me somewhere I feel safe, surrounded by people who love me and know how to cope with a hypo and I take a break. It appears that I subconsciously relinquish diabetes responsibility to those that I trust.

At some point it appears my brain decided it couldn’t cope with the 24/7 nature of diabetes and would therefore take leave whenever the opportunity presented itself. Unfortunatley my brain isn’t a very considerate co-worker. It doesn’t schedule the leave or brief the people who are meant to be covering while it relaxes for a while. It just wanders off leaving a trail of diabetes chaos behind it. Thankfully my habit has been spotted and the family keep a watchful eye for ignored lows.

We think controlling diabetes is all about insulin, but I think we underestimate the power of the mind.

One of my friends introduced me to someone the other day as a “diabetes expert”. I’d never really thought of myself as an expert.

Do I fully, 100%, in depth understand the biology of diabetes? Not really. I function pretty well at the islet cells don’t work level, beyond that I only really take an interest in the biological side when I look at the feasibility of treatments or cures eg you’re giving people new islet cells? Sounds good, how do you make sure you their bodies don’t break those like they broke the last lot?

Do I understand my diabetes? Can anyone say yes to this? If you can, could you please let me into the secret? I have a good idea of how my body reacts to insulin, various foods, stress etc but not to the point where I’d claim to understand it. I understand my washing machine. If I select programme C I get a 30min quick wash, if I select programme F I get a long, hot wash for my whites. I understand it perfectly and it never changes. My diabetes frequently surprises me, my washing machine doesn’t. Therefore I must conclude I am more mystified by my own diabetes than my washing machine, but I do feel I understand it enough to live well.

Do I empathise with what it’s like to live with diabetes. Oh yes. I’m there. I understand that perfectly and am often found smiling or grimacing in empathy when I listen to someone else recount the details of a 3am hypo.

I watched in a mixture of horror, admiration and amusement at a diabetes conference once when a speaker told an audience of parents of diabetic kids that she’d lived with diabetes for 20 years. Actually, she’d been a diabetic nurse for 20 years and I’m sure she was good at her job. Sadly, that’s not quite the same as living with it and she hit a real nerve with the audience. One fabulous mother spent the next 5 minutes passionately pointing out that working with diabetes all day, and living with it 24/7 are two very different things:

“You may consider yourself an expert in diabetes, but you’re not an expert in living with diabetes until you’ve dealt with 3am hypos, been brave enough to put in extra insulin for mysterious highs and survived the terrifying first time you let your diabetic kid have tea at some other kid’s house.” Mother of a child with diabetes

I love parents of diabetic kids, they’re the best!

While I may shy away from being called a diabetes expert, I’m very happy to claim to be an expert in living with my diabetes. I’ve got 26 years of experience and all body parts still functioning perfectly, what more do you want!?

I start with a word that sounds like I’m about to stop living
My middle is a wager I might make on a horse
I end with a flea-like creature

That’s right; I’m a Di-a-be-tic. Or am I?

When I was a child I was a diabetic. Later the trend changed and I morphed into being a person with diabetes. Since I’ve started blogging I’ve also added pancreatically challenged to my list of labels. And that’s without even starting on the good diabetic/bad diabetic debate. But does it really matter what we’re called?

My initial reaction was that it didn’t matter either way. It was only when I heard other people try to label me that I suddenly became interested.

My attitude really shifted when I heard a group of healthcare professionals talking. There was a lot of talk of “What you find with diabetics is that…” and “Diabetics don’t respond well to…”.  

I hate being referred to as part of a group like that. While I know I have a lot in common with – and learn a lot from – the people reading this blog, I know that we’re also completely different. While its lovely to know that I share a disease with Tim, CALpumper, Sam, Ckoei, Mark, Scott and all our other readers, I expect my healthcare team to recognise that my attitude, needs, quirks and expectations are unique. We can’t all be treated the same.

As an aside, perhaps we could prove that we’re all different by all taking 5 units of fast acting insulin at 1700 BST today and eating a cheese sandwich made with 2 slices of wholemeal bread. Two hours later we can all record our glucose levels. If you are unconscious due to a hypo at this time or battling with high blood sugars you are permitted to record your result once you’ve regained consciousness. That should show just how different we all are. (For the record, because you can never be too careful where medicine and sarcasm are concerned, this is a joke, please don’t do it, I’m being facetious to prove a point not trying to set up a mass international hypo-athon!)

If I’m talking to other people with diabetes, I tend to say I’m diabetic because they know that I’m a person too, I don’t need to spell it out. Other than that I usually say that I have diabetes, it seems to infer that it isn’t the only thing about me. So what am I? I’ll probably just settle for being Alison, that seems to sum it up.

Bad diabetic?

When I meet other people with diabetes or even just people who think they know a bit about it, they often make a judgement about my diabetes. “Oh, you’re such a good diabetic” or “you’re such a bad diabetic because you’re eating that”. Whilst my overwhelming urge is to tell them it’s my diabetes and they are only allowed to make judgements about it if they take it away from me and live with it for a day, it did get me thinking.

What kind of diabetic am I?

• My HbA1c is great and has been ever since I got my pump – good diabetic
  
• I use a pump – in some peoples’ eyes this makes me a bad diabetic because they’re expensive so I’m a drain on resources. I’m often tempted to poke these people in the eye whilst gently explaining that I’m worth it.
• I change my lancets on bank holidays and when the clocks go forward and back. Other than that I only change them when I realise they’re hurting – bad diabetic
  
• I always change my infusion sets every 3 days and I rotate them round my body lots to avoid under the skin scarring – good diabetic
  
• I attend all my annual check ups for eyes, feet, kidneys etc – good diabetic
  
• I do like to whinge about having to attend all these annual check ups and about having to sort out my regular prescriptions – bad diabetic
  
• Despite occasional whinging, I do try and look on the positive side of diabetes - good diabetic
  


Good diabetic?

• I spend a lot of time in bare feet and have just spent 2 weeks sailing when I barely went near a pair of shoes – bad diabetic
  
• I don’t keep a log book; I know it’s sensible I just hate doing it. As a child I really hated it when my Dr would look through my log book and say “Why do you think you were a 17 a week last Thursday?” I’ve been rebelling against keeping a log book since my late teens – bad diabetic
  
• I like chocolate but I know how to eat it in moderation and adjust my insulin to cope with it. Some people think this makes me a bad diabetic. A man at a conference once told me I’d go blind because I was eating a chocolate brownie. I shut him up by telling him my HbAlc and was very tempted to eat a second brownie just to irritate him.
• I blog about diabetes – thus improving my own emotional state and hopefully occasionally helping others – good diabetic

I (modestly) think I’m a good diabetic with just enough bad diabetic tendencies to make me tolerable. I do the important stuff and get the right results, but I’m very impatient with the amount of fuss involved and only do things I can see a real benefit in doing.

What about you, good or bad?