‘Tips’

Someone out there knows that I’ve got diabetes. Well obviously. I know that you know that I’ve got diabetes and that my family and friends know that I’ve got diabetes. What I mean is that someone who is responsible for the direction-of-junk-into-my-cute-old-style-snail-mail-letter-box knows that I’ve got diabetes.

How else can you explain a twenty six year old getting catalogues full of ‘Special Shoes’, ‘Walk-in Baths’ and even, gulp, ‘Aids for Erectile Dysfunction’. Yes, really. Despite the fact that I am, (or at least was the last time I checked) a woman and no man even lives at my address, (unless he is hiding in the back of a cupboard somewhere and I don’t know it) I get these with frightening frequency. I hope I’m not being insensitive to the needs of those affected here, but the marketing people have gone way wrong somewhere if they’re writing to me!

Sarah one my best friend called up me saying she got into tonsils woes. She said the doctor advised her for tonsillectomy. She was after plenty of information from net and got confused. Sarah read that post tonsillectomy worries like bleeding and dehydration. She was desperate in finding how to get rid of tonsil stones. As I read about Jennie’s Tonsil Stone Cure Helper blog I advised her to look into http://tonsilstoneshelper.com/ which later she endorsed it helped a lot in answering most of her questions. What I believe is “Tips” must be given to the people who in need.

Today, amongst the bills, demands for money, bills and more demands for more money, was a gem with ‘Travel Tips For People With Diabetes’ emblazoned across the top, along with pictures of syringes, bottles of insulin and a blood glucose meter. I suppose, to the people who put this together, these things define diabetes. Personally I’d prefer to see pretty pictures of palm fringed beaches. I have enough of insulin and blood glucose meters on a daily basis. But I digress.

The leaflet was packed full of oh-so-useful completely useless information.

Take this one, for example:

Keep yourself hydrated by drinking plenty of bottled water
The implies that either
a) you purposefully allow yourself to become dehydrated when you are not travelling. This is supposed to be a ‘Travel Tip’ remember? Or
b) that you would allow yourself to become dehydrated when travelling if you didn’t have diabetes along for the ride.

I hate being patronised.

Let’s see what else is in there.

Once you arrive, make sure you put on your Diabetes ID bracelet or necklace
Is it just me, or is this a little daft? Wouldn’t it be better to wear the ID whilst you are travelling as well? This advice is also drastically at odds with the best one of the lot, the one that, if I’m honest, really inspired this post:

Don’t travel alone if you have diabetes
Right.

Good job this all arrived now. I’m heading off to San Francisco in a couple of weeks. As long as, that is, I can find a friend to go with me at this short notice. I shouldn’t be allowed out on my own. I’ve got diabetes you know.

Bah!

Happiness is… A Pump That Works

So loaner pump number two arrived this morning.

I’ll admit I set it up with a little trepidation, especially when, on trying to set the time to 54 minutes past the hour, it wouldn’t scroll down from zero. But evidently that is just the way it is, because the down arrow key works just fine.

I’ve learnt a couple of things from this experience; That being without ‘Smart’ features makes pumping a whole lot more like hard work. I’m not quite sure how I ever managed with a Minimed 508, but maybe my mental arithmetic was better back then. So definitely a case of really appreciating what you have when it’s gone, and remembering how lucky I am to have access to this technology at all now that it is back.

I’m no stranger to pump problems. In fact I think I may just be a little bit jinxed. By my calculations the pump I’m wearing right now is the 14th different one I’ve had in the last four years. Is that some kind of record? What I’ve learnt this weekend, though, is that it isn’t that a problem has occurred that matters, it is the way that it is dealt with. Everyone has been professional and apologetic, and the replacement pumps have arrived right on time. The pump this morning arrived with a great note apologising for the problems and thanking me for, and I quote, “being so reasonable about all of this” and acknowledging that “it must have been a very stressful weekend.” It is very easy to be reasonable when everyone is supportive and doing their very best. Some other pump companies, at least here in the UK, have much to learn.

Oh, and the new pump is blue.

Pump Woes

Maybe I jinxed myself when I commented here, on Sandra’s blog about how my Animas IR1200 was three months old, and I was keeping my fingers crossed as I’d never had one for longer than that.

Or maybe I accidentally uncrossed my fingers.

My pump went wrong on Friday afternoon. Of all times, it would be a Friday afternoon.

Actually it hadn’t been quite right for a little while. I kept missing alarms and alerts, even though I had them set to ‘High’ volume level. I have the pump set to beep before and after bolus delivery, just to confirm. But lately I haven’t always been hearing those beeps, even when the pump is right there in my hand.

On Friday morning, I was doing some work on my laptop lying on the sofa (what can I say… I’m just a slob at heart!) The pump was right next to me, not even in my pocket, as I hadn’t bothered to put it back after a bolus. I was startled to hear the ascending-and-descending-siren (aka ‘Sweep alarm’) plus vibrate start up. I hadn’t confirmed a low cartridge alert. Looking at the alarm history, the pump had supposedly been alarming for nearly an hour.

It was right there, and I didn’t hear a thing.

I’m absolutely certain that there is nothing wrong with my hearing. Certainly I don’t seem to need to have the volume of my iPod as high as 90% of people on London’s public transport, and often I can still hear their music through my own!

I resolved to call Advanced Therapeutics, the UK distributor for Animas, but it wasn’t a high priority, at least not compared to other stuff I had to do right then. In the mean time I set most of the alarms to vibrate instead, and looking back think it was probably a little daft to rank the machine I depend on as ‘low priority’!

Then, that afternoon, when I was changing the cartridge, the screen just went blank in the middle of the prime sequence. Stunned for a few moments, when I next pressed a button, the main screen, showing time, current basal etc appeared fine. Relieved, I went finish the prime, only to find that the prime menu was completely unintelligible. It seemed to have alternating dark and light stripes at varying intervals both up and down and across. Parts of the actual screen display were still sort-of visible beneath the gobble-de-gook.

What threw me is that this wasn’t a straightforward screen failure. Several of the screens were still fine. For anyone familiar with the IR1200: Status 1, 3 and 6 are unreadable, but 2, 4 and 5 are normal. The entry screen for ezBG is unreadable, but if you go through to the results page, it is fine!

I managed to complete the prime cycle intuitively i.e. by remembering the usual sequence of button presses. Got myself hooked back up, and gave Advanced Therapeutics a call. As always, I got awesome service. They arranged, with some effort and several calls back, to have a new pump with me before noon on Saturday. In the meantime, I could bolus with a syringe, and the pump would continue to deliver my basals.

Ah… Basal.

It was at this point that I realised the basal review and edit screens were affected, and having made a number of basal rate changes recently, I didn’t have a back up record.

The moral of this story is, of course, always have a written record of your basal rates!

Fortunately I was saved by the fact that the main screen was still working, and shows the current basal. The clock setting screen was readable enough that I was able to set the clock to different times of the day, and retrieve the basal rate from the main screen. Phew!

Saturday morning came and the new pump arrived as promised. It was black, instead of my usual silver. I’ll admit that as I sat looking at the two pumps together I felt a fleeting sense of sadness that I’ve written about before. Nevermind, I thought, at least this one will work…

Got the battery in. Set the date. Accidentally scrolled to 19 instead of 18 for the day. Tried to go back.

Nothing. Happened.

Huh?

Left the wrong date, went into the main menu.

The down arrow key: Doesn’t. Work.

Shit.

So I was left with a choice between a pump that I can’t read, or one on which a major button doesn’t work. No choice really, since no down key means you can’t access the prime menu or set basals.

So the black IR1200 is all packaged ready to go back. And I should have another new one tomorrow morning.

Perhaps the next one will be blue…

Blind Panic

It is always around 4am when it happens. Not that I know that straight away. By the time I look at the clock, after a few seconds of flailing around in the darkness with my heart pounding in my chest, the panic is gone. Because I can see the glowing red digital display, and I know I’m not blind.

It almost always happens in unfamiliar places, outside of London where dark is, well, actually dark. In those moments between full sleep and complete wakefulness, my mind goes into overdrive convincing me that I can’t see. That the inky blackness surrounding me isn’t real, but just the gap in my consciousness that my eyes have failed to fill in. This panic may be unrealistic and irrational, because I know it would be unlikely to happen ‘just-like-that’ from fine to blind, but the underlying fear is very real.

I fear losing my sight.

I’m guessing this is probably not that unusual amongst people with diabetes. The potential consequences of diabetes, especially when less than optimally controlled, are continually being drummed in to us in the post-DCCT era.

Even though I know that my parents invested considerable effort in giving me good control as a child, even though I’ve spent a considerable amount of time working on good control myself, even though I know I’m doing everything in my power to minimise the risk, I still fear it.

Even though my routine retinal screenings have only ever found one tiny ‘background spot’ and I’ve generally been told my eyes are in great shape, even though I’ve passed the magic twenty year marker that supposedly points to having a low predisposition  (for reasons other than those related to glycemic control) for complications, I still fear it.

Even though I know modern laser procedures are excellent, and I haven’t even got onto the long road of any kind of interventions yet, I still fear it.

In my mind I can’t help but magnify all the times my control has been less than it could have been, either despite my efforts, or, perhaps especially, because of my efforts or lack thereof.

I think that I fear sight loss because its impact would be so total. I’d lose my job, and so many other aspects of my life that are important to me. It isn’t even that I think any of the other potential complications of diabetes would be any easier to come to terms with or to live with, I just find them less  overwhelmingly frightening.

That 4am panic sums it up. Oppressive darkness surrounding me until I feel as though I’ll drown in it. Faces swimming into my mind to tell me I’ll never see them again, hotly followed by the realisation that I’ll never see anything that I haven’t already seen.

The only way I know to cope with this, to keep my panic and fears at bay, is to devote as much time and effort as I can to keeping the control that gives me the best chance of staying complication free, and continuing to live the life that I want to lead. My life and freedom are precious, and I’ll do what it takes. Therefore it is mainly to end this fear that I dream of a cure, rather than to end any of the daily tasks of blood sugar management, tedious as they may be. 99% of the time I feel ‘well’ with diabetes. A cure wouldn’t make an instant difference to how I feel physically, but it would lift an enormous weight from me, and really change the way that I look into the future. Perhaps literally.

Waiting

I sometimes wonder how much time I would find, if I added it up, that I have spent sitting in hospital waiting rooms in my lifetime. I don’t actually go so far as allowing myself to wonder what better things I might have done in all that time, given the choice.

Of course, as someone who works in healthcare, I see two sides to the appointment waiting game, but still, the following scenario seems strangely familiar…

This is your second attempt at the appointment. Last time late arrival of the babysitter/the car failing to start/a person falling beneath an underground train at Kennington bringing the whole Northern line to a standstill (delete as appropriate) caused major delays. With heroic effort, you managed to be only ten minutes late, but they wouldn’t see you. So this is take two.

It begins with optimism that it won’t be that long. After all if they wouldn’t see you when you were ten minutes late, they probably never run later than that themselves. The hands on the clock slowly turn round. You have to verify with your watch: yes, you really have only been here five minutes. Ten minutes come and go, and finally fifteen.

Frustration begins to creep in, because although you have no other pressing engagements, you have taken an afternoon off work to go to the appointment and if you can get it over with quickly, you could have the remainder of the afternoon at leisure. Fantasising about how to spend an illegitimate free afternoon eats up another ten minutes.

time

You start wondering how to pass the time. You casually wander over to the magazine stand/table/pile on the floor and start reading a great article. However, you fly into an internal rage when you turn over the page to find the end of the article has been torn out, no doubt because the person who last read this particular magazine wanted the 25p/25c off washing up liquid/chocolate chip cookies/pasta sauce coupon printed on the reverse.

You turn your attention back to the waiting room with its peeling paint, wilted pot plants and water-marked floor (a defective water machine, you hope) Alternatively: soft chairs, fresh paint and artwork – lucky you! You fight the urge to let out a large sigh.

Other people get called in, and you’re sure they arrived after you. You try to console yourself with the fact that they are probably seeing a different doctor. And anyway, you don’t want your doctor to be rushing through the patients, because you wouldn’t want him to rush your appointment either.

You start to wonder if maybe it is personal. Do you smell? Were you rude last time you met, or are you being punished for the time you were late? You consider checking with the receptionist in case you’ve inexplicably been forgotten, but decide against it for fear of seeming pushy.

You decide to try reading another magazine, but find you can’t get into it, because you’re sure it must be your turn soon, and you don’t want to be wondering about the end of a good story you don’t get to finish. Instead you vow to bring a book next time.

Finally you decide to go to the ladies. That will give you the opportunity to double check that you don’t smell/have bad breath as a possible reason for not being seen. You can also then legitimately enquire with the receptionist on your return, in case you missed your turn while you were gone.

No, you didn’t. The receptionist flashes you a grin and tells you they are “really busy, you know how it is?” You get really frustrated now, and can feel your blood sugar, not to mention blood pressure soaring in response. When (if) you get to see your doctor, you vow to tell him/her exactly what you think of them, and then find yourself a new doctor before you are next due a review.

Finally you hear your name being called. The doctor apologises and thanks you for your patience; “you know how it is?”

And of course you find yourself agreeing that you do know how it is and saying that it is quite alright… really not a problem at all…

EZ-Wrap: 1, Caro: Out For Revenge

I like long tubing.

I like the fact that with long tubing I can wear my pump in my socks (rainbow striped today) or clipped to my boots, or tucked inside a piece of Tubigrip around my calf. I like the fact that when I’m asleep, my pump can do it’s own thing, far away from me. If it falls on the floor, I’m not woken by a tug on my infusion set. I can roll over at least twice and the tubing just wraps round me without me actually lying on my pump, which is, let’s face it, a pretty uncomfortable way to be woken up. I like the fact that my pump, which, despite being quite happy with water, doesn’t like bubbles so much, can sit on the floor next to the bath tub and I’m barely aware that I’m wearing it while I soak away the stresses of the day.

But sometimes that long tubing is just a pain.

Like when my pump is tucked into a pocket, and no matter how well I coil it up and tuck it away, it always springs out just when it sees a door handle or knob. Or when my pump is tucked discreetly beneath a sweater and it snakes its way out, hanging nonchalantly almost to my knees when I meet a new person for the first time.

This is where the ez-wrap comes in.

diabetes - wise

The ez-wrap is a piece of plastic that slots on the back of the IR1200, creating a channel between it and the pump. You then wrap the excess tubing around the ez-wrap, sitting in the channel, tuck the pump in your pocket and go. No embarrassing hanging tubes, or sudden door-knob snags.

Even before today though, there were problems with the ez-wrap. I don’t like that you can’t use it when the pump is in its holster. I’m not a case kinda girl. I hate trying to push buttons through the plastic window, and while I’m happy to fish the pump out of my bra, socks or tubigrip, taking it out of a case is just too much work. Trouble is that pump-in-holster-on-waistband is one of the times ez-wrap could be of most benefit. I doubt too that it will work with the long-awaited “Slim Clip” (which has been a prototype for, like, forever!)

Today was the big one though. The ez-wrap definitely got one over me.

At 4pm I felt pretty off. Blood sugar clocked at 16.4 (295) with no logical explanation. My infusion set was two and half days old and feeling a bit sore, so I changed that. I had plenty of insulin in the pump, so I just ran a prime and checked for air. Seemed good.

An hour later, feeling worse, not better, I tested at 20.4 (367) Eeek.

I unwrapped my tubing from the ez-wrap, and this time noticed that it was wet. A sniff confirmed that smell, that to anyone without diabetes you might describe as that of elastoplast, but to anyone with is just ‘insulin’.

The damn ez-wrap ate my tubing! Not so e-z now, huh?

Now that my blood sugar is perfectly ok again, I’m out for revenge. My ez-wrap may find it has an untimely meeting with a hammer, because I choose a door handle snag over an unnecessary high anytime!

Scared

Let’s face it, diabetes can make you scared. Often in a vague, far-off kind of way: scared of potential complications lurking in the future, scared of having, at some non-specific time in the future, a major hypoglycaemic episode.

Sometimes though diabetes makes me scared in a simple right-here, right-now kind of way. And there is nothing quite like the scare that a blood sugar that keeps on tumbling, despite every effort at intervention, can give you.

Last night was a classic example. I tested at around 10.30pm and got a 5.2 (94). I had just the very tail of a bolus on board, so I had around 15 grams of carbs, and got ready to go to sleep.

At 11pm, when slumber was persistently beckoning, I re-tested. I was surprised to see a 3.9 (70) I had another 10g of carbs and struggled to keep my eyes open a little longer so I could test again. Sometimes, when I’m that tired, I wouldn’t bother. I’ve no idea why last night I did, why I had a strong nagging feeling that I should.

I was glad I did. At 11.20pm I was 3.4 (61). This wasn’t funny anymore. I went for a full 20 grams of carb in the form of Lucozade , planning to bolus when I went shooting up. Except, I didn’t.

11.40pm and my blood sugar was 2.3 (41) This was where the fear really kicked in. I’d now had a full 45 grams of carbs in the previous hour, which would usually require 3.2 units of insulin. I knocked back more Lucozade, probably around another 20 grams, but I’ll admit by this stage, with my heart thumping in my chest, and sweat beading my brow, I wasn’t counting.

The adrenaline was certainly flowing to fuel my fear, but it wasn’t doing anything to push my blood sugar back up. At 11.55pm I hit rock bottom – almost – at 1.5 (27)

I finished off the bottle of Lucozade,  visions of me being found dead in bed by police who had broken down the door after no one had seen me for a couple of days, flashing through my head. Until…

Five past midnight and I was on the up. 2.7 (49).

Ten minutes and a couple of biscuits later 3.7 (67) My heart stopped thundering out a beat, and when I dried the sweat it didn’t reappear.

By half past midnight, two hours after I first checked my blood sugar, I was at 5.8 (104). And with what I later calculated to be around 90 grams of carbs coursing through my system, I finally fell asleep.

Of course that wasn’t the end of it. The result of these scenarios is almost always the same. Occasionally it might be a collapse that involves spontaneous awakening, or a collapse involving the administration of glucagon, or even something involving blue lights and paramedics. But far more often, these scenarios simply result in a rebound.

20mmol/l.

That is 360mg/dL.

I guess the carbs finally showed up on the scene then!

You’ve got to wonder really…

Where has the insulin that causes these lows been? They often seem to occur when there is no, or very little, active insulin on board, or perhaps after a stubborn high in which the urge to rage bolus (to steal Kerri’s term) has been resisted.

Where does the ingested carb go? Even if that was what caused the later spike, rather than the stress hormones, it still took hours!

And the big one: If I hadn’t started intervening when I did, where might I have ended up?

Not much wonder diabetes makes you scared, is it?

Nice One, Caro!

It was three hours this morning until I realised that I wasn’t wearing my pump. Three hours!

Obviously this is not a good thing.

Should I have been content in the fact that if I can forget to wear my pump, I must be pretty comfortable with it, and planned to use this anecdote to reassure people who are worried about pumping, afraid that they will always notice the pump? Would that have helped in any way as I impatiently waited for my blood sugar to come back into range and to start feeling better than awful?

Sometimes I can’t believe the things I do and, being honest, this isn’t the first time I’ve forgotten.

Surely I can’t be the only person to make such a stupid, fundamental mistake?

What Drives Hypophobia?

This is a good question, that I have been prompted to ponder by Art-Sweet’s comment to yesterday’s post, Chicken.

The funny thing is that most of the time I’m actually far more afraid of high blood sugars than of low, mindful of the potential long-term consequences of recurrent, prolonged highs. I’m on a permanent quest to keep my A1c as low as possible, so it really is just in certain situations that I become a hypophobe.

Some of the causes are quite simple, along Art-Sweet’s lines. Serious hypoglycaemia at work could well amount to professional suicide, for example. Travelling long distances alone is not best accomplished in a hypoglycaemic state either. But at other times, the reasons are a whole lot more complicated and difficult to explain.

I have a natural fear of night time hypoglycaemia. This is ordinarily kept in check by a combination of the fact that I trust my basal rates, that I am usually woken by hypos in my sleep before they get serious, and that if I feel I am particularly at risk I will set an alarm to wake myself at a suitable point. As someone who usually lives alone this becomes less straightforward when I’m not alone. Strange? Well, yes, but when I stay with people, who may be asleep just the other side of a wall, or even in the same room, I worry about disturbing them either through behaviour caused by actually being hypo, or with an alarm clock going off at 3am.

This, I think, brings us to the real crux of the matter.

I’m a hypophobe when I’m afraid of seeming out of control of my diabetes. This is ironic, since hypoglycaemia is recognised to occur more frequently when control is tighter. But most people don’t know that. They also don’t need to know if my blood sugars are a little high. That is easy to conceal, and hyperglycaemia causing problems that require intervention from someone else takes a good while to develop. Getting up to get juice or sugar isn’t so easy to hide, and hypoglycaemia can very rapidly become a problem requiring assistance. In a nutshell I get afraid of being hypo in situations where I am afraid that people will judge me.

This isn’t the same as being ashamed of diabetes. I’m not. I happily tell everyone and anyone, and will gladly try to educate. What I fear is people thinking that I can’t take care of it.

To be fair to myself, some of this started from a time when there was another girl with type 1 within my immediate peer group. She was someone who never tested her blood sugar or injected in public and never went low in the company of others. What everybody didn’t know was that her A1c frequently exceeded 10 and she was really anything but healthy. I, on the other hand, routinely tested my blood sugar without pausing in a conversation, wore a pump and sometimes needed juice or glucose tabs as a mater of urgency. I had A1c’s in the 6-8 range, but many people perceived me to be the less in control of the two of us. They told me so, and wouldn’t really be moved by any amount of education.

The people from this group that I would actually call good friends, were, of course, completely understanding of where I was coming from. To this day, I don’t have a problem in letting my really good, close friends, the people who understand, know what is going on, although I’d much rather not disturb them unless I have to.

But inside I have a fear of going low outside of that circle because it gives my diabetes way too much of a powerful voice, one that says “Look at me, I’m the one that is in control and she [me] can’t do anything about it.” Even when I know that isn’t the case. So yeah, sometimes I’m a hypophobe, because I just want my diabetes to go unnoticed.

Chicken

I’m a chicken. A coward. Sometimes I’m a hypophobe with an appalling lack of judgement that leads me headfirst into unnecessary, avoidable highs. Last night was a prime example.

Last night, after a high protein, high-ish fat meal, I tested at 6.0 (108) at a little after two hours into a four hour extended bolus. Great!

But: I had a little under three units active on board, and a little under two units still to go in. So I chickened. I cancelled the remainder of the extended bolus. And I paid with a 14.5 (260) a little over two hours later.

Why do I do this to myself?

I generally do check my blood sugar at around 90 minutes after eating. This gives me enough time to work with the active insulin on board to get myself where I want to be. If I’m cruising towards being low in around another hour, I can use a temporary basal, or eat a small snack. If I look to be leaning towards finishing up high, I’ll take a second bolus. (N.B This works for me, but I’m not advocating that everyone should do it.)

But I always seem to come unstuck when I use combo boluses. I seem to forget that there is a reason that I use them. That whatever it is I’ve eaten is going to continue pushing my blood sugar up for hours past the normal time frame.

Or more likely, I’m just a chicken. A hypophobe…