Good Vibes – A Chance Encounter

So today was our day to go talk about how the CGM went.

Bless them trying to decipher what went on while running TBR the entire time, it really wasn’t possible.  It was a mess.  In fact the only thing we are changing is from work done in the past 5 days since the Navigator came off.

But we did explain what a positive effect having a CGM had on everyone involved in Emily’s care & Emily of course.  She had the sparkle back in her eyes, less mood swings.  She was a close to a normal 5 yr old as we are going to get.

But the best part of sitting discussing the data was again talking about changing pumps this summer to encompass a CGM into it.

‘So which pump were you looking at?’ our DSN asked.

‘We want to look closely at the Animas Vibe, I think that’s top of our list’  I told them.

‘Well we have Paul outside the door, he’s our Animas rep, would you like to have a chat, I think he is leaving soon’

Now in my head i was saying ‘Of course I do you silly woman, don’t ask stupid questions, someone go hog tie him and drag him in’.  I opted for the far more polite ‘Oh yes please, that would be great’.  See I can be tactful.

Paul pokes his head around the door frame ‘Hello’ He said

** Don’t make me drag your arse in here, i thought **

‘I’ll just go get you some information from the car’

** He better not be trying to run **

Paul comes back a couple of minutes later with a Dexcom box, sits down and opens it up to show us an Animas Vibe. and a Dexcom sensor.  It was tiny in comparison to the Navigator.  This is a big bonus.  The pump was as I expected really.  I didn’t however realise it had an inbuilt bolus advisor.  Something we had been concerned about.  And claims it was fully waterproof.  I am interested just how many people put that to the test on a regular basis.

Then there’s Diasend.  Something I’ve wanted access to for some time, and to my surprise, something despite never mentioning it, our clinic is using for many of their patients.  They also seem very forward in pushing for CGM’s.  So I haven’t mentioned about self-funding just yet.  We will continue to see what the CCG can offer us before playing our hand.

I’ve noticed now that I’ve been staring at the pump a little too long.  Getting lost in the idea of mapping my escape route with it.  I thought better of it.  No doubt i’d only end up hitting an automatic door or getting as far as halfway before realising I just can’t run that far.  He looked pretty quick.  I’d never make it.

So I guess we’ll have to wait for now.  But the future looks brighter.  Changes are coming.  Today was progress & a foot in the door.  For now back to a few basal changes and overnight testing.  It doesn’t feel so bad when there’s a light at the end of the tunnel to aim at.

animas-vibe

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Quarantine

So it looks like i’m in Quarantine.

I’ve been thrown out of work & not to return in a hurry. Why nobody wants to share my germs I have no idea. But it is freeing up a lot of time. I’ve decided that maybe I should embrace a couple of days of peace to catch up on a little more sleep, recover & take a proper look into Emily’s future care plan.

The CGM last week was a huge eye opener. We did not get the chance to iron out the problems we had on basal due to running a temporary basal rate from illness but it did give an over riding feeling of security.

Without doubt last week would have been hell without it. I think that is why I got so freaked out on Sunday when it expired. Fortunately as long as Emily keeps away from me she seems to be on the mend and we’ve lost the high BG readings, but the hypo’s continue,

Thursday we have a meeting at clinic to download the CGM data and discuss how it went and where we go next. I’m guessing if we can get them on side with the CGM idea then that may help our chances, We need to discuss our pump options as well. Something I also need to do with some members of the DOC.

I’m also going to be taking some time to go through a wide number of DOC blogs online that I’ve not had the focus to look at lately.

So i’m guessing that gives me 3 days at home. I’m pretty sure in that time I could even sort out the UK flood issues. I can’t just lie about and do nothing. It will drive me mad. However I will never be too bored to start the housework.

Hating Diabetes with a Vengeance

Today has not been a good day.  Actually it hasn’t been a good weekend as a whole.

The fact I currently have 3 other half written blog posts behind the scenes shows my ability to follow things through at present.  I am keeping out of Amy & Emily’s way because I seem to spend my time snapping at them for no other reason than I am getting annoyed with things that are beyond their control.  And once I have shouted at them for the poorest reason I just end up feeling worse & guilty for doing so.

So here are just a few things that have got me to this coiled up ball of stress.

1.  Emily has spent the entire weekend with either a very high BG or hypo, she only hits range while passing through to each extreme.  Despite having the Navigator to monitor I have had very limited success stopping each extreme.

2.  This morning the sensor of the Navigator died.  I instantly felt lost.  Yes we had coped well over 3 years without a CGM but it had given so much more confidence to us all this week.  It has felt like we had got a small part of our lives back & now it is gone.  I’ll go back to sleeping 2-4 hours a night.  I know even if we were to apply for funding this would be both unlikely and time consuming.  At best we are looking at another 6 months before we can self fund.

3.  I’m sick, my immune system has been battered in the past 2 months due to Emily being all over the place, the lack of sleep has meant I have caught every bug going & not been able to shift them.  I’ve had 2 head colds & bronchitis, on top of that I’ve had issues with my chest, moments of sheer panic when I cannot breathe, a racing heart & blood pressure high enough to warrant closer monitoring by my GP.  Finally I have a feeling that initially one, now both eyes have the feeling of someone pushing needles in them from behind while being squeezed in a nutcracker.  Something again the GP wants checked as they were concerned of Glaucoma. I can’t think of the last day when I didn’t feel broken with a crushing headache.

4.  Since D has taken over the thing to go to the wall is my running.  I simply cannot train on no sleep.  The nights in our house are my responsibility.  If my wife has to do them she just isn’t worth living with for the next 4 days (she won’t appreciate me saying this but she also won’t deny it).  So I do the long nights.  I am meant to be running the London Marathon in 2 months for JDRF.  The irony the condition I am trying to raise money for is the thing stopping me from running is not lost on me.  But it is getting me down.  Today I came to the decision that I would not be attempting to make my prep race of Silverstone in 3 weeks.  With all the combined health issues it would not be safe & certainly would not aide my slim chance of being fit for London in 2 months.  Not only have I wanted to complete VLM for many years but also I do not want to let down JDRF & those I am trying to raise money for.

It is doubly hard as I keep seeing Amy going out, enjoying her running and doing so well.  I am proud of her as I always have been but the thought that we will not be able to do all this together is getting me down.  She also does not take well to accepting she is improving so when she comes in acting like Eeyore saying how awful it was despite running excellent times i’m feeling less than tolerant to it.  But I am so proud, if she came in happy and feeling good I would share that but I can’t stand someone miserable after coming in from something I want to be getting out there and doing.

I feel like at the moment I’m looking at a 5000 piece jigsaw puzzle and don’t have a clue where to start.  I feel stuck in a vicious downward spiral that I can’t climb up from.  Emily is always going to be the number one priority, her well-being & safety will always come first.  But I know what means for everything else.  I just have to find a way to come to terms with it.

Those I would usually talk to at times like this, blow of steam to & look for the positives seemed to have disappeared into thin air, and i’m pretty sure they wouldn’t waste their times listening to me rant here so will go on oblivious to the struggles going on at present.  So unfortunately I’ve wasted all your time reading this instead.  Sorry!

So this weekend I am hating Diabetes with a vengeance, it has taken over.  It hasn’t just changed Emily’s future but all of ours, crushing ambitions on a daily basis, causing illness and complications beyond the pancreas it has attacked.  I know things will eventually improve.  We’ll get the control back and maybe have some normality in the house.  But for now there seems no end in sight.  And that’s the hardest thing to deal with.

Flight of the Navigator

The eagle has landed.

On Tuesday we finally got our hands on a CGM to play about with.  We only have it for 5 days but it will get us a feel for them & to see if it is a route we want to go down in the future.  I’d read many blog posts about the Navigator so knew what to expect.  Sadly as a 5 year old Emily hadn’t.  And as with anything new D-Related it scared the life out of her.

Emily still shows her displeasure at cannula changes, this can be in the form of shouting while we put it in to all out war, kicks to the face & thumping.  It just depends on her current bg and general mood.

So I knew we may have a battle to get this CGM Sensor in.  May need a but of brute force to just pin her down and get it in her side or so I thought.  No chance, upon getting to our appointment we were informed it would be best in her arm.  For the next 30 minutes Emily screamed, got hysterical, begged, hide and swung her arm so no-one could get near it.

The only thing I can liken this to is when Emily has been DKA & needing to have a saline drip in her hand.  That’s how worked up she got.  And we hadn’t had to do that for a couple of years now.

Eventually we had to strike, as Emily hugged Mummy I pinned her arm in place and our DSN stuck down the sensor & inserted it.  We were not popular anymore!

I needed to bundle her into the car & get her to Toys R Us quickly, this felt like it was about to get expensive.  In the end it wasn’t so bad, a scooter & some bracelets for £30.  I felt slightly relieved.  This is her outside Toys R us insisting on a sling from a scarf because I quote ‘It’s worse than a broken arm’.

sling

Anyway back to the Navigator, walking around Toys R Us it was blank, awaiting the beep for our 1st calibration.  Off it went, nice & easy to test and then hey presto, we had a blood reading on the screen.  We were up & running.  The OCD had started.  Don’t go out of range, stop running off.  Not easy in a toy shop!

follow

We get home and put another pump belt on & leave Emily to look after it.  Despite the whimpering the sling is now off and she is happy to play at home, albeit with a bandage to keep it covered up.  Instantly I can see a problem.  That lovely little arrow seems to love pointing up.  All the time.  Even for Emily it’s high.  I can see I was already loving and hating the new influx of information.

She had insulin active, not much but a bit.  So I though let’s play, I worked out a correction dose and put it through.  For the next 2 hours it was still going up!  What is going on?  Everything had be counted correctly, why it is not working?  The tiredness was creeping in, it was only 6pm.  The blasted alarm was ringing every 5 minutes to notify high BG.  I was tempted to throw that handset out the window.  It took 2 more corrections to get her back into range.  Her usage today was well up on usual.  Her cold had to be coming back.  We’ll work on that tomorrow I thought, he BG was in range.  It was low 7’s.  I was happy.  Finally we could get some sleep.

WRONG!!  Within 2 hours the alarm was going off…  How was this even possible?  This is what I woke up to

nightrage

It was mocking me, teasing me with sleep.  It was just before 2am.  It was going to be a very long night.  In fact I didn’t get back to bed.  I ploughed correction after correction in and by 8am the best BG we had was 9.8.  TBR was on, but now ramped up to 120%.

Lunch reading again was high.  Time to increase all food bolus too.  That was it.  Magic, it just clicked.  The chaos was calmed.  Her bloods were looping up and down for food and back into range.  Something like this would have usually taken days to unravel.  Trial and error to get her bloods correct.  With the Navigator it was all there, easier to see the trend and fix immediately.  I’ve saved myself days of sleepless nights.  You didn’t say it had to go back did you?

I went to bed at 10:15, that doesn’t happen in my house, it was weird.  No TV, just time to catch up on sleep, I even celebrated with a tweet proudly saying I’m going to bed.  But this is the part none of you saw…  15 minutes later…

low

ARE YOU KIDDING ME!!  I was fried, I was ranty, everyone was asleep.  There was no-one to hear the expletives coming out my mouth.  It was red mist, I was worked up but why.  It was only a warning.  She wasn’t yet hypo.  I reduced the TBR to 110% and waited for an hour.  Sitting next to Emily in her room staring at the Navigator constantly.  OCD at its best.  But it held level.  By half 11, an hour after everyone thought I was asleep I could finally go back to bed.

Normally I’d have not had a warning.  I’d have tested at midnight, found her low, woke her up, forced haribo or hypostop in, gone made a drink, retested at 2am & then hopefully got to bed.  I earned myself an extra 2.5 hours in bed.  I need this in my life 24/7

A CGM is the most amazing and frustrating bit of tech I have come across to date.  It undoubtedly would improve Emily’s control.  As discussed before it would especially help parents who are taking care of a T1 as we can’t feel the ups & downs.

It would mean more sleep for us.  More stability for Emily & more confidence for her school when she is there.  For now this is all a bit of a pipedream.  We will apply to the CCG for funding, explain our situation like everyone else does.  But I don’t hold out much hope despite how erratic Emily’s levels seem to get.

But there is a glimmer of hope.  In August we are due a pump upgrade, we are discussing a change to an Animas Vibe to encompass self funding the Dexcom CGM if it is not NHS funded.  It would not be easy but with some family support we may be able to manage it.  After just 48 hours I can honestly say you cannot put a price on having this at your disposal.

If you get the opportunity to trial a CGM bite their hand off!  It will give you an entirely new outlook on your diabetes management.

lastima

Increased Frustration

It’s 2:30am again.  And i’m typing away again.  I’ve been up for the past hour typing up BG readings and trying to make sense of the impossible.  We are in the middle of my most hated part of our diabetes cycle, the completely impossible to make sense of change.

Emily is predictably unpredictable.  Her levels do the same thing all the time.  There is a big issue (usually through the night) with a time block and high or low levels.  From nowhere she’ll suddenly be impossibly hypo or hyper no matter what adjustments we make.

We are currently on day 4 of impossibly high readings, at best the corrections keep her level but generally despite hefty corrections her levels just increase. 9pm, 11pm, 1am, 3am every single night at the moment.  And achieving nothing except pent up anger at digesting the impossible information being thrown at me.

After about a week we’ll start making progress generally, and within 2 weeks suddenly her levels will be great again.  So you do all this hard work for 2 weeks and what is the reward?  Generally 2-4 days of rest & feel good readings.  Then it is turned on it’s head again and we will be back to square 1.  We’ll start the cycle again, all for the possibility of 2 good days.

I want to scream, I want to punch a wall, smash plates, anything to stop me from feeling like I am going completely insane while holding all this together.  I know that diabetes isn’t easy but surely it can’t be this hard.  No one else I talk to seems to be losing quite as much sleep or suffer from such persistent issues.  But why?  Do you?  Do you just not say anything and suffer in silence?  Am I that bloody OCD that i’m sending myself crazy by being obsessed with getting it right every single time?  Can you really do too much when it comes to looking after your diabetes?

I’m pretty sure before long i’m going to be dragged away by men in white coats as I slowly continue to fall apart.  We are 3.5 years into this journey and I feel more out of control than ever.  Diabetes is all consuming.  It has taken away everything else I know and use to enjoy & turned it into a chore and something I despise, crippled my health and taken my own sanity.

The question is how will it all end!

Burnout

Today I have come face to face with the inevitable.  With Emily running high for the past week it has led to more testing, especially through the night (her correction ratio doesn’t quite fit at the moment so it’s taking 2 corrections at least to hit the mark).  And suddenly it hit me like a walking in front of a truck.  Burnout.  At the worst possible time.

I was laid in bed watching TV, glancing down at my phone, 10:55pm (early in my world) just 5 minutes until the next BG reading.  Emily had pulled a fantastic 21.0 at 9pm that made me crumple on the spot.  Despite knowing how crucial this next reading was and being just 5 minutes shy of testing my body had other ideas.  I was gone.

Alarms pre-set at 01:00, 01:02 & 01:30 were useless.  I was not waking up.  I push the boundaries of my sleep to the extremes.  I’m never asleep before midnight, generally I’ll go to bed between 1 & 2am to make sure Emily has no more than 5 hours without a test.

Despite missing the alarms I do wake up to a degree, try to rise out of bed but whatever I want to do my brain doesn’t.  I manage to grumble a barely audible comment to my wife who confirms she has picked up the mantle for the evening and she was now 22.0.  Even worse.  Again I slip back into my slumber unintentionally.  At this point I’d want to be up, waiting for the next test, making sure ketones were checked too.  Are there bubbles in the line?  Every possible reason for these ridiculous readings.

It’s now 4:55am, I glance down at my phone that is still in the bed clinging to it’s last ounce of battery.  I try to get up again to check Emily, the only way I can describe my attempts is watching a fish flap about when it’s out the water.  The rocking wakes my wife who say a number that sounds better.  I manage to roll out of bed, plug my phone in and fall back into bed for another 90 minutes.

I wake up feeling guilt like I’ve let Emily down, she cannot do this, it is my job and I failed.  What if my wife hadn’t have woken up and taken over.  How ill could she have been today?  What if something really bad happened?  I continue to beat myself up over the what ifs?  Next time we may not be so lucky.  I spend the morning apologising which she says I don’t need to but I just hate this when it happens.

It’s now 10am, and this blog is the most productive thing I’ve done today.  The cogs still are not turning.  I find myself opening my eyes and seeing my monitor and cork board above my work desk.  I have the classic look of a parent dealing with diabetes.  I lack the energy to feign a smile, or act interested at menial conversations, my face gives me away even hidden under a 2 week old beard.  I think we chalk today as a loss, coast through with my hood up and a headphone in.  5pm will be here soon then my real job of managing diabetes starts again!

Have a good weekend all!

GBDOC Tweetchat 29/01/2014

This week has been one of those I would rather forget for many reasons.  It has left me very unmotivated towards anything that isn’t D related.  This does not bode well as I have my prep race for the London Marathon in just over 4 weeks and I haven’t trained yet.

My own GP has removed my life source of caffeine due to high blood pressure and heart rate so my brain feeling quite like an engine running out of petrol!

It also means I missed the GBDOC Tweetchat last night, one I really wanted to get involved with so i’ve decided to share my views on what I would have like to contribute:

gbdoc1

I think demanding can be viewed many ways by different sides.  To me I am not demanding when I ask for the best possible care and course of treatment for Emily however have found I need to be proactive with this because our HCP is not the kind to offer up help.  So to them I may seem quite demanding but to me I am only getting what I think they should be providing.

gbdoc2

Demanding more would for me mean more time given towards us before appointments, I get infuriated when they download pump data and within 3 minutes can analyse everything.  Sorry but this takes a long time.  Not just a fleeting glance.  I would prefer we sent the data in 48 hours before an appointment so they can properly look at the numbers and advise us where they feel things need changing.

That being said I do send data between appointments to explain changes, and tweaks I’ve made.  Only to now realise they do not even take notice of it.  In fact the advice given was something I had already advised them I’d done a week before.

I always get the overwhelming feel that they just do not have the time to spend an hour looking at a patient’s data.  Maybe this is the way things are with public sector cuts but as a tax payer who works 50hrs a week a feel getting the proper care is the least we deserve.

My 2nd demand would be everyone’s probably.  More funds for CGM monitors.  It is something that would make dealing with a condition that none of us asked for a lot easier.  It should be seen as a requirement not a luxury.  If they looked at the big picture they would cost a lot less than funding test strips/lancets immediately as well as the long term cost of complications that may need treating from poor care in the future.

gbdoc3

I feel the only way can prove you we deserve the best treatments is to be the best as we can be in caring for D on a daily basis.  If I can’t take the time to look at the data, carb count and try to keep sugars good then why should I be rewarded with better care.

This is why I feel we can be ‘pushy parents’.  I will do night tests 6/7 nights a week at 12am & 2am (more if required).  We will suggest, tweak and maintain our basal rates on our own outside of each clinic.  We want the best possible life for Emily, to embrace her diabetes as she grows up, so if we can make it as painless an experience as possible we will.

gbdoc4

Easiest answer of them all, the best place to learn about diabetes is with the #doc.  They have taught me and supported me more than any DSN or HCP.  When I need help this is where I turn to, not the hospital.  It is an amazing place to discover.  I couldn’t live without you guys!