Diabetes Diary: Jan 2017

I’m thinking to do a post like this, maybe 3 monthly, to keep a log (or a blog, if you will) of how everything diabetes related is going.  This one may be a bit lengthier, since I’ve not blogged in such a long time but here goes…

Update

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DAFNE – In November 2015, I completed the week long “DAFNE” course (dose adjustment for normal eating) – a structured education course about all things insulin related.  I had been on and off the waiting list for this course for years, with some doctors thinking it was exactly what I needed, others thinking I ‘wasn’t ready’.  The course really inspired me and I might do a post about DAFNE alone.  However, I have to say, it hasn’t changed my blood sugars, health or wellbeing.  This is not because the course is no good – if you’re in the right place, it could work wonders – it is because of my mental health and motivation that I’m still struggling.

Breakdown – At the last clinic I went to (July 2016) I decided to be honest and admit how much I was struggling in the hope to referred for counselling.  I tried to explain how I was feeling to the doctor but as soon as I started, I burst out crying and couldn’t stop!  I think the doctor felt a bit awkward and passed me on to one of the nurses, Gillian, saying she was “very sympathetic”.  She has type 1 diabetes herself and is a brilliant nurse.  She sat with me and listened and understood how I was feeling.  She agreed to help which leads me on to my next point…

Nurses – The DSNs (diabetes specialist nurses) have been amazing.  Pauline and Cath who did our DAFNE course are always on the other end of the phone and Gillian has been supporting me via phone and email ever since me getting upset at clinic.  I was completing diaries for her and she was helping me tweak my insulin.  This is so helpful of them and I am hugely grateful.

Positives

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Think Like A Pancreas – I started reading this book a few weeks ago and although I haven’t nearly finished it yet, I would definitely recommend it.  It’s full of interesting information and keeping me engaged with my diabetes, which is something I find challenging.

New meter – Oh. My. God.   I have a new meter and it is AMAZING.  It’s the Contour NEXT ONE and it links via Bluetooth to an app on your phone.  I had the previous Contour Next meter and really liked the size, style and ease of use.  It could plug into the computer via USB but, in all honesty, the first time I tried to do that, I didn’t set it up properly and never used it again, so only used the USB to charge it up which was a really handy feature.
The new meter doesn’t have the USB port so uses batteries instead but meter batteries last forever and a day, so it’s not too much of an issue.
The main advantage is the app and automatically having a diary on your phone without inputting the BGs!  I love it.  I have only been using it for two days so don’t have a lot of data to show you but I have put in the screenshots to illustrate.
You can set your own targets, add your insulin doses, food you’ve eaten and carb content, exercise, notes etc.  You can also send the diaries via email which is a great feature and add in appointments, HbA1c info and much more.  It’s a game changer.
It also creates graphs from your readings and (a favourite feature of mine) the meter itself, has a light which appears red if you’re low, green if you’re on target and yellow if you’re high.

 

DAFNE catch up – The best bit of the DAFNE course was undoubtedly meeting like minded people.  We are now in a Whatsapp group so you can get support or advice from them all the time.  We also catch up at both DAFNE follow ups and our own (usually boozy) get togethers.  Our next is scheduled for February and they’re great for a rant and a moan!

Negatives

Nightshifts – I work as a support worker in emergency accommodation, for homeless men, which poses many challenges, included diabetes related ones!  I don’t work nightshifts as part of my contract, but recently have been doing some to cover as we were short staffed and for some extra money.  I won’t be making a habit of them anyway but the main downside of them was not the sleeping pattern, or trying to stay awake at 3am… it was the crazy blood sugars the next day.  I wasn’t doing them for long enough in a row to change ratios or background doses so I had a bit of a rollercoaster and many unexplained highs after them.  If I was working them regularly, I’m sure I’d find a way but for the odd one it played havoc.

Exercise – Like everyone at this time of year, I’m trying to exercise a bit more.  The most frustrating thing is thinking you’ve had a super healthy start to your day, then testing your blood sugar, to find out your body has had the most unhealthy reaction.  The other day I went to Metafit for the first time… I woke up at 9.2mmol, had cereal for breakfast, carb counted did my injections, went to the gym, then a few hours later I was 20.5mmol!! So infuriating.  One of my DAFNE pals said she avoids exercising in the morning where possible and if she does, takes insulin and no breakfast.  For me, this isn’t very workable.  I usually go to gym classes around 10am before I’m working a backshift, so need to eat before, and whenever I plan to exercise in the evening, I always manage to talk myself out of it through the day!  Back to the DAFNE textbook to find a solution….

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Prescriptions – I have been so disorganised recently and keep running out of test strips/needles before my prescription is ready.  I need to get a grip – simple as that!

HbA1c

At my last clinic in my A1c had come down slightly but is still too high.   I can’t remember what it was but I think roughly 9% (or 75 mmol/mol) – this is an average BG of around 12mmol.  I’ll update this post when I find out exactly what it was and plan to blog them on here after each clinic.

To Do

Counselling – This has been on the list for quite a long time.  I think the root of most of my diabetes issues are mental health related.  I have been to the GP about this before and also hoped to be offered counselling at my last clinic, neither of which have come to anything.  So my aim at the moment is definitely to source some counselling.  Maybe from the Tom Allan Centre, in Glasgow.

BG diary – This is always on my to do list, to keep a blood sugar diary.  With my new app, I think it might be manageable.  Over the next few months, I’m aiming to keep on top of it and log my carbs and doses on the app.

MyDiabetesMyWay – I have been meaning to sign up to this website for years but keep forgetting to get a doctor to sign a form for me to allow me to register. This website, available in Scotland, allows you to track your A1cs, notes etc.  The main reason I want to register is so I can view my A1cs, so I’ve registered for another form to be sent out and I will get it signed this time!

 

(Sorry, this was much longer than I expected it to be)

Burnout?

I haven’t written on here in 8 months!  And that pretty much sums up my diabetes attitude at the moment.  To be perfectly honest I haven’t really been testing enough or counting carbs at all.  I guess I’m sort of winging it.  I know I need to do something about it but have no motivation at all at the moment.  It’s sort of like eating healthily and exercising, except it’s to keep you alive.  You go through phases where you’re really motivated but then a few weeks or months later, you don’t see many results, you slip up, you don’t feel the motivation anymore, etc.

My aim over the next week is simply to test 4 times a day.

Short and boring post today but I’m going to get back into it!

Catchya

Christmas colds and diabetes

Pretty sure everyone I know was a bit ill at some point over their Christmas holiday, whether it was from a bug or self inflicted!  The annoying thing about diabetes is that when you have the cold, the flu or a horrific hangover, you still have to deal with the diabetes and more often than not the illness makes the diabetes worse AND the diabetes makes the illness worse.

One thing that really grinds my gears, is when people are hungover and exclaim, “I need sugar!”, as they reach for their irn bru… because all they are really complaining about is their blood sugar dropping by about 2mmols.  I understand that hangovers are yuck, and I love to complain about them as much as the next person, but bitch please, our blood sugars can fluctuate by >20mmols in one day so pipe down.

Between Christmas and New Year, I was feeling pretty yucky.  I had the horrible cold and sickness, that my family seemed to pass from one to the other, throughout the festivities, but the really bad bit came overnight when I woke up feeling like DEATH.  I felt sick, my head hurt, I needed water but to lift my head was like trying to lift a 10 tonne truck.  When I eventually managed to check my blood sugar, it was 30.2.  For those of you who don’t know, this level is dangerously high.  It should be between 4-10, ideally around 6 or 7.
Luckily I was home at my parents and so I phoned my wonderful mother and father’s mobile phones at about 2am and mam came downstairs to help me, getting me water (with a straw so I didn’t have to lift my head to drink it), a basin and holding my hair back as I was sick.  I had a little cry with her about how shit diabetes is.
There can be days like this with type 1 diabetes and I’d really like us to raise awareness of how hard it can be – it is nowhere near as simple as some people seem to believe.  But I would also like to note that I know how lucky I am – I got better the next day and, since I didn’t feel well enough to go on a night out, spent a lovely Hogmanay with my fantastic family who I am lucky to have!

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I hope everyone else had a great New Year too and are sticking to those resolutions…  My resolution happens to be diabetes related too – trying my hardest to carb count properly and keep track of my blood sugars to figure out my insulin ratios, for once and for all (Also resolved to read a book a fortnight but Mark Zuckerberg went and stole that one!).  So far, so good – I’ve been weighing my foods and keeping track of the carbs on My Fitness Pal and I think I’m managing to see some trends.  I’ll keep my blog updated on that one and I have an appointment at my brand new diabetes clinic at the end of the month so I will hopefully do a wee blog then to say how it all went.

And remember, the next time you have a hangover – you will live – complain as much as you like, but if you’re around me, try not to mention your sugar levels!

Diagnosis

Here is one of my old blog posts on diagnosis.  Update – I now know my diaversary (July 24th, 2002)

I wasn’t sure how to start blogging about diabetes but I suppose the beginning is as good a place as any…  I was about 8 when I was diagnosed, although unlike most I don’t know the date of my actual “diaversary”. I need to try to find this out at my next clinic. Maybe I could try to use it as an excuse for presents!

This is me and some friends before I got ill. I'm the nurse!

This is me and some friends before I got ill. Ironically I’m the nurse!

I had been ill for months and months. I looked scarily thin and still, to this day, I don’t like looking at photos of myself at that age. My poor mam had been tripping me back and forth to the doctors. It, shockingly, took 3 different doctors and Mam actually asking for a diabetes test before I was diagnosed. I remember in the days leading up to get the test done, she explained to me all about type 1 diabetes (not that we focused on the type 1/type 2 distinction at that time – very different story now). I think she almost knew, and was trying to soften the blow for me. She must have told me about exercise putting blood sugars down and sweet things putting them up because I can remember turning down juice my dad bought me the day before and cycling frantically in and out my road… trying to cheat the test!

I think this is when I'd started losing a lot of weight but certainly not at my worst.

I think this is when I’d started losing a lot of weight but certainly not at my worst. (on the right)

I can’t actually remember getting the test anymore but what I can remember is when the results came. I was playing at my house with my best friend at the time, Becky. We were supposed to be having a sleepover. Mam came in and said she had “a story to tell me”. I don’t know if it was the way she said it but I just knew. I had diabetes. That’s one of my most vivid childhood memories.
I ran upstairs crying, locked myself in the bathroom and refused to come out. I had to go into hospital that night. I’m not really aware of Becky leaving or me being coaxed from the bathroom!

The next thing I remember is arriving at hospital… I got about 10 injections and drips etc. (no biggie now!).  I’m from Shetland, which is a beautiful group of islands, very far North of Scotland. At the time I think there were only 14 other children there with type 1 diabetes, so the next day I was flown to Aberdeen Royal Infirmary. I was really really upset by the idea when I found out but when I got there I had a great time!  I was on a children’s ward with playworkers and got to do arts and crafts, play games and stayed up late with the older children to watch the Big Brother final. My mam had already gone to bed then and I remember feeling like a little rebel.

This is Chubby, the teddy I got from Nanny when I was in hospital.  I made him diabetic and injected him for a while too!

This is Chubby, the teddy I got from Nanny when I was in hospital. I made him diabetic for a short while and injected him for a while too!

Of course it wasn’t all fun and games. I had to learn all about injecting myself, food, doses, hypos, hypers etc etc. I even had to skip breakfast and run round the hospital to learn what it was like to feel hypo, which is when your blood sugar is too low!  I can remember being asked the same sets of questions over and over by lots of different staff, one of which was “are you feeling a lot better now?”  The strange thing was, I had become so used to feeling that way, I didn’t realise I was ill.  I didn’t even know what it was like to feel hungry or thirsty.  I kept saying “I felt fine” which annoyed my poor mam I think because I was so drastically ill but I made it sound like she was exaggerating everything!  She told me I used to come home from school crying because I was so tired.  I never even thought of how hard it must have been for her at the time.  I suppose you don’t at that age.  My dad was in hospital too then, so she was all alone trying to comfort me and I just thought she was wrong for taking me to the doctor in the first place!  She has told me since then though that she was actually relieved when I finally got a diagnosis because she thought I was going to die.  I can’t even imagine what that must have felt like for her.

So although I was devastated at the time, all I was actually dreading was injecting myself. I now know that doesn’t even come into my top 10 hardest things about diabetes but at the time it seemed like a huge deal.

I’ll end this post with the 4 Ts… Diabetes UK focus on children in this but remember adults can be diagnosed with type 1 too.

What are the 4 Ts?

  • Toilet
    Going to the toilet a lot, bed wetting by a previously dry child or heavier nappies in babies
  • Thirsty
    Being really thirsty and not being able to quench the thirst
  • Tired
    Feeling more tired than usual
  • Thinner
    Losing weight or looking thinner than usual

By making sure children and young people get a quick diagnosis and early treatment, we can avoid them becoming seriously ill with DKA.