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

New clinic, new me?

Yesterday I went to my new clinic for the first time. I recently moved from the city centre to Partick and so, when I went to my new doctor’s surgery, the GP said I could move my diabetes care from Stobhill to Gartnavel and I jumped at the chance.
There was nothing bad about my old clinic, but they had so many doctors that it was common to have a different endo every time. This meant a feeling of starting again on every visit. My HbA1c has been too high for years – almost as long as I can remember, definitely since around 4th year of high school – and so I need support from the clinic but with each doctor comes a different approach. I also didn’t like the fact that none of them knew me, even if I had seen them before.
My second problem with it was that if I phoned to change an appointment, I wouldn’t get another for months.
Thirdly, I always had to wait for hourssssss. No exaggeration – it was at least a half day event.
Fourth, and finally, it’s a bit of a trek.

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So yesterday, I left the flat with a positive attitude and followed Google Maps on a nice wee walk to Gartnavel. Thankfully, I arrived quite early as I was in 3 different hospital buildings before finding the diabetes centre. Although I arrived feeling positive, diabetes waiting rooms can be quite a bleak place. This is probably not everyone’s experience, but I often feel like most of the patients look really ill and immobile which can be pretty soul destroying, as if it’s a glimpse into the future.
I got my weight and blood pressure checked (all fine) then got my bloods done before returning to the waiting room. A 20/30 minute wait later (much better than before!) I met my new endo, Dr Small. And what can I say? Great name, great doctor. My referral to him simply said, “Donna has moved address, please look after her.” which seemed to annoy him but for me it was a lovely clean slate. He asked about my job, uni etc and then a bit about my diabetes.

Your HbA1c represents your average blood sugars and a high result, aside from making you feel ill, exhausted etc on the short term, is what leads to long term complications associated with diabetes – kidney failure, loss of eye sight, neuropathy, loss of limbs etc. My HbA1c was 10.5% which is about 90 in the new measurement OR an average blood sugar of 14mmol. A person without diabetes’ HbA1c should be 4-5.9%. A person with diabetes should aim for around 6.5-7.5%. This was up since my last clinic but came as no surprise.

As he discussed the reasons behind this, how I controlled my BGs (blood glucose) and what approach I wanted to take, I struggled to hold back the tears. He said something that really rung true with me… He said that because he was a diabetes specialist with years of experience and more knowledge than most about diabetes, insulin, carbohydrates etc., that he could carb count excellently, figure out his dosage and insulin ratios perfectly and achieve perfect blood sugar (so he thinks, maybe not QUITE true since there are so so so many variables). But then he said that he could only do this for about 4 days before he got too frustrated with it. 🙌🙌🙌🙌 YESSS DR SMALL – nailed it! It’s so emotionally and mentally draining. That’s what’s truly the hardest part.

So next steps… He asked if I’d been on a DAFNE course (dose adjustment for normal eating) and I explained how I really wanted to do it but had been on the waiting list for years. He introduced me to a diabetes nurse and assigned me a dietician. I was then told I could go on course called DICE instead (diabetes – insulin and carbohydrate education). DAFNE is a 5 day course whereas DICE is two days. I am now signed up to a place on the DICE course in February!! Amazing, after being on a DAFNE waiting list for years!

My main step is strict carb counting using one of these…

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I’m weighing everything, recording it all in the diary, figuring out carbs with the use of My Fitness Pal, calculating correction doses, then testing two hours later to check if my insulin:carb ratios and correction units were correct. This will take a lot of analysing, effort and commitment but I’m feeling ready! Let’s do this!!

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