Diabetes Blogs

The name was coined (very wittily I thought) long ago on another forum by TerryG and it's now applied universally within DSF to that species of GP's Practice Nurse "who sees the diabetics".  What gets into these women to turn them into Nursie Nightshade?  I'm sure any forum member would recognise the species.  The ones who try to insist that young diabetic women of child bearing age go onto statins, the ones who "discourage testing" because "it's bad for you and you don't need to know", the ones who are just plain ignorant and the ones who sneer at their patients as though they are either naughty children or dotty old folks.  Hba1c too high?  Oh naturally the patient is non-compliant, off munching copious bars of Cadbury's Dairy Milk the minute they leave the surgery.  Total Cholesterol too high?  Naturally the patient is spending every meal time wallowing in grease.  I could go on, but as I said before most diabetics know the type.  A comment from another member of the forum around the same age as myself regarding her nurse "she's horrible" turned my thoughts to my own last "diabetic review".  I thought I'd escaped and that my own nurse was of a better educated, more sympathetic variety, but since my last appointment I am none too sure.  Perhaps that's just a little unfair, because she does seem to know a lot more about diabetes than a lot that we hear about in the forum. 

Going back to diagnosis she was very helpful and nice.  Though I have always been somewhat annoyed that it was she who labelled me T2.  A label I now cannot shed as far as my medical records are concerned.  As far as I can see it was only pinned on me because of my age and has since precluded me from ever getting a DAFNE or similar course, even if they were on offer in this area, which they're not... but leaving that aside she was very good back then and was also very good when I wanted to change to basal bolus rather than mixed insulin.  Plus, when I once handed her a list of questions I wanted answered she was gracious enough to admit she didn't know the answers and referred me to the DSN at the hospital (who actually wasn't much use, but that's another story). 

No, what I find difficult is the implied criticism that permeated the conversation at my last review.  I thought we'd got onto a level of mutual respect, but perhaps it was just a veneer.  Back at my 2^nd Hba1c after my diagnosis she tutted and humphed about the result, which was 7.8 and yes, even ignorant as I was back then I knew it was "not good".  I couldn't understand it because I really had been sticking to the diet that the dietitian had told me I must stick to.  Maybe the odd lapse over Xmas?  So instead of saying "But that's ridiculous, I've really been trying to stick to this diet I'm told I must follow".  I just shifted uncomfortably in my chair, felt ashamed and said "Well, it is a bit close to Xmas and you know....." leaving the sentence trailing guiltily in the air.... Yes, of course it must be my fault! 

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In May this year I was concerned about the post prandial spikes I was having.  If I took enough rapid to iron them out I was going hypo later on before my Novorapid had finished working.  I understood that Apidra had a faster peak and less of a tail so I asked to change to Apidra.  My nurse was in agreement and prescribed me a box of five Solostar pens.  I checked specifically to ensure that the Novofine needles I was using were compatible with the Solostar pen and was assured that they were.

 

When I started using the pens I noticed a severe leakage when withdrawing the needle from my abdomen.  I had never noticed this with Novorapid flexpen or the Novopen 4, nor with Levemir pre filled pens (or indeed, previously when I was using the Optiset pen with Lantus).  I continued to use the Apidra Solostar pen for approximately three days, during which time my BGs were raised and by this time I was completely convinced that this was because I was not getting full delivery of the dialled dose.  I was, however, unsure as to exactly by how much the dose fell short.  I telephoned my nurse and after consulting with her I started on a fresh pen.  Just in case, I placed the original pen back in the fridge.

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There seems to be endless controversy surrounding the diet that is best for diabetics.  I read several forums but post mainly in one, with the odd comment elsewhere if I feel particularly strongly.  The main bone of contention seems to be whether or not to low carb and denigrating the advice so often given by NHS professionals to eat “starchy carbs with every meal”.  It causes endless dispute in online forums to the point that people argue and flounce and leave and get a tad nasty. 

 I subscribe to the “eat to your meter” brigade.  In other words “if a food doesn’t spike you then it’s fine, if it does then either don’t eat it or limit it”.  My meter is my best friend.  This is true of all diabetics, including those like myself on insulin only, but perhaps more so for Type 2 diabetics who have to rely to a greater degree on their diet for control.  So, after six years of listening to the same old stuff, why have I suddenly seen another aspect of the issue and why have I been moved to write about it?

 Perhaps because of a minor storm in a teacup that blew up fuelled by a DAFNE graduate who maintained that they could eat whatever they want whenever they want.  It wasn’t so much that statement that grated, because after all, that’s the whole premise of carb counting and DAFNE in particular.  No, it was the further presumption that those of us who like to have tight control live like a bunch of monks, getting excited about a lettuce leaf and denying ourselves any pleasure whatsoever in food, or indeed life!  It came as a bit of a shock, if for no other reason than I consider that I have always been something of a gourmet and that I recognise that I’ve never eaten better than I have since diagnosis.  My diet is so eclectic, embracing every cuisine from Britain to the Far East by way of Europe and every continent between.  The world provides my menu.  I like nothing more than trying out new recipes and new ingredients.  I look forward to planning a week’s meals, or more properly a weekend’s meals, when I have the leisure to experiment and the time to prepare things.  I can then freeze half the finished result to eat during the working week.  The only difference in being diabetic, as far as I am concerned, is that I look for ways to adapt the recipes to lessen their impact on my BGs.  It’s surprisingly easy, a tweak here a tweak there and hey presto, a diabetically friendly meal. 

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On Sunday we decided to have a little holiday.  We needed to dump some things at the local Council tip, so rather than take the train all the way to St Ives we took the car, dropped the broken scanner and dead microwave off, then parked in the park and ride to catch the train.  It's a lovely little train ride,  from Lelant Saltings on the very end of the Hayle estuary, right along the estuary and then it clings to the coast all the way to St Ives, revealing spectacular views of Godrevy Lighthouse and pale yellow sandy beaches melting into aqua seas (on a sunny day - which Sunday was).  We disembarked at Carbis bay, where the beach was packed with families, and then walked the 1.5 miles to St Ives along the coastal path.

Closer to St Ives there are some large and very beautiful houses with spectacular sea views.  The gardens of some lead down to the coastal path.  Amongst these houses (and small hotels) is Shun Lee Hotel which is owned by some friends of ours.  To be precise, it's a private house, but in their retirement they have started doing B&B and opened their conservatory as a restaurant.  The gate from the path was open and I saw our friend Terry taking a lunch order on their sunny terrace.  I stepped through the gate and waved.  Terry insisted we join him on the terrace for a glass of wine.

We sat looking at the wonderful view and had a chat.  The lady at the next table was on her own and she was very charming, so we were chatting with her too.  After a while Terry was called away and we continued to chat with Lauren.   During the conversation it came out that she didn't drive because, as she went on to explain, she was a diabetic and had nearly killed herself during a hypo.   So naturally we fell to discussing it and I was telling her about the forum.  She said that because she had lost hypo awareness she was afraid to drive now and also told me she was on a pump, which she promptly whipped out to show me.  I found it interesting since I had never seen a pump in reality, only pictures.  It was a bit bigger than I'd envisaged but nevertheless quite small enough to conceal in clothing.  Apparently once it got blocked and she didn't know and fell into a diabetic coma, it was only because her brother found her that she is alive today.  Scary stuff.  Before we left I gave her the URL for the forum.  Hopefully she will pop in and say "hello".

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Our social life seems to revolve around food.  Perhaps not the best "hobby" for a diabetic, but I've always been determined that diabetes will live with me and not the other way around.  I love cooking, always have, and I love entertaining, again, I always have.  So, one way and another we'll find ourselves regularly throwing out invitations on the spur of the moment and to be fair we receive lots of return invitations - all our friends seem to enjoy entertaining too.

A week ago at a girlfriend's birthday lunch we met up with another couple who we have known through her for some time and we always find their company delightful, so we invited them to come for dinner yesterday, along with the mutual friend and two other friends of ours who have quite a lot in common with them but don't know them.

Naturally as it was the first time we'd invited them to dinner I wanted everything to be perfect.  So planned a nice dinner.  When thinking about dessert I asked hubby "what do you suggest" and he responded that I'd not used the cook's blowtorch that he'd given me for Xmas and which I'd once said I really wanted.  So OK, Creme Brulee it is.  I then got online and found a recipe for White Chocolate Creme Brulee.  I'm a sucker for white chocolate so that's what I decided to prepare.  However, this concoction required the use of 9 egg yolks and I'm thinking "what do I do with 9 egg whites?"  Well the only thing that really came to mind was Pavlova.  Two really not diabetically friendly desserts.  Hey ho, I should have to be "strong" and just have a small white choccy creme brulee.  So I made 6 normal size ones and a tiny one on Friday ready to be refrigerated overnight and caramellised at the last minute.

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There are 4 chemists in town and two major supermarkets (well, strictly speaking the supermarkets are out of town... but I digress).  Until recently all 4 chemists and one of the supermarkets stocked Lucozade tablets.  Now, OK, I could use any number of things to treat a hypo but I prefer Lucozade tabs because I know precisely how much carb I'm taking and how much I need.  Also Lucozade tabs dissolve quickly unlike the horrible Dextrose things.  As hubby works in town and I work out of town I asked him to pick a couple of packs up for me in his lunch hour.  He came home with empty hands.... the three chemists owned by the Boots chain have stopped stocking Lucozade - they only stock Dextrose.  So I said "well never mind... we're going to Tesco now, we can pick some up there".  Wrong... Tesco have stopped stocking them.

I'm absolutely convinced that Tesco have it in for diabetics for a number of reasons. 

1. They took all the sugar free sweets off the shelf - a couple have crept back but they're not really what you'd want - Elderflower drops anyone?  Sound terribly medicinal and not at all something you'd want for a treat!

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I have recently spent 3 days on a training course with someone I know is T2.   I watched whilst they had two spoonfuls of sugar in their coffee (we had at least 4/5 cups per day) and whilst boiled sweets were handed round, and the biscuit tray.  Eventually unable to restrain myself I asked "when do you test your blood sugar?" to which they replied "Oh I don't, the nurse says I only have 'mild diabetes' not the serious kind, so I just see her every 3 months for a test".  (Eurgghhh what is this "mild diabetes"???  Is this the type of diabetes that won't progress if you don't control it?) So I asked "do you know what the results of those tests are?"  After getting past "fine" and with a little further probing they said "something like 6 or 7".

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Unlike a lot of people I don't recall being particularly depressed when I was diagnosed.

At the time I think I was relieved that it was diabetes and not, as I suspected at the time, something far worse.  I also had a lot of other issues on my mind then, primarily not wanting to miss a much looked forward to holiday that was booked with friends two weeks after D day.  In retrospect I'd have been better off missing it, but that's another story.

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Always times of uncertainty for me BG wise.  This one has probably been no better and no worse, except that we've not been catering for ourselves.  Usually in Europe we rent a house/cottage and eat out for lunch but cater for ourselves at dinner time - normally cut meats, salads, prawns, that sort of thing.  French restaurants aren't particularly noted for veggies, but somehow, I've not felt a lack because I've chosen our evening salad to include veggies I can eat raw.

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A while ago whilst trawling various links from various sites I visit keeping up to date with developments in the diabetic world I came across http://www.ukdrn.org/patients_involved.html.  So I thought, "nothing ventured, nothing gained" and applied to join.  I was emailed some forms which I filled in and returned and a while later started to receive their newsletters and invitations to attend various conferences and workshops.  Living in Cornwall, within a stone's throw of Land's End it's really quite a long way to travel to anywhere, so sadly I didn't think I could get very involved since a lot of the things seemed to be in London.  Even Exeter is a 2 hour minimum journey each way.  However, the last newsletter from Exeter had a piece about the Cornwall Diabetes Research Network based in Truro.  So I emailed the lady in Exeter who had sent the newsletter and asked if I could be put in touch with the Cornwall branch.  Eventually, after emailing, I was invited to telephone, which I did and the Secretary Natasha sent me some forms to fill in to volunteer to be part of the DARE study project.  Regretfully I can't find any info online, but to put it in a nutshell, it involves gathering DNA from diabetics and non diabetics and also some medical details about your diabetes, so that scientists can study the genes for various reasons.  

I filled in and sent off the forms and a few days later I got a phone call from Helen Chenoweth who is a DSN heading up the Cornwall Diabetes Research Network. We had quite a long chat and I told her about the forum.  She was really interested.  So to cut a long story short I arranged an appointment with her at the Royal Cornwall Hospital in Truro yesterday morning, firstly to have a blood sample taken for DNA  and answer further questions about my D... and secondly to have a dialogue with her about how I could help to move things forward in Cornwall regarding diabetic education and the subject of test strips for T2s.  

It was a very positive meeting from my point of view (though Helen may have thought I rabbited too much).  I really liked Helen.  First of all she told me about the project and how she heads the Cornwall office of the Diabetes Research Network and why they'd diversified into the provinces to do research instead of staying in the capital.  How they wanted to involve people etc.  Then we did the research stuff... had all the gumpf explained to me and signed umpteen consents.  Then she went through questions about my diabetes, during which we had quite a lengthy chat about "what type I am" and at first she thought T2 and then after several more questions she said "No, definitely LADA".  Then she said "but I'm not surprised that you got labelled T2, we've only really known much about LADA in the past 18 months"  Which echoes what I've heard said by my practice nurse and the local DSN I saw twice only.  Though I've known about it far longer than that... so I dunno.  She was impressed by my Hba1c and when we got to the questions about "how many hypos per week" she mentioned driving and did I know that you shouldn't drive for 45 mins after a hypo.  So I said yes, in fact I did know (thank you Sedge).  Then when we'd finished about what pills/other ailments I had she took some blood for a DNA sample which will be sent away and kept for 30 years for the scientists to inspect every time they decide to research something about diabetes and genes, she measured me and took BP which was 122/88 - not too bad.

We then had quite a long chat.  She does not believe in "starchy carbs with every meal" she thinks like we do... it's mad!  You shouldn't force feed carbs to diabetics and "everyone's different".  GOD!  This was so refreshing coming from a HP.  One thing she said was "I'm sorry that some practice nurses are still pushing out the starchy carbs diet, I don't know where they get it from and they should know better"  I was trying to keep a straight face and not beam at her!!! LOL!  I said, but do you know, the dietitian in West Cornwall I've seen twice told me to eat like that.   Between that and mixed insulin I put 3 stone on and it's awful hard to get it off, though I am doing slowly!

It was really nice discussing D face to face with someone like her.  She treated me like an equal and it was lovely.  We discussed BERTIE - she's a BERTIE trained DSN and does the courses with the pumpers.  We discussed how barking it was not letting T2s test and what a load of cods Andrew Farmer's study was.

During the conversation a nurse came into the room to get some dressings because she couldn't find large dressings elsewhere and had to dress someone's leg (Helen was really annoyed with her because the consultations are kept very confidential indeed).  Naturally 'cos this was in a diabetic centre I thought "leg ulcers" and when she'd left I said to Helen, but you know, if it wasn't for some of the people I still talk to now on the internet I'd be limping round with neuropathy and probably needing dressings myself.  So we got onto the forum and I explained how I'd found the newsgroup and then DI and how we'd started this forum and asked people who we knew were knowledgeable to join us and how it's grown, that our emphasis is on "support" and how people wonder in all angry and lost and how it's brilliant when they get control etc.  I gave her a ton of leaflets and cards and she's going to ask the head DSN to display them and she's giving the head DSN, Caroline, my telephone number and she will ring me and so I am now having lots of ideas about programs that could be put into place, like peer mentoring etc... and how to find funding.  It was very very positive!  Anyway, she said she'd enjoyed chatting, and said "I'm a bit of a diabetic anorak" and I laughed and said "I'm sure you've noticed, you're talking to another one" and said how hubby says it's my hobby!

She also asked did I have anything to test for ketones with, after I mentioned high BGs over Xmas and I said no... I'd have to get ketostix and she said "no no, they only tell you what was happening 2 hours ago" and was going to give me an Optium Xceed but I said I'd already got 2, so she said that I should ask for the ketone strips for the Xceed on prescription which I did this morning and got some.  She also said they were expensive, but you only need one prescription because they're foil wrapped individually and will last years.

It was really amazing because I've always felt so sidelined in real life regarding the diabetes!  Apart from the twice I've seen a DSN in 6 years, I only see the GP's practice nurse.  She is lovely and very helpful but I only get a 10 or 20 minute appointment twice a year, which does leave you feeling a bit out on a limb a lot of the time.  On the positive side it tends to make you very self reliant, but only if you're that sort of person.   If not then I think it could turn a lot of people off even taking any interest in their condition.

Finally, if anyone is interested in the DRN, please visit the link above and register your interest.  There are DRN organisations near to you.

Oh and in the post this morning came an invitation to two consultation workshops and I am going to try to attend the one in Plymouth on 3rd April... so if any Devon members feel like it?