What a Week It's Been!!!

Well, it's been a busy old week in terms of my Diabetes....

Last Wednesday was another session of laser treatment for Diabetic Retinopathy (which I did a huuuuuuge blog post on last week).  As usual, even though I have had quite a few sessions on both eyes in the last few years, I was terrified and got myself in a right old state beforehand.


Ever since the first time I had it done and I fainted I have had to have the anaesthetic injection in my eye before the laser session so I was quite prepared to have it done again, in fact, although it's not very nice and it involves them making a small cut in your eye ball, I would much rather have that than have to feel the pain / weird sensation that you get when your being lasered and risk fainting again so that they can't carry on and finish the session.  Anyway, the doctor, who I had never seen before (I hate they way it is a different doctor that does it every single time!!!) decided that she didn't want to give me the injection.  She said: "a lot of people tell me I'm very gentle with the laser" which didn't really make me feel any better but even though I said I really would prefer to have the injection she insisted that we would just "see how it went without it".....I was not happy at all and I started to panic even more.  To do the laser burns they have to shine an incredibly bright white light into your eye which always makes my other eye instinctively close, which then makes the eyeball that they are trying to laser move around....the doctor told me to try and keep my left eye open so that my right eye wouldn't move so I tried to explain to her that this is one of the reasons I always have the injection first so that it numbs my eye and it won't move during the lasering but all she said was "oh well".....Great!!


It didn't hurt too much for the first few burns but after about 5 minutes it got really sore and I started to feel faint and queasy so we had to stop....this happened another 2 times, by which point I was in a lot of pain (which can happen when you have had a lot of previous sessions) and felt very hot and sweaty and the room was spinning.  At this point she decided to stop.  I really did feel as though she hadn't done enough but knew that for her to carry on she would have to do the injection as I was in a lot of pain and she just did not want to do it.  I got the impression from the minute I walked in the room that she just couldn't be bothered doing the anaesthetic procedure for me.  I'm sure plenty of people can easily take the pain and discomfort of having it done but everyone is different and has a different pain threshold so I'm really not happy that she just fobbed me off and made me feel as though I was being pathetic!!!! Before she sent me off home she said "I've made a note that for your next  appointment you do need the anaesthetic doing first"......I do hate to say I told you so but....... 


Next time (31st August for my left eye) I am going to refuse to have it done unless they agree to give me the anaesthetic injection first and I do not want to see that same doctor again for laser treatment.


The next day was not nearly as horrible......it was my appointment at Stafford Hospital to start my insulin pump trial....how exciting!!! I was expecting to take 2 home for the weekend but when we got there we discussed the 2 types and decided that I would only take home the Medtronic pump.  We discussed how I had been getting on with the carb counting and how I had been feeling in general.  I have been having far less headaches than I used to, I am able to stay awake much later than I used to - I used to get in from work and could easily fall straight to sleep or go to bed at 8.00 pm because I was constantly exhausted and I have been having quite a few more hypos than I used to.  Before I went on holiday I had my HbA1c done and amazingly it had come down from 11.6 in March to.....wait for it......8.8!!!!!!! (For those not in the know already, the target they always tell you to aim for is 6.5 so I am getting there).  I am so pleased that it has come down by that much already.  I did expect it to have come down but not by that much (it might not sound like much but in terms of HbA1c results every 1% counts a hell of a lot).  This reduction would explain why I have been feeling less tired and been having less headaches.  See below for a description of what the HbA1c test actually is........


HbA1c Tests
The HbA1c test, indicates your blood glucose levels for the previous two to three months.  HbA1c (glycosylated haemoglobin) is a measure of the amount of glucose attached to the body’s red blood cells; it is present in everyone. The level of HbA1c in your body rises and falls in line with your blood glucose – the higher your HbA1c, the more glucose is attached to your red blood cells.   

Your HbA1c does not change rapidly because the red blood cells in your circulation last for around 3–4 months. Any increases and decreases in your HbA1c will happen over a period of at least 6 weeks. An HbA1c test is not the same as a blood glucose test. Your HbA1c test may be done using a blood sample taken from your arm or from a finger prick test.

HbA1c Targets
For most people with diabetes, the HbA1c target is below 6.5 per cent, since evidence shows that this can reduce the risk of developing diabetic complications, such as nerve damage, eye disease, kidney disease and heart disease.

Individuals at risk of severe hypoglycaemia should aim for an HbA1c of less than 7.5 per cent. However, any reduction in HbA1c levels (and therefore, any improvement in control), is still considered to have beneficial effects on the onset and progression of complications.

HbA1c Results
HbA1c results are currently given as a percentage. However, the way in which HbA1c results are reported in the UK is changing. From 31 May 2011, HbA1c will be given in millimoles per mol (mmol/mol) instead of as a percentage (%).  To help make this transition as easy as possible, all HbA1c results in the UK will be given in both percentage and mmol/mol from 1 June 2009 until 31 May 2011.

This new way of reporting results will just be a different way of expressing the same thing. For example, the equivalent of the HbA1c target of 6.5 per cent will be 48 mmol/mol. The fact that the number is higher does not mean there is more glucose in your blood.

So anyway, back to the pump trial....I had a quick practice with an infusion set for the Medtronic pump and then once we had had a look through the menus on the pump screen I was given all the bits of kit I needed to take home with me for the weekend.....infusion set, saline, alcohol wipe, infusion set inserter, the pump, reservoir for the insulin (saline for the trial) and off I went.

We decided to go to my Mom's to set up the pump and put in the infusion set so I could show her how it works (I was dying to show off my new "toy").  I had a bit of a 'faff' with drawing up the saline into the reservoir but after that it was all plain sailing and I did my very first insertion all on my own.  I was really surprised just how painless it was and then during the evening I was surprised that I managed to forget it was even there!!!!
 
Spending our first night sharing our bed with the pump was fine apart from me rolling on it a few times as the one I had on loan did not have a waistband clip on the back and I couldn't attach it to my PJ's.
 
On Friday I loved showing off the pump to people in my office and explaining all about it which has earned me the new nickname of "the bionic woman".
 
I had a bit of a play around with the menus over the weekend and gave myself "fake" doses of saline but that part of it (setting the basal rates etc. etc.) will be explained to me at the training on 9th August.
 
The only two minor "freak outs" I had were when I was in the shower and the pump was disconnected from the infusion set.....I knocked the infusion set a couple of times and for some reason that really made it hit home that I will have one of them in my stomach forever from now on.  For some weird reason I found it stranger to look at it when the pump was disconnected from the infusion set/my stomach and all that was left was the device lodged in my stomach...I'm not sure why this made me feel so strange but I guess it's just all part of getting used to this new "part of me" and my new way of life.
 
When I took the pump off on Sunday morning I immediately felt "lost" without it which I think must be a good sign as I must admit the part I had been mot worried about was getting used to being attached to something "alien" for the rest of my life so if I already feel lost without it that can only be a good indication that I will soon get used to that side of it all.
 
All in all the trial went really well, much smoother that I expected, and I am now really excited to get started on my own pump and start to learn all of the more 'technical' aspects of using the pump.  The trial was more about getting an idea of how it will feel to actually wear the pump. 
 
Today I contacted my DSN at the hospital to let her know that it went well and that I would like her to go ahead and order my (bubblegum pink) pump from Medtronic!!!!
 
http://www.medtronic-diabetes.co.uk/product-information/paradigm-veo/index.html
 
I can't believe that this time next week I will be "connected" and I will be a member of the "insulin pumping community".  I am so grateful for all the help I have had from my DSN's at my GP's in getting me referred, from my dietician at the hospital, from my new consultant and from my new DSN at the hospital.  It has been a very short "journey" from injections to pump and I really do appreciate how lucky I am to have even got funding for a pump, let alone get one so quickly.
 
All that's left for me to do now is think of a name for my new pump :o)
 
ROLL ON MONDAY 9TH AUGUST!!!!!!! 

Dates for your diary.....

One simple but essential tool for managing diabetes is.....a diary!!!

Admittedly, as some of you will already know, I (stupidly) chose to ignore my diabetes for many years which included not going to hospital appointments but now I'm making up for it and I've got appointments coming out of my ears....

April 28th 2010 - First appointment at my new hospital (Stafford General) with my new dietician - When discussing the pump with my DSN (Diabetes Specialist Nurse) at my GP's I was told a couple of things about my usual hospital (New Cross, Wolverhampton) and the way that several patients she had referred for pumps had been treated so she suggested that I try Stafford Hospital instead as people seem to have more success there......that was all the persuading I needed to ask her to refer me to Dr. Coates at Stafford!!! The first lesson in carbohydrate counting with Mina, the dietician, went really well. I must admit I came away slightly daunted by this brand new way of doing things and more than a little bit nervous about getting it wrong.  In order to get an insulin pump you need to be competent at carb counting so that you can give yourself the correct doses via the pump.  I'm now keeping two diaries, one for appointments and as of 28th April, a food diary too!!!

May 13th 2010 - First meeting with Dr. Coates at Stafford Hospital.  I certainly wasn't expecting a "yes" or "no" answer from him today about whether I could have a pump or not but that is exactly what we got....a big fat "YES".....fantastic!!!!!!! We discussed various things about insulin pumps and the motivation and commitment needed as there is a lot of hard work involved at the start.  I also met Gill who will be my 'pump nurse'.  I really couldn't get over the fact that I got an answer so quickly, especially after some of the stories I have heard/read about the real fight that people have had on their hands to get funding for one.  I realise just how lucky I am to be accepted for a pump and am extremely grateful to Dr. Coates and his team for giving me the opportunity to try a pump and get on top of my diabetes.

June 10th 2010 - The scariest appointment by far....the eye infirmary.   As you probably already know, I have diabetic retinopathy and have had a lot of laser surgery for it in the past.  At my last check up in January the consultant said everything was fine and that I didn't need any more laser treatment....today however, was a different story.  I had kind of guessed that something was going on with my eyes again and that I would need more laser but of course, secretly hoped that they would say everything was fine.  The consultant said the 'streak / shape' I had in my vision on Sunday night was another bleed in the back of my eye and that new blood vessels have started to form in both eyes and starting to leak and therefore I need to have more laser treatment in both eyes.  I thought if I needed any it would be in the right eye but hadn't expected to have to have some in both.  I will have the right eye done first in about 6 weeks time.  Going to try my best not to worry about it too much......for now anyway!!!

June 17th 2010 - This one is an insulin pump forum meeting I have been invited to by the hospital.  I think it will be really interesting as I will be meeting people who are already on pumps....can't wait until I'm one of them!!!! :o)

June 19th 2010 - Lee and Claudia's Challenge.....although we can't be there in person I will be supporting them 'in spirit' and wearing blue in support of what they are doing!!! Wish we could be there to meet Lee, Angela, Claudia, Sarah, Roxana and all of the other wonderful, inspirational friends I have made recently in the DOC (Diabetic Online Community).  Wishing you all the luck in the world guys!!!

June 22nd 2010 - Opticians.  This is just a general sight test so nothing to worry about, unless I need new glasses, in which case finding the money will be a worry!!!  :o)

June 23rd 2010 - Second appointment with dietician, Mrs. Crisp (that still makes me chuckle - great name for someone working with food).  This one is going to be a group session which will be good.  Would also like another one on one appointment with her though as I haven't been told about correction doses yet and still have quite a few questions and I don't want to take up the entire group session with my questions!!

June 24th 2010 - First appointment with Gill, my insulin pump nurse.  I'm really quite looking forward to this one as it will be my first opportunity to really find out exactly how a pump works and probably actually get to handle one.  She did tell me that initially she will be telling me all of the negative points about insulin pumps to see if I think I can cope with them and if I still think a pump is for me.  I have done quite a bit of research and think I am definetly ready for the negatives because as far as I can see they are far outweighed by the positives!!! I already have a list of questions to ask which I'm sure I will be adding to before the 24th!!!

June 29th 2010 - First meeting of the group MyD, set up by Siobhan....can't wait to meet up with Siobhan and other diabetics as I've never really met any fellow suffers of the big D before.  Will be really interesting to talk to people about their experiences.

Other things coming up this year include my sponsored walk for Diabetes UK on 12th September and possibly arranging to meet up with the people mentioned above in Birmingham some time this summer.

Also, thinking of all the other people out there who have had diabetes related appointments today (Lee and Angela/Claudia) - despite the bad news, frustrations, wanting to bang our heads against the wall etc. etc. we are all able to support each other, offer advice and kind words which keep us going.....until the next appointment that is!!!  :o)

Eyes and Lows

Scary couple of days what with eye problems and hypos.....

Sunday night went to bed and suddenly noticed a weird shape/streak across the corner of my vision in my right eye.  This might not have been quite so worrying if I hadn't got proliferative retinopathy.  Retinopathy is a complication of diabetes, which as you may have guessed from what I've already said, affects the eyes, in particular the retina.  There are initially no symptoms but if it is left untreated it can lead to partial and eventually total sight loss.

Diabetic retinopathy is a common complication of diabetes and is the leading cause of blindness in adults under 65. It is estimated that 25% of people with type 1 diabetes will have some degree of diabetic retinopathy five years after their symptoms first develop.  (www.nhs.uk)

Retinopathy is caused when the blood vessels in the retina become blocked or leaky, or grow haphazardly, which can damage the retina and prevent it from working properly. (http://www.diabetes.org.uk/).  There is some really good information on the Diabetes UK website about retinopathy.... http://www.diabetes.org.uk/Retinopathy---is-your-vision-at-risk/

What is Proliferative Retinopathy? In this condition very small blood vessels grow from the surface of the retina.  The retina is the film at the back of your eye and the tiny blood vessels are capillaries. These growing blood vessels are very delicate and bleed easily. Without laser treatment, the bleeding causes scar tissue that starts to shrink and pull the retina off, and the eye becomes blind. Laser treatment prevents blindness, but often some vision is lost. If you have had diabetes for years your retinae may develop this condition. As the retina is damaged by diabetes, the diseased retina releases special growth chemicals. These chemicals make tiny blood vessels grow: these are called 'new blood vessels'.  http://medweb.bham.ac.uk/easdec/proliferative.html

I was first diagnosed with retinopathy roughly three years ago and since then have had extensive laser surgery on both eyes.  At my last check up in January of this year they said that I didn't need any more laser as there hadn't been any further changes to the backs of my eyes and they had already done the maximum amount of laser "hits" that they usually do (about 3000 per eye).  My next appointment for a check up is this Thursday. 

I have had one of these "shapes" appear in my vision only once before, two days into our holiday in Goa in November 2008, which as you can imagine, was great fun!!! I made a frantic call to my local eye infirmary in the UK who advised that I get it checked immediately!!! I can't even begin to describe how terrifying it was to have to try and navigate the Indian medical system.  Anyway, that's a different story....

This time I was a bit less paniced as I'm only 10 minutes from the eye infirmary, not a ten hour flight away!!! It wasn't as pronounced as the last one in Goa so I decided to see how it was in the morning.  I have been getting a few blurry vision 'episodes' where everything seems a bit out of focus and also a few spots in my vision, (see the picture that goes with this post for a better idea of what I mean), which come and go and I have put that down to the dramatic change in my blood sugar results.  When I saw my consultant (the wonderful Dr. Coates who said I could have the pump) he said he didn't want my hbA1c to decrease too quickly once I get the pump as it could affect my retinopathy so I'm guessing that as I've got better levels than I've ever had before it is having some affect on my eyes. 

Monday morning and the shape/streak had faded a bit so I 'ummed and aahed' for ages about whether to bother going to the eye infirmary A & E or not. I decided to go and get it checked but by the time I had got myself showered and ready it had more or less faded all together and I decided to leave it until my check up on Thursday, unless it comes back.

I think that this time they will say I need to have some more laser done, obviously I'm just guessing but what with the recent blurriness and the 'streak' I got on Sunday night it looks as though there may be some changes going on in the back of my eyes (particularly the right one).  But we'll have to wait and see......

Another scary thing today, I tested my sugars mid afternoon and it was 4.1 but it felt much lower so I grabbed a glass of milk.  Less than ten minutes later and I felt awful, sweating, weak, confused, blurry vision etc. etc. so I tested again and it had gone down to 2.8.  By this stage I could hardly hold my own head up so Gareth had to get me some chocolate and more milk.  It was really lucky he was here with me as I don't know what I would have done otherwise.  I couldn't get enough of the funsize Milky Way Magic Stars and no sooner had Gareth opened a packet for me I was demanding the next one (there's the stroppiness that accompanies a hypo - poor Gareth).  As soon as I started to feel a bit more human, I got the usual shivers and felt freeeeeeezing cold (it was then I issued my demand for a duvet!!!) and wanted to do nothing but sleep.  This was a particularly bad hypo for me as I don't think I can remember a time when I have dropped so quickly and I can't remember being as low as 2.8 for a long time.  I can usually feel it coming on in plenty of time to get myself some glucose tablets or chocolate, but not today!!!

Anyway, I'm feeling ok again now (although my sugars have gone up to 12.3 and then 16.6)......but don't tell Gareth I'm feeling better because at the moment I've managed to get out of walking the dogs!!! Hypos are good for something after all......He he he!!!  ;o)

Testing Testing 1, 2, 3............4, 5, 6, 7, 8, 9, 10

OMG,I actually have marks on the ends of my fingers from the amount of testing I have been doing.......now that really is unheard of for me, never in my 19 years as a type 1 have I seen any marks from testing (The photo is a box of lancets which are the delightful little things responsible for finger pricking and causing the lovely "pepperpot" look to the end of my fingers!!!!)

Since Monday I have tested my blood sugars 23 times......Monday I did 6, yesterday I did 10 and today I have done 7.......so far.  This is more than I used to do in an entire month (or sometimes 6 months!!!).  In the last month or so since I made the decision to sort myself out I have tested on average 6 to 8 times per day, sometimes more  - so why this sudden turnaround?? The promise of a pump can do funny things to a girl.
It's been a looooooong time coming but being told I can have an insulin pump has really made me pull my socks up and focus on what I need to do, i.e. learn to carb count and learn to see patterns in my sugar levels so I can get the insulin ratios correct. I'm still pretty new to all this and have only had one appointment / carb counting 'lesson' with my dietician (the aptly named Mrs. Crisp) so far. I have been told that once she is happy that I am an 'expert' carb counter I will be able to actually get the pump and have the training on how to use it with my pump nurse, so I am determined to get the hang of it all as quickly as physically possible.
In the past I have either not bothered testing or if I have, I have just tested, written the result down in my monitoring diary and then forgotten about it, now however, I am actually trying to see patterns in the results that I'm getting - not that there's often a clear pattern at the moment as things are still quite up and down but the basics are there. I'm thinking this may be something to do with the fact that my levels have been running so high for so long that it will take a while for things to settle down (I hope its as simple as that anyway).
Another major wake up call for me has been the diagnosis of proliferative retinopathy.  ("Retinopathy affects the blood vessels supplying the retina – the seeing part of the eye. Blood vessels in the retina of the eye can become blocked, leaky or grow haphazardly. This damage gets in the way of the light passing through to the retina and if left untreated can damage vision" - http://www.diabetes.org.uk/ - more about this in a future post).  Hearing the news that my eyesight is failing was the kick up the arse I so badly needed to finally make me do something about my diabetes instead of pretending it doesn't exist - obviously this includes actually testing my blood sugar levels and reacting to whatever the result may be rather than just testing for the sake of it (or not testing at all).
Ok, so back to testing itself......it's not exactly a fun pastime and it can make your fingers really quite sore at times, as I'm only just finding out, but it is such an important part of treating diabetes. I feel like a bit of a hypocrite writing that to be honest as I've not exactly been what you would call a "good diabetic" over the years.  It's almost as if my eyes and ears have been closed for years and now all of a sudden I'm seeing the bigger picture and realising that this thing isn't going to go away no matter how much I try to ignore it. It is a serious condition and it needs a serious amount of commitment from those of us who have it. I know it may all sound a bit like it's too little to late in my case but I really do want to try and reverse some of the damage I have no doubt done to my body over the years and also keep any further complications as far off in the distant future as I possibly can.

P.S. All good results today apart from a couple of highs this morning (although these are actually not that high for me) of 13.8 and 11.3, then it all came good with 6.4, 7.3, 4.4, 4.3 then went a bit too low around dinner time with 3.3 which I put down to the hot weather.  Had a couple of mini cadbury's creme eggs ("YUM") and my dinner so we'll see later on what that's done to my levels.

Ooooh, and I have finally got me a sharps container for the first time ever - bit of a sad thing to get excited about but all these things are little steps towards getting things under control and sorted out!!!!  :o)