The 20 Year Anniversary Posts - My Mom's Perspective

As some of you will know the 24th of this month marks 20 years since the day I was diagnosed with Type 1 Diabetes. 

I had planned to do a charity skydive for the Juvenile Diabetes Research Foundation (JDRF) to celebrate the occasion but as I've been diagnosed with Carpal Tunnel Syndrome my GP refused to sign my medical consent form so instead I've gone for the slightly less exciting option of doing a series of blog posts about my diagnosis and what's happened since then.

The first post is by my wonderful Mom, Lynda........ x

24th May 1991 - The question I was dreading - "I won't have to have an injection will I?".  We were on our way to hospital to have the GP's diagnosis of Type 1 Diabetes confirmed.

How do you explain to your 10 year old daughter that she would have to inject herself for the rest of her life?


Rebecca had always been terrified of injections since being in and out of hosptial with asthma attacks since the age of 4 - any attempt to take blood was an absolute nightmare!

I had suspected Diabetes when Bec developed an incredible thirst and was up constantly in the night to go to the loo, she had also lost a lot of weight which I had originally put down to her age and possibly losing "puppy fat" (let me make it clear that she was NOT fat to start with - is that OK Bec?!!)  ;o)
She (we) spent 3 days in hospital, it was her Grandpa's birthday that day and her brother Daniel's birthday the following day so she missed both of these events. It was also a Bank Holiday weekend and not much information/help was available as the Children's Diabetic Centre was closed for the holiday.
Luckily the nurse who looked after Rebecca was Diabetic himself and he was a great help - he even had a hypo whilst on duty and came to ask Rebecca what he should do!
Bec learned how to inject herself and I was so proud as she made no fuss and just got on with it. her Dad and I had to learn how to inject too of course but to this day that is the only injection I have ever had to do as Bec has done it all herself.Bec learned how to inject herself and I was so proud as she made no fuss and just got on with it.  Her Dad and I had to learn how to inject too of course but to this day that is the only injection I have ever had to do as Bec has done it all herself.

We had a huge amount to learn and spent hours at the supermarket reading all the ingredients on packets and tins - it was ridiculous but we were so frightened about getting it wrong!

Diabetes comes with an amazing amount of "stuff" which fills cupboards and fridges - syringes (in those days), insulin, blood testing monitor and strips, Glucagon etc. etc. and one person's comment of "Oh well you can control that can't you?" still fills me with rage - You try it!!!
Life continued and we had great support from the diabetic team at our local hospital - Consultant, Janet Anderson and DSN, Gill Salt in particular but Diabetes is constantly there however much you try to carry on as normal.

Then Rebecca became a TEENAGER and denial set in! She became less dependant on me and it was difficult to monitor her eating habits when she wasn't at home (and even when she was to be honest!).
She wasn't monitoring her blood sugars regularly and found it hard to be different from her friends.
Chocolate became almost an addiction and I would find sweet wrappers hidden in her room (yes - I did search her room).  On several occasions I filled a carrier bag with them!
It was a constant battle and no amount of reasoning, shouting, crying or pleading made any difference - I could do nothing and it hurt.
 I have always wished it had been me and not Rebecca with Diabetes but no more than at this time. She should have been free to be a teenager and not have to cope with this horrible condition.


20 Years On........
Rebecca has now finally realised what having Diabetes means to her health and is doing her best to turn this around - she has written about all the problems she has so I won't go into that.
 She knows she cannot turn the closck back and undo the damage but is working hard to improve things and got funding for an insulin pump in August 2010.

She has adapted to this amazingly well and although it is not ideal to have something permanently attached it does seem to have had a positive effect on her blood sugars and her HbA1c is coming down.

I think the Diabetic Online Community (DOC) and her blog have helped her enormously - so thank you to all of you out there who have been supporting her.

While I am doing "thank you's" - feels like an award ceremony! - Thank you also to my wonderful parents for always being there and running Bec to hospital appointments etc. when needed, it helps a lot!!
Also to her partner, Gareth, who has also been a big support particularly when she was agonising about whether to go for the pump or not.


I think Poppy and Daisy (her 2 adorable Bichon Frise's) deserve a mention as it's impossible to be down with them around!

And finally.........Diabetes is only a small part of you Bec, I'm so proud of you and love you very much. xxxxxxxxxxxx

P.S. - New York City here we come - Let's hope we have no problems getting through customs with your pump!!!!! He he!!!  ;o)

Me, Rebecca, Poppy and Daisy





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)