Tuesday, 24 May 2011

The 20 Year Anniversay Posts - Diagnosis Memories

24th May 2011 - I need to start by saying I can't quite believe it has been TWENTY YEARS since I was diagnosed.  So much has happened in that time.....medications have changed, my doctors have changed but the biggest thing that's changed is my attitude to my Diabetes!!!

Like every Person With Diabetes (PWD) and every parent of a Child With Diabetes (CWD) the day of diagnosis is permanently etched on my memory. 

24th May 1991 was not only 'D-Day' (Diagnosis Day) but also my Grandpa's birthday.....I think its safe to sat that his Grandaughter being diagnosed with Type 1 Diabetes was not exactly the present he wanted!!! I will never ever forget being in the kitchen at home sitting on my Grandpa's lap with my Grandma sat next to us whilst my Mom was in the hallway on the phone to the GP.  That particular memory is so clear, it's as if it only happened last week!!! The GP told my Mom to take me straight up to the hospital as the blood test he had done when my Mom took me to see him about her concerns, indicated Type 1 Diabetes.  I had turned 10 years old the month before and life would never be the same again for me and my family.

As I'm sure most of you reading this will already know the main symptoms/warning signs for Type 1 Diabetes are: feeling very thirsty all the time, producing excessive amounts of urine, tiredness and weight loss and muscle wasting. These symptoms happen because some or all of the glucose stays in your blood and it isn’t being used as fuel for energy. Your body then tries to reduce blood glucose levels by flushing the excess glucose out of the body in the urine. Type 1 Diabetes is when no insulin is produced at all because the insulin-producing cells in the pancreas have been destroyed. Nobody knows for sure why these cells have been damaged but the most likely cause is the body having an abnormal reaction to the cells. There is nothing that you can do to prevent Type 1 Diabetes. This type of Diabetes is always treated with insulin injections / insulin pump therapy.

It was the combination of all of those symptoms that alerted my Mom to the fact that something was clearly not right with me and so she took me to see our GP.

I have several memories of how I felt before diagnosis, whilst the symptoms were taking hold of me. The extreme thirst is hard to describe - it's like you haven't had a drink for weeks....you could drink a litre of water and then half an hour later you need another and then another!!! I remember having to keep going out of lessons at school and taking gulp after gulp of water from the drinking fountain and then of course having to go out of lessons again to have a wee after all the water I was drinking. God knows what the teachers thought I was doing!!!! I can remember being so so tired, mainly I think, because I was up and down so many times to the toilet or to make more drinks during the night!!!

I also remember losing my appetite and never feeling like eating anything. I would just push my food around my plate and try to get away with eating as little as possible at every meal....this of course lead to weight loss. Photos of me around that time are quite shocking in terms of how thin I actually was.

Other than the memory with my grandparents in the kitchen and my Mom on the phone, I dont recall much more about the day I was actually admitted to hospital.  I'm sure my Mom and Dad have much clearer memories of that than I do.  I can picture the ward I was on and the bed I was in and the Diabetes Nurse who looked after me whilst I was there.  He was called Martin, was really funny and was a Type 1 Diabetic himself.  I suppose because he knew what it was like, he tried to make us newly diagnosed kids smile as much as possible!!

The day after I was diagnosed and admitted to hospital was my brother, Daniel's 7th birthday.  He was having a party at the local bowling alley and I wasn't allowed to go....gutted!!! I'd really been looking forward to burger and chips after the bowling!!!

First injection - I'm not sure how many days I'd been in hospital when I had to do my first injection but I can remember being understandably very scared.  I had always been absolutely petrified of needles so this really was my worst possible nightmare.  I had seen a TV programme a few weeks before about a Diabetic girl and I remember thinking how awful it would be to have to inject myself every day and now there I was having to do exactly the same!!!!  I've heard lots of people say they learned to do their injections into an orange before being 'let loose' on their own bodies but I didn't get to practice on any citrus fruit first, my first one was straight into my stomach!!

We were due to go on holiday just 3 weeks after I was diagnosed to Corfu, Greece.  Being 10 I was really excited and didnt think too much about how scary a prospect it must have been for my parents to be taking their newly diagnosed Diabetic daughter abroad for two weeks!!!! Thinking about it now, I have no idea how they did it but we managed and had a great time.  I wasn't restricted in doing anything and spent plenty of time in the pool having fun like a 'normal' 10 year old should!!! One memory is of eating a huge sugary do-nut and I'm sure my Mom, being so new to it all, must have been worried about what would happen to my sugars but as I was doing plenty of swimming it didnt seem to affect my levels!!!
 The worst hypo I can remember was at home, luckily.  I collapsed on the stairs whilst I was holding a pile of Christmas presents that I was about to take in to school for my friends.  I think I was about 11 or 12.  My Dad ended up having to inject me with emergency Glucagon while we waited for the doctor to turn up.  I was unconscious and couldn't swallow and so my Mom had to squirt Hypostop, as it was called at the time, into my mouth.  Again, I'm sure this was much scarier for my parents than it was for me!!!

Glucagon Kit
What is Glucagon?
Glucagon is a hormone (like insulin) produced by the pancreas which opposes the action of insulin. It is administered as an injection and can be given beneath the skin, into muscle or into a vein.

Glucagon is used in emergency situations for the treatment of serious hypo symptoms, including collapse and fitting and when the patient is unconscious.  Glucagon causes blood glucose levels to rise within 10-60 minutes after an injection.
I don't really remember too much about what happened just after my diagnosis apart from when I went back to school I had a white box to take with me which I'd been allowed to customise with lots of stickers which had Hypostop, glucose tablets etc. in it and it was given to the staff to keep in the medical room and i remember feeling really lucky that I always got to eat a fun-size Mars bar or Bounty before PE lessons!! 

I haven't really got many memories of how we all adjusted to our new way of life.  I suppose we, like all other families affected by Diabetes, just got on with it - what choice did we have!!  I'm sure there was more to it than that for my Mom and other close family though.The thought of going to the hospital for a check up with my consultant always filled me with terror.  I absolutely hated going there as a child.  Not much changed when I got older and started to go to the adult clinic!!! By the time I was in my mid teens I had gone completely off the rails in terms of keeping on top of my diet and testing my blood sugars so every visit to the hospital meant a telling off. 
My teens were a combination of denial, anger and frustration about Diabetes.  I pretended I didnt have anything wrong with me.  I didnt want to be different.  I stopped testing my sugars and I ate huge amounts of chocolate, the evidence of which I kept hidden, or tried to.  I won't go into all of it too much because that's a whole separate blog post for another time but I finally got the wake up call I so badly needed when I was diagnosed with Diabetic Retinopathy.  This is damage to the retina (the ‘seeing’ part at the back of the eye) and is a complication that can affect anyone who has Diabetes.  Retinopathy is the most common cause of blindness among people of working age in the UK.  It scared me into finally sitting up and taking notice of my condition......

I have gone from syringes and vials of insulin 20 years ago to cartridges of insulin in 'pens' with screw on needles, then disposable pens where the insulin was already inside with screw on needles and now I'm on an insulin pump. 

Over the years I tried different types of insulin, different regimes, starting on 2 injections a day, going up to 4 a day, back to 2, back up to 4, eating healthy diets, cutting out all chocolate and sweet things and nothing seemed to work. 

Now I have my pump, I can honestly say it is the best thing I have ever done.  I do have bad days or moments with it when I hate being 'attached' to it but overall it has completely changed my life and most importantly my HbA1c has come down from 11.6% to 7.6% in under a year.

There's always that fear in the back of my mind of what will happen in the future in terms of my eye sight and other complications that may arise but most of the time I try not to dwell on it too much. As long as I know I'm doing the best I can now then that's about as much as I can do!!! I do 100% regret neglecting my health so much during my teens but I can't turn back time no matter how much I want to so I just have to focus on the present and do my best. In the fairly near future we are hoping to start a family so it is essential that my HbA1c is as perfect as I can get it.  I need to make sure I'm doing everything I possibly can to minimise the chances of birth defects and things going wrong during a pregnancy.  I'm certainly on the right track with my HbA1c now so fingers and toes crossed that we get the healthy baby we want so much!!! :o)

Now for the thank you's.....

Firstly my Mom, of course, who has been there for all of it and put up with me and supported me when I was doing my very best to rebel against Diabetes.  It's only now I have some sense of how awful it must have been to watch me neglect my health and I am truly sorry for putting my Mom through that!!! Thank you for being you and not giving up on me!!! xx

Gareth, my other half...we have been together almost 5 years and he has been fantastic all throughout our relationship, particularly when I made the decision to go ahead with getting an insulin pump.  He has always shown a genuine interest in my condition and is behind me 100% and encourages me when I'm having a down day or when my sugars go haywire and I feel like giving up.  He has been a superstar when I've been suffering with eye problems and laser treatments!!! I appreciate all that you do for me!!! Thank you xx 
My grandparents for always being there for me and ferrying me to and from hospital and doctors appointments over the years and for always giving me a kick up the bum when I needed it to get me back on track!!! Love you both!! xx
 Other thank you's are for my brother Daniel, the rest of my family, my close friends, my work colleagues - all for putting up with me whinging and moaning and for always asking how I'm doing!!!!

Also, to all the people I have 'met'/been in touch with in the DOC (Diabetic Online Community)....you are all an inspriation to me, you support me and always pick me up when I feel like giving up!!!! Thank you all so much!!! xxHere's to the next 20 years!!!!  ;o)

Monday, 23 May 2011

The 20 Year Anniversary Posts - 20 Emotions Involved / Things I feel about Diabetes

Today's list of 20 is about the huge range of emotions and feelings I have or have had towards Diabetes and the various challenges of living with the condition.....

I'm sure pretty much everyone with Diabetes and/or parents of children with Diabetes has felt or thought these things about Diabetes regularly since their (or their loved ones') diagnosis.

I don't think they need any explanation, they speak for themselves and if you have Diabetes / have a loved one with Diabetes you will know what I'm talking about and that you can feel these for lots of reasons and in lots of different situations, not just at diagnosis.....

1.  Anger 

 2.  Tired

3.  Fear

4.  Hope

5.  Confusion

6.  Frustration

7.  Sadness

8.  Depression

9.  Elation

10. Disappointment

11.  Different

12.  Loneliness 

13.  Helpless
14.  Denial

15.  Grateful

16.  Guilt

17.  Regret

18.  Lucky

19.  Defeated
20.  Overwhelmed

Sunday, 22 May 2011

The 20 Year Anniversary Posts - 20 Things I Hate About Diabetes

20 things I hate about Diabetes - in no particular order!!!

1.  Blood stains on clothes after an injection - especially on a day when you're wearing a white top or you're in a rush to go out and have to quickly find something else to wear!!! Nothing major but its still an inconvenience!!! Finding blood smears on things when you think the finger you’ve just tested has stopped bleeding but its still going!!!!! Or when it's a hot day, you prick your finger and without even squeezing it the blood shoots out/up and sprays everywhere!!!

2.  Nervousness before a HbA1c result - even when you know you've done your very best and have been 'good' there's still always that sense of nervousness before you get your HbA1c result!!!! (Then again I suppose that makes the sense of achievement even greater if the result is good or better than you were expecting!!!)

3.  Affect it has on family members and loved ones – I hate that Diabetes causes stress to my loved ones and that they have to worry about me!!!

5.  Hypos and highs - Keeping your blood sugars on an even keel is so challenging and sometimes you get the extremes of a hypo (low blood suagr) or a hyper (high blood sugar).  These extremes can be very scary for both the person with Diabetes and their loved ones. 

The bruise and the cause of it (infusion set)!!!!!!
6.  Bruising from an infusion set - Not much I can say about this one apart from "OUCH"
 7.  Being constantly attached to a “machine” - I had my pump last August  and I will admit that even though I love it and appreciate that I'm lucky to have it, I do still have big issues from time to with feeling like a 'bionic woman' / robot with my pump attached to me!!! It's really not the most attractive look and not the greatest fashion statement I've ever made.  I do sometimes look at it with a sense of hatred when it's on the side in the bathroom and I really feel like not re-connecting it after a shower etc.  I guess that hatred is more about hating Diabetes as that is the reason I have to re-connect it, rather than hating the pump itself.....if thqt makes sense. I dont know if other people feel like that...I'd be interested to know how other pump users think. 

8.  Carrying supplies everywhere - sometimes I'd just like to be able to carry a small bag around with me instead of what seems on occasions like a small suitcase!!!! He he :o)

9.  Endless appointments at hospitals, physio, dieticians, GP etc.

10.  The devastating long term complications and the threat of what might happen in the future

11.  Not being able to eat a single thing without thinking about it first

12.  The 24 / 7 / 365 of it all - It's a constant numbers game and you are always in pursuit of perfection.  There's no break from it.....ever!!!

13.  Wondering what life would have been like without my constant companion

14.  Depression.....that's a whole other blog post

15.  Lack of awareness / incorrect reporting in the media / discrimination

16.  Pregnancy fears - I'm at the time in my life now where I want a family and I have been looking into Diabetes and pregnancy a lot....all I can say is its very scary!!!!

17.  Unpredictability – even when you do everything right

18.  Seeing the blue candles light up as the Diabetic Online Community's (DOC) profile pictures on Facebook – This is an indication that there has been another tragic fatality caused by Type 1 Diabetes.  We light the candles in memory of those who have died and their families.

19.  Sore fingers / the “pepperpot” look that develops on your fingertips after years of testing / being a human pin cushion….. forever!!

20.  Constantly trying to get the balance right for different situations - having to think before you do anything whereas other people just go ahead and do it!!! - how will the exercise I'm about to do affect me?, I'm feeling ill - will that affect my sugars?, I'm going for a 3 course meal - hows that going to affect my sugars? etc. etc. etc.
 This is obviously a pretty negative post - I actually think my list could be a hell of lot longer - but unfortunately that’s the way it is with Diabetes - there’s not really that much to love about it!!!

Wednesday, 18 May 2011

The 20 Year Anniversary Posts - 20 Essentials for a Diabetic - Part Two

So, here's part two of what I consider to be 20 essential things that you need to be able to cope with Type 1 Diabetes and all it can throw at you......

11.  An Awareness of Long Term Complications - As well as the day to day aspects of living with Diabetes there are of course the long term complications of the condition that are always in the back of your mind.  I will be the first to admit that I ignored the threat of some of these complications for a long time during my teens.  I was told about them numerous times as a child and as a teenager but denial caused me to force them well and truly out of my thoughts.

Some of the long term complications are as follows:
Neuropathy (Nerve Damage)
Nephropathy (Kidney Damage)

Retinopathy (Eye Damage)

The effects of these can be devastating, resulting in - in some cases - blindness, kidney failure and amputations.

As a young person it is very difficult to imagine 'the future', especially if you are a teenager with your whole life ahead of you and the consultant is telling you what can happen to you when you are 40 or 50......that's a lifetime away to a teen!!!!

I now wish with all my heart that I had paid more attention and listened to what I was being told....it got to the point where my DSN at the time was threatening to take me to a Diabetes ward at our local hospital to see what could happen if I didnt sort myself out.  It didnt come to that in the end as I was diagnosed with Diabetic Retinopathy and that gave me the harsh wake up call I needed. 

I think it is essential that all Diabetics know about the long term complications of the condition and unfortunately this may involve shock tactics in some cases.  If I hadnt been diagnosed with Retinopathy I think the only thing that would have made me sort myself out was seeing some of the horrors of what Diabetes can do if you dont pay attention to the disease. 

I did end up in hospital a couple of times, staying on a Diabetes ward, due to repeated UTI's and if I hadn't already started to take control of my Diabetes following my Retinopathy diagnosis, then these spells in hospital with older ladies who were going blind, had kidney failure and nerve damage to their stomachs and intestines, would certainly have shocked me into changing - it was extremely upsetting and made me wonder what damage I may have already done and whether it was too late to reverse that damage.

I'm not saying shock tactics would be appropriate in all cases and I know not all teens rebel against their Diabetes but I can speak from experience when I say that complications can and will happen to you if you don't take good care of yourself and do your very best to keep your sugars under control and it's no good thinking they won't so always keep them in your somewhere in your mind.....even if it's right at the back most of the time!!!

12.  A Diary - It doesn't have to be an old fashioned paper diary or calendar, it can be of the modern, electronic variety but I would certainly be lost without some way of making a note of all the appointments I have to attend......GP, hospital, consultant, DSN, physio, neurology, dietician, eye infirmary, laser surgery.....the list can sometimes seem endless!!!!

13.  Great Memory – For remembering the carb values of different foods, remembering to make sure you have the necessary supplies / spares / snacks with you at all times, remembering to make sure you have enough supplies/medications and to get your repeat prescription sorted, remembering to test your blood sugar, remembering the glycemic index of foods and so on......

14.  Organisational Skills - I have already kind of covered this one by talking about using a diary and remembering various things but you really do have to be organised and have the ability to multi task.  It's sometimes difficult and can get overwhelming to keep up the juggling act that is Diabetes but the only way to keep all the balls in the air and keep on track is to get super organised.

15.  Storage Space - Diabetics come with a huge array of 'stuff' and of course all of this 'stuff' has to go somewhere!!! The fridge of a Diabetic has a space reserved for vials of insulin / insulin pens and emergency Glucagon injections.....a cupboard or a large draw has to be dedicated to all things Diabetes.....blood testing strips and lancets, yellow sharps boxes, infusion sets, reservoirs, wipes for removing the sticky from infusion sets, glucose tablets, tablets for various Diabetes related ailments etc. etc.

16.   Standard Come Backs/Ability to 'Bite Your Tongue' - Sometimes it can get frustrating when people say things like "Can you eat that if you're Diabetic?" or "You must have eaten loads of sweets when you were little to get Diabetes?" or "It could be worse couldnt it?".......It can be quite useful to have some standard lines to come back with - these can vary depending on your mood at the time!!! :o)  I would tend to be quite sarcastic and say something along the lines of "Yes, you're right, my Mom fed me on a diet of only full fat coke and mars bars until the age of 10". 
 17.  Self Awareness - Over the years you will get to know your body and how your sugar levels are affected by different foods, exercise, illness, stress, periods etc. etc. - Of course sometimes no amount of practice and experience can second guess Diabetes and it can throw you totally off guard and do the total opposite of what you expect!!!

18.  Ability to Pick Yourself Up and start again when you’ve had a bad day / high sugar level / hypo / higher than expected HbA1c result or when things just dont go as you expected.

19.  Trust in your family and friends to be aware of hypo symptoms and to know what to do in an emergency, trust in the medical profession and trust in yourself in knowing what to do in certain situations and to trust your instincts/what ur body is telling you.

20.  Courage - It takes courage to do your first injection, it takes courage to do your first blood test, it takes courage to do your first infusion set change, parents of Diabetic kids need courage to do these things to their children when they are too young to do it themselves and it takes courage to watch your loved ones do these things to themselves.  It also takes courage to carry on doing these things time and time again when sometimes the last thing you want to do is stick a needle in yourself or walk around with a 'contraption' (insulin pump) attached to your body.  No matter how many years you have had Diabetes, I truly believe that every single injection, blood test, infusion set change takes courage.  You tell yourself and others "Oh you just get used to it" but I dont believe you ever really fully get used to it. - even after 20 years despite the fact that I just get on with it because I know I have to, I'm not "used to it" and never will be. Diabetes is a constant challenge and is always there on our backs to try and catch us out - we can only beat it with courage......and plenty of it.

Tuesday, 17 May 2011

The 20 Year Anniversary Posts - 20 Essentials for a Diabetic - Part One

Thought I'd try and stick with the 'twenty' theme for a few of my anniversary posts so here's the first list of 20 'D-related' things - Essentials for a Diabetic or a for Parent of a Child with Diabetes - some of the medication related ones are really obvious but others are more about some of the qualities that I think you need to cope on a daily basis!!!

 1.  Insulin - like I said, it's a really obvious one but this has got to be top of the list of essentials for a Type 1 Diabetic.....for those that don't know, Diabetes is a condition where the amount of glucose in your blood is too high because the body cannot use it properly. This is because your pancreas does not produce any insulin.  Type 1 Diabetes develops when the insulin-producing cells in the body have been destroyed and the body is unable to produce any insulin.

Diabetes UK's website describes the way insulin works as follows: Insulin is the key that unlocks the door to the body’s cells. Once the door is unlocked glucose can enter the cells where it is used as fuel. In Type 1 diabetes the body is unable to produce any insulin so there is no key to unlock the door and the glucose builds up in the blood.
Nobody knows for sure why these insulin-producing cells have been destroyed but the most likely cause is the body having an abnormal reaction to the cells. This may be triggered by a virus or other infection. Type 1 diabetes can develop at any age but usually appears before the age of 40, and especially in childhood.
R.I.P Pancreas

2.  Support - A Person with Diabetes (PWD) cannot possibly get through all the trials and tribulations that this life-long disease brings without a great deal of support from various sources. 

3.  Patience - Diabetes is challenging to put it mildly - You don't always get it right and things don't always go the way you expect them to blood sugar wise so having patience is essential in order to keep you sane!!! Basal testing can seem tedious and frustrating, sitting in hospital and doctors waiting rooms is boring, waiting to hear about insulin pump funding, hearing the media report things that are incorrect or that don't give the full picture, being confronted with discrimination in the workplace/school/life in general, having people say things like "It could be worse" or "You can't eat that can you?" ......these are just a few other D-related situations where you may require plenty of patience!!!

4.  Family and Friends - I guess this comes under the heading of 'support' but I truly believe that without fantastic family I wouldn't get through the 24/7 of it all.  Family and friends certainly have to put up with a lot, especially close family who see you go through it all every single day and have to put up with the tears, tantrums, frustrations, attend appointments, see scary hypos and hypers etc. etc. but they are also there to share the good HbA1c results and the happiness when things are going right!!!

5. The Medical Profession - Diabetes Specialist Nurses (DSN), consultants, dieticians and all the other members of the medical profession that we come into contact with over the years are essential cogs in the machine!!!  I have the support of a great team but I realise that this is not always the case so I know I am very lucky.

6. Sense of Humour - Diabetes is a constant roller coaster ride and a good sense of humour is essential for dealing with the ups and downs.  You have to laugh and try and see the positives otherwise you'd end up in tears all the time!!!  There are a great deal of negative things about Diabetes so its important to smile about all the small triumphs and grin every time you win the tiniest of battles against it.

7.  Blood Testing Kit - These little gadgets enable a Diabetic to see exactly whats going on with their blood sugar levels at any given time.  There are numerous types of test meter and I'm sure most PWD's have tried lots of different ones and probably even have a few spares at the back of a cupboard!! It would be very difficult to guess at how many times a Diabetic has to prick their finger, squeeze out a drop of the red stuff and transfer it onto a test strip during their lifetime but its a hell of a lot.  My blood testing meter (along with my pump) is now my best friend and is always with me.  I went through a long period of time when I left my kit in a draw and only took it out occasionally to write a few fake results in my monitoring diary.  That time in my life seems so long ago now and I cant believe I was so irresponsible.  Now I do at least 4 tests every day and the information helps me to keep things on an even keel and provides data on what certain foods and activities do to my sugar levels.

8.  Glucose Tablets - Not nice (I can only describe it as similar to eating chalk) but essential for treating hypos quickly and effectively!!! I currently use raspberry flavoured Glucotabs which are not great but are certainly the best of a bad bunch!!! I'll bet if you look round the houses of people with Diabetes you will find plenty of tubs / packets of glucose tablets!!! I have them in the kitchen, in the draw of my bedside table, in almost every bag that I own, in our car and in my desk at work!!!

9.  Strength - This is something that I bet most Diabetics / parents of Diabetics don't even think about because we all just 'get on with it' but if you do sit down and have a proper think about it all and what we put up with 24 hours a day, 7 days a week, 365 days a year then it will soon dawn on you that we are all incredibly strong.  This strength comes from inside us but also we draw on the strength of those around us to get us through it all.  When we are having a bad day or feeling down we can always rely on other Diabetics or family and friends to bring us back up to full strength again!!!

10.  Diabetic Online Community (DOC) - As most of you will know, I spent a long period of time throughout my teens in denial and trying to ignore my condition.  Since I saw the light and decided to pull myself together I have discovered the DOC.  I have already referred to family and friends and the strength we can draw from them when we are feeling down but the DOC is an invaluable source of support, advice and friendship.  I have made lots of friends in the DOC since starting my blog and since deciding to pay attention to my Diabetes.  No question is too silly, no moan is too much for people in the DOC and no matter how you feel you can always rely on someone to know exactly how you are feeling and there is always someone there to bring you back on track and put a smile on your face!!! I can honestly say I would be lost without the DOC and only wish I'd found it sooner!!!

Essentials 11 to 20 to follow.......  :o)

Monday, 16 May 2011

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

Wednesday, 2 February 2011

Getting back on the right track......

Another update style blog to get up to speed with things that have happened since my last proper post in November.......

I got my HbA1c result that had been taken on 11th November.....it had gone up slightly (as I had predicted it would) from 8.1% to 8.3%.  I have to say I was a bit disappointed, even though I had known it was going to have gone up. My DSN didnt seem to be too concerned though and it made me determined to get it below 8% next time.

Diabetes UK Santa Dash - Sutton Coldfield
My other half, Gareth, my brother, Daniel and my step-brother, Simon all raised money for Diabetes UK by taking part in a 'Santa Dash' on 5th December 2010.  I'm not really the running-type so I just did my bit by supporting them at the start and finish lines!!! It was a lovely day, very cold and icy but really sunny with blue skies.  Everyone taking part got a Santa suit to wear - they weren't great quality so there was plenty of giggling when the boys put them on - there were belts breaking, trousers looking less than flattering and beard fluff flying about all over the place!!! Anyway, in the end there were around 200 Santa's milling around at the start line and to get everyone in the mood some of the Diabetes UK people did a warm up so there were a couple of hundred Santa's ranging from about 3 years old to 50 years old doing star jumps in the middle of a park.....it was certainly a sight you dont see every day!!!

There are plenty more pictures and a video on my Facebook page on the following links:



Anyway, the boys all did me proud and they did brilliantly to even get round the route without injuring themselves - there were people skidding and sliding all over the place due to the ice!!! They helped to raise money for a great cause which is obviously very close to me heart so thank you boys!!! :o)

2011 Fundraising Challenge
I had been wondering for a while what I should do for the 20 year anniversary of my diagnosis or whether I should do anything at all....then I was inspired by Siobhan Murphy, a fellow Diabetic who had put a status on Facebook asking for people to take part in a skydive with her!!! I had always thought people who did skydives were slightly insane but when I read that status I suddenly felt excited and had an adrenaline rush and thought "Yes!!!!!!!!! Thats perfect, I can do that as a great way to mark my 20th anniversary".  So since then I have been set on doing a skydive to raise money for JDRF.  It will be my 30th birthday on 16th April and my 20 year Diabetes Anniversary on 24th May so I think a skydive will be a really exciting thing to do for both of those reasons.  I had decided to book it for the middle of July this year to give me time to raise plenty of sponsor money and also so that, fingers crossed, the weather wil be half decent.  Before you can book you have to get a medical form signed by a doctor (if you are over 40 or if you have a number of medical conditions - Diabetes being one of them) so I went to get my form signed last week......Gutted!! My doctor wouldnt sign it at the moment as I have something wrong with my hands and wrists and he has said that its not a good idea to book it until I get a diagnosis for whatever is wrong!!!!! I'm really disappointed but I understand why he has said no for now and I am still 100% determined to do my skydive so watch this space!!!! ;o)

Christmas Weight!!!
Well, Christmas was a bit of a disaster food wise - as I'm sure it was for a lot of people!!! I ate and ate and ate and used my pump to compensate for all the sweet treats I was enjoying!!! Then came all the talk of post-Christmas diets and adverts on TV etc. so I took the plunge and weighed myself - bad idea!!! The scales screamed at me to get off them and I was shocked at the numbers I saw - I genuinely didnt think it had got so bad!!!! Anyway, that was the turning point and I decided to go back onto the Slimming World diet which I have tried before.  I started the diet on 10th January and to date I have lost 4 lbs.  I wanted to have lost more by now but after seeing my DSN last week I'm happier with 4 lbs as she said I should be looking at losing half a pound or 1 pound per week to do it healthily.  I have had quite a lot of hypos since starting the diet but I think thats down to the fact that as Im eating less carbs I need to adjust my basal rates - after discussing it with my DSN I'm going to do a series of basal tests to figure out whats going on at different times of the day and night so I can make the proper adjustments and then hopefully stop so many hypos!!! I've had a few wobbles in the last week where I havent stuck exactly to the plan but I am determined to stick at it  :o)

Just before Christmas I started noticing that I was getting pains in my hands and waking up with pins and needles during the night and also in the morning.  I have also been getting increased stiffness in my fingers (I've had stiff fingers and hands for as long as I can remember which I had put down to 'Diabetic Stiff Hand Syndrome' - not being able to press fingers together in a 'prayer sign').  You can find out more about this and other musculoskeletal conditions related to Diabetes on the link below (Diabetes UK website):


Anyway, the symptoms have got steadily worse with me also getting tightness in my wrists and feelings of a 'dead arm' and feeling like I need to 'click' the bones in my fingers (hope that makes sense).  I went to the doctors and he is more r less convinced that its Carpal Tunnel Syndrome, which I had already read is more common in Diabetics, but he wants to rule out other things first such as Diabetic Neuropathy, vitamin deficiencies and thyroid problems so he has referred me to the hospital to see a neurologist for nerve conduction tests which wil test for neuropathy and also I have had a blood test to find out if I have any vitamin deficiencies or thyroid problems.  I get the results of the blood test tomorrow.  I am really hoping that its not the start of neuropathy so got everything crossed.  If it is Carpal Tunnel Syndrome there are a number of treatments to try including wearing wrist splints at night, steroid injections and surgery.  The pain, stiffness and tightness is always worse first thing in the morning and in the evening and its also causing discomfort during the day at work so I'm hoping that something can be done to start treating it pretty soon.

Happy HbA1c
As you will know from my post last week I had my HbA1c done again and it has come down from 8.3% to 7.8% which I am elated about.  I really thought it would have gone up due to poor diet over Christmas so I couldnt believe it when the result flashed up on the screen!!!! Next time I want it to be well under 7.0% so I'm working extra hard to achieve it!!!!

I have also had another bleed in the back of my eye due to the retinopathy.  It was very very scary and happened late at night when I sat up in bed to turn the light off - one second I was fine, the next second this dark red 'blob' appeared in my vision in my right eye - needless to say I didnt sleep very well that night!!! It resulted in a trip to A+E and the eye infirmary the next day to get it checked out.  Apparently I will get these bleeds from time to time and as long as they are small and dont affect my whole vision they should go away on their own in a day or two.  If my vision gets completely blurred or I get a bleed which covers my whole vision I need to go back straight away.  They said I dont need anymore laser treatment at the moment which is good news!!!

As always, lots of things going on in my 'Diabetes World' but I think thats quite enough for one blog post....

Thursday, 27 January 2011

Happy HbA1c

It's a very brief post for my first one in about 2 months but I need to work myself back into blogging nice and slowly!!!  :o)

Went to the insulin pump clinic today and had my HbA1c done.....Was expecting a slight rise since my last one in November which was 8.3% but I was in for a pleasant surprise when the machine beeped and it said...... 7.8%.

I cant remember ever having a result that good!!!! Last April, when I started on my insulin pump journey, my HbA1c was 11.6% so I've made quite a lot of progress since then.

My DSN was really pleased too, so much so that she asked me if I wanted to take a photo of the result!!!! ha ha!!!!

Next time I'm aiming for below 7.0%

Wooooo hooooo!!!!! I'm SO pleased that the hard work is paying off!!!

Search This Blog