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!!!

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