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.

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)

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