grumble grumble grumble, smile smile smile

So i'll start with the negatives then finish off with a smile..

I sometimes feel like everything that is "common in diabetics" i get..
I've recently been diagnosed with Carpal Tunnel Syndrome.. after my assessment I was told "ah, it is common in diabetics though"..Luckily it's not bad and i get a splint to sleep in on tuesday so it shouldnt worsen either..
I'm told "you should take multi-vitamins daily, your immune system isnt as high as it should be, thats common in people with diabetes"..fine, that's easy, i just take a multi-vitamin in the morning, but again it's back to the "common in diabetics"
and finally (for now!) i've been suffering in a lot of pain over the last week with a pilonidal abscess, can't sit, stand or lay without pain, on 1125mg penicillin 4 times a day amongst a number of painkillers. When I was taken to the hospital and had this "diagnosed" if you like, the consultant said the dreaded words "ah, well youre not hairy (the main cause) but it's also common in people with diabetes".. Great..again?!

Another grumble..moving on to the happy stuff!

I have a new DSN and he's an idiot! I walked into the room and he goes "ah, i didnt know if i was seeing a male or female" even though my folder has on the front in bit black letters "KODIE WASS, FEMALE, 26/12/1991".. everything he asked me, he repeated my answer completely wrong as if he was never actually listening to me.. "when were you last at the hospital for your diabetes Kodie?" "I was here for the KAREN course in April"....."So, when you came for the KAREN course in October...."..."How many units of Levemir do you take in the evening Kodie?".."40".. "So when you take your 22units in the evening" ..this happened about 4-5times so i gave up trying. *moves onto positives*.. He did refer me to "George the pump man" though. I think his real name is something like George Thompson, but its the man who deals with all pump appeals at my hospital.. I get to meet him on the 17th November, so, fingers crossed I may have a pump in 2011!!

I took a hour and half train to Birmingham yesterday to meet a girl from the diabetes uk facebook page.. Was a little nervous but it was fantastic!..Was so nice to be able to meet somone else with diabetes face to face, was nice to be able to have a joke and compair our blood readings before we ate, was nice to be able to help eachother with the carb content of our dinner.. Was really glad i went!

And before i go.. Im going to fetch my new Contour USB meter about half 4..im quite excited, its like getting a new toy!. Im currently not liking the Accu-chek compact plus.. its very noisey and very bulky and would be a concern to me when i start college as there's no way of being discreet.

Are we shrugged off with a "it'll do" attitude?

So somethings crossed my mind a lot lately.

Figures show that the average person without diabetes will have a blood sugar between 4 and 7 mmol/l. This is classed as normal and safe.

So when us people with diabetes get blood readings of between 7 and 8, 7.6 for example and we're told "Thats okay for a diabetic" should be be happy because we are people with diabetes or are we just being shrugged off with an "it'll do cause youre not normal" kind of attitude.

It's not just with blood readings.. when you go to clinics/doctors etc you very often hear "thats ok for a person with diabetes".. does that imply were not good enough to be "normal"?..

This is just a short post, but really got me thinking..

Motivation...or lack of!

Hmm, so.. I'm 18 years old, going back to college in September after a years gap..and I have type 1 diabetes.

A lot of questions have been running through my mind about diabetes recently. The care we recieve (or lack of in some cases). The unfair lack of funding for diabetics. The ignorance.. I could go on for ages. But the big thing for me at the moment is motivation. I'm quite a negative person unfortunatly, which makes things even worse!

So what do I mean?
Well, here's a daily scenario for me;

Wake up, think to myself "today i'm going to look after my diabetes properly", test my blood sugars, do all the usual dressed/wash etc, put on the kettle, (here's where i go wrong)...Skip breakfast, do housework... Lunch time...uhm and arr over what to wat for a while... eat...forget to inject..remember to inject..forget what carbs i ate...give up for the rest of the day. (in the sense of lack of testing and accurate carb counting, not all together)

I've tried keeping diaries etc, but they work for a few days and then it all goes out the window again!
I'm perfectly capable of carb counting efficiantly, but why dont i? I'm perfectly capable of testing my blood sugar, but why dont i?

I don't think im lazy, im not doing it because i "can't be bothered".. I just lack to motivation to continue when I hit a bump.

3 years of type 1 diabetes and it just gets harder.
Maybe it's my teenage stubborness (i hope so!)..but why cant i just do as im told?

Blegh!

Update,,,

Its been a while since i've written a blog so I have plenty to say. (Lengthy post)

I did my 11 mile walk for Diabetes Uk Sunday just gone (4th July). It went really well to be honest. Made me really realise who my true friends are though. A few months before the walk there was 13 of us planning to take part, weeks before the walk this dropped to 5, then on the day another person dropped out a hour and half before we were meeting up. I'm not overly annoyed though, the 4 of us had a laugh and it made me realise who really cares. Anyway, the walk. We started at ASDA, we all stood there in our Diabetes Uk t-shirts, getting looks from all around waiting to start. My dad took a photo of us outside the supermarket, gave us the usual "take lots of water etc" lecture and off we went. The first part of the walk was definitely the easiest, theres only about a mile and half between ASDA and Tesco. We arrived at Tesco and my parents were waiting, took another photo, dished out water and we set off again. We headed for Sainsburys, this leg of the walk was a bit longer, but we laughed and joked along the way. Again my parents met us for pictures and water, they'd decorated the car with DUK balloons so that we could find them at each supermarket. After Sainsburys we had the hardest part of the walk, the final leg.. Sainsburys to Morrisons. Not only was this part the longest, we also were walking down a A road, so we got all the sand whip from the passing cars and the sun was directly above us. But we didn't let this defeat us! We continued and tried to laugh and joke still. My boyfriends scottish and was shocked I didnt know what a thistle was, so he was amused when I caught my hand on one as we passed. (OUCH!). When Morrisons was is sight we all got rather excited and were tempted to run. When we arrived It felt great! My mum and dad stood there and dished out the "walk the extra mile" medals from DUK and took our final photo. We were VERY pleased with our time of 2hours45 as none of us had done any training. Very proud :).

The next bit..
Been feeling abit down in the dumps recently. The ignorance/lack of awareness has been getting to me because except when i'm talking to other diabetics online I feel quite alone. My friends try to understand but it isn't easy for them without having the condition itself. I'm not slating any illness here, just using examples, but if you asked someone what Cancer was, chances are they could tell you. You ask someone what diabetes is, you either get "i dunno" or "you cant eat sugar". We CAN eat sugar!! I just feel there's very little people know and it makes them ignorant. I may have said this before, but it's almost like people think you eat, inject and youre fine. They dont realise all the grey areas too.. The blood monitoring, the anger/upset from random highs and lows you cant explain, making sure you have all your gadgets before you leave the house, the maths test every time you eat, the feeling of being "abnormal", the days you just want to give it all up... amongst others. I often long to be able to leave the house with nothing but my phone and keys! Maybe i'm just being mardy, i dunno. I just feel like im in the dark alot, i feel if i admit to struggling that im weak.

Im also a little disappointed at my Diabetes team. I was supposed to see them back in May, but they were "too busy and I wasnt a priority patient". Well i was told id get an appointment in June, i rang to book my appointment and was told my DSN had resigned so I'd have to wait untill August. I questioned the length of time between May and August and was told "We're down on DSN's and its not fair to give all Jenny Claytons appointments to the others" (Jenny was my DSN)... Well what are they there for then? If their job title is "Diabetic Specialist Nurse" surely it doesnt matter who their patients are, as long as theyre doabetic? Makes me mad. Poor staff, having to take on someone elses patients, dont we all feel sorry for them! (Excuse the sarcasm).

And finally...
I really want a pump, it'd help my quality of life and definitely help my control. But i've been told that the chances are slim. I have to have a poor Hba1c for a long period of time before they'd even contact the PCT. Surely that goes against them trying to help my control? I'll argue my case again in August with whoever I end up seeing. Makes me mad that so much funding goes into people who've deliberatly harmed themself, but not for diabetics. All the money that gets spent on recovering alcoholics, people in prison "finding their good self" etc. but there's very little funding for diabetics to recieve pumps, make their life better. We didn't cause our diabetes, yet we have to suffer. I cause ranting isnt really going to help.

I think i'm done for now.

You discover who your real friends are

A bit disappointed today.
I'm doing my bit for diabetes uk, I've organised an 11 mile walk to raise money to donate to DUK.

However, it's times like these that you realise who your real friends actually are!

Origionally there were 9 of us taking part in this walk, all had agreed and seemed excited a few months back. Everyone said once I had received the sponsor forms etc from Diabetes Uk that they would meet me and start raising. We all agreed to buy a DUK t-shirt to wear on the day.. was all very exciting.

Drop out one!
A few weeks back one of my friends dropped out because "Diabetes Uk doesn't mean enough to her".. Great. Thanks!... But I guess at least she was the honest one!

Drop out two + three!
Only TODAY a set of twins dropped out. The two initial people to ask to join me as one of them had a diabetes scare. Their excuse is that the walk would mean them missing out on revision time etc. Neither have seemed to care a deal since one of them got the all clear anyway..

Drop out four + five!
Again, TODAY they dropped out..Less than a month to go! They were eager to join in this morning, well right up until about 4pm they were still coming. But their excuses just didnt match up. One had just been told that she was going away that weekend and the other just got told they have an operation that day. And then the one going away suddenly couldnt come along when the other was in hospital.. I thought she was going away? And why would you agree to do a 11 mile walk when youre expecting an operation?

I feel disappointment a worse feeling that anger. I'd rather they just say they don't want to do it!

Oh well eh, proves who my real friends are. The ones who are sticking by me!.. And the one who's jumped in this late on and filled a space just tonight!

I'd still do my but even if I were to go alone. Just feeling really really let down!

What is diabetes and how is it controlled?..In my own words

So, a few friends have asked me to explain what type one diabetes is and how i control it. A few have also mentioned looking at the internet and don't understand all the scientific terms. Thats what has given me the motivation to write this post and explain what diabetes is and how I control it in my own words. Warning: This post is quite long as I tried to fit everything in!!

So what is type one diabetes?
Basically it is an auto-immune condition. The three main causes of type one diabetes are environment, genetics and viral infection. In my case, my diabetes was caused from an absess which falls into the viral infection category. When my body tried to fight off the infection from the absess it was mistaking the infection cells with the insulin producing cells in my pancreas (these are the cells named islet cells or beta cells in the complicated descriptions) this is why it is an auto-immune condition. This resulted in me never making my own insulin again.

What is insulin then?
Insulin is a hormone produced in the pancreas of a "normal" person. When you eat things containing glucose (that's sugar) the glucose is absorbed into your blood stream and then your pancreas realeases insulin which breaks down the sugar and turns it into energy for your body cells (such as muscle). You could think about insulin being a key which opens the doors to your cells to allow the sugar in. However, people with diabetes don't produce the insulin and therefore the doors to the cells arent open. This means that the sugar we eat just sits in our blood which can cause many problems as it causes your blood to become acidic. This is why diabetics have to inject insulin.

So why injections? Why not tablets?
This is quite a simple one. The acid in your stomache would destroy the insulin and an injection would take the insulin straight into your blood so it can work on the sugar straight away.



So can I eat sugar?
Simple answer, yes. I can eat sweets, chocolate, cake, biscuits etc as long as I inject my insulin for them. It may mean more injections to have a snack, but if i'm willing to inject extra, I can have the treat. Although it's advised not to eat too many hard boiled sweets or lollipops as the really high content of sugar means not all artificial insulin can cope with how quickly the glucose is absorbed into your blood. The same applies with sugary drinks as these are absorbed into the blood stream even quicker.

Hypos and Hypers?
These terms relate to high and low blood glucose levels. (This means the amount of sugar in the blood). Being Hyper (or hyperglycemic) means having too much sugar in your blood. There's not really any significant short term effects of Hypers other than a niggly headache, feeling lathargic and thirst. But the long term effects can be fatal. DKA (Diabetic Ketoacidosis), Kidney problems, Nerve problems, Heart problems and Eye problems. DKA is the process when your blood sugar is too high and your blood begins to turn acidic, this produces a by-product called Ketones, which are very harmful to the body. Being Hypo means having too little sugar in the blood. The short term effects of being hypo usually involve being dizzy, moody, sweating, shaking, feeling confused..however, these symptoms vary within each person. If a hypo is detected fairly quickly it can be sorted fairly easy with fast acting sugar such as full sugar cola/lucozade/glucose tablets and followed up a few minutes later with a slow acting carbohydrate to keep the level raised such as 2 biscuits. If the blood sugar drops too low and isn't increased it can cause a coma or even death.

So why are there different types of insulin?
There are two main types of insuling; fast acting and slow acting. (As well as mixed insulins which are usually used short-term to get used to having diabetes) A slow acting insulin is usually injected once a day (or twice in some cases) and releases a slow trickled over a 24 hour period (or 12). This acts as a baseline insulin to keep you quite level through-out the day. However, this baseline is not substantial enough to deal with the sugar you eat. This is where fast acting insulin comes in. This insulin is usually taken immediatly before or after eating and has a peak of around 3 hours to cope with the sugar that is being eaten. The amount of fast acting insulin depends on the amount of carbohydrates eaten. The ratio varies from person to person. I take 1 unit of insulin for every 10grams of carbohydrate I eat.

I think i've covered most things, however, if there's anything I have missed don't be afraid to ask and i'll write a new post :)

Lets widen the understanding and raise awareness!!!

The beginning, the middle and now..

I was once a Normal child, i'd go to school as normal, play out with my friends as normal, eat and drink as normal even test my parents patience as normal. I use the word normal because I never really had a problem, I took simple things for granted because I had very little to worry about.
Then on May 15th 2007 everything changed. I was diagnosed Type 1 Diabetic, aged 15.

My diagnosis wasn't the most pleasent. I'd been ill for a while, all the usual symptoms but sempt to find my own personal reasoning for each. I blamed the thirst on the fact that I never really drank a lot as a child and therefore blamed the increased trips to the toilet on this. I blamed the tiredness and grumpyness on just starting my GCSEs and all the hormonal changed in my body. I blamed the weight loss on part of growing up. My doctor wasn't much help either. I was told that my symptoms were likely to be exactly what i'd put them down to, he told me i may be slightly aneamic so gave me an iron tablet and sent me home. It wasn't untill I was really ill and developed a 5-6month continuous ear infection that any of the clues were linked together. I was really sick of being deaf and suffering with earache so I tried the doctor again. I went after school one day, just throwing on some old clothes to get out of my uniform, expecting to be in the doctors for 10 minutes tops. I saw a different doctor this time and he took one look at me and sent me to the toilet with a tube for a urine sample. As i sat there I was confused as to why my urine would solve my earache. When I went back into the doctors room he put a beige ketone strip into my sample and it turned instantly Black. He took a finger prick sample of blood and his machine read HI. He told me I would have to go to the hospital right away. I was confused, he hadn't really said a deal but spoke to my dad when I left the room for the car. On the way to the hospital, still confused, I just complained that I wasn't wearing great clothes, clutching onto the letter the doc had given. We went straight upto the children's ward. I sat on a bed I was assigned to and my dad went to give the letter to the nurse on duty. I looked around and saw all these sick children, still confused because other than earache, i felt ok. I was then taken for a blood test and told my blood sugar readings were 42mmol/l and that I had type 1 diabetes. My dad went to ring my mum and the nurse tried to explain what this meant to me. It was later discovered that my diabetes is likely to have been triggered by an infection I had a while before as it is an auto-immune condition.

After a few days in hospital I had spoken to specialist diabetes nurses, proved I could do my own injections and was let home. It  felt so good to be home and most of my family came to see me. I'll never forget the witty comment my granddad made when he walked through the door "alright sugar?".

I went back to school the next week, quite nervous. But all my teachers had already been informed. Some understood more than others, one even asked if i wanted the windows open and the lights dimmed?! I was on 2 injections a day of Novomix30 so had to stick to set meal times and specific foods. I felt embarressed as I had to quickly eat snacks on the move between lessons. Within 4 weeks of diagnosis I was back at the hospital learning the basics of carb counting so that I could go onto the more flexible 4 injections per day regime. I would inject a long acting insulin in the evening, and a fast acting insulin with meals. This felt much better.

I've struggled with highs and lows, blood testing, injections etc but i'm coping. My control isn't great at all and I hope for an insulin pump in the future. But i'm managing more now. I don't test my bloods as often as I should, I don't always inject as quick as I should after eating and I don't always do my 9.30pm injection of levemir at 9.30. But diabetes isn't easy, people don't understand the work that's put into keeping your sugar levels controlled. Every meal is like a maths question, counting the carbohydrates before eating..and then remembering to inject! There's a huge lack of understanding which often causes ignorance. Diabetes isn't a black and white condition, there are a lot of grey areas as we're all so different and require different techniques, amounts and even types of insulin. No type 1 diabetic caused themselves to be diabetic, none of us ate too much sugar and "became a diabetic", and all of us can still eat moderate amounts of sugar.

We need to raise awareness, and soon!
I take part in a 11 mile walk for Diabetes Uk on July 4th 2010 to help raise awareness and funds for a cure!