Monday 28 June 2010

Hairy moments.....

Over the past week I appear to have been fighting off some sort of bug. And with the amount of time I've had off work and the range of symptoms I've been getting you would think it was some hybrid form of MRSA crossed with Swine Flu, Pneumonia, pregnancy and plain old reliable cold.

It started with stomach cramps almost a week ago. They felt like the ones you get just before you throw up, ahhh such a lovely feeling. But they never developed into anything more than stomach cramps. Nevertheless they lasted through the night and resulted in me sleeping most of Monday to catch up on some Zzzz's.

Next, I got the overwhelming tiredness. Even two busy days at work seemed to floor me and Thursday I was beyond shattered, even being too tired to shower or eat during the day. Those who know me know that if I'm off my food, at least one part of hell must have frozen over. My guess is that it was a lot cooler in hell that day.

Friday brought more of the tummy rumbles. Never seeming to turn into a full on dose of stomach flu, but enough for me to feel sick, sluggish, off my food and as though I could sleep for a week.

Saturday and Sunday came and things seemed to get a bit better. Still the tiredness loomed, but I'm not the best in sweltering weather anyway, I'm more of a spring and autumn person, fresh and sunny - that's how I do things. The troubles diabetics have with hot weather are well-known and unfortunately never solved. It is just a foible of diabetes - hot weather equals sugars doing just what they want.

Last night however things got a little more worrying that just high or low sugars. I went to bed feeling tired but generally OK. The work clothes had been dusted off and laid out ready for the morning. I'd be surprised if I still knew how to do my job, but I need to learn it again quick smart if I'm to catch up on last week's gathering work gaining momentum on my desk.

I woke up about 45 minutes after I had gone to sleep, feeling very odd. Dizzy, queasy and like the bathroom was far too far away. I sat up and tried to carefully navigate my way to the bathroom. As soon as I arrived by the loo I started hurling with a vengeance. Supportive as always a sleepy looking Jamie arrived at the bathroom door extending me his sympathies. Asking if I was OK and could he get me anything. "Ohhh, I'm OK," I managed, in between involuntary spasms.

He sat with me while the display continued. Eventually we agreed that I would need to blood test. I felt fine 'betes wise, but the situation a diabetic should avoid at all costs is vomiting with low blood sugars, because the energy used up vomiting teamed with low sugars and inability to keep any sugary fluids down, can lead to unconsciousness and even coma.

So I decided to test just to make sure I was OK during my little throwing up session.

5, 4, 3, 2, 1, BEEEEEEP.

The blood glucose meter tells me I'm 2.7 mmol. Even for me that is quite low.

Right, sugary water it is. Lucozade is likely just to upset my stomach even more and I can't cope with eating right now. So Jamie disappeared to get me some sugary water while I continued to get reacquainted with the toilet bowl. Yuk.

After downing the whole glass of sugared water and leaving it about 10 minutes to ensure the liquid would have got into my system, I tested again.

5, 4, 3, 2, 1, BEEEEEP.

The blood glucose meter tells me I'm 2.2mmol.

Right, we started to get worried as that is very low by my standards and at the moment I was showing no signs of stopping.

Luckily, after a few more throwing up sessions, I managed to empty my system enough for my stomach to give me a break. I went up to 4.7mmol and was happy that whatever didn't like being in me was out. And frankly I was pleased to be rid of whatever it was too! The feeling was clearly mutual between myself and my imposter.

In total it took almost 12 teaspoons of sugar to stabilise me. This is a HUGE amount considering three is normally more than adequate. I was also expecting a huge rebound after that, partly due to how low I had gone and partly due to the amount of sugar I had chowed down on. Luckily 11.1mmol is the highest I've had since last night which is great, if not baffling.

I have no idea what happened or what it was that caused my little hacking session, but I really hope that after a week of this hybrid disease I have been living with, that was the last of it. I'm not sure how many more symptoms I can actually get!

Tuesday 22 June 2010

Diabetes Challenge - what was it all about?

Around a month ago I was browsing the Facebook Diabetes UK site and something stood out of the page and looked me straight in the eye. A picture of a mother and daughter embraced in a relaxed but protective way, almost as if showing a united front - we are in this together. I could instantly tell who the focus of the picture was. The young lady staring back from the photo, beckoning me to read the post - a young lady named Claudia. I knew without even having to ask, that this young lady and I shared something in common. Diabetes.

A few days after that, I made friends with someone named Lee Nevitt after watching a YouTube documentary which depicted life through Lee's eyes. A life which involved many hours in a wheelchair, many hours in pain and a life which had been transformed due to a condition. But something about the documentary said "I'm not done with you yet, there's more I have to say." We also had something in common. Diabetes.

Around this time, I also made friends with Angela, Berni, Roxana and Sarah. Four ladies whom I also shared something in common with. Diabetes. One way or another, this condition affects all of us. It doesn't matter whether we have been diagnosed with the condition or whether we live with someone who has it. Either way, we all have diabetes.

All of these people became my friends independently of one another. All within a few weeks admittedly, but as far as I was aware not through any friend suggestions or word of mouth. But simply because of our shared connection. Diabetes.

I'm not a great believer in fate, in 'meant to be' or even a great believer in coincidence. Sometimes things just happen. And had you told me a few weeks ago that we would all be involved in a challenge together walking the length of the Dorset coastline with the shared aim of raising awareness, despite the fact that some of us lived a four hour drive apart, I would not have believed you. I would have told you to stop pulling my leg.

And yet this is just what happened. Initially, after watching Lee's documentary, I noticed on his Facebook page that he was taking part in a challenge during diabetes week. A Diabetes Challenge where he would negotiate a 10km trip in his wheelchair in order to raise awareness for diabetes.

Then, I realised somewhere along the line that the young lady from that photo was also doing it. She was going to take on this challenge on her own set of wheels - her bicycle. I don't even remember when I realised this, or when it clicked that Angela was her mother, the other half of the united front, the other half of the photo. But at some point I realised and something pulled me to the challenge. Now, I had been planning to attend a Diabetes Wellness and Research Foundation event in Southampton on the day of the challenge, the 19th of June, but something was telling me that this was the event I should attend. At this point I had no idea how many connections would all knot together at this event. At the time I just thought it was a great idea and maybe I'd like to be part of it.

Next in the chain of events, was a recent new friend asking me about the pump - enter Berni. We had exchanged a few emails by this point, every few days having an e-chat about diabetes and how our experiences had played out to this point. Berni and I don't share the 'same kind' of diabetes and yet without ever having met, conversation flowed easily and each other's status updates about diabetes usually always warranted a response from the other person. Above all, there was something we understood about one another. Diabetes. Berni wanted to talk about the pump and learn a bit more, and I was lucky enough to be the person she called on. Everyone knows I love talking about the pump and all things diabetes and I would have the opportunity to talk about it again, because Berni was another person taking part in the challenge.

Then I find out the Sarah and Roxana were going too. Each little thread knitting together at last. Maybe I should rethink my theories about fate...

By all calculations, I should never have made it to the event. In my last post I talked about my downright ridiculous attempt to make it to the challenge after missing the beginning, the middle and even the end (impressive considering it was a 3 hour challenge and we took 4 hours to actually find them!). But eventually after all that, we made it.

It is difficult to talk about the challenge exactly, because my marvellous punctuality and orienteering skills mean I only just made it to the finish line before everyone went home. But in that short hour we had together a few things became glaringly obvious to me.

Here in front of me stood a group of people united by one common goal. One shared aim and a growing list of objectives. There were men, women and children wearing their JDRF and DUK t-shirts with pride and with purpose. Children as bold as brass were encouraging strangers and passers by to part with money for a good cause. A cause which in one way or another had affected their lives in sometimes indescribable ways. There were friends of friends with faces painted blue, a way to show they were there to support their friends, their family, their new-found companions. There to show unity and compassion for one another and the things we all go through, something this world can at times swallow up.

In front of me stood a man named Lee who had been through ten rounds in the ring with Diabetes. Diabetes had not gone easy on him, it had not cut him any slack. But in front of me there also stood a man talking about educating people and making a difference. He was proud to have done the challenge, but there was a look in his eye that said this was only the beginning and a status update the day after, confirming just that.

In front of me stood a young lady named Claudia, who wore her pump cannula on her arm for the world to see. When I showed her that I had mine on my arm too, a smile crept across her face. This young lady was confident, energetic and enchanting. I wish I had known another diabetic like her when I was young. This girl would take no prisoners when it came to this condition. She was the winner, not the diabetes.

In front of me stood mothers, fathers, brothers, sisters, friends and supporters, all keen to show that even though this sometimes devastating illness had affected their lives, they weren't about to go belly up and give in. These aren't those kind people.

There were easily two dozen people there when I arrived, still excited from the achievement now firmly in their possession. You could feel the buzz just walking into the middle of the group and bearing in mine Lauren and I were pretty worn out from our hot, sticky traffic jams and midday confusion on the beach, we were immediately energised by the sheer good vibe this group exuded.

Sometimes living each day with diabetes can make you feel as if you are shovelling snow in a blizzard, or trying to run through tar, but when you surround yourselves with people like this, those days start to fade away a little. They become a little harder to remember.

On the morning of the challenge I had notched up a rather impressive 22.9mmol on the way there. My muscles were aching, my mood was sinking and my bubbly personality was little more than a meagre simmer. All of that was forgotten when I met this group. It melted away somewhere along the line and was replaced by laughter and chatter - the personality boil back on max.

Berni and I talked pumps, diabetes disputes, Type 1, Type 2, Type 1.5 and type MODY for over an hour. I could have talked for more. I'm pretty sure Berni could too!

The event itself raised over £330 on the day as well as almost £1000 in the run up to the event. How many can say they have done that? I'm afraid I can't. I did a sponsored silence once - years ago - in aid of diabetes. What happened along the way and why did I forget to carry on? OK, so perhaps a sponsored silence isn't the right way to go for someone who talks like an AK47, but I dipped my feet in the water and then dried them off straight away.

I think I have found several really good reasons to take it up with the world again. Perhaps they are role models more than reasons. They are called Lee, Claudia, Angela, Berni, Roxana, Sarah, man with painted blue face, girl wearing JDRF t-shirt. Diabetes.

In this post I have written the word 'Diabetes' in a sentence all on its own a number of times. I did this on purpose despite the way it looks on the page. Really, grammatically speaking, a sentence doesn't make sense if it is just one word but this one does. Diabetes IS a sentence. But it is not a sentence we have to go alone in. It may stand alone in a sentence, but the nature of diabetes is that there are millions of other people living that sentence. 285 Million to be exact.

Even though I didn't make it to the event itself I am so glad I met this group of people. These people are the ones who will spend their days educating, spreading the word and letting people know; we are still here, we still have something to say, we have a difference to make and we aren't giving up until we succeed.


Sunday 20 June 2010

The 'Where the hell are we?' Challenge

On Saturday the 19th June 2010, some friends of mine and some friends of theirs, were setting off on a 10km walk across the Poole coastline to raise money for JDRF (Juvenile Diabetes Research Foundation) and DUK (Diabetes UK) and to raise awareness for Diabetes and its associated conditions and challenges.

Since finding out about the event, I have been eagerly awaiting it. I got my friend Lauren on board as she has always been a rock when it came to my diabetes and my sometimes unusual ways of handing it (mostly swearing at my pancreas!). I will write a proper post about the event in the next couple of days, because the people who took the people who took part in the challenge and the challenge itself well and truly deserve a post of their own.

This post however, will describe the challenge we (Lauren and I) also took part in that day - the immensely difficult and sometimes downright ridiculous 'challenge' we took part in trying to get there. Our challenge has since been aptly named - the "Where the hell are we?" challenge.

I am a bit of a dreamer, a fantasist and an optimist. It's very rare for me to get excited about an upcoming event without first fantasising how it will be and the way it will feel. This was no different. I had imagined meeting everyone, being there for the start, seeing everyone complete the challenge and seeing the faces of passers being educated and taking joy in the event. I mean I had even practically written my post before even getting there. I had imagined what my post would say, the kind of pictures which would appear on my blog and had even thought out the name of the post!

So we set off in the morning after I basically forced everyone out the front door while still getting dressed, keen to set off and hit the road to get to Poole. I was armed with a navigator (Lauren), instructions (hand written but copied from RAC routefinder), GPS (Lauren's iPhone) and a positive 'can do' attitude.

The first problem was that I had no petrol and that little git of a light was already flashing at me, meaning I couldn't ignore it and would have to feed my car. So we stopped for petrol and set off again. After dropping the slightly hung over fiance in town we were now running about ten minutes late. This wasn't really a problem, as I had catered for a one and a quarter hour journey by leaving about two hours of travel time - just in case something went wrong. Turns out four hours would have been a better guess!

There were no real problems until we had to start navigating the smaller roads on the way. As I saw the sign for the turning I thought we needed, I hit the indicator and came off. It wasn't long before we started seeing signs for Salisbury. Now, I am no expert at geogrpahy (as you will see), but I don't ever remember Salisbury being on the coastline. In fact, I'm pretty sure it is land-locked.....

After detouring about 8 miles through country roads, we got the GPS out. Yup, we were heading completely in the wrong direction and quickly at that. We pulled over, looked at the map and turned the car around. Right, we're now about 20 minutes behind and 10 miles off course, but it's fine, we left enough time so we may just not get as much time at the start to chat to everyone.

Eventually we managed to get into Poole (can I get a "Yay"?). But it turns out this is when the fun really started. We drove around for about 20 minutes along the seafront looking for the Jazz Cafe (the starting point), with no luck. We found lots of other cafes, but not the one we needed. We had all been asked to wear blue t-shirts so we would all look like the big group and catch people's attention. It turns out that everyone in Poole had the same idea. Everywhere, and I mean EVERYWHERE, there were people clad in blue t-shirts, tops, jumpers, cardigans and even hats. But somehow we knew that they were not there for the Challenge.

We must have parked up about 3 times, looking at our map and instructions with complete confusion on our faces. Now, I hate to perpetuate any stereotypes - but if a bunch of guys were to create a sketch about two girls trying to get from a to b using a map and instructions - I suspect our little escapade would be very much how it turned out!

Eventually Lauren managed to figure out that there was a side road which broke off from the main road we had been traversing for quite some time. We took the turning and low and behold, the cafe was right in front of us! We parked the car, put a 3 hour ticket on it and hit the seafront. We decided to grab a cold drink and start looking for the smurf crowd. I'm not sure why, but I had thought that the start and finish line would be at the same place, so figured that some of the people not doing the challenge may be hanging around and waiting for the victorious crowd to return. Again, there seemed to be a LOT of people donning blue tops, but none who looked likely to be part of the group we were searching for. We asked at the Jazz Cafe whether they had seen a group of blue people heading off. Turns out they had and we were advised they left about 20 minutes to half an hour ago. Elated at the fact we had finally found the right place, we headed off in search of the group. We walked for about 20 minutes with no sign of the group, so approached a couple of people walking in the opposite direction, in the hope they could tell us where they were heading.

"Excuse me, I don't suppose you've seen a big group of people dressed in blue, in aid of Diabetes?"

"Oh yes, we saw them about 45 minutes ago."

Right, so somehow even though they were a great big group, we hadn't gained on them at all. In fact, since we headed off the group had managed to put another 20 minutes in between us!

Undeterred, we carried on marching along the seafront convinced that any second now we would catch them up.


After about another 20 minutes, we were started to think something was amiss. We had no drinks on us now and being the genius I am, I was starting to get a sore on my foot because I had worn totally inappropriate shoes (a diabetic no-no). Starting to become a little disheartened, we asked another couple travelling from the direction our group would have been going in.

"Excuse me, have you seen a big group of people wearing blue and walking in aid of diabetes?"

"Oh yes, about an hour ago."

What?? How are these people walking so quickly???

At this point I should let you know that we had also been following the beach huts, because Lee had managed to secure a beach hut for the day. Number 2719. We had been following the numbers (which started at number 1), and just as we found out the group had gained another 20 minutes on us, we looked at the numbers and realised the numbers had gone from 150, back to number one! Bearing in mind we were trying to get to 2719, and the huts appeared to go back to number one every couple of hundred, we were intimidated by just how many beach huts we had to get through to get to the end!

So we took 5, grabbed a drink and decided detective work would be the way to go. Lauren whipped out her iPhone ad did a bit of FB stalking. I had remembered that on one of Lee's photos, he had a mobile number and details of the event. We trawled through the photos,and finally found the photo I remembered!

Hail the Lord - there's a mobile number!

I dialled the number and prayed someone would answer. Hurrah! A male voice came on the phone.

It was Lee, and I soon became acutely aware he was mid way through the challenge answering his phone thanks to me being lost and confused (it really doesn't take much!).

We had a quick chat and figured out that by the time we would catch up with them, the car ticket would have run out and we'd be miles from where we needed o get.

It was decided we'd meet the ramblers in Boscombe where they would be arriving shortly. So, after a bit of a disastrous start to our challenge, we doubled back and headed for the car.

On finding the car, we whipped out the GPS as between us we drew a complete blank about just where Boscombe actually was! We managed to find it and hit the road. After having to carry out a pit-stop because of some troubling sounding 'clunking' noises came from the car, we realised it was the motor on the windscreen wipers and set off again with hopes that the car wasn't about to conk out on us all together. It didn't, which at this point was greatly appreciated!

We managed to find the right exit to come off for Boscombe and were starting to feel almost hopeful that we might at some point today, find what we'd been looking for. We came off the motorway and lined up in some traffic. Turns out, the 'some traffic' we got into didn't move for about another 10-15 minutes. That's because the weekend we decided to visit Boscombe, most of the main road into the damned place was being dug up. Broadband issues no doubt! I don't care HOW slow your Internet is, I NEED TO GET TO THE BEACH.

Slowly we made our way through the main road, stopping reluctantly every few meters for another 10 minute stop at the lights. By this point we were realising that the folks in blue would probably already have made it to Boscombe and if (and it felt like a big 'if') we made it there, we would once again be about half an hour behind them.

OK, time for an executive decision. If we EVER want to catch up with ANYONE, we need to head straight to Southbourne, the finale. Right, traffic started easing up and Lauren well and truly had her eyes affixed on the sat nav. How she didn't bleed from her eyeballs from reading directions, road signs and GPS I'm still not sure.

Luckily she didn't need to much longer. The GPS died. More precisely, her entire phone did. Her phone being the one with the Internet, the map, the email about where to head and where the finale was.

This was just about the last straw, and with absolutely no clue how to get to Southbourne, one of us finally said it.

"Shall we just head home? We're never going to find it."

I'm not sure who said it first, but we were both thinking it and probably had been for a while.

I felt my heart sink a little as I had been looking forward to this since first hearing about it, and had cancelled a conference to go to this because I knew I would gain so much more from this experience. Selfish but true.

With a grumpy look on my face and a completely exhausted friend at my side, I admitted defeat.

"Yeah, we'll get out the city and I will just have to explain. We'll plan it better next time."

I carried on going straight on the road we were on for fear of getting lost again. And there, winking at me from a bright white sign, the word;


"Lauren, LOOK! There's a bloody sign for Southbourne!"

After all that we were headed in the right direction anyway!

We took the turning and it wasn't long before we saw the signs for Southbourne and Beaches!

Eventually we found our way and parked up, overlooking the Beachfront Bistro.

I had to call Lee again because in all honesty, even though we'd hit Southbourne beach, having had so many foul-ups in one day we weren't about to walk to the beach and go off in any old direction. I'm not sure either of us could have handled it!

Lee advised that we needed to turn back because we were about 20-25 minutes walk away from where they would finish. We figured we would drive it, because my foot couldn't take it and I think Lauren wasn't far off punching me, because rather than enjoying her Saturday by soaking up rays on a beach, she was navigating for a crazed blue crowd seeking maniac, intent on tracking people down who she probably wouldn't even recognize if they walked right past her!

We managed to find a little spot with free parking and headed down onto the beach.

Now, we managed to find the numbers of some beach huts which claimed to be 1150. Bearing in mind they started at one, we were a hell of a lot closer to our target. We started following the beach huts once more and made our way alone the coast.

It wasn't long before the big white building we were starting to approach began to look a little too familiar.

"Lauren, I'm pretty sure that's the Bistro. Lee definitely said we needed to head away from the Bistro back towards the Pier."

We just stopped and looked at each other. I don't think either of us at this point could muster the strength to make a joke or laugh about it.

We found a step and sat down. Or slumped down would probably be closer to the truth.

"Well we tried really really hard to find it." Lauren reassured me.

"I know, but I feel really gutted. I'd hate it if we went home and found out they were all just round the corner."

Three people walked past us and being on the same wavelength, Lauren and I looked right at each other.

"Excuse me!" I shouted, "I couldn't help but notice you are all wearing blue. I don't suppose your here for a diabetes event are you?"

Blank faces stared back.

I guess not then.

We decided that as we had an hour left, we would head back the way we came and walk just a bit further in the other direction, in the hope we might see something.

We kep a close eye on the huts, noting that rather than getting closer to the 2719 we were looking for, we seemed for sure to be heading in the wrong direction.

1150, 1149, 1148.

We carried on walking regardless until out of the blue, the numbers went from 1116 to 2729!


We carried on walking, total disbelief and confusion painted across our faces like war paint.

We counted down, 2722, 2721, 2720.....almost there.....1115?

"I think these huts were numbered before counting was invented." I scoffed.

By this time we were both ready to just get on the floor and throw our hands and feet around in a fit more suited to a two year-old. And believe me, I was close.

At that moment Lauren turned to me and pointed out that there was a whole group of people about 100 metres away, with balloons lining the handrails in front of one of the beach huts.

Even if that wasn't the right hut, I was prepared to befriend WHOMEVER was there and at least meet one new person that day!

As we drew closer, the blue began to emerge. Painted blue faces, t-shirts, jumpers. And in bold letters on the side of the hut, the letters J...D...R...F.


We sort of launched ourselves into the middle of the group. Completely ecstatic that we had finally, FINALLY got where we needed to go.

Over the next hour, I got to meet all the people I had been hoping to meet for weeks. People who had become my friends before even meeting them face to face. Being able to put a face to a name is a bizarre thing, especially when we had been tracking this group of people for about 3 hours!

We swapped diabetes stories and tales from the day. We laughed at the children playing in the sea, and marvelled at how much energy they had left, bearing in mind that many were under the age of ten and had just completed a 10K walk! I could see the amount of passion this group had for what they had achieved that day and I could tell it was probably just the beginning. I'm glad that we went that extra mile in our goal to find them. The challenge they completed that day was far greater than ours, although while sat on that step admitting defeat, it felt like we'd just lost the World Cup!

I'm sad that we weren't there for the whole thing like we'd hoped, and in fact didn't even make it to the finish line on time, but our own ridiculous carry on at least led us to the finish, where we were able to finally meet the people I'd been imagining meeting.

I will write my other promised post soon. I just thought our little escapade might make you laugh.

Carry-on Diabetes Challenge. What a film that would make :)

Thursday 17 June 2010

Fighting amongst our own

In the recent past I joined a group called "Rename Type 1 diabetes".

You may wonder why I joined this group and I will gladly explain. All too often T1 and T2 are grouped together and the education provided about them is vague and wildly misleading.

For example, there is currently a public service advert on television called "Change for Life", which challenges people to make small changes to their lives like eating less fatty food or getting more exercise, to avoid them leading an unhealthy life. One of the threats the advert makes, is that "too much bad fat in your body can lead to diseases such as diabetes".

OK, I already have diabetes, so what is going to happen to me if I eat bad fats and become grossly overweight? Will I get a double dose of diabetes? Will I get diabetes worse than someone else? Erm, no! And that is because they are referring very specifically to Type 2 diabetes. It is a medical IMPOSSIBILITY to get Type 1 from being overweight, or drinking too much, or eating too many sweets or standing on your head.

Conversely, all too often people refer to type 1 diabetes as "the worse one". What does that even mean??? The worse one? Is that the evil twin of type 2 diabetes, a good cop bad cop situation? No, there is a common misconception that type 2s have it easy or are better off than type 1s. The fact is, people with type 2 (WHO HAVE IT FOR WHATEVER REASON) are often diagnosed far too late. By the time they have been, they have diabetic ulcers (I challenge you to type that into google and have a look at the images). They will have heart problems, circulatory problems and more.

I joined this group because I felt it was vital to rename both T1 AND T2. However, since joining the group, I have noticed that the comments on the wall are anything but constructive and show that there a enormous problems stemming from much further down the food chain which we have to deal with first.

There are clear attacks on people with type 2 who are asking others not to tar them with the same brush as those who do allow themselves to get morbidly obese, thus triggering diabetes in their body. To that, I have seen the most enormous assumptions that type 2s have it worse that type 1s and that it is "far, far more complicated".

Equally as ignorant, there are type 1s on the site purporting that all type 2 are "fat, lazy, slobbish, do not do enough exercise and do not eat right."

Which cave do you live in again? I would like to come visit to see how angels live!

Of the Type 2s I know only 1 has the condition after weight triggered it (we think). Coincidentally, this person is on 4 injections a day followed by 19 pills. She is being refused access to the diabetes clinic and has the most awful time controlling her condition. Does she still have it 'better' than me? I would argue not. If I have an issue I can email, call or even text my DSN to ask a question. My friend has to go to her GP. Bearing in mind GPs have shockingly limited knowledge of the finer details of diabetes, I am genuinely more concerned for her welfare right now that I am for my own.

The other T2s I know are people who just got a bit older. Are they to blame because they got older? That is a rhetorical question - I beg you not to answer it.

Further, there is growing overwhelming evidence that even type 2 diabetes is all down to genetics; that type 2 diabetics are predisposed to the condition. The fact is, weight is one single trigger for diabetes. We know that age is another, but our knowledge of the triggers for type 2 (and type one for that matter) are horribly under-researched and often assumed. We only 'know' type 2 is triggered by weight because of the sheer amount of people who are overweight who did develop it. But what about all the people who don't fit 'the norm?'. I have heard of genetics being involved in diabetes somehow - and where have I heard it - oh yes, it was about T1 funnily enough...

The fact is Type one and Type 2 diabetes are devastating illnesses. Type one diabetics will live no more than a few days without insulin. Type 2s can survive for years without knowing they have it, with absolutely devastating effects.

Why are we arguing amongst ourselves? I have type 1 and have done for 23 years. I joined this group because I wanted the recognition and education about BOTH types because giving diabetes an ambiguous 'one-size-fits-all' name is completely inappropriate. The two conditions are vastly different, they just both happen to involve insulin. That's like saying brain cancer and skin cancer are the same thing. They are the same type of disease - but the way you diagnose, treat and live with one is vastly different to the other.

But sitting here reading these comments makes me realise some diabetics are far too busy convincing other people they have it worse than others, to be able to dedicate any time whatsoever to tackling the real issue - EDUCATION! How are we to take this issue to a wider audience and tackle their ignorance, if we are not yet over our own??? We are making just as many assumptions about one another's condition as other people make based on the ill-informed 'education' they are offered from the so-called policy makers.

There are type 2s everywhere who think they know it all about type1s. There are type 1s everywhere who think they know it all about type 2. I have had type 1 most of my life, and yet I still don't know it all about type 1.

How so many people can think they know it all is beyond me. And how we are supposed to educate people whilst there is so much dissaray amongst our very own ranks is also beyond me.

Even if we do succeed in changing the name, bringing about long needed differentiation between the types, no change will come about unless we make sure we educate everyone. This will never be achieved if we make so many assumptions about diabetes.

In fact until we can open our minds and accept that we need to change our own attitudes, changing the name will do a big fat nothing to people's understanding of the disease.

And when it comes down to it, that is all it is about - changing people's understanding.

How are we to change understanding through advocacy if we are so confused about our own disease?

I think we can safely say, until we adapt pur own attitudes, we will never be able to educate others.

Friday 11 June 2010

Expanding circles of friendships

Diabetes is a strange thing. For almost 23 years I felt very much alone, as though I was different and fitted in this world in an awkward way. Not awkward in the same way an angsty teenager would claim to be, as though no-one understands them and as though the world is fighting against them. It was quite the opposite in fact. I had a fantastic group of friends, a wonderful family. I had hobbies and interests. I could melt into music like ice cream in the desert. I could get lost in a really good book, imagining myself in the story (usually as a fly on the wall following the characters around from page to page). And I could party like the best of them.

The awkwardness I mean is the way in which explaining diabetes to people can make you feel like you were the first person to ever have the damned disease. The blank stares on faces usually mean I have confused people more than explained anything. But it's not always easy to explain, particularly when myth often has more of an impact than that little thing called the truth.

The awkwardness was the psychological battle of wills between my conscience and my free will. The one that told me one minute to get some exercise, and the next was eyeing up a giant box of sweets at the local store. I'm sure many people battle this kind of 'devil on one shoulder angel on the other' thing on a regular basis, but for diabetics the constant reminder of what could happen if the the devil wins, means you fight the guilt battle more often and with greater consequence.

The awkwardness was that even though diabetes is 'out there', I only knew of one other diabetic as a child, none as a teenager and one as an adult. And with all of those people, I found out through accident, not because I could tell they had diabetes. There is a lot to be said for having a condition I can disguise. I don't look any different, I don't act any different. But sometimes, I feel different. And without that physical difference, it can be hard to find other people out there who know what this side of you really entails. I often wonder how many times I have queued up for the paper with other diabetics, have spoken with other diabetics or have shouted angry comments at the logicless drivers who sometimes offend me so. Would I have reacted differently if I had known?

The funny thing is, despite the fact that I recently bought into diabetes even further by way of getting a pump and wearing a visible label with 'Diabetic' scrawled across it, the world has opened up to me at last.

Around 4 months ago, on the 24th of January, I started a blog. This blog. It took me no time at all to become very proud of how it made me feel. It took very little time to realise this blog was helping me make sense of wearing a pump, and make sense of the changes my life was going through.

It also took very little time for me to start making friends.

On the 19th of June I will be joining Lee Nevitt and Claudia Allison, 2 type one diabetics who are travelling 20km in a wheelchair and on a bike, to raise money for diabetes and it's related conditions. At this event, I am already arranging to meet someone to talk about the pump, because they want to know more, and God knows I love to talk. I am hoping to meet a number of the people I have been conversing with on an almost daily basis.

I have gone from knowing one other diabetic, who was much older than me and never seemed to struggle, to knowing about 20 of you, by first name and with plenty to talk about. My blog, and the people who have read it, have opened up to me a way of talking to people who have been on the pump for years, have started thinking about it, and who want nothing to do with it. But it doesn't matter to me 'where people are' with their own diabetes, what matters is that I don't feel 'alone' anymore. I know that things will only grow from here. And as I get to meet more diabetics, it can only get better.

A year ago if someone told me they were diabetic, I would have been surprised and would have been pleased my contact with diabetics had doubled. Now, I consider them an extension of my friends. Not because we hang out, not because we talk all day, not because we share all the same hobbies, but because we have one thing in common.

We have diabetes. It is no longer 'I' have diabetes. WE have diabetes.

Human beings have a natural propensity to gravitate towards people we feel something in common with.

as a child I had no one with that in common with me.

As a teenager I had no one with that in common with me.

As an adult, I have this in common with a whole bunch of people.

One thing I know is, there ain't nothin' awkward about this!

Sunday 6 June 2010

Snapshots of my past

I often read articles written by parents of newly diagnosed type one children, who lament on the way their lives changed so markedly the day they received the news that diabetes had moved into their lives. The condition I know so well now demanding how the lives of another family would play out. Not just the life of each child, but also the lives of their mothers, fathers, siblings and friends.

I was diagnosed at the tender age of four and to this day the memories I have are scattered and vague - much like the memories of a dream you remember for a split second after you wake, but which then melt away to become only snapshots and pieces of the whole. As a child of four years I had no context in which to place this disease. I doubt I even knew what 'disease' or 'chronic' meant. I certainly didn't know what the condition would entail. That piece of the story followed eventually, when I had to learn how to walk that rocky path on my own.

The one thing that has struck me however, is that many of the milestones of my diagnosis and the inevitable adjustments which would soon have to be made, have stayed with me for 23 years. They never change, they never falter and they never disappear. The memories are still clear as day in my mind's eye. Perhaps I don't have quite the rounded picture of someone who was diagnosed at later age and each of the memories on their own don't tell a great deal. But stitched together, piece by piece, the patchwork quilt that is the story of my diagnosis comes together. The snippets I get here and there from my family has also helped knit all my memories together, as I am sure the days which I am about to describe will be burned in their memories forever - as I am sure many of the mothers and fathers out there would agree.

My story goes like this:

It was Christmas 1986 and I was living with my family in Germany. I was four years old and completely and utterly normal. I loved animals, art and most of all - horses. I was horse mad - just like most little girls.

In Germany it is quite customary to eat Goose for Christmas rather than the classic British choice of turkey. My family and I had gone to a local pub, where we were picking up a free range goose for the big family meal. I still remember that there was snow outside. I remember cars parked along a wall on the right hand side of a lane and I remember there being a sort of raised bed on the other side of the lane. I think the pub was white, but that bit is one of the blurry details. The lane itself has actually featured in a number of my dreams and whenever I am anywhere that reminds me of that place, I give a little thought to what was happening inside me at that time. It all makes so much sense now. If only we had known.

I remember that I was sitting slumped underneath the table in the pub and was chugging back apple juice after apple juice. I remember how thirsty I felt. I felt sick from all the juice, but was begging for more. I remember the bar, which was very long - it sort of covered one entire wall of the room. I remember a dark reddish maroon-coloured carpet, with tables and chairs made of very dark polished wood. I remember one of my brothers playing with me under the table. I think it was my older brother. I remember his face appearing in the left hand side of my vision. I remember asking for more juice.

That was my last memory of the days before diabetes took over. Although the truth is, diabetes was already well and truly manifesting itself. That was the reason for the desperate thirst for apple juice. That was the reason I felt tired, even though I was four years old and should have been tearing about the place like the kid I really was. That was the reason I don't remember anything after that. Apparently that's when I was last conscious.

I don't really remember much about hospital or the tests that must have followed. No doubt I was pricked and prodded and had blood taken from me against my will. No doubt I was confused and scared and glad to have my family there. I am glad they were there.

The next thing I really remember is going away to what is known in Germany as a 'kúr' (Cooer). These were run in Germany to help families of newly diagnosed people, with any number of different conditions, allowing them time and space to learn about these conditions with other people going through the same thing. It was kind of like a holiday camp, only it was for education and teaching as much as it was about fun. I don't think the adults were having fun - it was just us kids, but by God did we deserve it. It provided the 'grown ups' with education, a chance to meet people with shared experiences and a chance to take it all in emotionally. I guess for the kids it was a chance to play and meet other kids who also jabbed themselves daily and who had to analyse what was was in the little red drops at the end of their fingers. I thought it was fantastic, but my parents and many others were in the room next door to ours learning about what they're children were going through and what they would have to do in order to keep us alive on a daily basis. Learning about how to try and manage the impostor in their lives, the one with squatting rights that has no plan to leave. It sounds bizarre, but I remember eating a carrot every night before bed. They came arund with a load of them to everyones room and handed them out. I don't know what that was about - but I remember it.

I remember what I think may have been my first memory of a low from that trip. I remember going on a walk and had just left the building with a group. I remember walking with loads of other kids and a few adults. I remember it was very green, and there were huge plants either side of the path we were travelling. The green shrubs either side of me probably weren't really that high but I was four, and everything my body had been through meant I was on the small side. Everything just stopped growing for a while I guess, I just needed a little time to catch up.

Truth be told, even though I say I remember there were a few adults - I only remember one - a man. I don't know his exact age or name. He must have been late teens or early twenties. I don't remember what he looked like or why he was there, but I remember him sweeping me into his arms and running. Running really fast. My head was bobbing back and forth as he charged back to the site. I felt myself become more and more tired. He was talking to me the whole bumpy way back. I remember clear as day, we reached a room back at the building we were staying in. He obviously thought there wasn't enough time to find 'my' diabetes kit, because I remember him grabbing a lancet and rather than placing it in the normal blood glucose finger stick device, he jabbed it into my finger. I can't even say it hurt, I don't think I was awake enough to notice.

I would love to meet that man again. My memory of him is vague, but he features in a really specific part of my memories from that time. I only have a handful of memories to work with, much like an amnesiac piecing together who they are, I have to try and remember 'what happened', back when diabetes kicked in. This man is part of my past. And on that day, he raced back on my behalf beacuse my legs were too short to carry me fast and my energy was too low to finish the journey. That deserves a thank you.

The next memory I have is when I was back home. I was sitting on the bed in my parents room, facing a giant closet they had covering one side of the wall. I remember by little brother being one side of me, my father on the other side, and someone else was in the room as well. I expect it was my mother, as she was always there in the wings, she was then and still is now, but I was distracted when I was in this memory; I was doing my first injection.

In my hand I had one of those old hypodermic needles, the skinny plastic ones with the tough orange lid. The needle looked about a foot long and I remember how big it looked. It was huge.

I plunged it into my right thigh, gave myself the shot and looked up. My dad and brother were celebrating and telling me how impressed they were. Celebrating my courage and strength. In a way, celebrating my battle I suppose.

From then on, the memories get less and less vague and more and more recent. Each day is now filled with diabetes memories.

The day I went to hospital in an ambulance, when the ambulance man took off my t-shirt and stuck those heart rate monitors all over my chest, showing me my heart rate on the big red cardiogram on board. He probably wouldn't be allowed to do that now, but I'm glad he did. I had to go to hospital on my own in the middle of the night, because my mum, the rock that she is, had two other kids to look after and being the middle of the night, had no-one to go with me or look after the boys. I could have been a scared worried girl then, but instead, that nice man made me laugh and let me play with all the medical equipment on board, while he measured my sugars and made sure I didn't black out.

The day I went low on the beach and thanks to my brain shutting down, could not for the life of me work out how we would get up the hill to the cars. After some cocoa and a chocolate bar, I realised I was staring at the path which leads straight to the car park. It looked a lot more confusing behind the blurry hypo goggles.

The day I got the pump, the day I said "can I stamp the ticket" (my brothers will understand), the night of "I can't see, I've gone blind" (my fiance will understand), the day I got all my sugars under 10mmol, and the day my A1c came down to 7.9%.

I'm sure that one of the reasons I struggle so much to remember, is that what I was going through was kinda painful, confusing, frightening and new. The changes going on then would be with me for the rest of my life, and my mum has told me many times that I clearly didn't understand that this wasn't going to go away.

Whatever the reason I can't remember the whole story doesn't really matter.

I remember the time when I got ill, I remember learning about it, I remember experiencing my first low, I remember conquering the first big hurdle, and I remember everything thereafter.

I guess it's not just diabetes which stays with you for life, I guess the memories stay with you too.

Saturday 5 June 2010

Blame it on the 'betes!

Around a year ago, I started to notice the smallest gap appearing between my two front teeth (think Madonna....). This didn't really bother me as it was barely visible and hardly enough to worry about, but I was a little curious about how there could suddenly be room in there for teeth to be moving around. I had a tooth taken out right at the back of my mouth about 2 years ago due to a recurring abscess, and I was fairly confidnet this was the cause, but the gap didn't happen for a full year after, so I thought it was time for a visit to the tooth doctor, just to check everything was ok.

I was seen by a very well spoken, middle class (and he certainly knew it) dentist who was confident, friendly and seemed very knowledgable. I arrived and gave him a quick run down of why I was there and explained that I would like to know what was causing the gap. He explained that after the tooth being removed, there was probably just enough room for the teeth to 'shift' a little. This had been my initial thought, but bearing in mind the teeth at the back of the month are pretty big, I wanted to know just how much the gap would grow. Not to be vain, but I didn't want to look like I was losing teeth left right and centre.

I sat back in the chair while the dentist and two students poked around and looked at the teeth. He explained that everything looked fine - the gums were healthy, teeth in good shape and nicely aligned and that he thought it was probably just because teeth have a tendancy to move as they are not 'fixed' in the jaw.

After telling me this, the student who had been sat looking through the computer records detailing my every visit in the form of a databse entry, piped up, "She's a type 1 diabetic".

Everything changed.

The dentist then looked again and seemed to find a million things wrong. He pointed out to the students things he thought were wrong with my teeth and gums. Some bleeding here, some movement there.

Meanwhile I am sat there panicking about what was going on.

He advised me that the shift was "Probably down to periodontal disease, have you heard of that?"

"No." I replied, a little scared to ask what it was.

Turns out I didn't need to, he jumped on in.

"Periodontal disease is weakening and deterioration of the bones which hold the teeth in. Your diabetes is most likely the cause and the drifting of the teeth is a very definate sign. It's likely this will result in the loss of those two front teeth if you are not very careful. How is your control?"

"OK I guess, it's never been great but I do try. I'm getting a pump soon."

"Great", he answered. "The pump will slow down the damage provided you get excellent control. We will book you in for some thorough periodontal treatment to see just how much damage there is. X-rays will determine how much bone loss we are looking at at this time."

I felt numb. Lose my two front teeth - I'm 27 years old.

He proceeded to book me in for the periodontal treatment and gave me a leaflet to take away and read. The leaflet in itself was enough to bring anyone to tears. Pictures of misaligned teeth looking as though they were on the verge of falling out. Teeth missing, bleeding and receeding gums. Not very reassuring thats for sure. I'm sure there was some educational advice in there, but I couldnb't get past the pictures. I don't remember a single written word.

I drove away from the dentist that day with tears streaming down my face, imagining myself avoiding smiling, difficulty eating, a mouth full of dentures and painful gums.

I got home and cried into Jamie's shoulder for a good half an hour. He tried to console me telling me they always give you the worst case scenario, that this may be something they are telling about which will happen years down the line. He was grabbing every last option to try and make me feel better. But to me it didn't a difference if it was now, in ten years or twenty years. Diabetes, as always, had taken yet another thing from me.

I have always cleaned my teeth properly, flossed, used interdental brushes and mouthwash. Yes, I did smoke as a rebelling teenager and yes, I do like the odd diet coke, but this was something people are diagnosed with after years of ignoring proper dental hygeine or smoking 20 a day and eating sweets washed down with daily fizzy drinks. I had always taken good care of my teeth - my parents had always told me to look after them and I thought I had.

I couldn't get over his comment. "Your diabetes is most likely the cause." My diabetes, like it is something I proudly own or would fight to keep hold of. It's not MY diabetes, I belong to the diabetes. That's how I felt at that moment anyhow.

A few weeks after the first appointment, I went back to the clinic for my first set of periodontal treatment. I had some x-rays taken and waited nervously in the waiting room while the dentist mulled them over, no doubt picking out which teeth would drop out first.

I was called into the examining room and saw that there was a new dentist there. I did't want to have to explain why I was there. My notes should say it all.

"Well, the bone looks good to me, some very slight loss at the back, but those areas are much harder to reach."

"Um, I'm sorry what do you mean they look good. I thought I had periodontal disease and could lose my teeth." I stated, confused and wondering if my x-rays had been mistaken for someone elses.

"Well, there is some slight gum disease, which will never go away, but it looks to me as though you have good bone density and your gums look well cared for. I wouldn't say your teeth are 'at risk'. Provided you keep your oral hygeine good and your levels acceptable, those teeth should be just fine."

I was still confused. How two dentists could give such a different diagnosis only weeks apart seemed strange to me. Not to mention how pissed I was that I had been mourning the loss of my teeth before I even lost them. Kowing how tough it had been to ever maintain anything that resembled control, I had already decided the diabetes would never be good enough to ensure my teeth would be ok.

Over the next few weeks I attended every few weeks to have any calculus removed, check my cleaning techniques and look at the gums, and every time I was told how excellent my oral hygeine was and how great my gums looked. Each time I felt slightly better about what they were saying, but more and more confused about my initial concerns. The gap.

One day, the student hygienist who had been carrying out the cleaning, told me that she had asked an expert in periodontal treatment to look in while he was in clinic. I was happy with this as anyone who was an expert in periodontal treatment who was prepared to offer advice about how I can slow the devastation down, was very welcome to look at my case any time they wanted.

He came over and introduced himself and explained that he had some suspicions that what was going on in my mouth was not necessarily easy to diagnose, and that he would like to look at my teeth.

OK, again I was a little dismayed that there could be another (potentially worse) diagnosis, but at the end of the day each time I went I would find out something else I could do to help myself, so figured it was worth a listen.

As soon as I showed him my pearly whites, he called the student over.

"Can you see this? Her canines are worn away, probably from grinding. When she closes her teeth, there is a lot of pressure on the front teeth in all four quadrants."

"Oh yeah, I wonder why the dentist didn't notice that?"

I was listening eagerly and making all sorts of odd facial expressions as they asked me to do this with my jaw and do that with my jaw.

Eventually they concluded that because I grind my teeth, I have worn away the canines, which usually take a lot of pressure away from the very front teeth. That means that whenever I had been eating, grinding or even smiling, the front two teeth were having a great deal of pressure on them. This had caused the gum to become enflamed and started off the gum disease. Plaque had been able to get under the gum, where there was now a little room, and this meant that the teeth had also drifted a little.

I was stunned. "So it's not the diabetes?"

"I wouldn't say so. Any healing is slowed down a little when your sugars are unstable, but the gap itself may well sort itself out if we add some layering to the back of your canines, meaning they will start to take a load of those front teeth. We'll book you in for a couple of months time to see what we can do. Otherwise your gums area a great pink colour, you obviously look after them well."

The gap will sort itself out. It's not the diabetes. My canines are to blame.

I felt thrilled.

They explained that the gum disease was there and would never leave, but that if I looked after my teeth as I had been and maintained regular dental appointments, it was very doubtful it would progress and I will most likely keep these teeth for life, unless something else goes amiss.

Again, I felt thrilled.

My appointment to have the work done was 2 days ago. The specialist who had given me the good news last time was the one to carry out the work which make me happy. He added a material to the backs of my teeth which they use for the white fillings you can have. I admit it feels weird, almost as though I can't close my teeth completely, but I can already feel when I clench my jaw that there is a lot less contact with the upper and lower front teeth.

This morning, I got up and cleaned my teeth and already the gap (which had been getting bigger and more noticable lately), had closed a little. You probably wouldn't even call it a gap anymore as the teeth are aligned and almost touching.

But this led me to think about just how many times diabetes gets blamed for something which turns out to have a totally different cause.

Yes, I do have a big of gum disease, many people do. But the cause was not diabetes. It was something as simple as grinding my teeth and having too much pressure. The gaps that appeared in my teeth appeared because of inflamed gums, meaning meant that plaque was able to get in there and cause havoc. But this havoc is manageable and if I keep looking after them, it will not cause me to lose my teeth.

It had NOTHING to do with diabetes. It WAS something I could take control over. It WAS something I could do something about. Yet the initial diagnosis was all doom and gloom. Twenty three years without complications and finally I was about to pay the price for having diabetes.

I still find myself thinking about how frustrating it is that someone turned something which was not even related to diabetes, into a diabetic complication. Into something which was inevitable and all down to a matter of time.

It makes me wonder how many other people have been told that the diabetes has caused whatever it is they are suffering from.

I wonder how many so called professionals have fallen into the habit of diagnosing everything as a complication of diabetes.

I bet there are quite a few.

I bet my dentist won't be the last.

I bet next time, I will seek a second, third and even fourth opinion.