Quite often, after a race, I will be overcome with the urge to shed a few tears. Not quite to the extent of the chap that I met just after the finish of the Barcelona marathon a few weeks ago - he was collapsed in a chair just over the finish line, sobbing uncontrollably, head in hands, with two lines of snot hanging out of his nose and tears flowing like waterfalls from between his fingers, pooling on the floor under his chair. Not a pretty sight, but I did stop and offer him some comfort, as I knew exactly how he felt. The days, weeks and months of training fitting it in around work and family, coupled with the discipline of diet; nervousness and excitement preventing too much sleep in the week before race day; the massive effort that it takes to run a marathon; the relief that it is all over, together with the dissipation of adrenaline and the relief it is over. These are just some of the emotions that cause a grown man to cry like a baby. These are not negative tears though. They are cathartic tears of relief that the race is over. Perhaps tinged with sadness which may soon be replaced by entering another race.   This weekend we experienced many tears - many of them cathartic although no 

I have entered another race - April 27th, a mountain trail ultra - 46 or 47km (noone is quite sure yet) behind the Cote D'Azur. My training is therefore increasing again following the recovery from Barcelona. This past weekend, the Rolfelets, Mrs R and myself flew to Kent to attend a Family Care Weekend organised by Diabetes UK. The event was specifically aimed at families with a child /children with Diabetes, and because of the nature of the condition this was 100% made up of children with Type 1. I thought we would be pretty busy during the weekend, and as we had Friday morning free I ran my weekly long run on the trails and minor roads of Kent, near where I grew up. Whilst the weather was damp and misty, the scenery was most definitely spring like with daffodils and bluebells poking through, lambs frolicking in every field, and rabbits scattering in my path. I glimpsed a badger scurrying back to its burrow a couple of miles from my parents' house. 20 miles covered, a hearty breakfast, and we headed to Ashford for the event. 


I was not sure what to expect at the Care Event. I knew that Diabetes UK had been running them for years, and they actually host several throughout the country during the year. Diabetes UK will pay up to half the cost of the event funded through donations. I knew that the kids would have their own programme with a trip out at some point, but I was not sure what the adults would do. 

On arrival we were introduced to the team, and shown around the facilities in small groups with the kids, as well as given an agenda. I was immediately struck by the amount of volunteers that had given up their weekends to help out at the event. There were probably around 20-25 families there with children, perhaps 80-100 attendees if you like with kids ranging from 1 to around 15 years old. The volunteers (did I mention there were loads of them? At a guess I would say 40 volunteers) were all either Type 1, or working as nurses, pediatricians, Dr's, dieticians, and in some cases parents of T1 diabetics. After extensive introductions, the tour and a chat, #1 retired to the hotel room - not feeling very well but certainly a reluctant participant in the weekend given the reason for being there. #2 and #3 settled right in, and made several friends right out of the traps.  Chatting in the bar that evening with some other parents of newly diagnosed T1 kids was also fascinating - picking up nuggets such as that when checking the blood sugar level of the Diabetic, to use the word "test" implies pass or fail and increases the constant pressure on the child. #2 is already worried if she has a high reading that we (her parents) are going to be cross. The school nurse has often implied that levels are "good" and "bad" and that is something that we need to address. We now use the phrase "do your glucose / sugars". 

Saturday morning began early enough with #2 and #3 eager to get started. #2 had gone to bed with reasonably high sugars - around 16 mmol, probably due to the scone just before bed, but had woken up around 6 mmol we were pretty relaxed. #1 was dosed up with paracetamol and as she had missed dinner the previous evening was absolutely starving hungry, so accompanied us to breakfast. Which was amazing! Full English buffet, fruit, cereal, toast, pastries etc. And all very good quality - not always the case in hotels, but we were all suitably impressed and stoked up for the day. As we looked around the restaurant, nearly everyone was pricking their fingers and accompanied by a copy of Carbs and Cals, flicking through to calculate the appropriate insulin dosage. This was then dialed in to the pump, or discretely injected. #2 rushed through hers without a hint of reticence, and took herself off early to the kids' designated meeting point. The other 2 were not far behind, with the promise of a visit to a Safari Park for the day. Mrs R and I looked after them wistfully, accompanied by the other parents, and then went off to our various conference rooms. 

We were split into groups - married couples separated, in order to maximise the information that we would take in, and then rotated around various conference rooms. A diabetic nurse of many years' experience led my first group, and ran through the science of diabetes - in laymans' terms of course. This was extremely useful as it helped me to understand how management of the condition will change throughout #2's life - through puberty, into adulthood, when she is sick and so on. So often in Monaco medical professionals and the school nurses have talked about the stabilisation of #2's condition. Type 1 diabetes is not something that can be stabilised - the diabetic either has good control or not, but there will be bad days for whatever reason. It is far more art than science. 

In this first seminar, there were tears, and quite a few of them. I thought I would be one of the newest there in terms of diagnosis, but some had been diagnosed as recently as February and it was still very raw. I have compared my reaction to #2's diagnosis to that of bereavement, and that was underlined in this first meeting. I was most definitely not alone. I am conscious that I (and #2 and Mrs R) have been through some of the five stages of bereavement - denial, anger, bargaining, depression and acceptance. A T1 diagnosis is strange because it needs immediate management from day 1, but all the while the brain is processing the other stages. #2, Mrs R and I are much closer to acceptance that we were, particularly after the weekend. 

The sense of bereavement was reinforced to me when everyone was running through their diagnosis story. They were all strangely familiar, although some children were much more sick with DKA than #2 on admittance to hospital. Diabetic ketoacidosis (DKA) is a potentially life threatening illness that occurs when the body cannot absorb glucose and convert it to energy. Before diagnosis, the body is producing less or no insulin, and therefore the blood sugar levels rise because the sugar just goes round and round in the blood. Extra fluids are required by the body in order to try and get rid of these sugars - hence the thirst. At the same time, the body needs energy so needs to convert existing reserves into energy - this is why prediagnosed diabetics lose weight. As a by product of this process, Ketones are produced, but in turn these Ketones build up to toxic levels and cause DKA. Not only are the parents faced with a couple of weeks of intensive care, but then they leave hospital with a T1 diagnosis - for life. 

It was also nice to hear that other parents were struggling with controlling blood sugars too - a lot of this could be pinpointed to the "honeymoon period" - the diabetic continues to produce, sporadically, insulin as all the beta islet cells in the pancreas do not die immediately or in a linear way. Hence #2,. Mrs R and I think we have got it nailed after 2 or 3 good days, and all of a sudden #2's levels will be all over the place for absolutely no reason. This "honeymoon" period can apparently last a year or 2. Joy.

There was not a dry eye in the house - I was brought back to #2's diagnosis and how I would far rather it was me than her. 

After the initial meeting we went straight into a discussion group with a Dr - who also happened to be T1 and had been for years. There was a lot more science about Ketones and DKA which I needn't go into, but the whole seminar was excellent because we had not been given any information about DKA / Ketones by the French Diabetic Clinic - we actually bought our own test strips and realise now that we need a metre, It was clear that - with a few exceptions - the care in the UK post diagnosis was a lot better with daily phone calls and visits for a few weeks after discharge from hospital. That differs immensely from our 2 hour visit to the clinic in Nice, and as a result the medical education was immensely helpful. 

Discussion group 3 was with a dietician - again something that UK T1 diabetics are offered as part of the post diagnosis process, and again it was fabulously useful - explaining in laymans' terms Low GI and High GI and how this might work with glucose levels, as well as a group discussion and sharing of experiences about insulin delivery, timings, the value of charts, and so on. 

The fourth discussion group was led by 2 parents - 1 who was actually T1 and had been for over 30 years, and the other a parent of a child with T1. Again, without breaking the confidentiality requirements, this was a fascinating insight into life with #2 and for #2. The teenage years are not necessarily something to be embraced, but it seems as though people get through it despite going through rebellious phases and apparent refusal to treat their condition. A supportive parent is all I can be - I just hope I remember that when all hell is breaking loose. 

Throughout the weekend there were other discussions and presentations, interspersed with chats with other parents and kids. One area that I found very useful as well was the effect of #2's diagnosis on #1 & #3. #1 had already been showing signs of rebellion and perhaps hurt by her initial refusal to participate. There was a very tearful presentation of sentiment from the non - diabetic kids who had been asked to anonymously express their feelings about diabetes and their sibling. There was the usual and expected feeling of neglect in favour of the diabetic, but I was not expecting the amazingly detailed knowledge of the condition as well as sympathy for the sibling and parents. 

The kids had a great time out - of course in complete safety due to the level of diabetic knowledge out there (medical professionals and T1 diabetics) with them at all times - carbs had been calculated and insulin administered. I got the sense that this was the first break that some parents had had from their kids since diagnosis. I took #2 and #3 for a swim, and Mrs R took #1 off to Sainsbury's for some mother daughter bonding, which I sensed went extremely well and paid immediate dividends, even if it hadn't been my first choice of bonding venue. #2 had a great time with a new friend in the pool, and I spent my time with #3 doing somersaults and hand stands. It was important to take a step back, breathe and immediately put into action something I had learnt on the weekend, and went well. 

The kids had a disco that night - supervised and no parents allowed, and the parents were able to decompress and have a quiet dinner together - something I don't recall us doing since pre diagnosis, and very worthwhile. 

One of the sessions that stuck in my mind was on the Sunday morning when we were presented with a panel of T1 diabetics for a Q&A. One of the panel had been T1 for over 20 years, and commented that having attended the family weekends, enjoyed volunteering as an adult because even now it normalized the condition - albeit briefly. I believe this was keenly felt by #2, as she cried on departure for hours, perhaps contributing to her quite severe hyper (19.9) on the way home which we treated using our new found knowledge from the weekend (2 hour correction doses and testing for Ketones). 

The last seminar was a presentation and discussion about the future for T1 diabetes. I was extremely interested to hear that research funded by Diabetes UK had led to the introduction of the pen injector - a significant improvement on the traditional syringe. Diabetes UK is also funding research into a cure for diabetes, although it is generally felt that we are much more than 10 years away from that. 

We arrived home at 1am, and with school and work this morning, I was expecting fireworks and more tears this morning. However, there seems to be a spring in everyone's step having shed many a tear over the weekend. Not so much the elation of finishing a marathon, but a step closer to acceptance of life, a touch more confidence in managing the condition and family life now that it is inextricably linked to the condition, and hope for the future. 
 
 
I am always telling my kids that there is no such word as "Can't". If you put your mind to something you can normally achieve it given enough time and dedication. The girls try and tell me that they will never be able to pass a test, or swim further than 100 metres, or be able to master a particularly tricky aerial manoeuvre off the 5 metre board. With a lot of cajoling and a little more effort, they can normally do it. The most useful attribute in their arsenal is of course, a positive attitude, and sometimes a little parental input is needed in order to regain that positivity. 

This seems to be more on our minds of late with Alice and her T1 diagnosis. The constant 24/7 management of the condition, and the fact that it is results orientated, means that there is an unbelievable pressure. Alice bears the brunt of this because the consequences of not managing the condition mean that she could have significant short and long term health issues. The late night meltdown, her blotchy cheeks awash with hot tears shed in frustration and anger, brought on by an unsatisfactory glucose test result, normally result in her saying that she can't go on and is going on "greve" - strike. Devastating for a parent, but all part of the 24/7 management of childhood T1. 


It was precisely one of these late night exchanges that struck me at KM 36 during the Barcelona Marathon last weekend. I was not exactly properly prepared for the race having started training in earnest a little later in the year than normal, but given what we had been through perhaps that was to be expected. I have a big challenge in the summer to focus on, so I decided to use Barcelona as a training run, and run it with a training back pack. This would have the added bonus of having fluids, and on a hot and packed course, fighting at the aid stations would be almost guaranteed. 

As a result, I was able to relax and enjoy the pre amble to the race - a late Friday night flight and a meal in Barcelona with Mrs R and the kids, and then a tour of the City on foot the following day to take into account registration. A 3km walk via La Boqueria - the produce market - and we managed to negotiate the marathon registration with very little fuss despite the massive amount of participants - 15000 or so.  I also managed to find some of the Finnish ICE - post marathon deep heat type of stuff, but menthol and therefore deep freeze if you like. I used it post the Helsinki marathon and it was brilliant for recovery - like having ANOTHER cold bath after the run, but enabling me to sit in the bar at the same time!

After a quick bite, I virtually frogmarched the moaning hoards in the dusty heat back to the centre of town in order to see the Gaudi house. Mrs R and the kids had not heard of Gaudi, nor his famous architecture, but I was determined to introduce them as it is truly breathtaking. Their protestations fell on deaf ears, and they were pleased. More than pleased in fact - thrilled.

We could not get inside as there was too big a queue, but we walked back to the hotel and then pottered around the old town for a bit, seeing the cathedral and the dancing going on outside. It was sort of a very repetitive line dance. Weird.

We walked back up to the Gaudi house at night to have another look - even more impressive, and again could not get in, but had a nice pasta dinner nearby. We got to bed around 11.15ish after glucose testing etc - not too bad.

I slept very well having walked miles on saturday, and woke with my alarm at 6.30am. I had bought some muesli and had it in the bathroom, with a cup of tea and coffee. Then I vassed everything and then strapped on my camelback with an extra few 100 grams. I also strapped my knee. I eschewed the metro and jog/walked to the marathon start - dropped my drop bag off (although why I needed extra jumpers and so on, I don't know - it was roasting hot on the day). The start was at 8.30am and it was already hot in the sun, but the atmosphere was amazing - bands playing and everyone loving it. I was in wave 2, after the elites and wheelchair runners, about 5 mins after the gun went. There was a load of tissue paper in the air - like big pieces of confetti, and funnily enough I needed a wee the minute I crossed the start line!

I was amazed at the speed with which everyone shot off - my pacing strategy has become second nature, and with a pack it was even more important to pace because the pack would take its toll particularly on road. But within a few minutes I was being passed by wave 3 runners, and then wave 4! People were sprinting! I knew I would be seeing a lot of them in the latter stages of the race, particularly when it really heated up!

I really enjoyed the first 10km - just enjoying the amazing sights of Barcelona. We passed the Gaudi house quite early on, and then the Sagredi Church which was also cool. I managed to have a pee in a hedge near Barcelona FC football stadium - taking photos all the time. The aid stations were a joy because I did not need anything, and I avoided the scrum. I started to overtake people without really trying at 10km or so.

At 16km my left hip was starting to hurt. I have no idea why - it is not something I have ever come across before - maybe reflected from the knee which was giving me a tiny bit of gyp in the run up to the race? Who knows. I thought also it may be because I was on the right hand side of the road so there was a slight uphill camber - the left leg slightly higher? Anyway, I took a nurofen and tried to run down the middle of the road where I could. After 18km we were running "out" and others were running "in" alongside us having covered 21-22km or so. Was very good for my morale to see how in pain they all looked. Way worse shape than me, as I actually felt quite fresh despite the heat and hip / left thigh pain.

When I was on the "in" stretch, the morale was boosted further particularly when I was overtaken by Captain Caveman. There wasn't too much dressing up, but it was a great atmosphere. The crowds were amazing - lining most of the route, sometimes pushing runners down to almost single file because there were so many watching.  Halfway came up in 1hr 58 and small change. I tried to speed up a little.

The route was billed as fast and flat - it was definitely not flat! There were long slopes - and the occasional steep ramp - also very hot with little shade. As 25km came up and we were threading through the old town, past the cathedral, down to the coast, and people started walking in earnest. It was going to be a long slow slog for those guys to get to the finish. We got to the coast, and another "out" and "back" section to bring up 30km. The ambulance crews were starting to earn their money - the heat and sun taking its toll. Some were stretched out on drips by the side of the road. I tried to nibble away at people in front of me, and latched on to several groups - one group of 3 with matching club tops. I gradually reeled them in, and over took. Then the Judo club tops - took me a couple of kms to nibble but gradually got to them. The aid stations helped as people would walk through those. I needed something other than my sports drink in my pack so I occasionally grabbed some water - no Coke unfortunately. The ground was slippery with bananas, every 2.5km!

36km came up and I was feeling it myself - my feet hurt a little, and my left leg was painful but I cracked on. It helped me to think about #2 and the fact that in a short period of time I would be finished...unlike #2 and her condition. Plenty of people stopped and I tried to chivvy along a french chap who was rippling with muscle but had broken. I told him it was not far in french - at least that is what I think I said, it may have been that it was still a long way to go! My French was not great after 36km in the sunshine! The curbs were littered with people stretching, cramping, on drips, sitting head in hands....was quite the sight.  I carried on nibbling but we had a long 3 or 4km gradual climb to the finish. Whoever said it was a flat course was in a car! 200m from the finish and the crowds were 10 deep and cheering wildly. I managed to overtake a few people, no doubt surprised to see me coming past with a pack, and dodged the chap being attended to by paramedics on the corner. His legs were twisted unnaturally with cramp!!

I ran over the line in exactly 3hr 57, almost exactly the same time to do the 2nd half as the first half. I was smiling, and happy with my achievement. A pb for me - best marathon time with a pack!!!

Unfortunately, the post marathon organisation was a little wanting. It was terrific pre and during - with people giving out vaseline, and plenty of aid stations and so on. Afterwards however there was a tiny amount of food and hardly any fluids on offer in the recovery area - I picked up my medal, then had to walk against the crowds to the drop bag place; I queued for my bag, was told I was in the wrong queue and had to queue again, then was disgorged back into the masses and again I had to force my way through 200m of seething crowds. I took the Metro a couple of stops closer to the hotel, and got back for a quick shower and to meet Mrs R and the kids (who had spent the morning inside the Gaudi house - jealous!). I put on the ICE stuff - a little too high up the leg which was painful!!! and then we walked to the port for a beautiful fresh fish lunch and a shandy. That was the just what the Dr ordered. The kids made me wear my medal for the rest of the day!


I have done a few marathons now, and the last 10km is never easy, but it really helps to dig in and think about something that motivates you to keep going. That particular run was not really a pressure race for me, and it could have been so easy to just give up and start walking with the others. However, I dug deep - as Alice has to do on occasion, and realise that to suck up the pain is worth so much more than the alternative. A long slog back and a feeling of disappointment. The pain starts to go the minute I cross the finish line. For Alice there is - at the moment - no finish line. 



 
 
You remember the kids bedtime story of Goldilocks and the Three Bears - child gets lost in the woods, stumbles across a house (belonging to the eponymous Three Bears who have gone out for a walk in order to let their porridge get really cold and stodgy - I mean, who does that? my porridge goes stodgy and freezing after three nanoseconds), gets a bit peckish, tries the three bowls of porridge until she finds one that is just right, and scoffs it. But only after trying all three chairs at the table, finding the one that was just right and breaking it.Then she falls into a carb coma, but only after trying all three of the bears' beds, until she finds one that is just right. When the bears come back from their walk, they discover Goldilocks and she runs away never to be seen again.  An interesting footnote here, the original Goldilocks was an "ugly, foulmouthed, dirty vagrant woman" and the three bears were cleanliving bachelor bears. That was, until Disney got his hands on it.

The moral of the story is that one should always respect the property and privacy of others, although the common theme that is most referred to in the Goldilocks story was that she was looking for "just right". The elusive hunt for the "Goldilocks" economy has been a common theme throughout my career.

Since Alice's Type 1 diagnosis I find myself reminded of the tale of Goldilocks, and how we are constantly looking for that "just right" blood glucose level. The Dr's so far seem quite happy with the way things are going and our management of Alice's blood sugar levels. We tend not to have too many peaks or troughs, and whilst she experiences some hypos Alice seems happier having those rather than being high - she realises that if she is high for a sustained period then the unpleasant cumulative side effects are more common. She prefers to have good control, and with Mrs R's outstanding diligence on the home preparation of food (fresh ingredients, good mix of food groups, diligently weighing every portion and so on), generally Alice's levels are pretty good. 

Sometimes it is just not that easy. After our trial ski weekend in the very friendly and small resort of La Colmiane, with (I am minded to say) very healthy food, we spent a week in Val D'Isere on a family holiday. This was terrific fun overall, and we coped with the diabetes quite well, although it was not particularly easy. Val D'Isere is a huge resort with lots of skiing, and is very high in terms of altitude, and whilst this has attractions (lots of skiing, virtually guaranteed snow), it held "challenges" for us - a Type 1 diabetic and her family. Probably our main concern was Alice having a bad hypo on a chair lift whilst skiing with her teacher and class mates - she had lessons booked every morning from 9-12. We had lunch most days on the mountain, so someone had to take her insulin (which must not get too cold - or hot), so that she could actually eat. We managed to send her off to lessons reasonably stoked up in terms of blood glucose levels, and then stuffed her pockets with dextrose and Skittles (pure sugar is the best way to treat a hypo as it is fast acting and very predictable in terms of carb doseage - Skittles too). Alice was admirably grown up about the whole thing, and when she felt she was a bit "high", she would have a herbal tea at the coffee stop, unlike the rest of her class scoffing hot chocolates and Mars Bars. This still brings a lump to my throat - she has had to grow up so quickly. 

Once she was with us, the responsibility was no longer on her, and she would visibly relax in the afternoon. Normally when the moods and parental pushback would start. Mood swings are part and parcel of being 11/12 years old, and being rude to one's parents goes with the territory.  These could be exacerbated with high or low blood sugar levels, though, together with the constant arguing and "strikes" when she would refuse to test and / or take her insulin. The combination of not knowing exactly what she was eating, the constant exercise (we skied a lot, and when we weren't skiing we were sledging, or walking, or building snowmen, etc), altitude, extreme cold and excitement meant that her levels were a little erratic. When she came off a chair lift crying (I was on the one in front, and she was with a friend), I was concerned. It turned out that a man had been very rude to her in the queue. A few minutes later Alice mentioned she felt quite funny, and I tested her blood and it was 1.7. Given her grandfather was admitted to hospital the previous with a hypo related seizure and his blood was 1.3, and Alice had really only just eaten, I felt like I had just watched my daughter have a very near miss when crossing the road. She recovered with no ill effects, carried on skiing and it was as if nothing had happened, but it was a near miss for sure. 


This past weekend, we have experienced the opposite - we had a weekend staying with friends in Limone (about an hour and a half from Monaco and coincidentally the start of the Cro Magnon). We drove up Friday night, had a lovely dinner out (pizza / pasta), skied all day Saturday in fantastic sunshine and snow, although the slopes were packed, and lunch was a hot dog. Dinner again was pasta, and because we thought we would ski the next day we reduced the slow acting dose of insulin for Alice and ran her slightly high in the evening due to upcoming physical activity. Best laid plans and all that, but Sunday morning came around and noone fancied skiing too much - which was fine by me because I was buying 5 day lift passes every day - not cheap! We went swimming instead (after I had taken the hounds for a run up the hill), which was free, and pottered about packing up. Alice's sugar was pretty high during the morning, but we had a nice pizza for lunch, administered an extra unit, and drove home. She had to have another unit on arrival at home as she was still high, and after dinner and another corrective doseage, she went to bed high and really fed up. We tested her 2 hours after dinner (10.15pm) hoping for an early night all around, and Alice was still high - almost 14 (Goldilocks is between 4 and 8, although normally a little higher at night is fine - perhaps 10 ish). At that point, Alice lost it - she was stressed out and felt awful because she had been high for a while, and could not then sleep. She had another unit at around 10.45pm, and we managed to get her to sleep at 1 ish. Even today, she was still high when she woke up - had another corrective unit and the morning off school because of fatigue and feeling rubbish (headache, urinary tract infection, thirsty, needing the loo a lot, and so on), and has eaten virtually nothing by salad all day. It was not until 1pm this afternoon after multiple corrective doses that she has come back to something approaching Goldilocks levels - we wait and see how this afternoon went at school.


Sadly, Diabetes Type 1 is not as easy as trying three bowls of porridge, and deciding which one is just right. However, all this experience is helping us - and Alice - build up a virtual database of information. Perhaps with hindsight she should have had more corrective doses the minute we knew we wouldn't ski.

In the meantime, my training and fund raising for my "two laps of the Cro Magnon" is coming along. I am off to Barcelona this weekend for the marathon - as a training run (who does that?), and we have done a recce of the route from Monaco to Limone. It is hilly. And I am not allowed to go through the tunnel unless I am in a car. If anyone wants to volunteer to give me a lift that would be much appreciated! Alternatively I can hitch-hike, or climb the col over the top of the tunnel - adding another 20km to my 1st lap...which is a possibility!  I will play it by ear a bit, but climbing over the top of the Col might be quite fun. It would be great to have some company over the top if anyone fancies it? The fund raising is going really well and many many thanks for all your very kind donations. If you would like to check out my page please visit www.justgiving.com/totallynuts

 
 
If you didn't already know, Number 2 Rolfelet was diagnosed with Type 1 diabetes on 23rd December 2013, and our lives have changed forever. There is the practical side of things: her pancreas no longer produces insulin, which is required to absorb carbohydrates.  The only way to get insulin into her body is to inject it. Every time she eats she has to calculate the carb content of every meal (who knew Brussels Sprouts were quite so high in carbs?). Too much insulin, and she can pass out and have a seizure.  Too little insulin and her blood sugar can go through the roof - meaning the body is breaking down fat and then muscle tissue to survive. This can have secondary effects including stroke and coma. Too high for too long, and diabetics can lose limbs or their eyesight.

We had 12 hours in hospital in the UK to get used to the management of the condition, and then an agonising wait to get accepted onto the French/Monaco system when we got back after Christmas. We had thought we had gotten over the sleep deprivation years of kids, but they had returned with a vengeance, worrying about nighttime hypos and dealing with an 11 year old's midnight mood swings whilst trying to shove toast with Nutella into her.  Alice was also worried about others' perception of her. Never the most of confident of children, she had just settled down at school and this was a massive setback - pricking her finger to draw blood in class, and perhaps talking gobbldygook in front of her peers if her sugars were too low.

Type 1 is a seemingly random event - a virus or genetic flaw triggering the body to kill off it's pancreas, might be to blame. It is totally different from Type 2 which has been linked to lifestyle.  We want to spread awareness of Type 1 diabetes - and prevent insensitive teachers from accusing Alice of causing the condition from too many sweets (yes, it happened).  Around 20,000 kids are Type 1 in France, in contrast to the some 3 million adults with Type 2. Hence the near 2 month wait to get onto the French Type 1 programme. In the agonising interim, Diabetes UK helped us with education and information, and a lot of support. Even now we are in the French system, we are still leaning on Diabetes UK for help.

Which brings me nicely onto my next challenge. I want to raise awareness for Diabetes Type 1 to prevent any more insensitive comments. Alice has a modicum of self confidence back. She is gradually becoming more independent treating her condition. I want that to continue and to prevent setbacks. I would also like to raise money for this fabulous charity. Did I mention they also fund research? They might be able to find a cure in Alice's lifetime. Imagine that. A new pancreas.

My challenge: I was always down to run the Cro Magnon on June 21/22 - a race I have been helping with the organisation of, in a very small way, and had always planned to run it. 135km of mountain trails with 7800m or so of climbing. Non stop. In order to REALLY get your attention, I have decided to also run to the start. With all my equipment, unsupported and non stop. An extra 90-100km, on mountain B roads. To put this into perspective, the Marathon des Sables is only 15km more (250km or so), and you get 7 days to run that, and there aren't really any mountains. I am planning on doing 2 laps of the Cro in around half the allotted time it takes to do the Sables.

Please take a minute to visit my page. Please forward to any and all of your friends and acquaintances. Please spread the word.

http://www.justgiving.com/totallynuts

Many many thanks

 
 
I don't know why, but any sporting hobby seems to require oodles of kit to be acquired, and often not on a one off basis. When I started running, I had an old pair of trainers and some old rugby shorts. Now I seem to have whole wardrobes full of different types of shoes, clothing for all weathers, back packs. And that is before I have moved on to the bike and cycling. For a while I even had 2 bikes. I was chatting to a friend over the weekend and he was talking about ski touring, and his eyes lit up with the thought of a whole load of new kit acquisition with the advent of his new hobby.

Alice seems to enjoy this aspect of her new condition. She has customised her pens she uses to inject the insulin doses, and was less than thrilled when we could not get anything other than disposable pens for a while. She is also now adamant she wants to move to a pump to administer her insulin, rather than the injections. Whilst she would still have to move the site of the catheter every couple of days, it would mean a lot less injections, and potentially much better control over her blood levels because fractions of units of insulin are possible. She is very excited at the thought of getting the pump, because she can have a purple one, and it will also necessitate the purchase of a new belt from which to hang the pump. For her watersports, she can disconnect the pump for a period of time, leaving just a small piece of plastic on display on her skin, and then the pump easily reattaches later on.  She is booked in for education and fitting of the pump in April just before her birthday, which will necessitate either Mrs R or myself staying in with her overnight. However, it is great that Alice is so excited about the new development and treatment of her diabetes. 

Alice is also excited about my new project - I have decided to raise awareness and money for Diabetes UK, and in order to do so have decided to run the Cro Magnon - 135km over the mountains. In order to make it a proper challenge, I have also decided to run to the start of the Cro - about 90km from Monaco to Limone. Please take a minute to visit my fundraising page _

 
 
As the saying goes, you never regret the things you do but you always regret the things you didn't do. I subscribe to this theory in the most part, and I look back with regret at all the girls I should have kissed but due to my lack of confidence as a chubby teenager, didn't. Probably for the best, actually.

This is not always the best course of action, particularly when it comes to speaking ones mind, it turns out. You probably know that daughter #2 is Type 1 diabetic, having been diagnosed on 23rd December. Part of the condition - which is entirely manageable although not ideal - is that insulin has to be administered with every meal, and having low blood sugar is in the short term as dangerous as having high blood sugar, and this requires constant weighing of portions, carb counting, and fine tuning the amount of insulin administered to suit the food groups consumed, and in what quantities. The household calculator count has gone through the roof.

Mondays are particularly tricky. #1 (fully into teenager mode, with headphones permanently installed, and monosyllabic responses at best) and #2 have music until 7.45pm ish on a Monday, and are under strict instructions to come straight home - a 5 minute bus journey. #1 tends to stretch the boundaries a little, hanging around with her mates after the lessons, "missing" buses and so on. This was an issue before the 23rd December, because noone in the house would eat until at least 8.30pm, which means that bed time would be around 9.30pm at the earliest, and #3 would be exhausted for the rest of the week. As weekdays begin with a 7.30am departure for everyone, the late nights were not ideal.

The urgency with which #1 & #2 are required to come home has been exacerbated by the diabetes diagnosis. #2 has to be tested around 2 hours after eating, not to mention the hassle before eating measuring portions and so on. Then 2 lots of injections (the fast acting for the meal, and the slow release which provides a base line insulin level, injected before bed every day).

Last night #1 and #2 did not come home until around 8.30pm, despite having been free for a while beforehand. Phones and requests to come home were ignored, despite pleas from #2 who as you can imagine is as stressed by the evening routine as everyone else.  When they eventually arrived, #1 was extremely hostile, rude and ill tempered. Unfortunately my temper was tested, and I lost it.

#1 spent the rest of the evening with no iPod, phone and other electronics, sobbing. #2 was stressed, but not as stressed as Mrs R and myself. The last test was done at around 11ish, with #2 on 4.6 - quite low, but we were confident that she would rally through the night due to the late meal and the fact it was wholemeal pasta.  I then spent the rest of most of the night staring at the ceiling.

So I did regret my actions after doing something - I regret losing my temper. It cannot be much fun for #1 to have to live with all this. She probably feels neglected, and normal teenage behaviour is to test the boundaries, although I cannot remember doing anything like that myself. Must be a girl thing...

Something I do not regret, though, is changing my plans for my long run on Sunday morning. It was the first day for a long time when it had not been raining. I had planned to get up around 7, run the scheduled 23km on the roads, and be home in time to cook breakfast around 9. However, running the same long run every weekend can be a little on the dull side despite the fantastic scenery, so as I ran up to town I saw the snow on the top of the Col. I decided to head up there to see what it was like, as it was such a glorious day.

After a few hundred metres of road, I saw a sign for a footpath to the Col, so again on the spur of the moment I decided to take it. I knew that this would slow me down a little, and I might not be back in time to cook breakfast, but what a fantastic morning, and it immediately felt great to get on the trails. Well, I say it felt great, but the ascent was about 1 in 7, and in some cases the footpath was a river of fast running and freezing cold snow melt. I had to walk certain sections, but was mainly slow jogging up, running on the flats and sprinting the brief downhills. At one point I actually shouted out loud how good it was - there was noone on the trail and the sunrise was spectacular over the Med.

It took a while, but I made it to the top and this coincidentally was the snow line, and also half way for the 23km. It had taken 1hr and 34 to get up. A couple of quick photos and then the fast descent - this was great fun and I was surprised as to how good I was feeling flowing down the rocky, jagged track. I crossed paths with a couple of hikers, who looked at me quizzically, and I was home in an hour and 7. A nice pickup on the splits, a great run, a fabulous workout (was pretty tired at the end) and a smile on my face. It was a lovely surprise to have scrambled eggs cooked for me on my return.

I did, however, regret not taking the dogs with me. They would have loved it. Next time....


 
 
Seventeen minutes past midnight. I was brought back to reality with a sharp poke in the ribs and the words "Get. On. With. It." hissed through Mrs R's front teeth. I tried to drag my exhausted body to an upright position and put one foot in front of another to move forward. It required a superhuman effort, as if I was trying to drag myself through partially set jelly. My body just would not cooperate. 

This was not an experience from one of my most recent ultra runs with 20 miles still to run in the dark until the finish and some rest (well, ok, it could have been, but it wasn't), I was actually only required to go to #2's bedroom and test her blood. She had had a hypo at around 11pm - we ate late because one of the kids had a concert - I cannot remember which one! - and then we got stuck in a traffic jam on the way home. Food, insulin, hypo, dextrose tablets, tantrums, and then the further glucose tests to make sure the levels were in an acceptable range to get her through the night. All at the end of a monstrously busy week with work, kids' musical and sporting endeavours and the usual homework and so on. Anyone that lives in MC will tell you that the school term times are absolute mayhem, and often we end up eating supper at 9pm during the week. The payoff is obviously the 3 months summer holiday, although during the holidays parents and sometimes the kids find themselves wistfully looking back at the school term and counting down the days until the "Rentree" (but we won't go there!).

Life is gradually getting back to some sort of normalcy. We went skiing. It was brilliant. 
#2 was very apprehensive at first, but by the end of the weekend was enjoying the attention and all her peers seemed to either ignore the diabetes or actively help her monitor it. She had a few hypos which was to be expected given the exercise, altitude and so on, but the controlled environment of the very tiny resort meant that we were never more than 5 minutes away from her. Our main skiing holiday in a few weeks time might be slightly different, and I can imagine that I will probably end up stalking #2's ski class for the duration, but that is fine by me if it means we can all get out and enjoy ourselves rather than cooped up at home, wishing we could go back to how things were. That is not an option, but then the glass is better viewed as half full, right?
I actually managed to get out and do a run last weekend too - the Nice to Monaco half marathon. The weather was distinctly uncooperative, and I was a lot slower than in previous years, but it was my first race of the year and I was not exactly in tip top shape. I finished cross with my time, but over the moon to have actually got out and run a race (yet another yellow t shirt for the collection) and done it in a much faster time than I would have run a training run. I am contemplating a couple of challenges to raise money and awareness for diabetes research in the near future as well, but we are not quite ready for that commitment just yet.

We are getting into a routine with the diabetes treatment - counting the carbs, testing, treating hypos and so on, and as such are becoming far more relaxed about things. However, at the end of the day, there is still a lot of stress involved, particularly when a pre teenage girl is thrown into the mix. We often see tantrums, the odd bout of self pity, and the endless negotiations and discussions about the nighttime snack (which varies depending on glucose levels, time of supper, what #2 fancies....). 

Before diagnosis, Mrs R and I would often collapse into our respective arm chairs at the end of the day, glass of Sauv Blanc in hand, breathe a sigh of relief, switch on Dexter or Breaking Bad, and then wake up at the closing credits. These days sometimes we don't even bother to switch the tv on! Life is definitely getting easier for everyone involved, and although we definitely have good days and bad days, it is definitely nice to have some good days!




 
 
This is not something I have ever been familiar with - for some reason I have always wanted to stand out and to be NOT normal - perhaps it is to mask a lack of confidence or just some innate sense of showmanship, who knows, probably best not to dwell on it too much. I am reminded of a quote from the new film relea3se "Lone Survivor" with Mark Wahlberg - "Anything in life worth doing is worth overdoing.  Moderation is for cowards." taken in part from the voice over in the trailer. I am oft accused of overdoing things, and that is fine with me. 

#2 however has always desired to be normal - perhaps it is being a middle child or just an innate lack of confidence. We have worked really hard over the years to try and bring her out of her shell - she has always loved the company of adults perhaps because they are non judgmental, and she has rarely played with her peers. She has obviously eventually made friends - not so many though, and they tend to have a similar personality to her. She takes criticism to heart, and whilst she struggled at her first two schools she gained a little in confidence with her music and her sport. 

That was perhaps one of the most heartbreaking aspects of her diabetes diagnosis - having got herself to a level with a few really close - not to mention loyal and longstanding - friends, she has encountered a bit of a roadblock. Instead of enjoying a carefree life - outside of school of course - she is now having to test frequently, count carbs, and inject. As a family we live from meal to meal, planning, weighing, counting, interpreting, and building a mental database of glucose levels and how various foods affect these levels at any given time. We spend most of our meals discussing insulin amounts, and try to estimate the best time during the meal at which #2 injects, in order to try and avoid a post meal hypo - which seems to be reasonably frequent. 

None of this is normal. We have been for lunch once as a family since this happened and were pleased to have controlled the glucose levels reasonably well around the meal. As a couple, Mrs R and I have not left #2's side let alone have a normal conversation. On Friday, however, #2 went to the new Monaco Starbucks on her own with friends. We were of course in constant contact with her, and once she had ordered she called me and I tried to estimate the carb content of her order. Of course, the drink and snack she bought were not on the Starbucks website, but I made a reasonable stab at it, and she injected an extra couple of units (her 3rd of the day with another 2 to come). 

Within half an hour she was hypoglycaemic, which she treated herself with Dextrose and a biscuit, and she came home a little groggy and grumpy. This in turn prompted the "I wish I was normal" conversation, because none of her friends had had their parents on the phone every 5 minutes wondering how they were; none of her friends had to draw blood every 15 minutes to check their glucose levels - in fact some of her friends are afraid of blood (wimps); none of her friends had to administer insulin just to enjoy a snack at a coffee shop. 

It was stormy weather last week and all weekend - the perfect opportunity to stay at home, have a log fire, and do lots of home cooking thus keeping the blood glucose levels pretty stable and almost without exception within the range. With practise we are all - including Alice - getting better at managing and controlling the Diabetes - rather than the other way around. There is a tentative plan for Mrs R and I to have a night off this week - I am sure that Diabetes will dominate the discussion over dinner, but a change of scenery might be as good as a rest. We are also planning a ski trip this weekend to try and get to grips with altitude, cold and other factors which can interfere with the condition.

We are moving on, and although #2 is not 'normal', we are trying to continue as normally as possible. 

 
 
Every day seems to get a little easier, and every day is a new day. Alice's diagnosis hit us all pretty hard particularly given the time of year. Two quotes from the Doctor in York District Hospital (which was terrific by the way - they were brilliant at the time and have been on the end of the phone for when we needed them since, given our first French Diabetes Clinic appointment is on 12 February), stick in the mind. 

The first is that being diagnosed with Type 1 diabetes is like being given an instruction manual and then after a day being told to go off and fly the 747 solo.

The second was that being diagnosed Diabetes Type 1, for the whole family, is like a bereavement. 

We, her parents, and Alice herself, are doing our best to keep her blood sugar between 4 and 8. This is not always easy but we were doing pretty well until the sports started. Then she kept having hypos - 7 in 2 days at the end of last week. Not severe, but low enough (sub 3) to get us all worried. We reduced her nighttime doseage and erred on the side of caution before sports, and this seemed to go ok even if she was a touch high (maybe 10 or so). Not easy. Then she went to a kids party yesterday to play the Laser Game - I went with her to help but she was 15 when we went in, which worried her as she is aware of the longer term implications of being high for a long time (DKA and then the other side effects later in life). We managed her emotions and estimated the cakes and sweets and gave her a couple of corrective shots and she was pretty stable until this morning when she had a bagel. We rounded the units down and she spent most of the morning around 15 - prompting a call from the school nurse.....

As I said, we are taking one step at a time. The good news is that we have managed to have 2 nights (not yet in a row though) of sleep over the weekend, which was badly needed and very gratefully received.

In the meantime, I have found training and running to be a life saver, literally. I have been able to process the information that we have received through trial and error - which foods react in a certain way and so on, and trying to work out a way to stabilise the blood sugar levels. I also find it cathartic - it helps me destress from work and now from the situation at home too. We are healing, and the running is helping me particularly with that. 

This morning, I did not want to run - was not planning on it, in fact, but Psycho texted me and suggested something a bit different - a run finishing with a sprint up a long staircase. I was tired when I got out of bed and hoping to receive a text from Psycho saying he'd had a rough night, and wouldn't come, then I could go back to bed ;-) but in the event he did not! He said he had felt the same (believe that we both felt it good to commit the night before because then we could not let the other person down - a neat trick), and we ran quite quickly about 4km before stumbling upon a stair case. We sprinted up (I use the term in the loosest possible sense) and then jogged back down - round a block to come down the road. Repeat 4x until legs are crying out in pain, and then sprint back home again. 

Just over 7.5km in total, but I finished the run in a completely different frame of mind to that which I started - I had spent a bit of time with a mate, trained hard if short, and it was different and therefore not boring. Jack liked it too. Although not as much as yesterdays slow, hilly trail run. 


 

Why Me?

01/08/2014

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"Why me?"

There can be few more heart wrenching words than when your child turns to you, their face impossibly blotchy red and tear stained, and plead "But Daddy, why me? Why not someone else? What did I do to deserve this?" I felt helpless and gutted. Not gutted in the way that you feel if your team is thrashed, or you failed to achieve a personal goal in some way, but like someone took a serrated blade to your stomach and pulled out your intestines with their hands.

It was 10.30am on 23rd December and my daughter Alice had just been diagnosed with Type 1 diabetes. Admittedly it was not something else - worse, like a terminal illness, but also it was not something like a broken arm which could be fixed with a plaster cast for 6 weeks and then life would continue as normal. Diabetes in both forms - Type 1 or Type 2 - is completely manageable assuming you want to manage it, and there is always the possibility of a cure in 5 or 10 years' time, but our lives will never be normal in the old sense, again. Especially for Alice, who is now saddled with endless blood tests, carb counting and at least 4 insulin injections a day for the rest of her life.  If I could take the condition away from Alice to have it myself I would do so in a heartbeat.

It has been two weeks since the diagnosis, and it could not have come at a worse possible time - Christmas. Long, drawn out meals at odd times of the day and night coupled with all the sweets, chocolates, mince pies and Christmas Pudding have meant spiking blood sugar levels and for a family that is trying to get the blood sugar levels down to a stable range this has meant testing blood sugar levels at 1am and then 6am as well as every 2 hours during waking hours.  Going back to school has also been one of the most stressful experiences of my life. Alice was terrified that everyone would look at her differently - stigmatize her for having special privileges such as being able to eat in class (where necessary) and for having to inject. In the event, Day 1 went quite well, and although Alice's condition is not yet common knowledge amongst her peers, her blood control was good and she met another Type 1 girl 18 months older than Alice, and that has proved infinitely more beneficial than chatting to her grandparents - two of which are Type 2.

Alice loves her food - it has not always been the case, as she was quite a sickly baby and then hated the first 2 schools she went to, frequently vomiting on arrival. Music, sport and food has become her salvation. She plans her meals and snacks religiously to fit in with her extensive extra curricular activities, and often bakes cakes to sell for extra pocket money, sampling her wares of course!  She loves trying different types of food from all around the world- curry, snails and sushi being some of her current favourites

Type 1 diabetes is where the Pancreas stops making insulin. There is no current scientific conclusion as to why this occurs - it is in no way related to diet, obesity or lifestyle (not that Alice should have been worried as she leads a very active lifestyle and eats very healthily anyway). In fact, the latest theories couple some unexplained Genetics (although there is no history of Type 1 in either my or my wife's family) with a viral trigger, as Diabetes Type 1 occurs in clusters - basically some sort of infection. Diabetes Type 1 is more often than not diagnosed in children - often between the ages of 11-14, although instances have occurred in much younger children and adults too.  In contrast, Type 2 Diabetes is intrinsically linked with diet and exercise, as well as obesity, and is far more common in adults. It is often called Mature Onset Diabetes, and it is where the body becomes resistant to insulin and this needs to be augmented. Type 2 diabetes can often be controlled through diet and pills, whereas Type 1 can only be controlled through insulin injections, as the insulin would be broken down by the acid in the stomach.

The symptoms of both types of Diabetes can often be similar - unexplained weight loss, thirst, passing urine more frequently, extreme tiredness and genital itching or regular episodes of thrush. However, the symptoms presented in Type 1 Diabetes tend to occur rapidly.

We noticed several symptoms towards the end of the summer, and especially since restarting School in September, Alice had noticeably lost weight. At her age this can be put down to a growth spurt, as well as increased levels of physical activity given she has risen up through the ranks in Diving - her chosen sport. She had also had several yeast infections, but was not noticeably more thirsty - at least to her parents, and as such was not passing urine as frequently as all that (with four girls in the house someone always seems to occupy a bathroom / loo somewhere). She had visited the local GP who commented on the weight loss but was not overly concerned. When we arrived with my wife's parents in Yorkshire, we observed the usual family practise of using his blood sugar monitor to test the whole family. My father in law has been Type 2 diabetic for some time. Everyone came in with a blood sugar level of between 5 mmol/l and 6 mmol/l, and Alice's was so high that the reading was just "High". After 12 hours of just water, Alice was still 19. We went straight to the York District Hospital Pediatric Ward, and within what seemed like a few seconds, our lives had changed forever.

The ramifications of this diagnosis have been varied. There are the obvious ones such as carb counting (something which can annoy all the family especially Alice, although we also find quite fascinating and enjoy the maths behind it). There is the decision - for Alice - to eat what she wants and just increase the insulin dose (the higher the dose, the more the discomfort or even pain of the injection), or to eat fewer carbs and inject less insulin although for Alice perhaps enjoy her food less. She absolutely adores fresh white bread. There are also other ramifications - Alice wants to be normal, and does not want to be labelled as different or even disabled. She is worried about telling people in case she is accused of having caused the condition herself, and being bullied for having a sweet tooth or perhaps greedy - even though we and she understand that this is nonsense.  She is worried about the teachers in her school not allowing her to test in class if she feels a bit woozy, and perhaps eating in front of the others. Theft of the equipment. Having a hypo in class and being teased for it - perhaps being labeled insane....the list goes on. And of course, as her parents, we take these worries on board. One of the toughest issues to deal with currently, is trying to persuade an 11 year old girl that she needs to plan what she eats beforehand - the insulin takes 20 minutes to work, so injecting just before a meal is optimal. Weighing out exactly what she is going to eat, measuring the carb content, and then injecting the commensurate level of insulin, and then all of a sudden she changes her mind, fancies something else entirely and has a meltdown. She is after all only 11.

We are currently trying to get enrolled in the French / Monaco system, although have not yet met anyone else in Monaco with Type 1 diabetes (even though Alice has). I am sure there will be some, and it would be great for Alice to meet them to discuss her fears and know that someone else has blazed a trail already, and that she is not alone. We have also applied for a couple of British events - for families and a sort of Diabetic Outward Bound holiday for Alice, in order that she can be educated and that she realises that she is not alone and can in fact lead a normal life as long as the condition is managed.

Since Christmas has effectively come to a close, and we are now back home, we are making far greater progress in controlling her blood sugar.  We have been told to target a range of between 4 and 8. Below 4, and she risks a hypoglyceamic episode. These were explained to us in three stages. The first is a mild attack - perhaps fatigue, going pale, tingling lips, inability to think rationally, stroppyness (she is an 11 year old girl - this is perhaps not so much a symptom of a hypo more a normal state of affairs). A moderate version might be  all of the previous symptoms, but coupled with extreme drowsiness and even inability to swallow. The third and most severe level of hypo - defcon 5 - is unconsciousness, seizures and eventually coma. It is therefore important to monitor blood sugar levels versus the amount of insulin injected in order to avoid the hypo episodes, and to treat as early as possible. In some cases, this may no longer be possible to self treat, and the diabetic may rely on those around her to help - perhaps administer some lucozade (not Isotonic as this is too slow acting) or emergency dextrose liquid that she carries around with her now.

At the other end of the scale is Hyperglycaemia - this is where the blood sugar level is above 8 for a sustained period of time. The symptoms are thirst, peeing more frequently, headaches and tiredness. If Hyperglycaemia is not treated, then ketones can build up in the blood causing Diabetic Ketoacidosis. This is where the body uses the fatty acids and proteins in the muscles, and is often the first symptom of untreated diabetes, although if untreated can cause life threatening complications.  Vomiting, deep breathing, confusion, and occasionally coma are all symptoms.

Diabetes is manageable and it is of course necessary to manage it. There are plenty of examples of Type 1 Diabetics that have led healthy and successful lives, with top flight sportsmen and women competing and winning at the highest level. At the moment we are just trying to get on top of the condition and to get the glucose levels within the target range. The phrase one day at a time rings very true. In time, I am sure we will learn to live with the condition and to lead a normal life. Life will never be the same, and I still don't know the answer to "But Daddy, why me?"