Two Year Di-iversary - Axe Throwing

A few weeks ago we "celebrated" a milestone in our lives. It was our eldest daughters two year anniversary from her diagnosis with type one diabetes. 

It's fair to say that it has given us many ups and downs in those two years, and already it's hard to remember how easy things were before that came and kicked us all - my daughter especially. 

She is incredible with it though, never openly gets her down, although I'm sure she thinks about it a lot. We all do, but she is so responsible and mature about it. 

So instead of commiserating the two year anniversary we go out to celebrate kicking it's butt for another year. My wife booked axe throwing followed by some rather amazing burgers (with a spot of warhammer shopping before hand for me and the boy). 

The axe throwing was great fun, with some great and truly awful shots thrown. It makes me want to make my own target! 

The burgers were great as well, although it's now come to the point where the children end up eating adult portions and leave me with nothing! I thought we'd be a few years off that yet!

So here's to the next 12 months. F-you diabetes, you won't get us down. 

Insulin Pump

So we're over a year into our diabetes journey and our eldest has made the very big decision to switch from MDI (Multiple Daily Injections) for a pump on a closed loop system.  

So yesterday we went into hospital to go through loading a pod with insulin and fitting it, connecting it all up and working out the levels everything needs to be (this is after a visit to hospital last week to change the sensors over to a different type - dexicom). 

So as I type this, the pump is upstairs on my daughters leg slowly clicking insulin in at different interval. We're watching her CGM as her blood glucose find their levels in this new system. 

Wish her luck! I'll keep you posted on how it goes. 

Forth Diabetic Check Up

So this week we went for our eldest's forth diabetic check up. Good to start the year with the first one done and good that she didn't have to miss any more school to go to it. 

We have to go to the local hospital so they can check all her levels and discuss any issues we have a few times a year. Normally I think it's a time when they get people to adjust levels and ratios of insulin, but we've been adjusting them anyway (we were told we had a good understanding and to do it), so for us it's normally justifying why we changed them when we did. 

I try to make it into something to look forward to rather than dread, so we went out for a little daddy daughter date first - Burger Shop in Hereford never disappoints. The first time I think I've got her an adult sized meal in a restaurant as well! Shows how quickly she's growing up. 

The checks went fine, but once a year they need to take bloods (to check for kidney damage and for potential gluten intolerance - We all fear that one I can tell you). Taking blood made her feel a bit faint though and we ended up staying for quite a while until she felt better. We were late being seen anyway, so with this as well I was glad I put plenty on the car for parking, we left home at a round 11.30 and didn't get back until 5.15! 

What was nice was that although the last couple of weeks have been terrible as far as levels are concerned - too many carbs are around in unpredictable amounts and chocolate seems to make blood glucose levels do crazy things. But they told us that if this was what we thought were bad levels then we were doing really well. I explained what I'd done about changing breakfast to get rid of the morning spike and how we'd increased the slow acting insulin to try to keep the average somewhere in the middle. The new consultant was fine about everything, telling us to look at a few other things, but as always to do changes to ratios slowly and to look at the graphs. 

There are more things I want to do to help. I often cook low carb dinners now, but I'd like to get going with sourdough again as I've read it supposed to be better for diabetics. Lots of little changes add up and as I've said before they do us all some good really.

And of course I'd like her to get on a pump and a closed loop system, but she still seems a little unwilling at the moment. 

One thing that is mad is the disability benefit/allowance she/we are now entitled to, this is to help cover things like all the hypo treatments, time off work to take her to things like appointments, extra bits that aren't covered by the NHS (silly things like stickers for CGM) etc, we still haven't seen a penny. Now for us it's fine, we're financially stable and always run with a little behind us, but for some families it must make it so tough. Let alone you have to reapply for it every three years -  for a permanent disability - and the paper work takes hours to complete, but then you have to wait well over half a year before you'll see a single penny, after waiting the first three months to be able to apply in the first place. Fine that they back date it to the date that you apply, but only fine if you can survive until that point. We're lucky we can, but the government doesn't make it easy for people. 

Anyway, another one ticked off. Soon it'll be a year gone and that seems crazy, I think we need to go out for it, not to celebrate it, but to show we won't be beat by it.

First Diabetic Christmas

Diabetes is a constant current in our life. It is always there, pinging up on our phone when levels hit low or high, or asking what her levels are before we eat. 

Injections 4 or more times a day. 

Christmas day it certainly hits a bit harder. 

Diabetic Milestones

We all have milestones come up in life, somehow diabetes seems to throw a few at us that we hadn't really thought about.

The week before last we finished filling our first sharps bin. I say "we" but it was our daughter's doing obviously. 

That bin is full of the needles she used every day, on average 4 to 7 needles, and the empty cylinders of insulin, the fast acting she takes before she has carbs and the long acting she has once a day at night. 

That bin represents a lot of learning in our little family. We've learnt that having diabetes complicates everything. That getting her levels right one day doesn't mean they're been anywhere near the next. It sometimes feels that the change in the direction of the wind can alter her levels. We learnt not to get hung up on the odd bad day and to look at the bigger picture. 

That bin has some moments in there, highs and lows. It has the needles where I begged and pleaded for her to inject herself, it has the first needle where she did it, and where I ran around the house and screamed with joy when she made it happen. That needle represented her taking charge of her diabetes. 

It represents all we've learnt about food and how we've all changed our diet slightly as a family to make everything seem normal. How a slightly more diabetic friendly diet has made me feel slightly better without realising anything wasn't right. We learnt that our diet was pretty good before, that our children understand food more than a lot of adults. 

It has moments in there that shows how close her siblings are with her, whether that's her younger sister working out her carbs for tea and prepping her needles as she gets something else ready. Or whether it the moment where I was doing the food shop with her younger brother and he put back the breaded ham I'd picked up and replaced it with some that wasn't and just looked at me and said "less carbs". I had to hide a tear from the little man who often seems wise beyond his years and already a better understanding of diabetes than most. 

It hides the late night wake ups for hypo treatments, or the alarm buzzing for a hyper and the need for insulin. Or how the other night we both sat chatting at 2 in the morning because her sensor wasn't working right, knowing we'd both be tired the next day. It hides all the sweets she's had to eat even when she wasn't feeling like it because she's gone low. It hides the glucose tablets and little sugary shots she'd taken, the cartons of apple juice drunk in the middle of the night or at in the morning. 

It hides the fact she went shaky before her alarm beeped, or that my phone tells me she's going low on the bus on the way home and I have to trust she'll sort it out on her own. 

It hides the calls to the hospital because we can't figure something out, or the high of coming away from a check up feeling like we're doing okay, the doctor giving his approval, even if her alarm did buzz 4 times during the appointment...

It hides a few tears, both from me and her mum, and maybe from our daughter, but she's always stoic, I've not seen her shed many.

I remember when she was first diagnosed, I read a forum of parents chatting about their children with diabetes. On there one mother said how she cried every single day for her son and the normal life he'd lost, and I just thought No Way am I going to be like that, it wouldn't be fair on her or on us. I was determined as far as we could we'd own this problem as a family, we're always stronger together. 

I so proud of the way my daughter has stepped up to this problem and how she's handled it. Starting a new school, adapting, and just getting on with life. 

One sharps bin down, many, many, more to go.

So F-you diabetes. You won't get us down. 

Eggs For A Diabetic Breakfast

In our journey with diabetes we've been looking more and more at our diet. 

I think we eat fairly well. We have a well rounded diet that provides all the stuff we need to live active lives. 

But since my daughter has been wearing a CGM (Continuous Glucose Monitor) we can certainly see where spikes occur. 

One was right after breakfast. It was a "traditional" western breakfast of sugary cereal with some fruit juice (normally apple). 

A friend suggest we tried egg on toast. She still needs the carbs but they are slower burning from the (homemade) toast than cereal would be and with the protein from the egg should keep her full until breakfast. 

We did a week of it and noticed that although you still get a spike (that's just eating any carbs and the insulin having to catch up) it was way less, often keeping her in target for the whole morning.  

It was so good I thought I'd change my breakfast and try it as well. No more 10 O'clock slump! 

Then the other two wanted to try it and suddenly we didn't have enough eggs! 

So we went and got some POL hens (Point Of Lay) that will hopefully lay all through winter. I was hoping 5 would be enough but the oy is insisting on two eggs every morning....

The video above is a fun little journey out with my boy to buy the hens and getting them set up in their new home. I also talk a little about diabetes on there and about the blood sugar spikes. It's amazing how much it makes me think about what we're all eating. We've made some very easy switches and I'm sure it's benefiting us all. 

Squash instead of potato for some evening meals

Brown rice instead of white (way more taste and texture to it)

Wholegrain Pasta (tastes just the same)

Adding some Emmer Flour to our morning loaf (nowhere near a wholemeal loaf but still rises really well and tastes great. 

Careful with the mixing of some foods - carbs and fats are a nightmare (pizza is a nightmare that sends her levels into a random plain)

With these little changes I seem to have lost a little weight (Hopefully don't have much to loose, but it's been quite noticeable around my stomach) and felt fuller longer. That said I've also band myself from buying any of the "rubbish" I normally eat. I still have to buy sweet for my daughter but tell her to hide them in her room! 

Makes me think that for next year I might plan a "diabetic friendly" garden with the foods we've found to work best for her levels, although everyone is different. Lots of protein and veggies. We were wrongly told that some foods would be "free" and not need insulin, like carrots as a snack, but so far we've found that they make her levels shoot up without the injection. 

#### Please remember before commenting that Type 1 Diabetes and Type 2 Diabetes are completely different things. She's not eating her way out of this one, her pancreas just doesn't work like it's supposed to anymore. A completely low carb or carb free diet doesn't work for Type one sufferers, nor would it be good for a young growing body like hers. ####

Hope you enjoy the video!

What food makes you "slump" a few hours later?

Taking A Diabetic On A Plane & A Spot Of Trouble...

 I'm writing this post purely as I wish I'd read something that would have put my mind at ease before we flew to Norway.

Both my wife and I were a little worried about taking our eldest through airport security, and all the other bits that go with going to a foreign country where you're not sure where you'd get replacements for anything you need. It had been 12 years since either of us had been on a plane so we were a little rusty anyway. 

We were told to take double what we needed, plus a bit. So we had extra insulin, both sorts, enough needles to last her a month and four Libre 2 sensors, she was due a change the day after we got there anyway. As well as sugar tablets and sugary drinks and spare Nova pens should they break (we've had one break since we've started on this diabetes journey so although they're said to be reliable, it's worth having). 

None of this should go in the hold and the Libre sensors can't go through the scanners which your bags normally go through. 

We spoke to the hospital a couple of months before the trip and they sent us through a letter to show airport security and talked us through everything we would need. 

I have to admit that I was worrying about the whole thing, not having stuff scanned at the airport seemed like a bit step. But when we got there they were as friendly as anything. the lady dealing with us looked at the yellow boxes the sensors come in and says "Ah a Libre 2 sensor," and then took them from me "My friend over there wears one!" She pointed to her colleague who waved back to us. 

I mentioned that I was worried about all this and she reassured me that they deal with it hundreds of times a day and to them it's perfectly routine. The only thing they questioned was the little carton of apple juice my daughter favours to control her lows, but they scanned this, said it was on the letter so was fine. 

I had worried about nothing! 

Then, breathing a sigh of relief, I was just about to collect my stuff and the airport security guard put his hand up for me to stop. 

He then pulled out a folding knife from a side pocket of my bag. My heart sunk and I realised that I had chucked one in there for the scout camp a few weeks back. Now I did panic. Had I wrecked the holiday before we'd even stepped on a plane?

I had a nervous wait for the police to come and speak to me. I sent my wife and very worried looking children away to get some breakfast, while I paced about. 

Luckily the police were very understanding once I spoke to them. I had to watch a short video about knife crime and was then let go on my way once they had taken my details. Apparently it happens about 5 times a day, making Gatwick the knife crime capital of the UK. 

I felt like such a fool, I'd been concentrating so much a about the diabetes that I hadn't checked my own bag properly! What an idiot! 

So don't worry about taking a diabetic on a plane - but make sure you check your bag properly! 

Anyone else had any experiences like this? Don't tell me I'm the only one! 

2nd Diabetes Appointment For Daughter

 So this week, along with everything else we had our second appointment for my daughter's type one diabetes. These are just running check up, where they keep an eye on progress and answer any questions we might have. 

We also got told that the sensor she uses is changing this week (after we were initially told we had to stay on the Libre 2 due to funding a few months ago). So she is now on a libre 3 which means that when she goes low in the night the alarm will wake me up as well on my phone, so a bit of piece of mind there. 

Never sure how long these appointments last the other two children were with friends for my wife to pick up after work (they love going there and some friends we really treat like family). When we came out of hospital it was gone 6 and we decided we should maybe grab some food in Hereford.

My daughters eyes lit up and she suggested Beefy Boys - a really good burger restaurant. When we got there we were told there was a wait for a table, I suggested we went elsewhere, but one look at my daughter told me we were going to wait!!

It was worth it. The food is always brilliant from there and great service from the staff, even with our dietary requirements. We're getting so much better at guessing carbs in a meal, and my daughter just injected herself right there in the restaurant, which makes me happy that she can take it in her stride like that. 

A lovely Daddy - Daughter date, unplanned but all the more special for it. She really is great company as well. 

It's nice when we can pull some positives out of the crap that is diabetes. 

A Month In - Dealing With Type 1 Diabetes

So it's been a month. 

That's two lots of Libre 2 sensors, twice I've had to hold my daughter down as I fix it on to her arm. 3 empty insulin cartridges, countless needles, lots of sensor checks and lots and lots of dips in blood sugar levels with the accompanying spikes. 

I have described trying to figure out the insulin for her levels like being a safe cracker, only the combination keeps changing on the safe.

Initially we were chatting to the hospital (who have been great) every time we were adjusting her carb to insulin ratio (for the fast acting insulin). But we have been given the go ahead to start tweaking things ourselves, adjusting what's given very carefully. It's funny as she has a real handle on it and will chat to me about what she thinks the ratios should be as well. I'm keen to promote this as it's something she's going to have to get used to. 

It's interesting as we can plan for certain things, like we keep her breakfast insulin slightly higher, so we know her blood sugar will drop in the morning, but that means she can have a mid morning snack without having additional insulin. 

So far I'm still going into school each day to give her an injection for lunch. I'm hopeful she's going to make the jump soon and inject herself. We've said we can talk about pumps when she does and also that will mean a phone - something I'm not keen on her having but will be essential and is kind of essential now anyway as she needs quicker contact with me. 

At least I work from home and school is only a mile away. It's been nice to see her at lunch time and to have a little glance into her class each day - I must say they all seem to be working hard when I look in! A lot of the kids know me (from scouts and running the play group a few years back), so I always get lots of "hello Kev" which is nice as well. 

I've adjusted my working day a little bit to fit in. Obviously I can't do my casual carpentry work on site at the moment like I sometimes do (repair work for an estate normally), so it's been workshop work all the way. I've been having lunch earlier so I have it just as soon as I get back. This means I do have to alter my "lunch dates" with my dad as we will both often have our lunch "together" and just chat on the phone while we both eat, even though we're a county apart. Hopefully this won't go as it's something I really enjoy and helps keep us close. 

My daughter has been a little star, she doesn't seem to let it bother her. Although that said she is always fairly stoic when it comes to showing her emotions! She seems to be her happy self, she doesn't enjoy the injections or having the sensors fitted, and who can blame her, but it's a small part of the day in the grand scheme of things. Snacks are a bit of a problem and she has been woken by her alarm in the night and dealt with it herself by taking the sugar needed. 

She was incredible when she started back at school, her teacher came to me and said that she just came in as normal and dealt with all her diabetes stuff like it was something she'd always been doing. She's had a lot of sudden drops which she's dealt with instantly and in a way that hasn't over corrected and gone too high. She chats openly about it with me (and her mum) and looks at the graphs with us as we try to figure out what we can change to make it all more level and stable. As well as figuring out the right type of food and snacks for her as well. 

It's early days yet, the initial shock is gone, now it's just a constant background of work to try to keep things as normal as possible for her (and her siblings) and try to prepare for the bumps in the road we know are going to be coming. 

The Worst Week Of Our Life - Type 1 Diabetes

So a few weeks ago we had one of the worst weeks of our lives. 

I didn't say anything at the time as I think we were all coming to terms with it (and we still are and probably always will be). So I just kept posting as normal. 

But I know many people on here have followed this blog for a long time. Some pretty much from the beginning, 11 years ago, you've watched our little family grow up and see our children be born and blossom into amazing young people. 

Our eldest had been very tired and down the last few weeks of term. We kept asking if she was okay, and put it down to hormones and being tired at the end of term, I was worried she was a bit depressed. We then went for a day out (to Harry Potter world) and she really wasn't herself. the next day she slept in (very unusual) and then was tired in the day as well. 

We took her to the doctors and, after a bit of a stressful run around, went straight to hospital where they had phoned ahead. When we got there we went straight into resus where about 8 or 9 doctors and nurses were waiting for us. 

She was unfortunately diagnosed with type 1 diabetes. This came as a massive shock for us. And as they tried to stabilise her, bringing her blood sugar slowly back down and get her rehydrated. She was very dehydrated and although she had been drinking loads the fact she had no insulin in her body meant it just got flushed straight through her. 

The next 24 hours were really stressful. She had great care all the time from the hospital as they tried to get her levels back to normal, giving her fluids via a drip and slowly injecting insulin into her body. Keeping her in the high dependency unit for the first day. 

Obviously we wanted to know what had caused this, but type one diabetes has no known cause, it just happens, her body has stopped producing insulin, which means she can no longer process carbohydrates. It's not caused by diet or lifestyle. 

We also beat ourselves up a lot for not getting her there sooner. But the changes in her were so slow and she kept doing her normal routine (even baking cakes after school). 

The next few days she really quickly improved in her condition. The learning curve was pretty steep when it came to learning about diabetes. It seemed like we were flooded with knowledge, and all of it so important.

Basically to keep her alive she needs to have two types of insulin every day. One is a slow acting, to be taken once a day that works at a low level, all the time. The other is a fast acting insulin that needs to be taken every time she eats any carbohydrates. 

So for every meal we have to work out the carbohydrate in what she'll eat, then make sure she has the right level of insulin (correcting for what her currently blood levels are at that moment as well). 

First time out for a trip to Hereford

In the future she can be fitted with a pump, but she needs to be able to inject herself first, so we're using this as an incentive. The pump still needs lots of working out, and changing every three days, but it will save having quite so many injections. 

For our stay at hospital we tried to make it as "normal" as possible. I brought her brother and sister in each day (her mum stayed there with her), we were allowed out into Hereford for trips out, in fact we were encouraged to, to get used to reading her levels and figuring out what to do in different situations. 

After the cinema trip. Almost felt normal. 

We even had a great trip to the cinema. 

She was so pleased to go home! We all were! That first night with the five of us back under one roof was so good. And yet it was like having a new born back in the house, we had to keep checking her levels and adjust to suit. It's been a bit like being a safe cracker trying to get them right at night (annoyingly her body still, intermittently, produces a bit of insulin randomly, for the next few weeks, which can make her levels crash or peak for what seems like no reason - annoyingly called "The honeymoon period"). 

She has a sensor on her arm, which makes it so much easier than finger pricking, She can scan herself and we will know her blood sugar level then. They have better tech which links to up to 5 phones all the time, but the funding has just been pulled for that. So we'll sit and wait hopefully for that to come back. 

We're slowly getting used to our new normal. Luckily I work from home, only a mile from school, so I'm going in each day (she's only been back for one so far) to give her the injection for lunch. And I can work out tea and try to make it as easy as possible for her. 

She has coped brilliantly with it and seems to be coping much better than me or her mum. The first week I was an emotional mess. 

She came home and that first morning back baked a cake to work out what carbs were in the whole thing, then worked it out per slice! I was very proud of her. Her brother and sister have been great as well, helping to work out what she's eating, and just generally being great siblings. 

Things not to say to me or my child-

 

"Well it could be worse" - Yes it could. I know that, it could be a hell of a lot better as well. Please don't say this to someone who has just had their child become disabled in a matter of days. She'll be dealing with this for the rest of her life. 

"The technology makes it easier" - It does, it really does, but believe me it's still crap. Yes, it's no longer a death sentence, but it's still rubbish on so many levels. Imagine trying to work out the carbs for everything you eat and making sure you have the right level of insulin for it. Now imagine doing that for the rest of your life.

"She shouldn't have eaten so many sweets" - It has nothing to do with how we lived or our diet, it's just something that happens unfortunately.

"So you can scan yourself, it's like a superpower" - It is not a superpower and please don't patronise her, she's 11, not an idiot. I know you can try to look for positives on all things, but there aren't really any here. We have talked honestly with her about it. 

"She might grow out of it" - as the one lady doing the food at hospital said to her, trying to be kind no doubt, but she was confusing it with type 2 diabetes. She won't grow out of this. 

It's hit me really hard. I'm a self sufficiency expert, someone that has trained their whole life to need as few people and inputs as possible. Self reliance, to be able to provide everything my family needs. I can do most things, I even took up swimming as I was worried if they fell in I wouldn't be able to save them. Now we're dependant on insulin and constant technology to keep my first born alive. 

I'd trade this with her in a second if I could. I wish I could take it from her and have to deal with it instead of her. It feels like such a complication on life for her and it makes my heart ache. 

*I spoke to her about posting this before I did. I wanted her to say if it was okay or not to use these pictures. She knows that this blog is a big part of my life and was fine with me sharing this with people I consider friends and the fact it might help educate between type 1 and type 2 diabetes.