Doing Things, The Wrong Way – The Bad diabetic!

I’ve been rather torn on this one for a long while. Do I write something about it, don’t I. I don’t know. Part of me just wants to bury everything and the other just wants to get a few things out there and to say to hell with it all and just throw some of my how to be an utterly terrible diabetic wittering’s out there. This has sat as a draft for a long time in one form or another, but what the hell now…

A lot of this goes back to the days before blood testers, back then we peed on strips, and before that into test tubes with fizzy tablets which made you pee change colour and you used something like a Dulux chart to tell your BG within the accuracy of about 4mmol. Not like you changed doses or anything as it was all rigid diets and rigid doses. Anyhow, in the mid-1980’s my parents got me a “lovely” BG meter. It came in a very fetching maroon leather case with brass buckles on it…the ideal thing for a kid to take to school and never receive grief for! Not like I did, as I simply refused to use it due to the hideous thing which came with it, a lancet device which pretty much fired a map pin into your finger after retracting it in a half circle before it fired it at you. The thing could bruise a finger for a good week at a time and as such was something I avoided. Utterly!

Before I left primary school, the GP I had who originally diagnosed me retired and his replacement was this evil strict nasty lady (mental picture at the time). For many years she utterly terrified me and I would literally run and hide in shop doorways to avoid her. Why? Because right from the off she changed everything. My parents, or more precisely my mam wasn’t allowed to get involved with my diabetic care. It was all mine to deal with, and I would have to deal with it myself. Inject, dose, everything. Yes, this seems harsh and was very much so at the time. In hindsight, it was a really good thing for me, toughened me up no end and this amazing doctor actually became a very influential person in my life (yes, a big jump from evil strict nasty!). Having all this power though as they say should really come with responsibility. Sadly though, in my hands maybe not so much…

By the 90’s and my teens, I had this sorted! It was so easy, I had those BG record books, a couple of different colour pens and on the way to the hospital for a check-up could just fill in the boxes with lots of random numbers that matched what my HbA1c is roughly so it all looked good. The different ink was handy to make it look a bit more mixed too. Throw in some nodding, keeping teenage quiet, and generally looking like you didn’t want to be there and all good. They would ask questions every so often and fiddle with doses but it mostly seemed like they just wanted to fiddle and could be ignored. No one asked too many questions and you could be soon out of the place.

During my teens was also a moment which came to scare me, even to today. I had gone to the clinic for my check-up and these were the days when the consultants themselves did blood tests instead of letting professionals do it (the nurses). The doctor I had always used to like me to stand in the middle of the room and look at the corner of the ceiling while he did whatever. Had done this many times before and never thought anything of it. Mid-way through this huge black crack seems to shatter its way across the ceiling tiles. I murmur to the doctor a “urmm doc..” as the crack stops as it reaches the far wall. Very odd. A second or so later it cracks down the far wall. “DOC!!”, I look down to see what he was fumbling at and squirt right over his paperwork on his desk, the crack on the far wall starts to run down…ohhhh THUD and I hit the floor out cold. Ever since that day I’ve always had issues with blood tests, well publicly anyhow. Truthfully though I’ve had major issues with needles ever since, all needles, which as a T1 could be rather problematic.

Come my late teens and twenties I still avoided testing. Gone this far without it so why should I change now? Injecting had become a huge problem now though. It was kind of a combination of when I had to do an injection of sitting in a toilet for 30-40 minutes quaking in fear over injecting and the other being that I had started to discover that nothing much happened if I did skip the odd injection. I was still here the following day, what’s the problem! And it meant I didn’t have to face another needle. I hadn’t given up completely, but I was finding I could easily skip one per day. A little win every day, right?

Come 2000 the clinic I was going to had a wonderful idea to save money of discharging all its patients. Yay, I’m cured! It was a strange day going to the clinic and instead of seeing the nurses for a blood test as normal just seeing a consultant with a clipboard handing out a bit of pink paper saying go to reception and you are now solely under the care of your GP. My GP, of course, wasn’t happy about this at all. She complained many times to no avail and even showed me some of the letters and responses she received. One was a lovely one saying I didn’t warrant a clinic as I was non-cooperative. Me?! Never! See, my HbA1c and fake BG results all say I am good! This rattled on for a while and sadly came to an end when my GP retired.

There are other issues of course, well one main one. Women! I was single, utterly alone or so it felt and hadn’t a clue how to speak to members of the opposite sex. Ok yes, I still don’t which is probably also why I’m still single. Although now I don’t really care about it as much. Frankly, I was desperate and would do some utterly stupid things just to talk to someone I liked. This have course also had effects on my diabetes care. One of the daft things which I had started doing was trying to chat up various waitresses, bar staff and the ladies in sandwich shops and the like. It would be the usual thing of making sure I would go in practically every day just to order something even if it meant multiple trips each day for “a drink”. That might not have been so bad if someone actually took a bolus for what he was eating, but not a chance in that! I was on the pull or so it seemed in my head. I ate, I skipped injections, I overdid injections if I felt a bit off, just winged things totally. But as you might guess my control HA! If you could call it that was pretty much a mess.

Things as you might have guessed finally start catching up with me. It took long enough, didn’t it?! Going stiff as a board during sleeping and managing to pull the muscles in my back so I can’t walk for three days. Hypo’s all over the place, and yes I know, odd considering I was skipping insulin, but then taking random doses when I felt “off”. Being glazed half the time. Getting picked up by paramedics over and over again. Drink, women, food, no insulin, loads of insulin, loathing work and having a boss piling grief and hassle all day long for the wonders of what would these days be far below minimum wage, then returning to a dark room of a night to descend into stupidly long online gaming sessions to escape the mess that was the world. Epic memory loss hypo’s, being found face planted in shop windows, missing involving police searches, laying out cold on train platform benches, destroying toilet blocks, racing wheelie office chairs down main streets, dancing with grannies around the Post Office, destroying Easter egg displays in supermarkets. Things caught up with me!

I don’t think I was, at least at the beginning anyhow not taking my injections as a way to lose weight. It did come in from time to time later on though mostly due to looking at the pictures from my brother’s wedding. I was round, a fat lil bastard and no wonder I was alone. This picture also pushed something else in me…I needed to change.

Secretly running up a nearby hill in the evening to hide being seen. It hurt like hell! That soon got binned. Me being the nerd that I am needed another solution. I scoured eBay for parts and got lots of components to make a mountain bike. Some of them even fitted kind of together! Many others didn’t! It was a hard lesson in the standards of bicycle parts but eventually with help from my local bike shop a bike was formed and I used it daily for getting to and from work. I could do 2 miles! 5 miles! 10 miles! 20 miles! I was super fit now, I had lost 3 stone in only 6 months thanks to this wonderful machine…the continued skipping of insulin, of course, didn’t have any contribution to this did it?!

Things kind of came to a head when one of the paramedics who kept scraping me up flipped. She asked everyone else out of the room and tore into me with a threat that if she ever saw me again she would section me. I was doing nothing wrong though! It just happened that things kept going wrong is all! My GP now tried over and over to get me back to the clinic. I assume the paramedic’s report had really got his attention to get something sorted. But the response from the clinic was that I didn’t warrant seeing a DSN or Consultant as “his diabetes wasn’t severe enough” … My Hba1c was still magically in an acceptable range somehow. In the end, he transferred me out of the county to another clinic.

Something changed within me. I have no idea what it was. Was it pushing myself harder on the bike, I had just bought a new drop bar bike which was soooo much faster than my old mountain bike. It was pushing me harder, faster, and further and I had set myself a goal to take part in a new local sportive thing over 46 miles. I started testing! I had a goal. I still refused to use a lancet device and made do with using my pen needles as they were sharp and thin. But they drew blood and I was testing for the first time in nearly thirty years. It might have been the fact I was soon going to see a new clinic and I knew I needed help somewhere deep down. I have no idea, I was doing things kind of properly again. Still skipping injections, but adjusting to some degree for it now.

The new clinic ripped up my old static dosing I was on, yes, I was still doing that! Adjusted everything closely, tested, monitored and were actually very nice to talk to about things. I could talk bikes, what it did to me. I hid many of my other issues behind the bike and it hid them very well. But it was strange that ever since that day I haven’t had a hypo I haven’t treated myself. How did I manage to live this long with seemingly no complications? Even today a further ten years later, I haven’t the foggiest! Luck?! Do I still have my desires to skip doses? Well yes but I haven’t gone back to it, and again I don’t know why I haven’t. I feel a major part may well be that my BG is now at a “better” level of control and my mental health has improved due to it. Has sorting my BG almost aided what was causing my lack of control? I don’t know and probably never will. I wouldn’t be surprised if part of what caused it is also what causes me to push my infusion sets now to 4-5-6-10 days at a time, pushing the boundaries again. I know I shouldn’t but do still do it. It is probably also part of why I utterly loathe the low-carb brigade and their agenda to make all diabetics the same. Frankly just wish they would simply fuck off and leave us all alone and go look after themselves and shut the hell up. We all have our own paths, and this is mine so far. Is it perfect?! HA! Not in the slightest but I am still here and doing things my way. If anything even more entrenched into doing things my way after the battles so far.

A hard first day!

First off it took forever to escape the hospital. Yes, I had a “normal” checkup before leaving before the good ol’ handshakes and best wishes as this lunatic setoff. Think I wasted a good 90mins in the Hospital before getting going *sigh*.

Green Lane Garage, Garstang

Ten miles down the road in Garstang, my front rack failed… Not a happy bunny! But also all my own fault for not being thorough enough on checking every last nut and bolt. Thankfully not far off though was Green Lane Garage, and Chris there was an utter star and helped me out to get something together. Without him, I would of probably just got a taxi back to Lancaster and thought sod it all! I was really getting pretty downbeat by this time, and even more so when looking at the clock and I was two and half hours in and I had only done ten miles.

Eventually, I did get going and heading south and was soon in Preston and having no end of hassles both navigating the city and so many of places around it. It felt like being trapped in the backend of West Cumbria and unable to escape, but without the scenic areas to escape into. Scary! Also found it to be one of those places filled with bike hating jackasses who had no time for any other road user other than themselves in their metal boxes.

Escaping Preston and getting moving I was finding time slipping away badly and I was making very slow progress. In the end, I simply thought I had had enough for the day and needed to find a place to hide for the night and get rid of this day as soon as possible. I was about 13 miles away from my destination for the day from my initial plans but that could have been much worse. Tomorrow I hope to get an early start and if the roads keep like the ones here in Cheshire it should be pretty easy to get some decent miles in. Better luck tomorrow I hope!

Lancaster to Paris – Setting off on Thursday 18th May

 

The Royal Lancaster Infirmary last month opened its new Diabetes Hub to aid in even better care and research. Setting off on Thursday 18th May Allan will be riding from the Diabetes Hub to the Eiffel Tower, again on his own with just a bike, a tent, and panniers loaded with various pieces of equipment, medical supplies, and food. Along the way, there will be both a blog and live tracking on this site.

A point of interest for the ride is also the bike which Allan will be using. Made by himself, hand cut, shaped and welded by the lad himself. He is actually finding it somewhat amusing as he classes it as “the most advanced bike in the world” which raises many eyebrows as people wonder what it is he is going on about as it’s just a steel framed bike, lugged, resembling something to some degree as something from the sixties or seventies. Upon closer inspection things tend to differ though, the quiet monstrous hydraulic brakes which are routed internally, the electronic gearing, all of which are state of the art but hardly making it that advanced. An even closer look and the gearing system is some very strange hybrid, half mountain bike and half road bike, while very unusual still not that “advanced”. But then there is all the other strange electrical going’s on’s. The bike is sporting all manner of strange sensory equipment, various wireless systems, it is talking to a phone, the cloud. What is going on with it?!

The bike, or Lancet as he refers to it in reference to finger pricking devices used by diabetics (and a running joke in the diabetic world as they are made from steel and last forever never getting swapped) uses it’s sensors to read Allan’s insulin pump and takes his insulin levels and amount of food he’s taken. It is also taking his blood glucose readings every four minutes and attempts to predict the direction of his blood glucose and reducing or increasing his insulin levels based on those directions. Reading sensors on the bike for his power output and heart rate it’s also able to make predictions based on the amount of food he has taken as to if he’ll need more based on the earlier readings for insulin in his blood stream and the direction of his blood glucose. All this information is sent to a small Garmin screen so he can view his current blood glucose level and see what the onboard systems are doing to him, alongside normal navigation and riding information. Along with his self-made concoction of a bike this also self-made ridable artificial pancreas based system makes for a very unusual and unique bicycle.

Allan expresses a huge thank you to everyone for the response and donations thus far. He also thanks his local GP’s over the years who have aided Allan with this condition. And for the fantastic team looking after him at the Royal Lancaster Infirmary he is immensely grateful for getting him where he is now, and for the check-up, he has to have before he’s allowed to set off. Ok, maybe not so much that last point!

If you wish to make a donation they can be made online at http://bit.ly/2rfEucC

 

First time I’ve had DKA – Don’t want it again!

Well, first time for everything and all that. But DKA finally paid me a visit in all 34 years of dealing with this. And frankly still annoyed over it.

The day started pretty well. Early rise, all kitted up and prepped for the event today (62 mile cyclocross with 8824ft of climbs). Bloods were pretty perfect for it, 6.2 (111 in US money) had breakfast on a 60% bolus as usually and off rode to the start of the event. Was a little slow getting away so by about 8 miles into the event bloods where up to 16.2 (291) and I corrected partially and by the first food stop at 22 miles in bloods where down to 5.6 (101). For the remainder of the event everything was fine blood wise with little deviation (5.2-5.8 throughout) and completed it at 5.6. Was a hard slog, shaved a good chuck off my previous best time, met a load of folks who I got chatting to, and over all really had a good time.

Rode home, bloods where 5.2 (94), washed bike and back tyre went flat grr. I’ll sort that later so kind of ignored it and finished up cleaning and got myself cleaned up for the coating of mud I was covered in.

A few hours later checked for dinner and eep BG was up to 16.1 (290), corrected, had a little feed and waited and had a splitting head ache which was odd and BG was 20.4 (367). Massive correction and an couple hours later 17.1 (308). I started vomiting which was odd and couldn’t work out why. Didn’t seem to be dinner related but made me think anyhow but blamed being so high for it. Really fed up with it all now changed vile, infusion set and usual things and started again. Did a correction and waited an hour and now 17.8 (320). Utterly fed up even tried using pens, BG now 17.2 grr. Ok this has lasted long enough lets check for ketones..ACK 5.0. That’s it, something not working, I feel awful and I need help so got a lift to hospital.

By time I got to hospital BG was still 17.8 (320) but ketones where now up to 5.8. Blood pH had now dropped to 7.33. BG kept around 17 for the next 4 hours or so and ketones raised to 7.8 before everything started to come down. Took 23 attempts though to get cannula’s into me for insulin, food, and hydration mix (massively low potassium in blood it seemed, blamed on possibly lack of hydration in ride but thought I had drunk enough *shrug* with over a couple a bottles) due to veins collapsing though.

ECG and Xray wasn’t showing a possible cause and blood work up seemed to only indicate white blood cells high attacking something. So some dodgy infection caused it.

Anyhow, long story short. They fixed me up, got me switched back to my pump. And back home. Ketones have been fluctuating for today between 0.2 and 1.8 with the bloods being kept pretty steady in the 6’s. But eating little and often and drinking loads and should be flushed out of me by tomorrow or so’s the plan. Arms are a mess now due to the attempts to get stuff into me, and blood out of me.

Utterly annoyed though about needing help! Theory is currently the ride weakened me enough for the infection to cause some mayhem but not over sure which is a concern. Still haven’t had the usual recharge moment off the ride which is very odd also. But it’s another day being T1. Always finds something “fun” to throw at you and learn from 😛

Fun with DSN’s from places you don’t like!

Background info for those in the US. Over in the UK, we don’t have insurance as you know, and we have the NHS, so all the meds and stuff are “free” off the gov. While this is usually good, it does mean sometimes we don’t get choice or everything we want (such as Dexcom refusing to deal with the NHS). Or sometimes things are rationed to you having a good reason to get something such as a CGM.

So, my DSN (CDE in US money) is away in Italy at the moment, and her colleague is away all week at a training course so am totally stuck with someone to get a sensor for a CGM fitted. I say fitted as we patients over here aren’t allowed to fit them ourselves in case we destroy one due to the expense, so they only fit them by a trained DSN. And so I have to got to an alternative clinic which I’ve never been before, but is closer to home (will explain that bit later).

So in I go, hand over the sensor which my DSN gave me (since it’s a different hospital I’m using supplies from my normal one). She’s a bit “concerned” as to why I go to my normal clinic, and not either come to her or the head clinic which is even closer to home.

I explained my history with them, about how they discharged me, and even after being scraped up by paramedics three times in one week they said I wasn’t “severe” enough to justify being allowed to visit the clinic. And how my GP sent me to my current clinic as he didn’t have the expertise to handle a diabetic, and since going there, I have’t had a hypo I couldn’t handle myself. I also explained how they put me in for a pump, the “local main clinic” stealth acquired me back and decided to cancel the pump, until I found out, hit the roof, got transferred back and got my pump…and from there fitness levels are better, and I’m not capable of doing silly things like this bike ride.

She went on about how it’s not like that now, and how they want me back now, and she had discussed with the main clinic about me since they knew me, about how I was going to be there today to get the sensor fitted. Oh really, that’s nice of you. Still not buying it, not interested, happy where I am thank you very much!

As you might of guessed. This didn’t go down too well. She asked me how many finger tests I was doing, and why I wanted the CGM. Basically I wanted it for direction of BG, not for readings and use the finger tests for that. Which she got all grouchy over as “it’s a waste of money giving me one” if I’m still going to do finger tests. And the best bit was according to her, doing finger tests while using a Medtronic pump with wireless BG meter confuses the pump since every test she claims messes with the sensor. I pointed out I only do the couple a day as calibration and tell it not to use the others. But she insisted all of them mess it up and even those not being told to use as calibration are used for calibration. I say if that’s occurring of the things should be recalled as they are disobeying and ignoring a command. Anyhow, the rant went on to the point she said “if you we’re my patient you wouldn’t get one of these”…well I’m bloody glad I’m not your patient aren’t I!

So basically, sensor fitted. CGM working and I’ve ticked off yet another hospital I’m not welcome at 😀