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.