It’s been a while, for a few reasons. Mainly cos I haven’t had time. Also cos the site was down last time I went to blog. And cos I’m not doing so well with it all at the moment.
Recently (for like, well over a month) Beau has been living on the high side of life. So most of the time, instead of being in the ‘green’ range (BGL of 4-8) he has been yellow (8-12) or red (above 12) this is highly stressful and originally it was because he was pretty sick with a coldy, fluey, virus thing followed by a staph infection… But here we are, however many weeks later, still high.
A few weeks ago, I uploaded his data from his Libre scanner and from his insulin pump and the team suggested his basal rate should be moved up a bit (the BASAL is the word for the background insulin, so the tiny amount that gets into his body from the pump every hour or so.)
So we tried that, still didn’t work. Most days and nights we are having to ‘correct’ which means giving Beau a ‘bolus’ (BOLUS means a spike in insulin, so a large dose needed to counteract the carbs he eats) the correction bolus is just another dose of insulin to bring his BGL down.
So this week, we have changed both his basal and bolus rates so hopefully we can keep our wee man’s levels in the green for a lot more. We feel like this is a kick in the pants and will definitely mean at our next clinic appointment Beau’s HbA1C will be a lot higher, so we won’t get that awesome ‘exam result’ like we got last time. By Beau being much higher like this for long periods of time, this will increase his chances of developing risks associated with Diabetes so it’s super stressful and upsetting. Because he was diagnosed SOOOOO YOUNG Beau has much longer to live with the disease than a lot of others so we have a lot of pressure to manage him as well as we can.
If you are my friend on facebook, then you’ll know that I had a wee rant on Friday about me not coping. I mean I am ok, but I am not also. It’s been almost 9 months since diagnosis and that means it really is reality, it’s all day, all night, every day and every night. So (we’ve discussed this before) I am tired. I am also working a demanding job (teaching!!!) and have the other normal day to day Mum/wife/friend/daughter etc stuff) Sometimes if I am particularly tired I feel really like I am failing in all areas.
We have talked a bit about my anxiety before, and about how just after I finished my treatment for OCD (around sickness) and Generalised Anxiety Disorder, that Beau was diagnosed. Like 2 weeks later!! Previously, I kinda joked about the irony, but now I feel I am ready for some ‘booster’ treatment.
Lately, with these walls falling down I have been feeling more depressed, and for me, when I feel this way, my main symptoms are tiredness, and anger. I was finding myself angry at everything and everyone. Since then I have made an appointment with my nurse who I worked with at the Anxiety Disorders Clinic and I am super excited to meet up with her, and get some help for dealing with Beau’s illness as well as all the other normal life things.
Since just making the appointment I have already been feeling better, knowing that I am making some steps in the right direction and trying to be kind to myself on perhaps what else I could be trying to do. I dunno. Such is life, it ebbs and flows and sometimes we just get warn out. I’m back to the point now, when too many plans fills me with anxiety and I don’t do any of them (sorry!)
Beau’s sites have been bothering him a bit lately, getting sore or caught up, I’ve seen a bit of blood in the tube coming off the needle, and some on his plaster so that’s meant more site changes which isn’t fun and also freaks me out that we are going to run out of site change equipment as you only get a certain number each year. We often have to change Beau’s needle more frequently than 3 days as it is on his bottom, it can get sore, blood, get pulled out accidentally or pooed on!
Beau recently took part in a trial for a different CGM (Continuous Glucose Monitoring system). When we were approached we jumped at the chance, to help diabetes, to help Beau and others with the technology that is changing and improving! The Dr who is running the study is one of Beau’s endocrinologists, so we are proud to help. The trial was, inserting another sensor (as well as Beau’s normal Libre sensor) into another part of his body (which was hard cos he’s so tiny and also was recovering from the staph infection at the time!) and then they would pick up the data from the CGM on their end after the trial but we had to finger prick to see how accurate it was.
Before getting the Libre, we had to finger prick Beau (to test his BGL) at least 6-8 times a day/night. Now, usually, we just finger prick if he’s heading low, or high. For the trial, which was 10 days, we had to do the 6-8 times a day every day, plus for 3 days of it, we had to finger prick him every 15 minutes for 4 hours!!!!!! Looking back now, I’m not sure why we said yes, well I am – we want a closed loop system soon!! LOL (This is when the CGM speaks to the insulin pump, so it is all automated hopefully one day!) but doing the 15 minute finger pricks were not fun!!! But, of course, my Beau baby rocked it!!!!! He only complained about the last 2 times on each of those days! Incredible!!!!!
Fuck me that kid’s amazing. The shit he deals with is so annoying and painful and he’s constantly got things attached to him, and it’s all never ending and you barely hear him complain! I mean, we always hear him complain about his brother, and what’s on the TV and Rocky eating his food thats dropped on the ground lol but he’s 3! So, ya know!
So then, I feel like a real cock for coming on here (or onto my social media for that matter) and venting. Cos it’s not even me! And if Beau can handle it so well, and with such courage – why can’t I?! It’s not even me with this disease. Although, FUCK I wish it was. I would give anything to rewind a year, speak to the powers that be and give me Type 1 and leave Beau completely out of it. And you know what, I would feel much less hard done by if it was me. It should be me!
(I do probably eat enough chocolate to end up with Type 2 soon, but THAT’S VERY DIFFERENT!)
Right, well I’ve rambled, and enjoyed getting back to this again, not that you guys have been missing my vents I’m sure. I had a big day at work, followed by some awesome professional development on emotional regulation and trauma which was super useful and I can relate to – living in a permanent state of 98% sand papered brain. (if you know, you know) Anyways, where I was going with this was that Beau napped today in the car with his Nana, so wasn’t asleep when I started this. I’m still lying beside him typing this and it is that boring he has finally gone to sleep lol.
(This photo was the other night, he had just been low. I treated him and tested to make sure he had come back up then he feel asleep within 10 seconds in my arms. We stayed like this for ages.)