Today is Tuesday and I am frazzled. This T1 stuff takes up a huge amount of my head, each and every day.
Four times (four frickin’ times!) I have been to the GP with my son for him to give me permission to order his prescriptions online, and I’m still not online and I have to go back again! What makes my inner-banshee come out is the waste of our time on top of people not knowing what they are doing. I know what I’m doing, I have too, dithering and incompetence are not options when your child needs his meds to stay alive. Since he’s turned 16 he has to give me permission to access his online records, to be able to order all his meds he needs. I get why he needs to give me permission, he’s 16, he can go to the doctors by himself if he wants but he is happy for me to access them now; this may change and that’s fine. Remember the movie Terms of Endearment? Shirley MacLaine screaming at hospital doctors ‘give me daughter her goddamn pills!’ I want to do that in the GP surgery TODAY ‘give me the online access FFS!” It’s a good job I only work three days a week sorting all this stuff out takes at least half a day a week it not more. Why on earth you can only order a months supply at a time is also backward, he’s a type 1 diabetic, a lifelong condition which is not going to change, he needs this stuff – helllooo??!! penny dropped yet!? If you ask for more than one month’s supply you get accused of stockpiling. No, not stockpiling, just trying to stop me and the NHS wasting time every month, doing the same thing every month (nurses, GP, pharmacists etc) – just so inefficient and a classic trap of ‘it’s always been done this way” mentality. We can only have one small sharps box a month, we can’t throw any of the one-use needles in the regular bin, they have to go in a sharps box. One box is not big enough, we can’t have a bigger one. Why? Because we can’t. However, we can order one and pay for it ourselves but the NHS won’t dispose of that one, we have to pay £34 for the privilege. So I ‘CBA’ with this laborious tap-dance every time and I bend the tiny needle out of harm’s way and put them in the bin.
So, that’s all the practical shizz, as well as on top of keeping the cupboard full of supplies stocked including hypo treatments in the kitchen, car, schoolbag, school, our bedside drawers. And then monitoring levels before and after every meal, worrying when I go to bed he’s going to drop low, or be too high in the morning Trying to find his CGM at 3am to test in a tangle of arms and duvet; then trying to correct or wake and treat and then try to get back to sleep if treatment has needed to be given, whilst a shit load of adrenaline shoots through my body. After nine months of learning all about T1 I now know more than ever what it means and today, I’m frazzled. I know I won’t always be but today 😦 I echo the words of George from Seinfeld ‘Serenity now!’.