I’ve been gone nearly two weeks good grief. I have a few ideas for blogs and a few sentences done here and there but I’ve been busy and thankfully with LIFE and not HEALTH. Yay. Anyway, somehow I missed this week coming but Dblog week is huge for me. I love seeing what people have to say and I love the challenge of other people picking what I write about. I’d love others to prompt me more to be honest. I want to know what people want to know…you know?
So day 1. Let’s do this.
Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you.
Wow. I love this question but I’ve not thought about it too much. All of the above matter to me. It is hard to pick something that means the most because the lack of anything in a diabetics life can be costly. I spend years fighting for an insulin pump and many more years than that hiding hypos at school and stumbling into the toilet to devour glucose tablets between classes. I was so quiet no one noticed if I was staring into space and it may sound arrogant but most classes I found so easy that even my hypo brain could spit out the right answer if I WAS asked. I think about test strip accuracy and sometimes I think there is a lack of appreciation for how much better they are these days and the fact that my mother grew up with no strips at all. I wish pumps were easier to get and yet I understand why so many would shoot themselves in the foot personally before accepting one. I understand that people are diverse. I think Grump summed it all up well. Choice is the big thing.
But I think I’m going to take this down another route, to put another idea out there. I really wish that the diabetic community would be more appreciative of what it does have. I hear about what people don’t have all the time and rarely do I see people talking about how they appreciate that their country has novorapid or how amazing it is that blood glucose monitors that also check ketones exist. Before those meters we were forever an hour behind. Urine told is what was going on a while ago. These monitors tell us what is going on NOW but do I ever see them being praised? No. I see people talking about how clunky those monitors are and how they like their other ones better. I see people demanding the NHS to hand over another £150 meter (at least) so they can test on two different types. We see them for less than that in Boots chemist but your Spanish pal would hand over a lot of their monthly wage to replace theirs in the local chemist. THAT makes my blood boil. I understand having a back up meter and I understand that is not always the same as the primary but to see people have a meter for ketones, a meter for blood, a backup meter and then….then sit and wonder why the NHS can’t afford to hand everyone a pump? I hate that.
So many want everything and they want it right this instant now. They want pumps, the best insulin, a million strips, five different testing kits, a GCM and everything that comes with those gadgets and then this, that and the other on top. It all costs money. Of course we deserve to have the best treatment possible, of course I understand the desire but horror stories in the newspapers aside diabetes is expensive. Budgets run out. I started on one meter with 4 strips a day, plastic needles, bottles of insulin and sticks to pee on if I thought I had ketones and my mother was gobsmacked because she didn’t even have a meter back then. Her HBA1C was good enough that they couldn’t justify the money on it.
Whether it is an insurance provider, the NHS or equivalent or your own pocket, being diabetic costs SOMEONE a fuckton of money and as the saying goes it doesn’t grow on trees.
So yeah, it does make my blood boil when some people are going bezerk when they DO have hypo awareness and are throwing the toys out the pram because they don’t have a GCM when someone in Africa literally has no insulin and will be dead next week. I am so hyper aware of the cost I am on the NHS with my pump. My doctor cut my blood strip allowance by a box a month but on the pump I’m testing less so I said nothing because I don’t’ need that box. Someone else does. I honestly think so many do over test out of fear, yes fear our own hospitals created in our minds but fear. DAFNE patients are told they shouldn’t need to test more than 4 or 5 times a day unless they are a driver and/or feel themselves going hypo or high. Too many doctors are pulling their hair out because patients are interfering before insulin runs out or carbs run their course.
Not to say that everyone is pushing too much or that everyone asking for something is wrong or that a good hba1c means good control. I mean I know that best. I had a good hba1c and couldn’t be signed fit for work. But I think it would be ignorant to try and deny that so many just want the hospital to give them some expensive piece of kit to sort their problems. Or they want something to make them feel like they don’t have diabetes so diabetes doesn’t interfere with their lives and that is just naive. We will ALWAYS be diabetic and disabled and different from everyone else. Over testing doesn’t help anyone. It probably makes them fear their disease more, makes them interfere more, creates more problem and destroys the feeling in their fingers or just, makes them really fucking sore.
People want money into artificial pancreas research, money into stem cell research, money into cloning healthy pancreas’, money into strips, money into pumps, money into gcms, money into research, money into programmes to teach people carb counting, money into this, money into that, money in the next thing. I want money into ALL of that but honestly? There is only so much money. There are only so many hours in a week our nurses and doctors can work. There is only so much they can do.
I passionately want the diabetic community to give some people a break. No, I don’t think saying ‘but I’m type 1’ is enough reason for a doctor to prescribe you all the test strips. Budgets happen. Budgets suck but they happen. And one extra box of strips for you is one less box for someone else.
Yes, push for more than what we have but be grateful and acknowledge what we have NOW. A hundred years ago we’d be dead. Fifty years ago certain foods were banned completely. Twenty five years ago most of us could not test blood sugars at home. I could have gone private and spend thousands to get my pump instantly but I chose not to take out a lone. I chose to wait. There is a choice within the UK on that front not often talked about. It IS there though. Honestly, I think we’d get more results in regards to what we do want later if we acknowledge to people what we have now. And that is a hell of a lot. An expensive lot.