You know that cheesy mantra about there being "no 'I' in 'team'"?
Well when it comes to my diabetes care team, sometimes I feel like it's much more of a diabetes care tiim. I feel like the 'I' and I'm doing it all myself.
On the surface at least, my last clinic visit, on July 31st, wasn't so bad. My A1c was unchanged and I got to spend a good 45 minutes discussing various issues with my diabetes consultant - who is essentially a very good man. But that is where it started to get not so good.
The issues are multiple. I hadn't taken along any recent blood glucose records, which meant that my consultant was working somewhat in the dark. Obviously I fully accept that the responsibility for providing my records lies with me, but I have my reasons. Holidays was one of them. Not having access to Carelink owing to the fact that I don't have a copy of Windows to run on my Mac, certainly don't want to fork out for a copy of Windows (else why would I use a Mac?) and wouldn't want to use IE7 even if I had Windows. Carelink would be by far the simplest solution for me to log data and share it with my care team right now, but Medtronic have made that impossible for me. Yeah, I'm damn mad about this. My chronic medical conditions dictate or influence enough of my day to day lifestyle choices. I won't have my medical conditions dictate what kind of computer hardware and software I should use.
The real downside to the appointment came when I finally admitted that yes, things are not good. That yes, I'm still experiencing a high number of severe hypos at night, some involving seizures. My consultant was pretty appalled. Not at me, and my lack of control, more that I hadn't asked for help.
His words were "I can't let you keep having this number of serious hypos."
So why have I not asked for help?
Well, in one way I have. I've be fighting for over a year now to get support to get some financial assistance for CGM sensors. I know this sounds like a cop out to the very many people who aren't lucky enough to have access to CGM at all. But whilst there are very few patterns in my control at present, the consistent pattern is that things are far worse when I'm not using a sensor. I do have enough records to prove that. Various changes in my personal circumstances, including being unable to get sensors at US prices any more, mean that I've not been using them as regularly. But despite the fact that my clinic have assisted some people to get financial support, I'm repeatedly met with a blanket "no." And my PCT won't even consider a direct application without consultant backing.
I digress again.
On why I haven't asked directly for more practical help then: because it is so damn difficult. Especially in my line of work.
Take this example: I call the specialist nurse with a problem. She'll be busy with a patient, or an education course or just generally doing her job. So I leave a number and request a call back. The call back comes a little later by which time I'm elbow deep in a surgical extraction of a wisdom tooth, or halfway through delivering an inferior dental nerve block injection or just generally doing my job. So we miss each other.
And when this has happened multiple times, then as hard as carrying on without support is, it is easier than keep struggling to work the system. I know I could get more support, but it seems like too much hard work to be truly worthwhile.
Towards the end of my appointment came the real crunch. My consultant insisted that I must come in again in 3 months. He seemed receptive to the fact that allowing 6 months to elapse between appointments adds to my sense of abandonment. But when he tried to request an October appointment he was told that the October "pump clinic" was "full". So the next available is January.
"Don't worry" he assures me. "We'll sort something out. We just have to fiddle the system and you'll get an October appointment sent out to you shortly.You need to be more supported professionally. "
So why, three weeks later, am I sitting here without an appointment? Why do I feel more abandoned than ever?
I can't do this on my own, but I can't find a way to get the professional support I need either. I don't have the energy it seems to require of me.