I was looking at Facebook yesterday. Last night, there was a documentary on C4 about a stroke survivor, so on the C4 News feed, they advertised the program. There were lots of comments about how this woman is inspirational or courageous. One comment even said she was lucky – I can understand this in the context that even despite her injuries, it could have all been worse. But thinking of this woman getting up every morning, looking at herself in the mirror, do these people really believe she tells herself how lucky she is?

I remember the only time since the stroke that I was told I was “lucky” – it was by an aphasia-sufferer who hadn’t yet seen my disabilities, but it made me laugh. And after all, maybe from her perspective I am? Being unable to communicate as effectively as you once could must be horrible. As we talked, and she subsequently found about the physical limitations, the reaction changed from lucky to “poor you”.

But at the risk of being non-PC, I’m not sure that inspirational or courageous are the right words. As a survivor myself, I’m not sure it particularly takes courage to get up in the morning – it’s a necessity in order to do what we have to do that day. If we didn’t do that, we’d end up just shrivelling up in bed. I don’t think it’s courageous, particularly, to do what everyone else does, to want to get on and live our lives as best we can. Don’t get me wrong, I’m really happy that this woman is picking the pieces of her life back up (including making documentaries), I’m really pleased that someone like Andy Marr has been able to resume his career fronting one of the most heavyweight current affairs shows on UK tv, but is it really anything above-and-beyond what any of us would do? And if someone wants to feel inspired by that, good luck to them. But I really think it is something that we would all do if we were thrust into this situation. I think we’re all surprisingly resilient, we’d even surprise ourselves.

You know, even in terms of what we actually do in life, when I think of what I do (I have no idea whether this girl does anything in terms of raising awareness of stroke), all it really is is chatting to people. It’s not rocket science. Really, anyone could do it. Sure, I can talk from the perspective of having been through that experience, so I do recognise that there might be some added-value in me going along as opposed to Joe Bloggs who has no experience of strokes. But really, it’s not as if nobody else could do a satisfactory job.

I get similarly blasé about charities giving out awards for things like “inspiration of the year” – isn’t it just what any of us would do? Certainly, those or us who get involved anyway? To go beyond that and have awards for this and that isn’t eally news, it’s more the charity hoping that mainstream media will pick up on the event, and raise awareness among the public a little.

Eye Clinic

Up at the hospital today, this time as a patient. Eye Clinic.

Another noncommittal scan. The same advice as last time, that laser treatment is available. The same reservations. See here if you’re interested

I don’t really like going there, because it is a stark reminder that bit-by-bit, this disease is progressing, and sooner or later it’ll get me. I also get frustrated because nobody will give me a straight answer to the question, “But surely we can measure, or at least monitor, this progression somehow?” Maybe the answer is simply “That’s what we are doing.”, but the one thing I don’t have a handle on is how urgent any of this is. The consultant is happy to tell me all the factors at play (to some degree they’re irrelevant, in the sense that the treatment is already clear) but cannot/won’t give me an idea of the urgency.

Anyway, that was today.

Testing, 1, 2, 3

I follow a couple of diabetes-related groups on the internet, and if you’re so minded, it’s possible to have heated debates with people on the subject of how often you should test yourself. I mean, test yourself as often as you want, but bear in mind that for each test, you have to prick your finger, so you really have to ask yourself whether pricking yourself too frequently does it any harm. For example people who have pricked their fingers for many years often complain of poor circulation in their fingers and toes, but the Catch 22 is that diabetes itself causes poor circulation!

Anyway, I thought I’d describe my routine. Bear in mind that as I’ve blogged many times, I take insulin. Twice a day.

My daily testing regime, on top of that, is just to satisfy myself that I’m taking the right amount of insulin. To achieve this, I normally just check myself just once per day, before any food or meds, just to get an idea of what my baseline blood sugar is.

If the value is higher than I’d like, I make a note of it for future reference. I try and think back to yesterday – what did I eat which could have caused this? It’s invariably something high in carbs. A bag of crisps, maybe? Not necessarily anything sweet. Sugar is a carb, but it is a mistake to think that sugar is the only carb.

Following this, I’m very strict for a day or so. If the high value were due to food, then the test result should go down. If the test doesn’t go down, and it’s been that way for a number of days (I don’t have a fixed number of days), then I think about increasing my insulin. (In theory, if the number were consistently low, I’d do the opposite. But it doesn’t tend to happen in my case.)

If I do decide to increase my dose, I have a choice: to increase the morning dose (immediately pre-breakfast), or the evening dose (immediately pre-supper). To make that decision, I’m back to testing once again, so I can see how my sugar does at different times of the day. Once I have made a decision, I will increase the dose by a small amount at a time (maybe 5%). The process then starts over.

Daily tests I generally take at least 2 hours after food, just so that it doesn’t skew the result. Again from this forum, I’ve also heard that 90 minutes is an acceptable interval, and don’t really think it’s something I care enough about to argue the point.