Disabledness

I think disabled people need to be careful of a kind-of “divide and conquer” approach. I do look at some arguments, and it seems to boil down to “I’m more disabled than you“, which I think is nonsense.

For example, some time ago on a stroke forum, somebody was sounding off about missed doctor’s appointments. Said people should be fined for missing them. As this was a stroke forum, I would assume that this person had either been touched by stroke themselves, or was close to someone who had. I asked whether this should apply to all patients. What about people with mental health issues, or dementia, which might mean they simply aren’t capable of remembering appointments? And, what do you do when people either don’t, or can’t, pay the fine? Refuse to treat them? And how do you gear up the NHS so as to facilitate payments? How much would that cost? All sensible questions, which go far deeper than the original knee-jerk reaction.

I think it’s very easy to buy into the tabloid theory that people who miss appointments are just out to mess people around, to abuse their “right”, or that everybody on the dole is just lazy, say. We need to look beyond the headline and not fall into this intolerance trap.

Stress Ball

To try and help with my dodgy hand, I bought a small stress ball off eBay. Lovely, has a globe printed on it (so it is educational too!). I squeeze it with my bad hand, and compress it around 1cm before the tension defeats me. I must try to squeeze this every day. Certainly this isn’t brilliant, I’m just hoping that one day I will fully compress this thing, and it’ll help to remember this time and see progress.

Consideration ?

I am reminded of something which happened a couple of weeks ago. I was out walking, quite close to home in my tiny English village. Not particularly busy. And I encountered, outside the doctor’s surgery, a car which had been parked up on the pavement, blocking my way.

As I brushed past, its owner happened to come out. I mean, clearly this guy had thought he was being considerate to other road users by reducing his footprint on the carriageway, but he had forgotten that he was, in the process, making life more difficult for anybody in a wheelchair, or pushing a pram, or someone like me who is decidedly unsteady.

This chap was obviously quite nice because, as he came to his car, he apologised to me, So I replied that it was quite all right, as long as he didn’t mind the paintwork on his car being damaged, as I was not in full control any more of exactly where I walked.

I mean, I’m really beyond worrying about things. Even in my village, you do occasionally find cars blocking the pavement. In fact one such occasion was pretty much the only time that someone was outright rude about my disability. “You can just walk round it”, when every step takes a noticeable extra effort.

An interesting, even if academic, legal question. I mean, if I had have damaged this guy’s car accidentally, I suspect one of the bearings would be this guy’s negligence in placing his car in harm’s way, even if technically it were me who damaged his property.

So, next time you think you’re being considerate, ask yourself whether you’re not, in fact, being inconsiderate toward someone else.

Enforced Break?

Although the name of this blog is clearly health-related, I’ve actually been quite lucky that health issues haven’t come into play for a while. That all changed last week.

Thanks to being diabetic, I’ve had problems with my eyes which actually pre-date the stroke (although the stroke made things worse). I had a couple of treatments at the time (some good, some not so…) and have had regular scans ever since. Last week I had a scan and was told that there were signs that I may need more treatment.

Now, we’d seen traces in earlier scans, which might have been precursors to this, but it was always a case of “we need to keep an eye on this”. Last week, I saw a different doctor, and the story was different. I have no idea whether the scan was any different to previous scans, whether this was a different doctor’s different interpretation.

I mention this because only a few days ago, my wife (who is a nurse) was expressing frustration that some of her patients had been labelled as “no action required” (by the doctor then in charge) when they clearly ticked certain boxes in terms of diagnoses. So it is possible for two different clinicians to look at the same set of results, and conclude two different things. One would assume that the higher up the tree you are, the more your professional judgement comes into play.

In my case, everything is further complicated in that the treatment which was mooted by this doctor was laser surgery. Painless enough, but I had a bout of laser surgery a couple of years ago which was largely ineffective. There is a definite cost to laser surgery, because whether it is deemed successful or not, the laser zaps good cells in the process, thereby causing a degradation in vision (although doctors argue that the loss is negligible). My vision is now some way short of perfect (due to diabetes, stroke, and possibly treatment) and I am concerned about reducing it further. So I’m very wary. And I have enough experience of the NHS to know that treatment decisions are cost-based rather than quality-based, so I want to be sure before doing anything.

At the same time, this new doctor was at pains to tell me that I was at risk of bleeding into my eye, so it is not as if I can afford just to take no action at all. But I think a second opinion is required.

I feel somewhat cheated because my sugar control has been exemplary since the stroke, and yet this shit is still happening to me. It is following me around and won’t let go until I’m blind.

Of course, if something does happen, then it is unlikely I will be able to write further entries here for a while….

Messing with your Head

I wanted to say something about how strokes can affect people mentally (or do they?) My thoughts about this are a little incoherent, so I hope as I type that they make sense.

I remember when I first came out of hospital, I felt somewhat divorced from reality, as if I were in some kind of perpetual dream. Nothing felt “real”. I put this down to two possible causes: (i) the stroke itself, or (ii) the fact that the stroke landed me in the artificial environment of a hospital, where you’re so looked after, for five weeks. I did have half such a discussion about this, with a guy who once spent a long period in hospital, he didn’t experience this, so I’m guessing the former.

It doesn’t surprise me in many ways. I used to be a keen photographer, and I would often put some kind of filter on the lens, to change subsequent photographs. Stroke is exactly like that. You need to add a “filter” into the loop, just to ensure that you process things as you did before. I’ve discussed this with another survivor, so I feel on quite solid ground here.

One of the ways in which this is noticeable is that the stroke has made me very “me”-centric. How will something affect me, for example? You have to remind yourself to consider other people. I still feel this, to this day. And it makes me particularly considerate of stroke partners, who get zero attention or support, but who have to live with the survivor.

My assumption is that this too is caused by stroke – which is,after all, a brain injury – although I am able to see this “me-centricness” in non-stroke people easily enough. In fact, the thing which prompted me to write this post was ostensibly a programme about how nursing has changed over time (which seems a worthy topic), but which instead seemed to be the presenter’s vanity project. This woman’s mother had been a nurse, so the programme had a very personal slant to it. Inoffensive enough, but not particularly interesting for me. And a bit weird that this person is impersonating a nurse (presumably for all of ten minutes!), yet seemed to hog the limelight so much. I’m not sure I’d have a lot of time for her.

On a separate note, I have been given access to some kind of training site by the Stroke Association. Thus far, nothing further has been said to me, but I couldn’t help but notice that some of the courses were marked as “mandatory”. Further, these courses seem to be aimed at a particular browser, Google Chrome, which I found quite buggy (so I use Firefox instead). So I’ll just ignore this site for now. If someone subsequently says “we’d like you to do this online course” then I suppose I’ll need to think about whether I want to install software and change browsing habits. It does seem strange that something is marked as “mandatory”, but is aimed only at a subset of all browsers. But for now, I merely make the observation.

Lastly, we have some relatives visiting next week, and the house is tidy (although full!). There’s a limit to how much I can do these days before I have to retire knackered, but I’ve been working steadily over the last five or six weeks, and had a lot of help from my wife, so it is just a case now of keeping on top of things like cat poo (remember, one of them is quite messy) smothered anywhere. Our daughter has also asked to come and stay, which could spell “mess”. But, as I smell furniture polish everywhere, I am sitting with my fingers crossed.