Quiet

A quiet day with nothing planned. I think I’ll have a long soak in the bath later to celebrate…

Even though I’ve hardly been writing this blog for any time at all, I have already mentioned that people’s assumption that, as a stroke survivor, I am some helpless vegetable drives me mad. I think whether somebody sinks or swims in this situation is defined 95% by attitude.

Stroke or no, life just has to go on. For me, yesterday afternoon, this meant faffing around on the driveway installing a battery charger on our second (now dormant) car, which, I found to my cost, sits just a little bit too far from the power supply in my garage. One of those maintenance things which will keep it’s battery completely topped up. I was amazed how much smaller this thing is, compared to my old battery charger (which I still use occasionally, but which is by no means “smart”).

You know, if you’re going to move forward in life, you simply just need to “do” this kind of thing.

And I must admit, although I think of the day as empty, I now have a deeper understanding of what my HbA1c value means, as opposed to the value I read on my glucometer every morning. And my cholesterol numbers.

Post-FES and buses

My appointment went well and everyone is happy.

The only issue was that I had to get the bus up to the hospital, and it happened to be running about 15 minutes late. Unfortunately I couldn’t build in any slack (the buses only run every 90 minutes, and I made the appointment months ago, when I assumed my wife would be able to drop me off). But with no issues to complicate things, we were finished within half an hour, so the guy was easily on time for his next appointment.

I apologised, of course, for being late, but beyond apologising I just have to shrug my shoulders and explain that I’m at the mercy of our public transport system. People either understand or they don’t – but mostly they’re fine.

It’s funny – Google insist that the plural of “bus” is “busses”, but it looks wrong to me!

Green

If you detect a political slant to this blog, I must admit to being a member of the Green Party. This pre-dates my stroke slightly (by a couple of months), but is really quite recent in terms of the length of time I have been interested in politics. I never really found a party that was a good fit, but the Greens have been the best fit for a few years now.

I’ve always leaned slightly to the left, I suppose, and while early on I supported the (British) Labour Party, they are wedded to our current electoral system. Not only do I think it needs to be changed, but I think the issue is second only in importance to the environment. The Greeens say that too, plus they have the right idea on the environment. So anybody who can tick my top two boxes, I will support.

One area where I diverge from the Greens, however, is that they are very pro-EU, where I am not. I don’t think that the EU is particularly representative, and I think we need a representative democracy as a foundation, even before we start building policies on top. The EU isn’t that, and has no intention of becoming that. So I’ll pass. Frankly, Westminster isn’t that either, but let’s fight one battle at a time. If I wanted to be mischievous, I might ask why Greens don’t think the same way. Even if they said there were things wrong, but that on balance we are better off in, then it would be a start. But no … (Incidentally my view is a very left-wing Labour view, so maybe I am closer to them than I think?)

The Brexit issue is only a single issue, though, so hopefully we can agree to disagree on that one issue, and concentrate on all the things we do agree on. I mean, sure it is a big issue, but the environment is bigger.

But I’ll try to keep things on the blog logical, not ideological – I had to be very rational on account of my working life designing software (although my wife may disagree!) so I’m hoping it won’t be a problem here.

I suppose it is helpful to support a party with a name which is known the world over, I think pretty much all of us must have a Greeen Party. Even if they differ slightly, the general thrust will be the same. So international readers will know immediately whereabouts on the spectrum that I sit.

FES

I have a quiet week lined up. I try to restrict my week just to a couple of things, just so that I don’t overload my body.

The only thing showing this week is an appointment with the FES people. FES is Functional Electrical Stimulation, which involves sticking a pair of electrodes on my leg, and applying a small current when I walk. This stimulates the muscle that controls my foot, artificially raising my foot to give me a more natural gait. See? I’ll be you never knew there was so much that happens when you take a step!

I’ll talk a little bit about FES. Old hat? I mean, electricity has been around for 200 years, right? Wrong. FES is actually leading edge, at least in the medical world, so much so that the NHS does not provide this treatment as “standard” – In fact, I was only offered this treatment after they’d checked my address – apparently I live in the “right” county (Wiltshire) and am eligible for the treatment. Of course, this then raises the question about what treatments I haven’t been offered, because I live in the wrong place?

The equipment itself is a couple of electrodes stuck to my calf, as I’ve said, and these are attached by wire to a control box which sits on my belt. In addition, the thing needs to know when to apply the current, and so you also wear a small, flat pressure sensor on an insole in your shoe. this too is wired. So you have two wires which run pretty much the lengt of your leg, to this control box (in which, by the way, there sits a 9V battery).

Whilst it is true that the device does improve one’s gait (which means you walk faster), there is an offset here, and this is installing the device each day, making sure these wires are placed under your trousers. So whilst, for me, there is a gain, there is also a cost in that dressing becomes slightly more complicated and time-consuming. Consequently I find myself asking myself whether I’m going to walk anywhere that particular day? If I’m just going to stay around the house, it is quicker just not to fit the device that day.

When I first got the kit (and it is probably a reasonable question to ask why I didn’t get it until 6 months after I left hospital yet another to ask why I didn’t even know about it) I got back in touch with the people with some suggestions for improvements. As you might imagine, at the top of the list was to make the thing wireless. “Ah, we’ve already done that” was their reply. But I’d been given the more basic (and, presumably, cheaper) “wired” version. So there you go – by default an NHS patient won’t get the service at all, and even if an NHS patient does qualify, you’re not offered the bells-and-whistles version by default.

Of course, the bells-and-whistles gadget is available if you’re prepared to approach the company privately. The company is called Odstock Medical, although beware – you need to create a login in order to see the prices of their products (they say this is necessary because these things attract different duty depending on which country you live in, although I don’t see why they can’t quote a price which excludes duty). I am not sure whether these guys are the only company in the UK to offer such products.

Recovery

Well, I’m having a lazy weekend, I even had a nap yesterday afternoon. I really wish I could keep up the pace that I used to, but it’s simply not possible any more. Still, I suppose, I am lucky in that you hear about stroke survivors suffering chronic fatigue, with whole days being written off. At least in my case, a few hours nap seems to set me back on course. I suppose it’s not that much worse than when I was healthy! Of course, this kind of thing will be critcal when it comes to going back to work.

Friday lunchtime a guy I used to work with a long time ago came round, and we went out to lunch at a nearby pub. Lunch itself was a lovely plate of fish & chips (what else? It was Friday after all!), although I do find myself making small adjustments on account of my newfound disability. For example, I was unable to read the specials board (my eyesight is certainly worse than it was 5 or 10 years ago – this could have been caused by the stroke, or it could have been caused by the diabetes that possibly caused the stroke, or it could have been caused by the treatment that I had because of the damage caused by diabetes, a big mess!). Anyway, I was unable to read the Specials board, so listened very intently as the people on the next table discussed their lunch choices!

I find that the best thing about this guy is that my stroke doesn’t really seem to have changed anything at all. When we discuss the stroke, or indeed the troubles that I’ve had because of my daughter, it is all done in a matter-of-fact kind of way. I meet so many people these days who seem to think that I am defined by the stroke, and it drives me crazy! I mean, for sure I had this really shitty thing happen to me, but beforehand, I’d spent almost 50 years living a life, and I’m still pretty much the same person underneath (for better or worse!).

Anyway, the upshot was that this was my third day on the trot that I’d done some kind of activity, so Saturday was a nice opportunity for my body to play a little catch-up.

This morning, a very belated breakfast of pancakes (I prefer the term “crepes”), and settling down to watch another stroke survivor, Andrew Marr. Now there’s a guy who shows that despite stroke, one can operate at the highest level!

Workshop

I had an interesting morning today. I was told about this workshop organised by the Stroke Association, I had a free morning, I secured a lift, so I popped along. Aside from being interesting to meet some new people, I had to bite my tongue when they talked about stroke care. Dial 999, priority treatment, etc.

I won’t go into massive detail here, but suffice to say that when I rocked up at hospital….they sent me straight home! It was only when I turned up again 2 days later, feeling somewhat worse, that I was admitted into hospital.

Also, the workshop raised the point that one of the biggest anxieties suffered by stroke survivors is whether they will have another stroke. But, when current technology is such that causes of strokes often aren’t known, I’d defy any rational person not to feel anxious!

But there were some fun attempts to get (mostly) able-bodied people to appreciate what it feels like to have a stroke. However, I can say with some authority, if the reader would like some appreciation of how my particular stroke feels, just go through to the kitchen and butter a piece of bread, one-handed, using your non-dominant hand. You’ll be surprised that both the tub of spread and the piece of bread appear to have wheels, and I can guarantee hours of fun (almost) as you chase these things around! Not quite so much fun if you’re trying to make your lunch.

Hospital Drop-in

Another visit complete, that must be five or six now.

The highlights of the visit were seeing one of the nurses who looked after me again, and seeing my favourite Occupational Therapist. The visit was also quite difficult at times, because I spoke to a couple of people with aphasia (difficulty communicating) and tinged with a little sadness because one of the patients I’ve seen several times – he’s been in hospital for three months – has been told that he is to go home in a few days. Good news for him and his wife, of course!

I’m sure that one day these visits will become a chore – especially as I know that there is politics going on behind the scenes – but for now I’m just happy to be able to give something back. To me, it is just nattering to people, but to many of them, it is more.

I got the bus there and back – because my arm is knackered I need to get myself a new car, an automatic at least, and I haven’t found one yet. The walk to and from the bus stop is a good 500m each way, that takes its toll. Fortunately, because of my disability, I now have a bus pass which means that the trips are free, so I was able to treat myself to a coffee at the end of the visit.

I should also say that because of my arm, I now type effectively with one finger. Combined with my less-than-perfect eyesight, this can lead to typos. I do find this frustrating, because when I was healthy I was particularly good at grammar. You have been warned!

Just Visiting

It is a Wednesday, which means that I will be doing my once-fortnightly hospital visit this afternoon. I must get ready!