Disclaimer

BEFORE YOU START: Please note that although I currently volunteer for both the Stroke Association and Age UK, the views expressed in this blog are strictly my own. I am not a spokesperson for either (or, indeed, for any) organisation, and I accept complete responsibility for the views expressed herein. I've tried to use the Glossary to explain any ambiguous terms, but if you think there is anything I've missed, please message me.

Thursday, 28 September 2017

Cold

I've had this funny cold-like thing these last few weeks. I don't remember being like this before - no cough, no sneezes, no sore throat, I've just felt phlegm at the back of my throat and a "tickly" experience. I've even resorted to the old favourite Strepsils (the sugarfree variety) to soothe things, although just like the originals, they contain small amounts of medication so are subject to a limit.

I haven't really had a cold for years - that I cycled so much kept me immune from most ailments - and these days I come into contact with far fewer people, but I'm wondering whether being on an air-conditioned coach with a bunch of people for a week might have contributed?

This lurgy is on the mend now but it was bad enough last week to keep me away from the hospital. So there was no drop-in. I figure that in my state, the last person they'd want to see was me!

I mean, this is all something and nothing. I just mention it because at the back of my mind I wonder whether the stroke came into play somehow? It seems ridiculous, but one finds oneself thinking these things.

Bad Leg

Apart from my ankle, I get by OK with my leg. It works, but it does feel different. It is difficult to explain: there is definitely sensation there, I am aware of the sense of touch, for example, and can feel heat and cold, but I can't pinpoint exactly how it feels different.

A consequence of this is that it "goes to sleep" through inactivity, especially in the morning. If I get off the sofa in the morning, for example, my first few steps are quite doddery. This is not the case if I move regularly, or in the evening (at least, that's my perception).

Another way in which this manifests itself is during the night, when I often suffer from cramps in my leg. Almost every night, it seems, I need to either jerk my leg in order to correct it, or sit out of bed altogether. I used to get cramp as a cyclist, after long rides, and put it down to dehydration, but not as often as I do now. And it occurred on the calf muscle itself, if I bent my leg too quicky, for example. These pains occur in my foot or the front of my leg, if I straighten things carelessly. So possibly different. And again, possibly dehydration - I don't like to drink too much in the later part of the day because I don't like having to get up to pee. And I can often aleviate it by using my other foot to lift my bad foot to 90°. There is a kind of acceptance that things are just "different" these days.

Wednesday, 27 September 2017

Carbs

I think I mentioned before was that one of the things wrong with me is diabetes. I lived with this at arm's length for many years. Both parents were also affected, and yet with all the cycling I did I was, if anything, underweight. The diabetes might have caused the stroke. It's possible but by no means a dead cert.

It's a funny illness because whilst it's generally associated with fatties, as I say above, that ain't necessarily so. It's only really since the stroke that I've padded out a bit, more through just the lack of that exercise than anything else. And whilst the headline Enemy #1 is sugar, the real danger is carbohydrates in general, although of course sugar being a carb will do the job nicely, in sufficient quantity. If I eat some potatoes, my sugar goes sky high, without any sugar cube in sight.

Whilst the cause of the stroke was unknown, this was one of red flags, and I didn't pay attention to my sugar levels in the way that I do now. The other biggie was my blood pressure, although to a large extent this is out of your control - you go to the doctor's, you get a tablet or two, and you hope that things get lower. Don't get me wrong - there are steps that people can take to reduce blood pressure, but let's just say that in my case they didn't stop me from having a stroke at 48! In my case, the management of my blood pressure was a problem for years, even though I was a skinny cyclist. While I was in hospital following the stroke, one of the things that got changed was my blood pressure meds. Lo and behold, my blood pressure is now well controlled, although it is only measured quite irregularly, so this says to me that I could have been on more appropriate drugs all along.

No sour grapes, I'm just saying... You do end up being fatalistic - if my blood pressure was/is the problem, then there's not a great deal I can do in any case! At least I can control what I put in my mouth.

Having said all that, I met my wife in Salisbury yesterday and we enjoyed one of those tiered afternoon teas! Finger sandwiches galore, although I was quite frugal in having just a single (dry) scone, plus a single cream cake (a minature chocolate eclair). My next task this morning is to test myself (which I now do daily), although I skipped carbs at supper so hopefully everything evened out.


Sunday, 17 September 2017

Holiday Time

I went away on holiday with my wife last week, my first time away from home since the stroke.

We stayed in a "normal" room, i.e. not one for disabled people. Deliberately so on my part. The holiday, however, was an organised coach trip to Scarborough, and was clearly aimed at more senior people. A lot of my criticisms of the package are based purely on this age difference. For example, the hotel was without internet, and what they said *did* work, *didn't*. Nobody seemed bothered, except for my wife and I.

Getting onto and off the coach was dependent on the actual terrain on which we were parked, but was generally do-able. There were plenty of things to hold on to, to give myself leverage. So too was manouvring about the coach. I did find that my bad leg was prone just to "relaxing" out of the seat into the central aisle, something I had to be aware of.

The room itself was en-suite, with a bath and a shower over it. Of course, there were no grab-rails that I'm used to, although this wasn't particularly a problem - again there were plenty of places where I could safely use my good hand to lever myself off the toilet; the shower was actually better than the one we have at home, and I didn't use the bath.

During the week, we visited the nearby Whitby, Pickering and Bridlington, plus of course had time in Scarborough itself. Also the village of Goathland (the TV series Heartbeat was filmed here, although I never watched it, so to me it was "just" a moorland village), and the WWII prison camp Eden Camp which is maintained as a museum.

Fatigue was a big-ish problem, and it limited my energy levels quite severely. I did a lot of sitting, although of course this was the coast! I did manage to see places, but these were very much one-off visits to see the town centres, rather than long, relaxed strolls about the place. My watch counts my steps - a normal day these days is just a few thousand, but here I think one of the days was 12,000. Because of this, my sugar was well-controlled, until I realised I could push it a bit with the odd piece of cake or ice cream. There were lots of mobility scooters about the place, although I didn't try one. Scarborough, particularly, is built on several levels, so there are lots of gradients. Worthwhile, but very hard work. Pretty much everywhere else was flat, at least the areas that I saw. Pickering is the terminus of the North Yorkshire Moors Railway, and we were lucky enough to see a train arrive, although we didn't have time to travel. Pickering itself was pleasant enough, though there was precious little else there.

I have published a set of photographs under my real name, if anybody is interested. A taster appears below:

My Flickr stream



Wednesday, 13 September 2017

I, me, mine

When I was in hospital, and afterwards, everything was first-person. Everything revolved around me, in my world at any rate. It's not surprising, I suppose, after all a stroke is pretty major. But I assumed that this attitude was caused by the stroke, and that becoming more selfless was a part of the recovery.

Not so, I've concluded. I frequently meet people who behave like this and who really should know better.

Thursday, 7 September 2017

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.

Tuesday, 5 September 2017

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.

Monday, 4 September 2017

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 Downton, 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.


Saturday, 2 September 2017

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....