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.

Friday, 28 April 2017

Cuckoo Fair

Gearing up today for the bank holiday weekend. Mayday is always the time of our local annual village fete, the Cuckoo Fair. It is billed as this twee country affair, yet in reality is somewhat larger and less personal. Lots of traders who will spend the summer months going from fete to fete, lots of fast-food stalls which leave you wishing you hadn't bothered.... When we first came to the village, it was an occasion we marked in our diaries, but this has waned over the years. even before the stroke, to the point where these days I actively avoid it. Our sleepy village of 5,000 inhabitants, swells to 25,000 for the day, they close the main road and parking is generally a nightmare!

I'm not sure if my wife feels the same as I do, but certainly this year has made other plans. She is away for the weekend in the lovely Lyme Regis, some craft course or other.

My daughter, however, still likes such occasions, and has said that she will visit for the weekend. I suppose it is also an opportunity for her to see  the mates she left behind when she went into care, although we don't need particularly good memories to remember all the times, before she left, when she would complain that she had no friends. So as you can tell, there is still contact between me and my daughter, although in reality most of her contact is with my wife - I guess a mother's love really is unconditional!

But on these occasions when she does visit, they are invariably non-confrontational, mainly because we are both quite reserved with each other, and avoid contentious subjects. But all a far cry from when she claimed to be fearful of being in the same house as me. My wife is only away Saturday and Sunday, so we may even all go out for a coffee on the bank holiday!

Thursday, 27 April 2017

Volunteering

It has been quite an uneventful week. Tuesday, I had an appointment at the Eye Clinic ("maybe some swelling in your eye but far too early to say for sure. Let's keep an eye on it."), then took the opportunity of being up at the hospital to do a drop-in visit. The visit ended up being monopolised by just a couple of people, not that that's a problem, just that I was on the ward quite a long time.

A guy I chatted to was obviously eyeing going home, and he was asking me about benefits etc. - the kinds of things that become important once you get out. I chatted to a woman who thought that the Stroke Association should lay on a bus service to the local supermarket, a great idea but I'm not sure she realised just how thin on the ground resources are. As for liability insurance...nightmare!

On that subject, I had a mail from Age UK last week. Same old story unfortunately - some local council funding finished at the end of March, not renewed, so the knock-on effect is of redundancies. I mean, all of these charities are mindful of their volunteers, and are trying to keep things as "same" as possible, so fingers crossed. The trouble is, if you're a charity, I don't see how you can put a volunteer in charge of anything which carries real responsibility - a volunteer could say "I'm sorry, but I need to do X tomorrow, so I'll be unable to volunteer", and that's perfectly valid. But I'd have thought that for a critical role, you'd need a higher level of committment. Maybe "committment" is the wrong word to use in this scenario : I certainly don't mean to suggest that volunteers aren't committed.

On the subject of volunteering, apparently my daughter has started doing some. For both of us, I suppose, it is a means to an end. Neither of us particularly see it as a permanent thing. For me, it is about doing something useful while I am building my strength up enough to get back into work; for her, well, her CV is empty right now, so it shows that she's not happy just to be idle. I mean, in my case, I'd love to volunteer and work at the same time, if that's possible.

Monday, 24 April 2017

Granny!

A friend of mine, it is her daughter's 18th birthday today. I'm a couple of years older than her but she had kids a lot sooner than I ever wanted to (or had the opportunity to).

I used the occasion to remind her that the next step on the evolutionary ladder is to have grandchildren!

Saturday, 22 April 2017

Benefits

I thought I'd cover the subject of the benefits I receive from being disabled. A few of these, I have just stumbled across - so maybe they're not obvious or maybe I'm just not tuned in to the system.

Dealing with the state benefits first, these are in the form of cash which goes into my bank account every couple of weeks. These are PIP (Personal Independence Payment) and ESA (Employment and Support Allowance). The PIP occurs because of the stroke. The ESA (which is finite in length) occurs because I closed my company, which made me unemployed. Both were difficult to apply for, in the sense that the application form was very long for both. They advertise it as very easy to apply, you can do so by phone, but in reality the phone call is just a precursor to them sending a lengthy form out. All of this falls under the umbrella of the DWP, although when you speak to them, you get the impression that it is two different departments. If you do want to speak to them, be prepared for about an hour's wait on the phone - as far as I can tell this is pretty regardless of day or time of day.

I'm not sure about ESA, but PIP is granted on a points-based system, which is documented on the web, and which is worth understanding before applying.

I had no trouble at all in terms of being granted these benefits, no assessments whatever, although there seem to be a good few horror stories out there.

As regards local council benefits, the very first thing I applied for was a blue Disabled Parking badge, which we are allowed to use when I'm out in the car with my wife. This was immediately after I left hospital, a time which is very blurred in my mind - I know it was from the council but I have no recollection of the application process, it is likely that my wife filled the form out, and I just signed it. My impression, though, is that getting this first benefit was important in the council's eyes, since other council benefits have been straightforward once they know that I have a blue badge.

A second useful benefit, from the council, was a disabled bus pass. This is a little smartcard which, I think, is identical to a pensioner's pass. It is supposedly valid throughout the UK on local services (basically, valid on things like the No 1 bus, but not on things like National Express), although I've only used mine locally so far.

Probably also worth mentioning that I don't get any help with my Council Tax. Again, this is sorted through the local council, although this is means-tested. Our local council has a "what if" calculator, and the question that trumps all others is "Have you got more than £10k in savings?" If you answer "yes" to this question, then no help is available (they stress that this is not their call, but parliament's). On the "what if" calculator, I toyed around with this and tried a scenario where I didn't have any savings, and I would have got my Council Tax paid completely.

One last thing - not a benefit as such, more of a convenience now that mobility is limited - is a Postal Vote. Council again. Just means that if I ever need to go into hospital, for example, I can still vote. I was in for a few days at the Brexit referendum and got very miffed, firstly that I couldn't vote as intended, and secondly that jobsworth doctors didn't want me to leave the ward, even for a half-hour.

Friday, 21 April 2017

Me

I just happened to be digging this out for something else, and thought I could include it here:




It is obviously from my pre-stroke days, but only by a few years. I was a keen cyclist back then - I still have that shirt and it was an XS! It was taken on the Dutch island of Texel (I didn't cycle there, but I cycled while I was there), really close to a memorial (a mangled propeller) of a Lancaster bomber, which crashed there during the war.



https://www.google.co.uk/maps/@53.0730597,4.6430056,11z?hl=en

There are thousands more photos on my Flickr stream. although I don't bother much any more. I could blame this on the stroke, but that's not really true - there were several months between shots even before the stroke.

Wednesday, 19 April 2017

UK General Election (More)

This idea of opposition parties uniting and fielding a single pro-EU (or soft Brexit) candidate in each constituency is quite amusing, but I see two problems:

  1. Could the parties ever agree on a candidate?
  2. After you're elected, where do you go from there? I mean, fine, you do what you can over EU membership, but in  the background there is a country that needs running.

Tuesday, 18 April 2017

UK General Election

This announcement of a general election, the timing is interesting. Already, the Conservatives appear to be framing it as a Brexit "Let's get on with it" vote, which of course deflects attention from the cuts being made in public services. It will be interesting to see if this succeeds or not - I suspect given the largely-Tory media that it will.

It is funny, they have used this tactic before - as a facade that they are a party of low taxation - with people either not realizing that low taxes is code for reduced public services, or realizing it and willfully being complicit in it. And this in the face of data which showed that these middle-managers were no more competent at managing deficits than middle managers before or since.

I don't pretend that my own situation has changed my overall view, but my experience is that somebody spends their whole life contributing to the system, and then a single event happens which makes them glad that some kind of safety net exists. In my case, a ballpark estimate is that this event (the stroke) cost something like £20k, plus taxes that I never paid because I was convalescing rather than working (probably the same amount or more). I'd venture to suggest that, without support from public services, this would be beyond the means of many people.

Labour, or indeed any opposition party, will do well to focus people on these cuts rather than on Brexit. Back in the days when common sense ruled, Europe was rightly seen as a nothing more than single issue which divided parties.

As an aside, if this goes through, it makes a mockery of fixed-term parliaments. Perhaps this means that legislation which attempts to bind the hands of future parliaments is doomed to failure?

Incidentally, my main issue is that I would like to see parliament with as much democracy as possible. I don't really see this in the first-past-the-post system, so any party which wants my support would need to be committed to change this.

Friday, 14 April 2017

Starman

They played Starman on the radio yesterday, and I was reminded of that wonderful performance of Space Oddity on the International Space Station:


Thursday, 13 April 2017

Even more confused...

Following on briefly from the previous post, I have already mentioned my blood sugar values as I was admitted to hospital. I conveniently blame my stroke on diabetes - certainly I am far better controlled now than I was then - although my blood sugar values on admission don't really support this. I can only assume that a prolonged high blood sugar can account for this.

The other inconsistency, and I mentioned this to the nurse when she started accusing me of not having taken care of myself, is that I had been taking tablets for several years, both for my diabetes and for high blood pressure. Yet the first thing the doctors did when I arrived in hospital was to change my meds, to both insulin and new blood pressure drugs. So I feel it is only rational to say "You changed my drugs. Fine. But does that mean I was on the wrong drugs beforehand?"

I mean, my doctor was always a lovely chap, but I have to ask the question.

I hasten to add that I know the answer to these questions is "we'll never know", since we understand so little about the complexities that comprise the human body, and also the NHS's desire to look after its own. But a valid question nevertheless. One that shut this nurse up.

Confused

My memory of the time around my stroke is very confused. I chuckle when I see these FAST messages from the Stroke Association, because this certainly isn't consistent with my own experience.

I remember first feeling that something was wrong on a Sunday morning, as I got up. But we had arranged to go to the cinema that day - Dads Army! - and, beyond asking my wife to drive  because I was unsteady, carried on as normal. At the end of the film, I found it difficult to walk, and was lurching, looking for things to steady me all the while. But there was no pain in any of this - in fact there was no pain throughout the whole experience.

The next day, a Monday, my wife convinced me to go and see my doctor. He did some preliminary tests, then sent me to the local hospital. I remember he measured my sugar, and also remember that it was around 12. Not particularly low, but not excessively high either. Anyway, my wife drove me to the hospital, I saw a guy who did some tests, handed me a couple of pills, and sent me home.

I lasted until the following Wednesday, when there had been no improvement. Back to the doctor's surgery, back to the hospital. Along the way, mt doctor measured my sugar - still around 12, although I had hardly eaten anything in the past few days. This time, however, the hospital admitted me and it transpired that I'd had a stroke. There then followed a month or so in hospital, when for much of the time I had no use of my legs..

As regards dates, I have a memory of coming back from hospital on 11 March 2016. Backtracking, I know I was just about in hospital for Valentine's Day, so I assume that these events happened in the week leading up to it, so I was admitted on 10 February 2016. Unfortunately, I'm no longer in contact with the stroke consultant, so I'm not sure how I can check this, although I am back on the ward regularly (in fact, I was up there yesterday), I suppose I could ask them if I feel strongly enough about it.  And, to complicate matters further, I thought I was discharged on a Wednesday, but 11 March 2016 was a Friday.

Of course, not only is the stroke itself shrouded in mystery, but so too are the events immediately preceding it. I remember one of my last pre-stroke purchases was my Sony tablet, and looking at my emails, I see that this would have been in early February 2016 - I can see the order but have no record of the delivery..  But I remember struggling to configure it - including getting a SIM card for it - while I was in hospital. 

Imagine my surprise yesterday, when I received a letter saying that the 12-month subscription I took out last year had expired on 25 February 2017! I'm not disputing the subscription itself, but that date would put me firmly in a hospital bed! And this when I would have had very little technology on me, and even less desire to use it.

Murkier and murkier...

Friday, 7 April 2017

Laws of Average

Imagine you toss a coin. How much of the time would you expect it to show heads? Tails? About 50:50, right? How many times would you expect the coin to land on its side? Almost never?

Now imagine the situation with pills. Actually, you pop them out of the packet and it is surprising how often they land on their side. Especially when they're on a surface that isn't flat. They then proceed to roll away, sometimes right under the cushion or even under the sofa. Great fun!

Wednesday, 5 April 2017

Computer Woes

UPS have been and collection my laptop, after the touchpad started playing up. It was fine to move the cursor around, but wouldn't detect clicks. The thing is only a few months old, and a faff to swap a touchpad, so I sent it back to Dell. Let's hope they can change a touchpad without reformatting the hard drive!
So whilst I am connected to the Web, I'm struggling with my tablet and becoming a lot more familiar with Android apps than I ever thought I would.

Monday, 3 April 2017

Bipolar?

Life as a stroke survivor is full of variety.

This morning I was thinking about issues such as the sovereignty of Gibraltar. Probably the exact same issues as people like Theresa May had to work through (past, present or future tense!)

Then I have trouble getting my socks on!