Stroke Support Group

A message from 'bodger' (...and I thought Wheelie was a rough moniker!)

Led me to a very nice forum. Stroke Support Group is well written, easy reading, very helpful and informative, and a terribly friendly lot :) Well worth a look whether you are a Stroke Survivor, Carer, or just interested in finding out about Stroke, and peoples experiences of it.

Needless to say, I've signed up, and linked them on my sidebar. See you there :)

Note. You can often find me blithering on, on Twitter as @wheelieslug

I want to last for ever...

I have an aged motorcycle stored away. A Honda Super Dream 250 cc.

Hardly a Silver Dream machine :)

Basically, a brother who has since died found it another home, I negotiated it back.

My dream is to ride it again. Sadly, I'm not allowed to drive yet. The DVLA took my licence from me.

It's good to dream?

These are the days of....

Just like to point out I'm not paying for my rather nice smart-phone that I enthuse about. Someone else is. An equitable arrangement that allows me to broaden my scope, and helps them out some.

I'm not allowed out alone. Haven't been at least 12 years. It's not normally a problem.

Why? D'y'know. I'm not sure. Apparently, I'm told I womble off to look in shop windows while 'they'' are busy, so they miss buses, and they worry I'm going to wobble off into a busy road. I disagree, because I think I'm reasonably aware.

Certainly true that standing up is a problem, so I miss my wheels. Trouble is that I live in a VERY hilly area, which makes using a wheelchair next to impossible for a carer to push.

~~~~

Meanwhile, it's 26 C inside, and 32 C outside. Bear and visitors are in our respective neighbours gardens. The smell of beef fat and petrol drifting through the window? Eurgh.

If like me, the smell puts you off holding a 'barbie' here's a tip. If one must use a 'starter fuel' then once started, let it burn for half-an-hour first. More, try asparagus, fish in foil with herbs, even baked veg (Cheat. If you have a microwave, start it off in there..)

Makes one heck of a difference :)

Travelin' light...

If you'll excuse me, while I get the Rubettes singing "Sugar Baby Love" out of my head.....

Mmmm. Much better. I can hear myself think now :)

Totally fascinated by my new phone.

Took a wobble to the shop last night with The Bear. Ignoring her cry of "Put the bloody flags out!", I took the opportunity to try out an app that tracks altitude, time, speed, distance, draws a path that's shown on Google maps on the phone, and then syncs it with My Maps online so it can be followed on street view on the pc and phone.

Interesting, and very, very, creepy. It seems we travelled for 36.44 mins at an average speed of 0.89 mph over a 1.15 miles, there and back. Hmm - those maths seem slightly squiffy....

She claims she can do the round trip in 15 mins. 4.6 mph. Good. She can give me a piggy-back next time. Hey ho, Tonto, away!

Needless to say that despite frequent stops, I was totally knackered. As I discovered when I dropped a pencil, and unthinkingly bent to pick it up. I spent ten minutes stood, with the top of my head on the floor. Mainly because my mob couldn't stop laughing. Ho. Ho....

I was about to disagree with Googles 'My Tracks' app that, according to the path-plot, I ended up being in a Wheelie Bin outside the shop. But The Bear said "Sounds about right..."

Oh, I geddit.

Wheelie Bin. Ho. Ho. Ho....

~~~~

By the way, did you hear about that bloke who reached for his Viagra, picked up a bottle of Tippex by mistake, and got an enormous correction?

I'm gone. I'm outta here.

Humbled

Just as I'm thinking of letting go and allow myself feel down....

Bear nipped out for an extended shopping trip.

Neighbour popped around, apparently having noticed, and wanted to know if I was ok for anything. Then another, and another, and another. Come on, I said, "Bear asked you to?". Now my ears have stopped ringing, I believe 'em.

I should explain that around here people aren't backwards at coming forwards. Say what they think, mean what they say, very expressive, (ahum) and don't mess around.

"Dray" a lady from a few doors away said "We look after our own around here".

I'm deeply touched.

Bear with me....

I do get into some odd conversations (shakes head in wonder).

"Bumped into (so-and-so) today, they tell me you've....." Er hang on, before you go any further, I've not seen them for over six-months. "Really?" Really. "Oh. Are you quite sure because they said.." Don't tell me, I don't need to know. Haven't seen them for over six months. "Oh dear"

~~~~

A couple of days later, chatting to someone else.

"I was told you've lost your benefits?" Nope. "Aw come on, they're here every day, surely they'd know?" Who zat then?. .

Brief silence. They told you themselves? "No, they said they were told by someone who visits every day to help out" Hmm. They moved out of Sheffield some weeks ago. "Ah?". Only ever saw them, what, every couple of months? "Eh?". Correct. Eh indeed.

"What about your other daily visitor?" I don't have any. Who are you thinking of? They give me a name. "Don't have any? Sure you do, they..." I see THEM every six weeks to a month. I reached across my desk to my daily journal, and vaguely waved it at them. Show you if you like?

"But they're around here helping out almost every day aren't they?" Nope. Check with Bear and Tots, Square and Lissy if you like.

I had to feel sorry for the look of bewilderment on their face. I had begun to wonder if they were on a 'fishing' expedition.

"So you're calling them a liar then?"

It was a statement without malice. No, I'm not calling anyone anything. I'm simply saying the information you have been given is incorrect. I have not lost any benefits, and I have no daily visitors, and if I need help, I have Bear. If Bear isn't available, I have elder daughter, and in emergencies, I have an agency I can ring.

I don't know anyone who would help out around here for free. Heck, even Bear gets paid a tiny amount (£25 for 35 hours a week min, day and night - 71 pence an hour ).

That conversation wound up pretty rapidly.

~~~~

Few days later......

"Thought I'd pop round as I was on my way past. See you got another doctors appointment?" I'd left that plastic bag thingy on the table.

Oh yes :) "More blood tests?" Yup. "They're taking a Carly sample then, ha ha!"

Puddin? "Way, you do get through a lot"

I do?
"Nowt wrong with a drink Wheelie" Not saying there is. But I get through what?

"I'm told it's six cans of Carly Special a day"

Indeed! I have enough trouble standing up. "Got to admit I've never seen you drunk"

You won't. Never been drunk. Never had a hangover. Have to up at 5:30 am every day. "Eh? No offence meant, nowt wrong with a few cans. I was just told..."

Soz, you were told wrong. I'd be dead in days if I did that. "But there's always a Fosters in the fridge?"

Bears. Likes a lager Shandy now and again. Can't stand the stuff myself. So, who's told you that?

"Someone who's round here nearly every day" Who? (thought to myself - here we go again...)

Look, I said, don't bother, it doesn't matter who. I have people who pop in now and again for a few mins, like yourself. I've neighbours who nip round for a chat sometimes, friends who visit about once a month or two, and we might chill with a couple of cans. And phone calls of course.

I have no one who visits every day. Bear is my primary carer. So can can you tell this person that claims to be here that often, that claims to have in depth knowledge of me, to take a long walk off a short plank? And if they have a problem with that, I'd appreciate a long chat with them?

"No probs Wheelie. Will do. Soz. No offence meant"

I've since heard something similar from two other sources.

~~~~

What's my point?

Point is I'm well angry.

Within a week, I've discovered there's a mystery someone 'out there' who claims to be with me most days to "help out". Who claims I've recently lost my DLA.

Who also claims I drink six cans of of Carlsberg Special Brew a day. That'd effectively make me an alchoholic!

I'd have to be a bloomin' rich one. A bit of research shows that it retails locally at £1.85 a can. That'd be £11.10 a day, or £333 per month, or a massive £4,051 a year.

Lets put that in perspective. It's no secret I receive DLA for care (See HERE). So the claim is that I spend my care allowance and more, on strong booze, NOT on care, while they help with my care freely.

More, the implication is, looking at the alcohol I'm alleged to consume, that I 'used to' receive Care Benefits because of the results of alcohol abuse. All complete unmitigated cobblers.

Unfortunately, I know where this is going.

I keep track of the tabloid headlines about people with alcohol and drug dependence issues receiving care benefits, read campaign blogs and help forums for distressed DLA claimants, and the - and here's that word again - implication- by the present government that those on DLA and ESA are 'scroungers', and the draconian measures already being implemented.

I fear, that there are those who read newspapers and get together and gossip without applying intelligence to disguise their own sad circumstances.

In a nutshell, I don't think I've heard the last of this. When I'm done being brassed off, I'll post something a bit more impartial. With more links.

Until then, for the record, No. Just no. All cobblers. Everything is hunky-dory thank you.

I know. Welcome to the real world Wheelie :(

Whatever you do..

Don't sprinkle a pinch of black pepper on something, and a few minutes later unthinkingly stick your finger up your nose. Just don't do it. And don't do it at 5:30 am. It frightens the heck out of the neighbours....

~~~~~

Well, the battle lines are drawn. In the nicest possible way :)

As I've mentioned in previous posts, I'm on a diet. I have to lose about a stone (14/15 lb - 7 Kilo's) Not calorie controlled. I have to get more B12 into my system, and there's nothing sensible that'd allow me to do both.

So it's The Wheelie Diet. Eat when I feel like it (not very often) lots of steamed veg, delicate sauces, fish, shell fish when I can get it, half-lean-meat, but no high carbs like shop bought bread, pasta (yuk!) Rice (wubble yuk!).

And definitely, absolutely. No Potatoes.

My Bear has spent years trying one diet or another. I dunno why. Now she hates them with a vengeance. So what do I get?

"I've saved you some Potatoes.." No ta. "Why not?" Don't do them. "You've got to eat something" Yes'm. "Sausages?" No dear. How about some salad? "Every shop around here has run out" Of what, I said, attempting to look quizzical - it's the eyebrow bit. I look like an old Cadburies advert.

"We have some tatties?" Yes dear. Sigh. "A nice big baked one? Oven, not microwave" No dear. "You can have a larger with it." On it? "No you bloody idiot." Damn. "Potato salad?" What salad?

Goes quiet.

I see her examining her feet with great interest. Uh, ho.

"Mashed?" No. "Boiled?" No. "Au Gratin?". Good grief. "Chips?".

Bear, does it involve sacrificing virgins and dancing naked around our Willow? "Don't talk wet, smart-arse."

The diet remains tatty free :)

Dr. Who, Bacon, and rock and roll

My lad visited today.

He doesn't live so far away, but it I can't catch a bus there, and he's just too far for me to walk. Add to that he's worked for a major high street bank for some years, in a minor role, and works lots of overtime to keep his financial head above water, means I don't see him too often nowadays.

Heck, I've missed him. Sorry ladies, but as nice as it is to have a wife and daughters, beloved as they are, one has a special relationship with the only other fella you've brought up. Even though the family joke is that we had two daughters and the SquareHead :)

If you read in the papers how easy it is for non EU people to get into the UK, I can tell you from personal experience, that actually, it's a nightmare. My lads wife and daughter are American. He's - well, we - are trying to get her across here. Bear openly admits she's obsessed with it. Understandable. She wants to see her grand daughter.

But the expense - it runs into thousands, and the hoops the American citizens have to jump through are incredible. So don't believe the rhetoric.

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An odd mix of old and new today. The new? Finally getting around to actually utilising the best of the technology we have. Now, I'm a bit of a computer freak. So I've bought up bits of old systems to construct working computers for years - didn't pay much, just a few pounds for bits people would casually throw away. I bought Bear a little netbook some years ago which surprised me by still trundling along.

To help my lad out, I gave him the money to get away from a rather dodgy private house to a new, rather nice landlord who plays by the rules. In return, he got me a bang up-to-date smartphone.

As a result, because I insist on watching James May Toy Stories on it in bed - gosh, what you can do with those things! - she's realised she can catch up with Dr. Who. In Bed. Yes. We're THAT age (Chuckle!)

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The Old? Diggin' through the fridge - what can I say? I hate waste - and with a rather sad looking bit of left over rocket, some young dandelion (yes, dandies) carrot, potatoes, some dubious tomatoes, lots of garden herbs, Hendersons relish - non of that Worster sauce rubbish, and god fobid an Oxo chicken cube, some chilli flakes, and something I can't quite identify.....Oh, and a couple of rashes of home-made bacon?

Cooked gently for an hour, wizzy-wigged, Bliss. Home made soup. Voilá :)

By the way, If anyone wants to know how to make their own bacon, I'll gladly post a how-to. A quick and easy method. It isn't much cheaper, and it won't be pink and pretty, but you can flavour it how you want it, and cut it as thick as you like.

Couple of disability sites that are worth a read.

Stroke Association UK Talk stroke. You'll find me there as Dray :) You'll can read no probs, to contribute you need to set up a user name and a password. Feel free to ask any questions you want.

Bendygirl - a disability rights campaigner.

You'll also find me a @wheelieslug on twitter, and bendy @Bendygirl

Particularly useful if you want to explore disability issues. All people with physical and mental disadvantages are going face financial squeezes by 2013. April, to be exact. It promises to be interesting. I was going to say that had already started for people on employment service allowance, ESA, the old incapacity benefit, when I heard of a friend with top Rate DLA care, and top Rate Mobility - which takes some getting, losing the lot.

Disability allowance is not means tested - you can work full time and have it.

Because she doesn't fill the new criteria, she's lost it. People on disability forums keep falling out with me about this - but the new call-in under the coalition are not administered by medically qualified personal. As their finding out.

I'm tired. I'll provide a link later. Bless you. Feel free to remind me...

Being a Stroke Survivor, Part 1. Of maybe 3

Had a bit of a problem lately with blatant disability prejudice. Unfortunately, it's been from it's from some who really should know better. They should know better because I'm not one to be understanding to those who've known me for years.

Which is why my friends of many years know who I am, what I am, how blunt I can be, and how unapologetic I can be be. What you see is what you get. I realise that sounds awful, but it isn't. It works. It's a bit like winning the lottery in reverse. You quickly find out who your friends are.

How do you expect a multiple stroke survivor to look? Or act? Perhaps paralysis down one side? Yep, have that, to a degree. For some of us, with a lot of hard work, it can be gradually overcome.

Drooping mouth? Yup. Though its never been a big problem. I tend to dribble, and drop my food on my lap because my coordination is rubbish. I have a square cup, bone china, because it's easier to drink from a corner. I have a little trouble swallowing, so when I do eat (I never feel hungry), family won't let me eat alone.

Walking difficulties? Hell yes. I need support. Could I use a crutch or walking stick? Waste of space. I don't mind wobbling around for a little while. I do have them tho'

Think about it. If one side of your body doesn't behave, in my case, the right side, then the walking stick, to support ones right leg, needs to be supported by ones right hand. Which is cool for a short while, in my case.

I won't go on about the incontinence.

But here's the Biggie. Can stroke affect your intellect? Sometimes, yes. It's a hard one, because only those who know you, know if you are any different than the way you were before. You may not know yourself that you are any different, or to what degree. But you should be aware of the possibility.

I'll leave it there for now :) But I'll tell you the hardest part. Being 'different'.

Overheard tonight.

"I'm sure he's more capable than he 'makes out' he is.


Oh my :(

Take-away leaflet that just came through our door.

So, cows eat grass, and so, vegetarians can eat cows?

To quote a Yorkshire phrase "That'll knock their duck off".

Screwed

Nice to read that a team targeting illegal money lenders in Wales has relieved people of £900, 000 in debt.

The IMLU has identified 1700 people since it was set up, and prosecuted at least 32 people.

Tho' not in the least accurate, that's at least £170 person loaned to those that can least afford to pay back. Or looking at the arrest record, £28,125 per lender. Well, hang on, where's the connection between £170 and £28 grand?

Easy. The outrages and extortionate and incredible interest rates that leave the victims permanently in debt. Borrow £170 and owe thousands - yep, entirely possible.

It's the tip of an iceburg. It's certainly a great deal more, and counting the suppliers of illegal cigarettes, booze, blow, skunk, and other substances that people get and have to 'pay back later with interest' Invariably, they target those on low incomes.

But don't be fooled that it's people with addictions or on benefits. I've battled 'lenders' who have pulled in people in mortgage arrears, catalogue and 'club' debts, so-called health clubs - including part owned council facilities. If you want to use a leisure centre, with all that fantastic equipment? Check your contract. You may be hit with a hefty bill if you don't go for a couple of weeks, and have to pay for the whole year.

Catchya