Life in the past 18 months

If you were following this blog back in 2014/5 I may have seemed to disappear.  Well, in a way I did.  We had brought my dad back to the UK because he wasn't feeding himself and then we moved home, only five miles away, but the changes in our lives meant I put the thoughts of blogging away.

In the time since we last met, I have begun a course at my church, the Catholic Certificate in Religious Studies, it's thought provoking and I am learning more about my religion than I ever knew!  Also, my dad had a stroke!

The "Awesome Turtle" moniker should pass to my Granddaughter, eight years old and autistic, she reacted marvellously when she found him on the floor in his bedroom the morning after his 87th birthday. The only drawback, she's not a Turtle.

We've had a referendum to show that 51.8% of the country either didn't want to be part of the EU or believed the lies, half-truths and scaremongering that the Leave Campaign spouted.  We've had the Prime Minister resign and, the new PM, who said when Tony Blair resigned that there should be an election, go back on that thought.

At the time of writing this, we have a challenge to the leadership of the Labour Party, and now the front runner in the challenge has stepped down, what next?  Watch this space, or one near here!

Disability goes the wrong way!

Before you get confused by the title, I emphasise here, that it is semi-sarcastic and I ask you to consider the ways that it can be read!

Now, what am I going on about today? This Guardian article.  Basically, a blind lady was challenged for bringing a guide dog into a Tesco store.

So, let us look at the elements:

A visually challenged lady,
A dog in a harness and
A mature student.

Oh, hang on, should that read:

A visually challenged lady,
A dog in a harness and
A mature student who is registered as blind!

We, in this country, are not necessarily taught the fact that a dog wearing a harness with a metal handle is helping the person attached to it.  Although, somehow, we all learn it.



The image is enough, we don't need the new(ish) style lead with the words "GUIDE DOG" on a bright yellow flag!  This is a Guide Dog, this dog will be attached to a person with extremely poor or no sight.  This is NOT a pet, this is NOT a family dog, this is a WORKING dog, this is a dog that will not do something to endanger the health of other shoppers.

Tesco's insulting voucher is not enough.  Tesco's management should grab the cashier by the scruff of the neck, frog-marched to Ms Makri's front door and made to get down on her knees and give an apology that includes her resignation.  

I wonder where this (hopefully former) cashier is from.  Obviously a country where the blind are hidden from view, where disabled are kept in institutions, a country where the disabled are not acknowledged.

Or, is this cashier actually visually impaired, and as such is she able to perform her duties?  Is the disability held by the one behind the counter, not in front? Is discrimination of the disabled not a disability in itself?  After all, the discriminator is not able to see that the person is human?  They have the disability!

30 Things About My Invisible Illness You May Not Know

 

Some prominent bloggers were asked to participate in this simple blog post meme to help spread awareness during Invisible Awareness Week (September 11-18th)

I'm not one of these prominent people, however, I think it is important to share these as there is still so much even my closest friends and family do not know.

1. The illness I live with is: Osteoarthritis.  OK lots of people have OA, and it affects one or two joints, mine is spreading.  For those that don't know, OA is a condition that affects your joints. The surfaces within your joints become damaged so the joint doesn't move as smoothly as it should.  This causes pain, in some cases, like mine, the pain is constant.

2. I was diagnosed with it in the year: I was diagnosed in 1994, I think, after a motorcycle accident had started my right knee aching.

3. But I had symptoms since: I can't really remember when symptoms started. I was often tired, or had aches and pains etc which at the time I did not know were symptoms.

4. The biggest adjustment I’ve had to make is: learning to adjust to my limits and having to help others less as I have to take care of myself.

5. Most people assume: that I am a happy, upbeat person because that's how I always was.  When my knee first dislocated in 1980, I emptied a half hour bottle of Entonox (NO2) in 12 minutes!  In the half hour to get to the hospital, I emptied two more.  But I was joking all the time.  

I try to look at the funny side to avoid looking at the down side, but, remember the song "Tears of a Clown"?

6. The hardest part about mornings are: simply getting moving at first.  I am achy and very tired, as I normally don't get to sleep until 2/3 a.m.  It would be easy to just go back to bed, but normally the wife wants me to pick her up or take her somewhere. 

7. My favorite medical TV show is: House of course!  I just wish there were doctors like him and his team in the UK to sort people out!

8. A gadget I couldn’t live without is: It's a toss-up between my battery operated can opener or the laptop.  The can opener means I can get at food, the laptop, allows me to order groceries for delivery, but also keep in touch with family and friends.

9. The hardest part about nights are: The excruciating agony in my knees keeping me awake, to such an extent that pain killers don't touch it.  The fact that the late nights in pain, in tears, means that my body then needs longer in the morning to wake up and the fact that people think, oh, if you're going to sleep so much later, go to sleep earlier! 

10. Each day I take 15 pills & but no vitamins as yet.  (No comments, please)

11. Regarding alternative treatments I: I know homeopathy works, I've seen it with my children and teething stuff my ex-father-in-law (a homeopathist) gave us for them.  I would love to find something that helps with the muscle spasms, the pain, the weakness.

12. If I had to choose between an invisible illness or visible I would choose: I would really like to be able to choose a third option - neither!  The invisible illnesses and disabilities in the world need more understanding from those around us.  Compassion is easy for people when they see someone with an amputated or deformed limb, but when the problems are hidden, understanding of the problem is difficult.

13. Regarding working and career: I wish!  I had the awful "turn down" at a few job interviews in the past of "You are a fire risk! We can't have you work for you because if there was a fire, we couldn't risk you falling down the stairs and blocking them!"  

14. People would be surprised to know: That I often wish I could curl up in a corner and let the rest of the world go to heck.  I often feel like I want to give up, but I have three gorgeous grand-daughters that I can't let down.

15. The hardest thing to accept about my new reality has been: The lack of energy.  The constant pain tires you out, so you need to pace yourself through the day.  You have to use trains to travel to places that used to be a car drive away.

16. Something I never thought I could do with my illness that I did was: That's the problem, Osteoarthritis is not a young person's illness, so older people have it, not me!  I don't know anything that I'm not supposed to be able to do.

17. The commercials about my illness: There are no commercials for Osteoarthritis, it is still a very misunderstood illness (by most people). The journey of awareness has begun but there is a long way to go for a cure.

18. Something I really miss doing since I was diagnosed is: Hiking across our local Country Park, bird watching and enjoying nature.

19. It was really hard to have to give up: My independent nature, if I fall, if I can't stand up, the need for help to get up.

20. A new hobby I have taken up since my diagnosis is: There isn't anything really, I would like to try several ideas, but they all need fine motor skills with the fingers and I'm losing that.

21. If I could have one day of feeling normal again I would: Take my grand-daughters out across the "Firehills" between Hastings and Rye, showing them all the hidden things, both flora and fauna.

22. My illness has taught me: People prefer things they can see, even if they still don't understand them.  Jonny Peacock is accepted as he has no feet, Tony Turtle is OK because he has all his bits!

23. Want to know a secret? One thing people say that gets under my skin is: "You don't know what real pain is!"  Sorry? 24/7/365!  I know what pain is!

24. But I love it when people: When people put their arm about me, even though it hurts and says, "I wish I could take the pain away" (even better when the name "Gumpy", my grand-daughter's name for me, is included)

25. My favourite motto, scripture, quote that gets me through tough times is: God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.  

26. When someone is diagnosed I’d like to tell them: It is tough, it may get worse, but the people that love you will be shown up by staying with you.

27. Something that has surprised me about living with an illness is: The fact that people don't seem to care if they can't see something wrong.

28. The nicest thing someone did for me when I wasn’t feeling well was: Having my daughter who has ME (CFS) get dressed, put the kids in the car and brought them to visit.

29. I’m involved with Invisible Illness Week because: The world needs to realise that it's not just the people with Invisible Illnesses that realise there is such a thing as Invisible Illness.

30. The fact that you read this list makes me feel: Hopeful that more people will understand about Invisible Illness.

For more in my blog about all sorts of stuff: http://aturtle05.blogspot.com/2014/09/30-things-about-my-invisible-illness.html

Taking over quietly.

I can't remember if I've mentioned this before, but if I have, I apologise, still, here goes.

From my point of view, this reared it's ugly head about ten years ago when coming back into the country via Gatwick airport.  

Picture the scene: it's about four o'clock in the morning and my wife and I have been up all day and night, it was a late night flight to save money and thanks to a delay.  So, we have about two hours before a train arrives to take us home, so I think "Coffee time"!

I toddled over to the coffee bar (who I won't mention as this is the only problem I have had with them), and through my sleep filled brain, I asked the "barista" for two white coffees.  Remember, this is in the days when you asked for a white coffee and got served with the establishments version of coffee with milk.

"Er, we don't do white coffee, only Americano, Latte or Cappucino", says the girl behind the bar.

"It's four a.m., I just want two cups of white coffee!"

"We don't do white coffee, only Americano, Latte or Cappucino", says the brain of Britain.

"Listen, in France, I'd ask for Café au Lait, in Spain, Café con Leche, in England I ask for a White Coffee or Coffee with milk!  Two, please!"

"We don't do white coffee, only Americano, Latte or Cappucino", says her again.

I gave up, scanned the menu board and requested, "Oh, heck, two hot chocolates please!" 

So the young mademoiselle turns to her colleague "Two hot chocolates"

While waiting, my eyes alighted on the cake display - "May I have two almond slices as well please?"

"Those have got nuts in them, you know" 

"Yeah, I think the idea's in the title, dear", she pulled two almond slices out of the display and then her colleague passes the hot chocolates over.

"Do you want chocolate on those?" says the young lady, holding a shaker of chocolate.

"I'm sorry?"

"Do you want chocolate on those?"

"Listen, sweetheart," says I, sympathetically, "there's chocolate in the cup, if there isn't enough chocolate in the cup why would I want more?"

So she capped the cups, took my money and I went back to my wife.  

So, the point -  it's not that some people are less intelligent than required, it's the principle of going to a coffee shop in England and having to ask for my coffee in a foreign language!  As I said to the young lady so long ago, if I'm abroad, I'll ask for coffee in the local language.

We're losing our identity.

But it's the thin edge of the wedge.

Look at the Ciabbata or Panini that you are going to eat with the coffee, even though I am the first to agree that it's the bread style that goes with those that names them.  But the coffee,  a white coffee, not Latte or Espresso or Americano or Cappucino is what I want.

Here goes for the Indignity!

Coming to a computer screen near you, the final degrading step that a person who is already ground down by the benefits system in the UK has to undergo.  

I have been poked, prodded, lied about, forced to travel near enough 200 miles to fight my case and now I'm called for a Work Focussed Interview.  This is an interview that will most probably be carried out between me and a twenty-something slip of a girl (or man) who has had one job in their life, other than a paper-round while still at school.  

The idea of this interview is to tell me that I should be doing this, that and the other to find a job where the employer will not employ me, or if they do, they will most probably ask me to leave after a week because of my disability.  I mean, what employer wants an employee that has trouble concentrating in the morning and has trouble staying awake in the afternoon, needs to get out of a normal chair after about 15-20 minutes to loosen his knee joints, can hardly climb stairs (and so is a fire hazard), cannot lift his hands above his head and cannot stand for more than a few minutes.  

Yet this is the indignity I have to face on Tuesday.  I have to pray that I can park near the DWP office on the other side of town and that they do not want me to go upstairs to an interview room.  On top of all this, I have to hope that I do not do, or say, the wrong thing and have the DWP "sanction" me.  For those outside the UK, this is where the Department for Works and Pensions arbitrarily decide that I have breached their rules and stop all of my benefits.  Not some of my benefits, we are talking, for a first offence (supposedly), all of my benefits.  This will mean that my wife and I will have no money for food, heating or light, but we will owe our landlord £200 for the two weeks of rent that will not be paid, if not more if the council do not restart the payments after the fortnight.

The standard working period for the DWP is a fortnight, as, in the past, unemployed people had to sign on for their benefit and then get paid this often.  This is not a problem for the clerks in their centrally heated offices who can mark off two weeks on a calendar easily enough.  For businesses and banks this is unworkable.  It seems that direct debits and the like can only be paid monthly, that is, on the same date every month, days do not come into it unless the 14th falls on a weekend, in which case it used to be paid on the Monday following.

Now, I think to normal people, the problem will be becoming obvious, some months have five weeks in them, in fact, the only month that is an exact four week period is a non-leap year February.  So, although the 14th of January is on a Tuesday this year, it is not an even number of weeks from the 14th of February, and so on and so on.  This means that budgeting on benefits is an amazing feat of accounting, and if the Chancellor of the Exchequer needed to do it, he would fail unless, as he does, he had a large bank balance in the black.

So, the Minister for Works and Pensions has decided to bring in a system whereby benefits claimants will be paid monthly.  It has already cost £50M of lost money already to prepare the system to do it, but it doesn't work.  So will future sanctions be for a minimum of a month?

The government, which, yet again, has been caught in a PR lie, is trying to pull the wool over the eyes of the public by making every claimant guilty of "shirking" and cheating the system by use of the media.  This government by Upper Class Twits who only have the needs of themselves and their own classmates from Public School or University in mind.  These cheats who started by preventing themselves being voted out in the first days of their filling the seats of power with a bunch of sycophantic cronies who are all filling jobs for which they have little or any qualification for.  

The people are getting fed up with the austerity package they are being forced to undergo - pay rises capped to 1% while MPs vote themselves a massive pay rise; high paid people get tax cuts in their favour; power companies raise prices by 3% and train companies raise fares by 6%.  There will come a time when the people can take no more hypocrisy.

Poetry Day UK

Today is #PoetryDayUK apparently, and my friends that tweet on behalf of WoWPetition suggested a WoW Petition Poetry book.  Good idea, if it gets people using poetry.

Poetry is a much maligned form of communication, it takes a lot of thought and a fair smattering of vocabulary.  It can't take a lot of brains as Rappers do it (sorry Rappers).

So I thought I'd better get started, and, as a fair shot, I decided to blog a one-hit poem about disability.  I promise you the poem below came out in one go, no editing and re-editing like I have the first few paragraphs! Oh, I will come back and add a title, the poem will suggest it.

Hidden Pain

It can't be seen or measured up,
It can't be cured with a click,
It can't be fixed by a suture's stitch
Or by visiting a local witch.

The government think it really simple,
You can see it like a dimple.
Pain comes upon a simple scale
Like a colour dark or pale.

Now think real hard just for me
About some pain that used to be
Now on a scale of one to ten
Say how it hurt and when?

So if I walk for twenty yards
Tomorrow's pain is on the cards
But I can do it so you see,
DLA is not for me!

Getting Ground Down By The System

Quick recap for those of you who may not know me:

I am 50 years old, I have been suffering with a dislocating knee cap and arthritis in my right knee until 2009 when they replaced the knee joint.  This has now put the weight off the left leg which is now suffering from an arthritic condition.  The arthritis now affects my arms so I can hardly scratch my own head, I am stuck in my basement and ground floor maisonette with only my car to get me about outside.

The DWP decided last year to reassess me for ESA, and sent out their 21 page form the ESA50.  Half way through is a question that I misunderstood and that got me into BIG trouble.  First off, in concert with the French Data Processing company ATOS, they based a decision on a report with a minimum of 21 errors and my stupid error and said I am fit for work.

Then the DWP set a person, who to my knowledge has done nothing in their life other than work for the DWP and has no medical knowledge, to look at my Disability Living Allowance.  Based on the report with a minimum of 21 errors and my stupid error they said I am not eligible for DLA.

I do a voluntary job on Tuesdays, on Wednesday I am in bed until about 11am trying to get moving as I am so stiff and painful.  Many nights, I don't get to sleep because I am in pain until 2 am, but do they care about that?  No.

So, as you would, I put in an appeal against the decision to class me as fit for work as far as ESA is concerned, when the decision about the DLA came through, I appealed against that.

Now, twelve months after the so called Work Capability Assessment, I have not yet had my appeal for ESA heard, but the Tribunal Service have drawn a line under my DLA appeal - Not Approved. Basically, Mr Turtle, you have had two 36 mile round trips two towns over on the South Coast and had to climb a massive flight of stairs at the hotel that the tribunal was held at, all for nothing!!!

So I had a quick chat with the DWP representative about what to do, his answer, Shut Up and Put Up, until the ESA Appeal is heard, they may give you points and you can appeal your DLA again!

Alright for him to say, he doesn't realise what I am facing. He doesn't realise what I am about to lose.

Unless I can find a way round it, I will lose my car, therefore, I will lose my mobility, therefore I will be trapped inside this house with no way to get out and about, therefore I will lose my voluntary job, therefore I will have nothing to keep my mind occupied, therefore I will lose my sanity!  But I'm FIT FOR WORK!

There's the good news, I can get a job that allows me to move about when I stiffen up, will allow me twice the time of a "normal" person to walk down the corridor to the photocopier/break room etc. and allow me to be taking close to an overdose on Tramadol.  Then, on the day after I get into work, they will allow me a day off to recover from the first day, so, possibly, I could work Mondays, Wednesdays and Fridays.  So does anyone know anywhere that will pay me five days pay for a three day week? (Apart from being an MP)

I just wish there was some way of temporarily inflicting the pain I feel, the fuzzy head making me question everything I do, the feeling of "have I remembered to do all I had to do", on some one so that they can understand what I am going through.  The frustration I feel when I reach for something in a cupboard that I can no longer reach, and it's only just above eye-level.  The anger that I cannot keep up with my wife or grandchildren when we are out and about.  The way I scream inside my own head at night, so tired I can hardly keep my eyes open, but the pain is so great that I cannot get off to sleep. The useless feeling I get when the weight of my laptop sends needles of pain through my knees and I have to put a tray on a cushion on my lap with the laptop on to ease it.

So here am I, wondering if I have the internal strength to carry on, wondering why everything is mounting up against me, wondering why my MP is such an uncaring sheep she follows the lies and mistruths that the Prime Minister and his cabinet keep spouting without question.  Why do all these politicians listen to the lies that are spouted and don't question them I do not understand.

It's a simple thing to go on-line and check on the lies that the government are spouting, it's easy to spot when David Cameron is lying, it's when he's talking about caring, "Being in this together", or benefit claimants in general.  I am still looking for the proof of "The test of a good society is you look after the elderly, the frail, the vulnerable, the poorest in our society. And that test is even more important in difficult times, when difficult decisions have to be taken, than it is in better times." as said by David Cameron on the Andrew Marr Show on 2nd May 2010.  Three years later and we're getting to see that his society is a BAD one.

Another week has gone by - thank God!

If I have any regular readers, you will note that I have been less forthcoming with my comments lately.  There's a very good reason for this, or as I would have typed a week ago " h   's a      good  eason fo   his", basically, the old laptop had a keyboard explosion, 8 keys had lost their buttons.  I struggled on, even to the length of borrowing a plug-in keyboard, but, have you tried using a keyboard on top of a keyboard?

So, when MrsT's laptop decided to start issuing blue smoke, I went a-begging of the paternal parent.  Two laptops later and we're back on-line.

So now I have to try and get used to, not just a new keyboard layout, but a new operating system, Windows 8!  So far, I have only found use for one or two things on the so-called "Metro" screen, the Google shortcut I added is weird, the twitter and facebook shortcuts are so "Retro", I feel as if it were back in the first few months of facebook going global.

Internet Explorer 10 keeps crashing, and I thought they would have had the glitches sorted already!  So, the most used shortcut from the "Metro" screen is the "Desktop".  But those users of the earlier Windows system will know and love the "Start" Button, the first point of call for closing the computer down, has gone! Still, Microsoft have given a simple way of turning off the computer from any screen.

Half of my programs that I used to use are 32 bit, so won't run on a 64 bit machine!  Why MS didn't allow for this beggars belief.  We're in a global recession, not enough time for the Software houses to get their act in gear to provide 64 bit versions of all their systems and not enough money to buy it if they had!

Still "Nil carborundum illegittimi" as the pig Latin phrase goes.

So, we have the ultimate in sporting weekends, mid-way through (yawn) Wimbledon, the British Grand Prix of Formula One Motor-Racing, the second Rugby test for the British Lions and the start of the Tour de France.  I'm surprised the Cricket world hasn't got a big match on!

With a little bit of a fight for the remote, I got the TV onto the start of the cycling and the Mrs sitting there on her sofa looks up and says "Ooh, is that an easyJet team?", "No dear," I said trying not to be too patronising as all the participants in her choice all wear all white, "that's the Basque cycling team sponsored by a phone company, Euskatel-Euskadi!"

Pity that the Basques are so proud of their region that they won't let an airline that doesn't serve their area aid sponsoring their cycling team.  Or Blogger, the people that host this blog, their "corporate" colour is orange too.

Cycling is a strange sport, the female of the species is as fierce as the male, we saw that last year at the Olympic Games.  If we're lucky we see it if ITV4 show the National Championships as they did last week.  It's a heck of a sport, and you have to be an amazingly fit person to do it, my hat is off to every sport cyclist.

It amazes me when footballers scream for millions of pounds wages per year when they will play two or three matches a week.  The 198 cyclists facing the 3,404 kilometres (2115mi 259.65yd) over the next 23 days with only two days rest and will be in the saddle for about 90 hours.  Each stage (other than the time trials) will be about 200km (124.274miles) long and at the end of seven of them there will be (hopefully) a sprint finish with speeds reaching 60 km/h (38 mph) on the flat, on a pushbike!!!

I know I ask many people to appreciate what it's like for disabled people, but can you imagine riding a bicycle for six hours and then being able to push it to nearly forty miles an hour?  After driving that distance, I want to lie down and have a rest, (OK at the moment, I want to do that after 20 minutes), but when I was younger and fitter, I would have.

So, what's the rest of what's happening? I'm still preparing for round two of my DLA appeal, I'm still waiting for the ESA appeal and it's now a year since the Atos Assessment. 

Life, the Pain and the Medication!

As a follower of the Diary of a Benefit Scrounger - Sue Marsh's views on life I read with a growing awareness that her blog And Drugs Don't Work They Just Make Things Worse mirrored my life. 

I am fairly fortunate that my GP understands how much I respect the lack of control that some medication gives, the fact that some of the medication he has me on is OK for some parts of my life, but doesn't quite help out at the times I need it to.  Yes, my GP has agreed to let me control some of my medication with the clear knowledge and understanding that I do respect the maximum daily dose. 

Through this, I have now been able to adapt my medication levels to the extent that I can manage to cope with my voluntary job on a Tuesday. This is a good thing.

The negative side to being able to cope with Tuesday is to lose Wednesday.  I don't do Wednesdays very well, it takes until about 2 p.m. for the near overdose of Tramadol on the Tuesday to clear out of my head enough for me to feel safe driving (I just pray I don't get a drug test when driving on Wednesdays). 

In addition to the loss of Wednesdays and the fuzzy headedness is the disbelief of my wife.  Yep, she that must be obeyed can not get her head around the fact that I can cope on Tuesday but not through the rest of the week.

The other really annoying thing about pain, that thing that I have tickling away at my nerve endings even now as I sit here feeling no pain, thanks to the meds, is describing it.  Every Health Care Professional wants to know how much pain I'm in on a scale of one to ten.  I don't know, I seem to remember the pain I had when my knee dislocated as being the worst I can remember.  Now this being the most, it should be a ten.  Now I have to think where my pain level is compared to that?  At times it seems more as it lasts longer. 

Is it as bad as hitting my thumb with a hammer (about a four)?  Is it as bad as breaking a rib (about a seven)?  Is it as bad as slicing my arm open when falling through a plastic gutter (6)? Is it as bad as ... ? That's my interpretations, what is someone else's?

I can understand 30°C temperature, I've felt it.  I've felt it in the south of Spain, I've felt it in the South of France (well in the Pyrenees), I've felt it in the south of England.  Three places where the temperature at ground level was the same.  Oh no it isn't!  In Spain, it's warm.  In France it was tolerable.  In the UK, however, it's stifling, to hot to breathe.

We can measure temperature, we can measure blood pressure, we can count the number of pulses in a minute. We can do all these things, and do them accurately and repeatedly.  So why can't we measure pain accurately?

My label.

Disabled! What an awful label, I wish I could get away from it. 

I have lost the ability to stand for long periods, I have lost the ability to get items from the top shelf in the supermarket (if I can get there), I have lost the ability to walk long distances.  I am disabled, but I don't want to be called that!


Thesaurus.com has this to say on the matter of being disabled:

Main Entry:	disabled [dis-ey-buhld]  /dɪsˈeɪbəld/ Show Spelled
Part of Speech:	adjective
Definition:	incapacitated
Synonyms:	broken-down, confined, decrepit, disarmed, hamstrung, handicapped, helpless, hurt, incapable, infirm, laid-up, lame, maimed, out-of-action, out-of-commission, paralyzed, powerless, run-down, sidelined, stalled, weakened, worn-out, wounded, wrecked
Antonyms:	able, healthy

Let me take the synonyms step-by-step:

broken-down
That makes me sound like I'm an unkempt tramp,

confined
Close, confined to my home by the DWP thanks to them stopping my DLA.

decrepit
Isn't that a building that's falling down?

disarmed
Nope, definitely got two of them, even if the connections are killing me.

hamstrung
Erm, no, I think my strings are still attached to my hams.

handicapped
Only when meeting a lady or entering a bilding, otherwise my cap is on my head.

helpless
I have help in the form of glamorous assistant Sally, who I help in turn.

hurt
YES!!! I'll go for that, I'm definitely hurting especially in my arthritic joints.

incapable
Ah, no, I am capable of many things; I just prefer them not to be negative things.

infirm
Afraid not, just poked my tummy and it's definitely solid and firm.

laid-up
No, I'm sat up at the moment, it's not bed-time yet

lame
ah, hm, close - movement, especially walking, is difficult or impossible,

maimed
Nobody did this to me.

out-of-action
If I weren't fighting the symptoms of osteoarthritis, I might go for that.

out-of-commission
Excuse me??? As all Armed Forces NCOs would say I work to survive.

paralyzed
Bah! My limbs move.

powerless
Not until the electricity prepayment meter runs out of cash.

run-down
Never in my knowledge has a car hit me and run over me.

sidelined
Never been a game player, so can't have been sidelined.

stalled
This is a house, not a stable, I'm not a horse even though my wife sometimes nags me (geddit?).

weakened
Yes, true, but so is a tree branch when half cut through.

worn-out
No, I'm not a piece of clothing.

wounded
No holes in me that shouldn't be there.

wrecked
Not sunken, not crashed, not wrecked.

 
So it looks like I can't rely on a "proper" old-fashioned word, it'll have to be more modern, more street-speak.  The problem is I don't do street-speak!

Do Not Go Gentle Into That Good Night

In the film "Independence Day", part of the speech the embattled President of the United States uses to inspire the pilots at Groom Lake (Area 51) before they fly off to repel the alien hordes got me thinking.

 

""Mankind." That word should have new meaning for all of us today. We can't be consumed by our petty differences anymore. We will be united in our common interests. Perhaps it's fate that today is the Fourth of July, and you will once again be fighting for our freedom... Not from tyranny, oppression, or persecution... but from annihilation. We are fighting for our right to live. To exist. And should we win the day, the Fourth of July will no longer be known as an American holiday, but as the day the world declared in one voice: "We will not go quietly into the night!" We will not vanish without a fight! We're going to live on! We're going to survive! "

Is this guy trying to reach through the years and give us hope? Did the script writers realise the end was closer than we thought?

Mankind, all the human beings on the planet, be they black, white, yellow or tanned, be they male, female, transgender or transsexual, be they fit or unit, able or disabled. We are fighting for our freedom from a tyrannical, oppressive government that by adroit use of the media are persecuting those of our society that need the most help. Why? I wish someone could tell me.

But, be it May the Fourth or July the Fourth, we need our independence from fear of starvation, we need to be able to survive. I don't want a Teak Toilet Seat for £50, I don't want to pay a researcher, or buy a Garlic Press or some Jamie Oliver cooking equipment, I want to know that my wife and I can eat and be kept warm.

It would be nice to buy food, I don't want a massive amount of food, we only eat one cooked meal a day, a small snack and a small breakfast. It's not a large meal, and we don't use expensive ingredients.

It would be nice to carry on being able to watch some television, I don't want Sky Movies, I don't want the Sports Channels, I definitely DO NOT want any "Adult" channels.

It would be nice to keep my telephone, so my daughter who has just recently been diagnosed with Myalgic Encephalomyeltis can phone at 5 a.m. to get her mm to talk her through getting up. So my 83 year old Dad who lives in Spain can call and let the phone ring enough so we know he's alive still!

It would be nice to keep paying for gas and electricity, to keep us warm and dry, to keep us and our clothes clean. 

It would be nice to pay the water company for providing clean water to cook with, to drink and to wash with.  OK, once we have used the water, we need them to take it away as well!

It would be nice to be able to keep the Internet, so I can carry on learning about how cruel the government can get, so I can keep in touch with my MP and friends by email.

It would also be nice to hang on to my car. Not a priority to most, but I cannot get to the nearest bus stop without severe pain!  Without the car, I'm stuck indoors.

Soon, I've got to pay the Council £2 a week for Council Tax top up.  In addition to that I may have to pay £14 for the bedroom I'm about to go to sleep in as I am twitching so much that I will wake my wife if I go to sleep in our bedroom.

Let's have a rough break-down of how my money goes at present-

Electricity	£       15.00
Gas	£       15.00
TV	£         6.00
TV Licence	£         8.00
Water	£       15.00
Broadband	£         6.00
Telephone	£         6.00
Food	£       40.00
	£     111.00

Oh great, I get £111 on the DWP's Assessment Rate while waiting for my ESA appeal to be sorted out!   I can survive!

BUT ... When the Council Tax and Rent Top-Up come into play I've got to find another £16 a week to pay for that, what goes?  Looks like there's two choices, £26 a week for food or "Can't Pay, Won't Pay!" 

Now, imagine, I didn't like keeping up with the TV, I could lose the TV and TV licence, the problem is the TV comes as part of a package that supplies TV, Telephone and Internet.  I stop paying for the TV channels, I have to pay more for the Internet and phone. OK, I might save the Licence fee, but that would soon be swallowed up in the increases in Fuel prices and now Water rates.

Did anyone not tell the Members of Parliament that restricting benefit increases to 1% would cause severe problems of poverty?  Well, I told my MP, but she still voted for the cap!  I have half a feeling that she was misled by the title of the Bill, "the Benefit Uprating Bill", it didn't up any rates, just cut them.  That and the lies that Iain Duncan Smith spouted about benefits going up by double what wages went up by.

Did you notice, in the calculations above, the missing link? The thing I used my Disabled Living Allowance for?  Yep, petrol and maintenance for the car! 

As I said in my earlier blog entry, http://aturtle05.blogspot.co.uk/2013/01/the-death-sentence-arrives.html the Department of Workshy and Painfree have stopped that, so, the car is eating into money I haven't got already. 

Seven Seconds...

Back in the 1990's Neneh Cherry and Youssou N'Dour recorded a song called Seven Seconds, basically the song talks of the fact that every seven seconds a child is born into this world.  That child does not care about the colour of it's skin or the language or religion of it's parents.  That child does not care whether mum or dad or big brother or big sister is disabled, either through the hand of fate or the hand of man.

While floating around the video jukebox that is YouTube looking for something totally unrelated with that song, I came across a video blog recorded by a young girl named Emily Perry from the USA (I think that was an American accent).  This awesome young lady had had a debate in her classroom that day about whether "People with disabilities are less valuable to society than "Normal" people".  Young Emily has disabilities in her family so she obviously argued against the subject. 

She stood up against the rest of the class as they were arguing that disabled people should be culled first if there was a global catastrophe.  She stood alone in a room of her peers baying for blood.  She alone stood up for those who could not stand up for themselves.

You can find Emily's video here.

This young lady is an example of why I cannot give up on young people. There is good in most of them, it is just their parents and families that give them the wrong slant on life. 

One of Emily's detractors annoyed me so much that I had to comment.  He, like so many people (yes, I am looking at those in the Palace of Westminster!) forget that it takes a split second to go from "Normal" to "Disabled".  Christopher Reeve, the actor that played Superman in three films, was a fit active man who went riding one day and was in a wheelchair on a ventilator for the rest of his life. 

He went from Normal to broken and it only took a millisecond.

The time it took to fall from a horse to the ground...

less than a second,

less than one thousandth of a second to separate his spinal cord and spend the next nine years tied to a machine to do his breathing for him. 

One seven thousandth of the space between two babies being born into the world on average.

And once about fifteen years ago, one of those seven second intervals produced an angel.  Would that there were more angels like Emily in this world that would get up and stand up for those of us that can't stand.  People who would get up and shout out about the injustices done to those of us who can't shout.

It's strange how looking for something that said I was overlooked by my fellow man should lead to a connection between a wonderful young lady and babies being born.  This world is a STRANGE place.

Oh and for the entertainment value, 7 Seconds by Youssou N'Dour and Neneh Cherry

Hysterical History

I've been asked why I mentioned the demon in the Chain Theory, the best answer is to explain about the first Demon to enter our house.  OK, this may be OLD history, but it's not as old as some things, like Henry VIII or the Romans, but close.

Let's start by taking you back about 18 years to early 1995. I had been divorced for a couple of years and thinking that my pension would be a Single Person Pension (alright I was only 32), when I met Sally, it was through her daughter that we met. Christina had said to her mum,

"I'm not always going to be around, you need to find someone to look after you. 

There's three people I know might fit the bill, the first's a Male Chauvinistic Pig, so no, not him. 

The second is a bit young so, no. 

Mr Turtle, he's the one, you should go out with him!" 

Good logical thinking from a 12½ year old! The only problem, we'd been seeing each other for a week before the night my daughter chose her dad. Oh, and yes, I take every opportunity to remind her that she chose me as her dad!

Oh My God! I realise I’ve been putting up with the wife for a long time, but I had forgotten what we went through in the early days (He lied! I hadn’t forgotten, just repressed it as we all do with horrible memories.)

My darling wife, was diagnosed with bowel cancer thirty years ago, long before I knew her and, just after we started going out together she was given the chance of life saving surgery to fit, what was then a revolutionary idea, an ileo-anal pouch, in effect an internal ileostomy. This pouch was going to change our lives in such a BIG way… well, let me tell you in the words I used in the newsletter of the Red Lion Group (the support group set up by patients of St Mark's Hospital) back in February 1997:

 “Do I have the operation or not?” - a brilliant question to be asked less than two months into a relationship! I will agree that for married couples this question might not cause too many easy nights, but I had only just started going out with Sally!

So there I was, mid-33, not quite realising how much I felt for this thirty-five-year-old divorcee, and, thanks to a cousin in Lewisham, “commuting” to Northwick Park every day! (Who could have expected that within one short week, I would have been on the receiving end of every one of her bodily fluids?

The next moment having hardly got to know the girl, she starts off by vomiting all over the floor of the ward...with me in the firing line! By day four blood, urine and faeces had been added to the list along with copious tears on the shoulder!

Still, as the nursing staff agreed when they found out how long we had been together, I must be a godsend. (I don’t know if I agree with that?)

Once we had got over the one-part operation which went slightly astray (the nurses realising that things weren’t quite right when a shout of “Get lost, you don’t care about me!” was sent in my direction), we made the not-so-short journey back home to Hastings along with an unexpected ileostomy bag. Isn’t it strange, you don’t realise how hilly your home town is until you start pushing someone in a wheelchair? Thank heavens for my experiences at Lourdes in the 80s, but then, in Lourdes, things are adapted for wheelchairs. Hastings is not wheelchair friendly, like most UK towns and cities. {Please remember this was late 1990's}

It does make a change when, in planning things from the complex day out to the simple shopping trip, you start trying to visualise in your mind the shortest , quickest routes to “ friendly ” shops or public conveniences that you can get into easily!

So, a piece of advice to the partners of both pre- and post-pouch patients. Get a map of your home town, mark the shops or cafés with accessible toilets and get in touch with the Red Cross for assistance with a wheelchair until your partner is able to walk easily.

Finally find the best taxi firm (and this includes price, assistance and willingness to break the speed limit) if you don’t have your own car, and remember: others have gone through this. I coped - so can you. By the way, Sally and I are getting married on May 14 next year! {And somehow, we're still together!}

And from Summer 1999:-

As experienced pouch-pairs will know only too well, the first few months of coping with the new addition can be sheer hell. This food goes straight through, that food slows it all up too much. And as for beer... Ha!!!! For someone as stubborn as my wife Sally (her description, not mine), it is a big change having to restrict the diet. For someone as adventurous in the kitchen as I am (and he is a good cook - Sally) it’s the biggest challenge possible.

The change from being brought up knowing when you need to go to the loo to suddenly needing “nappies” just in case can be downright degrading. Soiling the bed or your clothes, without having felt the need to go, can bring the Demon Depression flying out of its hiding place!

That’s the Demon, creeping up behind you and jumping out just when you didn’t expect it and it does not just aim itself at the pouch owner but targets the spouse-of-pouch as well. Still, as Sally keeps reminding me in the long gaps between the Demon’s appearances - .It lives with you, not you with it!

Still, having got the Demon firmly put into its rightful place (buried about two miles deep on the surface of Pluto preferably), you then have to look into feeding the pouch. I am sure that many of you will have discovered that "pouch" actually stands for Permanently Open Unfillable Constant Hunger, because of the little but often method of feeding needed to satisfy this creature seldom encountered out of the tight-knit social group in which it lives.

First, take a very minimalistic shopping budget (as I am now on incapacity benefit, thanks to arthritis aggravated by pushing her around the hills of Hastings in a wheelchair for six weeks!) and a greatly reduced shopping list (take a chair into the supermarket to sit on while you read the contents lists to avoid the no-no items). Then it’s a case of trying out a variety of meals (one at a time!).

While I am talking of food, a bed of boiled white rice topped with some plain fried minced beef or lamb into which a large quantity of ketchup had been mixed was, and still is, our staple emergency meal. If the owner of the “little f(r)iend” liked spicy foods before the op - sorry, but it may take a long time to slowly build up to something they can handle.

“Slow and Steady wins the day” as the Turtle said to the Hare!

Gee, it's amazing how little realisation the Department for Wonderful People and the rest of Her Majesty's Government have for how simple things AREN'T for disabled people.  It's also amazing that I'm the one claiming the benefits and not her!

It's also strange that "The PouchDemon" and "The ChainDemon" are married and living happily ever after (Sorry, that should be existing, you can't live on Assessment Rate).

I'd like to thank the webmaster of The Red Lion Group for archiving all the old newsletters including the ones that had those two articles in.  It gave me a wonderful afternoon of reminiscing and reformatting the text as I didn't have copies of the articles I wrote soooooo long ago.