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.

The Chain Theory

I have what might be a silly question, I know there are people out there, and I am one of them, who have to budget their energy reserves carefully. These people suffer from a wide variety of maladies ranging from Lupus to Chronic Fatigue Syndrome, Arthritis to Fibromyalgia.  These people group together under the title of "Spoonies", thanks to Christine Miserandino and her spoon theory.  My question is, what do we call those of us who have an additive problem that is like being pulled back and gets worse as we go through the day?

I was sitting trying to think of a similar description for the way I have to force myself to wade through invisible mud and suffer from the delayed pain that this causes.  This may not be typical of other Osteo-Arthritis sufferers, but it’s my description of my “Demon”.

The spoon theory states that you have blocks of energy, represented by a handful of spoons that get taken away as you do tasks throughout the day.  My “Demon” doesn’t take, until later, but adds, however, he makes sure I throw my spoons about too!

What you need to do is imagine that as I start to walk, or stand, this little blighter nips up behind me and threads a chain through my leg.  Not between them, but sort of sticks a link of the chain right into and through my knee.  Needless to say, the analgesics I am on hide the actual pain of the link being threaded through the knee, but sometimes, the heat used to weld the link shut can be felt.

Like Jacob Marley, in “A Christmas Carol”, who appears to Ebenezer Scrooge weighed down by chains he forged in life, my chains weigh me down throughout the day and drag along behind me as I walk.  It starts off with just small light chains, but these are added to and added to as I move, if I can stop and take a rest with my weight off my legs, some may fall off, but there’s always some that don’t.

The day goes on, with these chains dragging me down, throwing my spoons out as I go along, until at last, I run out of spoons and fall into bed.  This is the time the Demon really has his fun.  He gets to stand at the end of my bed and pull the chains with all his might, pulling on those links that pass through my shoulders and knees.  He doesn’t have the decency to undo the link that goes through the joint, just pulls as hard as possible to yank the chains out, dragging the last link straight through and out!

I had tried to find other descriptions, like a back-pack being filled with stones, but being a “Stonie” didn’t sound too good, that and the pain at the end of the day isn’t there.  The chains seem to be the best description, so, as well as being a “Spoonie”, I’m a “Chainee”.

Ouch, Christmas Day has been spoiled!

There was I, half past seven in the evening, feeling like the day was good, I felt totally drained, but hey that's what bed is for.  Amazingly, for the first time in about two months I went to bed in NO pain.

Started to watch some (really boring) Will Smith film, and dozed off in the middle of it about 15 minutes after getting into bed.  About an hour and a half later ... BANG!  Hello Pain!!!!  Don't know what caused it, don't really care, but my knees, ankles and shoulders are letting me know they are there!

So I lay there, trying to a) get comfortable, b) stop hurting and c) go back to sleep (oh, and d) not sobbing so much that I wake the wife). No success.  So I give up, turn the TV back on (I use a sleep function, in case I drop off again) and start to watch stuff.   Oh, I see a programme of Bee Gees music, that's good, I'm a fan.  I sit and get about 20 minutes in to a 30 minute programme, when I hear that most glorious of sounds, the car outside my house is leaving!

"Oh My God," I thought, "I'm parked over the road as there was no parking spaces anywhere when I came home!"

I threw on my trousers and boots, grabbed the car keys and walked over the road to where my car was parked on Double Yellow Lines (No Parking for any that don't realise), start the engine, indicate I am about to pull out. The lady in the little car that had been taking up enough room for my large saloon pulled out, I started to pull out and ... A Multi-Person Vehicle owned by one of the local taxi firms pulls up alongside it.

OK, thinks I, he's dropping someone off. I gesture first at me then at the space, "Pull forward mate, I am going in there!"   He pulls forwards, then slams the van into reverse and fills the space!

I can tell you, I was a little put out by this.  No scratch that, I was a LOT put out by this.

I pulled alongside his door, stopped, thought, shall I leave my car here or not?

Thirty metres down the road (Thanks Ms McVey, I measured it the other day thanks to the new Mobility requirements), there was a LARGER space, one by a garage so this Hackney Carriage Licence holder could have driven in more easily and would not have been blocked in in the morning!  So, I, with a car steamed up because it had been standing for three hours with a Blue Badge displayed, had to reverse 30 metres to get to a parking space so that the Lesser Spotted Blue Stripped Traffic Vultures (aka Parking Attendants) didn't get up at Oh Dark Hundred Hours thinking, "lets get those who had too much to drink last night" and give me a ticket.

Insult added to injury though, when I got close to this Minibus on the walk back home, the driver had disappeared into the ether and hadn't even had the courtesy to apologise for stealing my parking space. 

Oh, I wish I had a disabled bay outside, but it's no good applying for one, there's too many people around here with disabled badges that would park there and I'd still have to walk a mile to park.

So now, from thinking I was going to get a good night sleep, agony and annoyance!

Oh, and the Bee Gees programme, on a channel without a +1 sister was just rolling it's credits when I got back to the bedroom!

BAH HUMBUG!!!!

One night long ago...

I apologise, in advance, in case I offend any of you who read this blog who either cannot believe or won't believe in a God.  Also, if your God is not my God, I would be surprised (they're all the same really).

Many years ago, so the story goes, a child was born to bring hope to the world.  Two thousand years later, we're still stuffed!

We still have people around the world killing in the name of the God they believe in, people killing children and defenceless people.  WHY?

We still have people treating others as less than they should.  There's still a feeling of  "I am better than you because of your ... " Education/skin colour/faith/physical or mental condition/political views (delete as applicable).  WHY?

Tomorrow, the day that commemorates that birth, start looking at your life, look at how you treat your neighbour, not just the person that lives in the house next to yours, but the people that live in the next street, next town, next county, next country!  The baby born so long ago, went on to say "Love one another. As I have loved you, so you must love one another." All this time to get it right and we are not. WHY?

He didn't specify the colour of their skin, he said "one another"!
 
He didn't specify the religion or lack thereof, he said "one another"!

He didn't specify the level of fitness or ability, he said "one another"!

He didn't specify the language they speak, he said "one another"!

Let us all, whether black, pink, yellow or green; whether Christian, Muslim, Pagan or whatever; fit or disabled; healthy or sick learn love.  Love as in caring for those worse off than us, be it because they can't read, hold a pen, walk or talk.  For those at the bottom of the heap, care for those that help you, give them a smile, even if you can't say thank you.

If you don't believe in Christ, fair enough, I wish you all the joy and peace that Jesus wanted all people to experience.  If you do, I wish you ... exactly the same.

Whatever you do believe in, Merry Christmas and may 2013 be a heck of a lot better than 2012, it can't get much worse!

Oh, and whatever you are, be Awesome!

Dear Dave

I'd like to acquaint you with some of the problems that your friends in Atos (Advanced Targeting of Scroungers) miss.

These observations are true, well, at least they are true for me, other arthritis sufferers may differ in their symptoms.

You may notice (I think the time that this blog is written appears somewhere on it) that this is being written at Oh My God It's Early O'clock. This is because I had to walk around a supermarket yesterday (Saturday) morning to scrape together some food for my wife and I to survive exist over the Christmas period.

"Why", I hear you ask "should a walk around a supermarket keep you up at night?"

Simple, I reply, arthritis is agony wrapped in a dose of pain enhanced when exercising and in cold, wet weather.  You may have noticed the country is bathed in rain type precipitation at present, this and the general low temperature at this time of year does not help reduce this pain.

Pain, you may have experienced a severe sprained ankle (pain rating about 8/10 for a week or so), well arthritis is about 7/10 all day, all year even when dulled through painkillers, then, you have to walk too far and it goes up, the painkillers don't dull it, so you take more and the pain is still there and a side effect of the painkillers is - insomnia!

This is, however perhaps one or two days per month, but I cannot plan which day(s) it might be, there could be an emergency that means too much standing or walking, but I can tell you what the next day will be - one spent drowsy or in bed asleep!  Fortunately, tomorrow is a Sunday so if I were working it would not necessarily mean a day off work, but, as said before, I can't guarantee which day of the week I will be kept awake overnight.

The Atos (Advanced Termination of Sick-people) snapshot is taken on one day, in my case on one of the hottest driest days of the year, one that was, for me, a fairly reasonable day.  So the person that examined me, did not see me at my worst and was not willing/able to take my description of the bad days.  Mind you, he also could not tell right from left and did not test the flexibility of my legs, yet commented on it in his report!

Now, I hear that one of your colleagues wishes to add to my embarrassment by giving me a "Benefit Payment" card.  To highlight to people in shops that I am one of these people labelled by your government as a scrounger.  As others have said, we only await the badges that we have to sew onto our coats, or the tattoos that we have to wear on our foreheads to announce to the world that we are unable to work.  A horrible reflection of something that took place in Germany eighty years ago! 

So, Dave, if I may call you that, Mr Cameron, I hope and pray that none of your relatives ever have to suffer the indignity of a debilitating illness or, through no fault of their own, end up disabled.

It makes it Worthwhile

My darling, long-suffering wife received a text tonight, from one of "Our" cadets:

I'd just like to say thank you for everything you and Mr T have done for me over the years and that you guys have been there to help me on the road to my uniformed career, and without your support throughout cadets I doubt I'd be where I am now.   

I will forever keep the photo of the Military Skills Competition with the rest of the Scction and you both in it up on my wall at home to remind me how much you both actually did for all of us.   

Thank you both so very much, I hope you have a Fabulous Christmas and New Year.
 

 Makes it all worthwhile really, in the words of the great Terry Pratchett in Unseen Academicals, like Mr Nutt, "I have acheived worth".

I Hate TLAs

TLAs - Three Letter Acronyms and why I hate them.

People are littering blogs, articles and other items with too many TLAs these days. 

I can understand it on Twitter, there's only 160 characters to use after all and "Department for Work and Pensions" does take up a lot more of them than DWP

But then, Esther McVey, the Minister for the Disabled (or should that be MfD) slathers her speech in an almost deserted House of Commons (HoC?) with PIP, DLA, WCA and others.  It's annoying that everything has to be reduced to a short form.  Income Support, was ocassionally shortened to IS (but rarely in speech), Social Security was rarely referred to as SS (pretty obvious why not).

I realise that someone speaking all day about Statutory Sick Pay (SSP) and Disability Living Allowance (DLA), needs a break, preferably not relying on any of these benefits.

Then along comes:

ILF Independant Living Fund
LHA Local Housing Allowance
CTB Council Tax Benefit
WTC Working Tax Credit
NHS National Health Sevice

So I'm getting to IHE (I've had enough) and GMAB (Give Me A Break) about it all!

Why the Awesome Turtle

Before I start, I have to explain a bit about me.  I have, until June this year, spent 22 years giving back to my community by helping with Cadets, teaching them simple things, like map-reading and communications,  The "Awesome" bit comes from a time when at camp during a raft building and sailing exercise organised by the Royal Engineers, two of them took guard either side of me holding paddles. "What are you doing?", I asked in a puzzled voice.

"We're guarding you" said one of them out of the side of his mouth.

"Guarding me, why?"

"On account of your awesomeness!"  - Out of the mouths of babes and innocents!

Obviously, I fell about in fits of laughter.  When I recovered, I thought to myself, what do these youngsters see in me?  Why are they so proud of me? What have I done to this small percentage of my town?  How can someone who never served this country by carrying arms in it's defence make these boys and girls respect me?

I sat down, on a pile of wood used for building rafts and tried to think. Just then, one of my cadets came up to me and said, "Excuse me sir," bent down beside me and handed me my walking stick that I had knocked off it's balance point against the pile of wood.

"What is it that I do that you guys respect so much?" I asked this young girl. 

"You're there for us sir, when we need you, you are there.  You care about us."

"But, I'm not fit, I've never served, I've never done anything"

"Oh, you have done something, you've helped us all, through what you say, how you try to make us better people."

Yes, I've saved lives with my instruction, both First Aid and Map Reading.  I hope I've earned the title of "Awesome" but  don't feel like I deserve it.

Now that I have left Cadets, I feel empty in some way, I just hope the 22 years I have given to my town in this small way make me worthy in the eyes of my fellow man.

That's the fun bit over with, now comes the bad news.  I have arthritis, my body is riddled with it, walking is difficult and I am fighting the  Department for Work and Pensions over their decision I am fit for work!  From now on this blog, while having the occasional funny moment provided by my grand-daughters and family, will mainly be about the problems of a range of three letter acronyms like DWP, DLA, PIP and WCA!