Christmas Shopping

We went Christmas shopping yesterday. Our annual trip to Bluewater. We do it there because Lakeside is through the tunnel and we’d have to pay. I planned it very carefully this year – we have had many trips where we wander around the shops, looking for presents for friends and relatives, and ending up buying ourselves more Christmas tat. This year, I had a list. I started at the beginning of November asking people what they would like for Christmas, assuring them that if they didn’t give me some ideas, they’d end up with me buying things they didn’t want and returning them in the sales in January. So, everyone gave me ideas, and I had a succinct list. We got there yesterday at about midday and hit John Lewis first. I love John Lewis. They’re so classy. I wanted to buy some more mugs and a whole bunch of Christmas tree decorations.

 

Christmas tree – I managed to persuade Andy that we won’t have the tree he always gets from Wyevale for 10% off. I wanted him to buy a Fraser fir, which he can get from Sussex trees, and it smells of clementine. Anyway, I won, and we have a 7ft tree to decorate. I want to decorate it white, which I was told would cost at least £100 to replace all the baubles, but it didn’t. It cost about £30. I hope it looks good when it’s decorated, but if it doesn’t, then we’ll go back to the old stuff we had last year.

 

My eldest daughter was very specific and sent me links to all of the things she wanted, which is really helpful, because she knows I’m not much good at this. She told me exactly what her children would like, and what her husband wanted. She’s into cosmetic and beauty products, and her husband will only wear certain retail brands, i.e. no tacky items. My other daughter is not quite so fussy, and gave me some ideas, but was quite vague and is less selective when it comes to gifts. After we had maxed out at John Lewis, we visited Marks and Sparks, and found a whole load more things to spend money on. When we had finished there, a visit back to the car was required, because we couldn’t carry it round with us all day. There’s a very nice Molton Brown store, which also was on the shopping list of things to buy. We needed coffee and cake after that and found a café and stopped for 20 minutes to regroup and tick off items on the list.

 

I carried this list religiously with me the whole day, visiting many different shops to obtain the correct item, and I even had a pen to tick them off. I was very smug and self-satisfied when I could remove yet another item. I’ve done a lot of shopping for Christmas online, and I await parcels every day. Amazon is my next best friend. Nobody has asked me what I want for Christmas, so I buy my own, books, music, etc.

 

The Christmas shopping trip was very successful this year. It would appear that everyone has got what they have asked for, and after a meal in a tapas restaurant, we got home in time for The Apprentice.

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I Love Chocolate, But…

When I was a little girl, the advent calendar that I had was a cardboard affair with colours and lots of glitter, and little doors that opened, and no chocolate. About twenty-five years ago, I tried to buy my daughters a traditional advent calendar in the village where we lived. It was very difficult, even then, to find anything that did not include chocolate. I don’t know where it started – I loved my advent calendar. Open the doors, and you were excited. “I’ve got a shepherd!” or “I’ve got a star on mine!” And in the middle there were arch shaped door, and on the 24th December, and when you opened them, there was baby Jesus in the crib. These days, no one knows about that. They only know about which chocolate they’re going to get on which day. All the supermarkets sell is chocolate calendars, between the price of £2.50 to £10. Where did the whole point of Christmas go? I hate to tell everyone, but it’s not all about the chocolate. The question is, why do we celebrate Christmas? We celebrate Christmas because of the religious aspect. I hate to tell people, and I don’t want to upset anyone, but Christmas is about the baby Jesus. It is! If I google ‘traditional advent calendars’, I can find them online, but that involves ordering them, and paying postage and packing. All the supermarkets sell the chocolate versions, but I can’t find anywhere that still knows about a calendar without chocolate involved. This isn’t meant to be a rant, and I don’t want it to be, but I’m upset and worried that we’ve lost the whole point. I’m just old-fashioned, but I think somewhere along the line, we should go back to recognising that Christmas is about more than just how much chocolate our children can consume in twelve days.

If we have an obesity crisis in children, couldn’t somebody high up in supermarkets or confectionary say, “Well, we’ll forfeit, and go back to traditional calendars, maybe wildlife or scenic views, it doesn’t have to be religious, it doesn’t have to offend anyone, it can have lots of glitter, but let’s hold back on the chocolate.”

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Dancing in the dark

I’m looking for a younger man, someone who can hold me up when I fall.

There is a competition running on the radio to see Bruce Springsteen in New York City. It’s in aid of Children in Need and it costs £10 to enter, all of the proceeds going to C In N – I would love to see The Boss, especially in NYC.

On Tuesday morning the conversation between me and my patient husband (PH) went like this:

Me; “Would you like to see Bruce Springsteen?”

PH; “Oh I s’pose if he ever came to this country”

Me; “You wouldn’t like to see him in New York, then?”

PH; “What, you mean this competition?”

Me; “On Broadway, Upper Class Virgin Travel, three nights in the Hilton Midtown, you wouldn’t want to do that?”

PH: Sighs deeply “Can you think of the aggro getting there? It would be so much hassle and anyway, there’s probably a ‘get out clause’ for wheelchairs”.

It’s early in the morning and it took me a while to get the irony of a ‘get out clause’ for wheelchairs and I know that PH doesn’t do irony, so it wasn’t deliberate.  The conversation continues:

Me; “I don’t think Chris Evans or Virgin Atlantic would get away with such discrimination, do you?”

PH; “Well you’d never win anyway!”

Me; “No, probably you’re right but it’s for a good cause and I will read the t & c’s, just to check before I enter.”

PH; “You do what you wanna do, Saints are only two points off the bottom now.”

At this point I know the conversation is over, apart from me saying: “I could do this conversation in ‘stand up’, oh whoops, I’ve done it again!

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Forget, “Does she take sugar?”

When you look at me do you see the wheelchair? Do you think of the woman who is sitting in it?

I need someone to get me out of bed in the morning, I want you to do it with a smile, I need a person to put me to bed at night, I want you to be thankful for the day we’ve had together.

I like exploring churches and wandering around graveyards using the dates on headstones; the history inspiring me in my writing.  I never do this.

I love the fact that I like Boyzone and I like loving Chopin.

I adore watching old films, where no one gets shot.  My life cries out for happy endings.

Do you feel you know me yet?

I’m not looking for luxury I want the simple life: a gite in France is all I need.  To wake up and walk to the bakery, bring back croissant for breakfast, meander to the market and buy fresh fish for supper.  A relaxing lunch of baguette and cheese, an afternoon of reading books in the warm sun.  Later, watching the sun dip over the deepening blue Mediterranean.

Do you see any anger in me? Do you see my emotions, my pain, my frustration? Or do you only see the chair?

I cry for lost friends, my isolation, my need for a hug; someone to hold me, not sex. That’s not what I need.

What makes me laugh? My grandchildren who normalise my disability – who enjoy being lifted by my hoist, their laughter and delight at the fun in this activity – my OT would have a fit! I laugh at silly sitcoms: ‘Dad’s Army’, ‘Outnumbered’ and ‘Butterflies’,  ‘Bread’, ‘The Vicar of Dibley’ and of course ‘Friends’.

I hate the way I look, sitting in this chair.

I hate the way you look at me, seeing me like this.

Now, when you look at me do you think you know me better?

 

 

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Left To My Own Devices

My shopping is out of control.  I don’t know how it got like this, it could be boredom, it might be bloody mindedness, or I could just put it down to MS!

I’ve always been a bit of a shopaholic, in my teenaged years I would spend a month’s salary in the first week and get by on fresh air for three weeks until the next one.  But it has got a lot worse in latter years.  My house is bulging, my fridge breathes a sigh of relief when I remove an item from it and frankly, you don’t want to know about the chocolate!

There have been concerted efforts from my PA’s to take control and probably would help them, because they’re the ones who put it all away. When a Sainsburys delivery arrives they have to find more hiding places and they are getting a little short with me.  Their plan is to tell me exactly what is needed and make a list, even tell Alexa what is needed and I then can shop.  This doesn’t work.  Why doesn’t it work? I have a theory about this, Andy likes to watch a football match on a Sunday afternoon and, because I don’t, I sit with a laptop inviting me, tempting me, daring me to shop and you cannot put parental locks on shopping websites and even though my carers leave me thinking that I have only spent £40.27, in order to get free delivery, by the time it comes on Monday it’s up to £66.72. None of this is my fault! I swear many chocolate and crisp manufacturers put something in their items that makes them addictive, I don’t need the shunning from the public, I need to be accepted for who I am, I need help not control, I don’t work well with control.   Another day has passed and guess what? The important thing is the one thing I forgot to put in the basket, the important thing? Washing up liquid to remove all the chocolate from the plates.

 

 

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‘I’ll Be There For You……’

I am sitting on Monica Geller’s sofa, I’ve got my girls beside me and I can’t quite believe I’m here.  My three readers of this blog might think this is a bit silly, but I’m enjoying an apartment tour at FriendsFest.  It’s a sunny Sunday afternoon in Preston Park, Brighton.  I’ve been a ‘Friends’ fan forever.  I’ve watched every episode many times, my favourite character is Joey, Matt LeBlanc, why wouldn’t he be my favourite character? What’s not to like?

There is a whole community of us out there aged 14 – 60, it’s like Marmite; you either love it or you hate it.  Those who hate it have no soul!

“WE WERE ON A BREAK!!!!!”, “How are you doin’?” We know all the quotes, all the kisses, we know ‘Smelly Cat’, I spend my life living around the events and happenings in ‘Friends’ and relating them to my own life.  I would have loved to be Rachel – that hair! The style ‘The Rachel cut’ we all wanted it. We would have loved to be Rachel, but I’m quite sure my control issues make me more of a ‘Monica’.

There is one thing that I think ‘Friends’ has missed out on.  I accept it was made over 20 years ago and disability awareness is not what it is now, however, there was never a sign of a disabled character in any of the many episodes.  I would have a good Rachel in ‘Friends’, a disabled woman with her own independence.

I found myself feeling slightly envious of the lifestyles of the characters; Rachel had that lovely job in Bloomingdales; they were all able to sit around in ‘Central Perk’ drinking delicious cappuccinos and macchiatos.  They lived in beautiful apartments – across the corridor from one another (except for Phoebe and Ross), which meant they were able to drop in on each other whenever a crisis or a drama occurred.  But that’s not real life.  Here I am watching episodes when I’m bringing up two small children and desirous of their lives.  But, let’s look at my life now.  Two beautiful daughters, four amazing grandchildren,  I have my writing, I have my health, I have a great support network with family and I go to concerts and festivals.  I am not wealthy but I have enough to enjoy life and feel fulfilled.  I have plans for the future: a cruise with all of my family, I have an idea to visit Nashville, Tennessee.  AND I WILL HAVE THAT BOOK WRITTEN!  Life is good, I wonder if it would be that good for the characters in ‘Friends’.

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The Price of Dignity

MS is a crappy disease, literally. When I was a child, I would notice little adverts on the back of the paper, telling me about the charity for MS and I would read about this crippling disease, which caused double incontinence and complete misery.  I never thought I would have it.  Fast forward fifty years and I am in it, living it every day.  It happens just like the adverts said and I’m incontinent.  My bladder and my bowels don’t work.  I have a catheter, which helps me control my urine function and I use an anal irrigation system every day to control my bowels.  I have recently been told that this @peristeensystem, which is apparently, according to the suppliers, @coloplast, is supposed to last three months.  They need to be in my shoes for a mile! In an ideal world it would last twelve weeks, but this world is not ideal.  We are all different, each of us has our own ‘rhythms’ and @coloplast’s policy does not accommodate my own ‘rhythm’.

I have raised this issue with my general practitioner, who has advised me that perhaps I need to buy extra systems in order to meet my requirements, but when I said that I needed extra systems to take away with me, in case anything was broken, or when I travel, he looked at me, askance and asked, “How often do you go away?” which isn’t actually any of their business and seemed genuinely surprised that an MS warrior would dare to go ‘away’.  Whilst I could indeed purchase these items, why the hell should I?

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CarFest Action

The annual Dixon pilgrimage to CarFest has been and gone.  CarFest was the brainchild of a famous Radio 2 presenter in 2012. He devised a way of showing off his extensive car collection along with all his celebrity petrolhead friends.  He patronises Children in Need, as did his predecessor, and the event raises a considerable amount of money each year for the charity. There are two CarFest’s annually, one in the North which is held somewhere in Cheshire and CarFest South which is held near to Basingstoke on a farm owned by a retired Formula1 driver.  The site of CarFest is huge, welcoming tents and caravans and motor homes, all spread across 2,000 acres which are usually inhabited by water buffalo.  

We set off on Friday morning, with the rest of the country, at the start of another Bank Holiday exodus.  Husband-in-a-hurry began the journey with the best of intentions to not get stressed over traffic.  That didn’t last long!  Although we have done this every year since 2012 the journey doesn’t get any easier or more pleasant.  Narrow country lanes and motorway jams just aren’t conducive to happy travel. Nevertheless, we got there after the usual blue smoke from his ears and a lot of sighing from me.  My daughter and two Grandchildren live close by and it’s always good to see them as they attend CarFest as well.  

Husband-in-a-hurry has a different agenda to me for the whole weekend.  He enjoys the cars much more than I do. The site has a racing track laid out and hay bales surround it ready for any over enthusiastic drivers.  There’s a lot of testosterone on show as drivers burn rubber with wheel spins and the air is filled with an acrid smell as plumes of smoke disperse over the crowd of observers.  If I’m honest the real reason I want to go is to see Nicki and my Grandchildren.  I always end up spending too much money on them and fill them with sugary confection which is a trial to him and not pleasing to Nicki.  I want to explore the tents and stalls full of good sweet treats with the children as they always need a sugar fix.  I have come home half a stone heavier but it’s offset by my purse which is considerably lighter. 

 Since the inception of this festival the cars have become slightly less of the big attraction and more of a side show to the music acts, which are very Radio 2 and food lots of food, celebrity chefs and cooking demonstrations.  The whole experience is now a Top Gear/GoodFood show/mini Glastonbury.

I find myself wishing and wanting to know more about the technicalities of the whole shebang.  I want to know how the locals, in this quiet, leafy Hampshire village feel, when CarFest descends on them.  Does Chris Evans offer them free tickets? Do the residents lock up their doors for the whole 3 days having stocked up on food from Ocado?  How do all of the local trades and producers get onto the site? What happens to the livestock for the duration of the festival? Where are they? Do they go on holiday? How far ahead do the cattle get moved out to ensure that the multitude don’t find ‘something nasty’ underfoot? You can only begin to imagine the terrain in a cattle field or in my case beneath my wheels!  How far ahead do they plan this massive logistical under taking? I also dream of meeting Jodi Scheckter and asking him for a cheeky third of an acre so I can build my bungalow here in Hampshire where I’m supposed to be.  

After getting rained on a couple of times, which can only be expected on an August Bank Holiday weekend we come home, Husband-in-a-hurry assuring me we will never do that again, and me thinking next years tickets go on sale in November……….

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Job Satisfaction

Today a new personal assistant started working for me. You won’t believe the problems of replacing a PA. Advertising is quite clear – I specify hours and pay rate and the only requirements that I have are that it has to be somebody female and a non-smoker. I think that the problems stem from the fact that the caring industry as a whole is not recognised as a profession. There is no career progression within caring, and there is no pay increment. Considering that the industry as a whole is so large within this country, and remembering that we have an ageing population, with a greater demand on the body as a whole, I believe that the whole system needs a complete makeover. If we placed the importance and recognised that without it, so many people would be so abandoned, we might begin to realise the potential within caring. There is no training, and many of the people who apply for a job with me are coming from outside of the industry. In the past, I have had some really great PAs who I don’t want to lose, and some who I am happy to say goodbye to. I can’t keep the same PAs with me unless I can make the job satisfying. I would say that the rate that I pay is not sufficient, and I want to offer an inflation rated pay rise every year, but because the budget that I am given faces a cut each year, I am just not able to afford it. Keeping the disabled and elderly in their own homes has to be of benefit to everyone, and should I be taken into care or a home, it would be hugely more expensive to keep me there than to pay a decent amount of money for me to stay at home. Some care homes cost as much as £1500 a week. I receive £250 a week to provide my own care, that’s just absurd. It is presumed that caring for someone as a job is sometimes described as just ‘wiping people’s noses’ for a living. There is nothing in that that is recognised as a ‘proper job’. However, Andy can go to work for a call centre and it’s seen to be legitimate. Somebody needs to do something before the whole system completely collapses.

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I Have A Dream

I used to live in a bungalow.  It was a lovely bungalow, south facing, huge living room, 12′ patio windows and 3 bedrooms.  The only problem was there was only one bathroom and my bedroom was the other end of the bungalow.  With developing MS and continence issues becoming more urgent, one bathroom was never enough.  So we moved to a house, well, two, to be accurate and now I long to be able to access all areas.

Occupational Therapy assessments are trying to help but I’m still left with a set of stairs and a stair lift which only Andy can lift me on to and off.  We have considered all lifestyle changes, major and minor, however, at the end of the day and for both our comfort and safety, a bungalow is the only realistic option.  Finding the right bungalow is proving to be a challenge, we have to have widened doors, no ninety degree turns in hallways, large enough rooms to wreck with my electric wheelchair.

The obvious solution to me is to write my own not to design my own, I already have that dream! It has improved over the years and I feel that now is the time to bring it to fruition.

Let me tell you about this bungalow.

It is strangely a two story property, the ground floor consists of garages, a utility / laundry room and room for all the ‘gubbins’ that you do not want cluttering up your living areas; radiators: as it is going to have underfloor heating; boilers and water tanks. A wine cellar is de rigeur and I might put a ‘man cave’ down there.  The bungalow is timber framed and has a flight of steps from ground floor to first floor.  A verandah surrounds the first floor, so that I can search the sun any time of the day.  The interior includes three double bedrooms; two with en suite and the master with a wet room, each bedroom opens out on to the verandah via picture windows and they are the only rooms which have doors.  The living is all open plan; a kitchen leads to dining which in turn leads to the sofas.  All hard floors throughout, possibly parquet.  I can hear you asking: “how are you going to get on to a first floor bungalow?” A person lift leads from the garage up to my bedroom, so I can roll from the car, directly into the lift and upstairs.  There is a flight of interior back stairs which lead from the laundry room lead into the kitchen.

The only problem I have with this project is funding: until my debut novel is published I don’t have any money.  I can’t afford to buy a plot of land, with or without the statutory planning permission.  I have no money for architects and construction. I’m not going to sell my soul to the devil just to pay for it. So, this is going to remain just a dream but without dreams nothing happens in life, does it?

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