Elf Help

The elves from my childhood were Santa’s helpers. They had green stripy legs and they had names like Patch and Sugar Socks and they always helped on the Big Day. I am a little confused, Christmas seems to have lost some of it’s magic.

For a start who decided that Advent Calendars should be full of chocolate, where did that come from? I had to work really conscientiously shopping to find one without any treats inside. John Lewis came through, expensively, with a perfect calendar; quite churchy but really nice. When Henry and Meadow saw it they were underwhelmed by it ‘Nonna, where’s the chocolate?’
‘There isn’t any, isn’t it pretty?’.
The two of them turned to granddad and asked ‘Have you got your calendar and has it got chocolate?’
Of course granddad’s has got chocolate in it.

For me, Christmas was always about the birth of Jesus. Mary & Joseph and the census and no room at the inn and the Inn-Keeper saying: ‘There’s a stable over there if that’s any good to you’ and Baby Jesus being born and laying him in a manger. Shepherds and the Angel Gabriel, the three kings following the star. We weren’t overly religious but I went to church every Sunday and it fills my heart now just to think of what Christmas meant to me instead of all of today’s consumerism.

Back to the elf, against my better judgement I allowed one into the house last year. My elf, who shall remain nameless, apparently had to do mischevious or naughty things. It was a tricky 24 days for me catching up with this elf. He or she was responsible for messing up my bookshelf, throwing cushions on the floor and untidying my kitchen cupboards. I spent all my time undoing all their impish things, so this year I had to have a word with the ‘Elf on the Shelf’ I explained that as a disabled person he or she needed to be a little bit more considerate of other people and their limitations. I explained about random acts of kindness and I think it went in. This year we’ve started off with the Help Elf. I know it’s early days but on Day 3 so far the elf has helped with seasonal mug swap and has overseen the annual retrieval of the Christmas decorations from the loft. Elf has promised to assist with sorting laundry and keep my tea box topped up.

Where did this elf come from? It was clearly imported from America on a plane or a boat or a train and now it’s here it’s obviously going to stay. Even Alexa confirms this and she knows everything. I think that Christmas is losing it’s charm. Santa Claus seems to have taken over and is rubbing his hands with glee as his pockets get heavier. Once upon a time a Christmas list sent up the chimney was allowed to be a list but with the understanding that Father Christmas could only carry one gift on his sleigh. Now Santa Claus brings many more presents somehow, but I don’t know how he carries them all.

I don’t want to feel disillusioned or cynical as Christmas approaches. I love this festival, but the pressure of having the perfect tree or stack of gifts or even the perfect Christmas lunch is so great that it takes away the enchantment. All my friends talk about the stress of Christmas, we all complain to each other over the cost of things, the waste and yet we all just carry on the same way allowing ourselves to be drawn in by the hype and advertising and media over Christmas.

What do you think?

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Things that I miss – Part Two, or things I gave up too soon.

Ms has taken it’s toll on me. Not necessarily all bad, but there are things that I can’t do now that I gave up too soon and conceded to MS.

The first thing is obvious, walking. I have two daughters and when the youngest, Laura, continually jumped out of her pushchair, I had nothing to grip on to, so I raised enough money through donations and a ceilidh held by a friend to buy my first wheelchair. It was red and I felt reflected my personality. I used this wheelchair when I was out and about although on reflection and now with huge hindsight I should have stayed on my feet.

In our old house I used to walk, sort of, holding on to available furniture, kitchen units and walls. This resulted in my DNA being all over said walls. Whilst I didn’t mind this as it kept me on my feet, it wasn’t so popular with Husband in a Hurry. When we moved to our existing house 25 years ago I started using a wheelchair indoors. Again, I should have looked into a frame or another walking aid to help me maintain an upright position. NB, this is my own fault and I should have fought with more determination to stave off MS. Anyone who knows me knows that I don’t give in easily, it’s called ‘bloody mindedness’.

When I moved here I tried to find a job that would suit me, something similar to the fantastic job I had back in Hedge End. I worked part-time, therapeutic reasons as a non teaching assistant in a secondary school, Wilden. I loved it there. Coming down to East Sussex I tried to find work and I went down many avenues. I don’t think I tried hard enough, because I didn’t know many people here, I had no connections that I could call upon and I didn’t push at the doors hard enough or bash them with my wheelchair enough. I did an access course to higher education hoping that I could fulfil my ambition to go to university. I got a place at Sussex University studying English Literature and Sociology. I only lasted half a term. I didn’t make enough fuss, I didn’t say: “I use a wheelchair you need to support me.” I didn’t go to student welfare and ask for help, I just gave up. I went to college to study for an A’Level in English Literature. I got an ‘N’ grade and I didn’t know what it meant but I’m guessing it wasn’t a pass. I started studying Counselling and I was good at that I did 3 years of a 4 year diploma but I gave up in the 4th year because I didn’t like psychodynamics. A group of us students went to a session in the tutor’s house and I asked a couple of the women to assist me to the toilet. I told them quite clearly not to lift me, just to help me shuffle across, but the following week I was verbally attacked because helping me had hurt their backs. I never went back. After lasting in a supermarket checkout for 3 hours, they told me that it was ‘too difficult’ to shoe horn me into the cashier’s seat, I gave up working.

When Husband in a Hurry retired he had to give up his company car. I’d like to say ‘we decided’ but I don’t think ‘we’ did. He drove when we were out together and I didn’t go anywhere on my own, so I stopped driving. I was getting into the car via a sliding board, however it became more difficult and we invested in a Milford person hoist, which manoeuvres me into the passenger seat. This requires bolts to be fitted into the car itself and ‘we’ only needed the mechanism on one side, not the drivers side. So I gave up driving, too. I told myself: “Well at least I won’t get the speeding fines, or any scrapes and dents, so it’ll be okay, won’t it?” But obviously, it’s not is it?

I’ve learned through all of this that it’s always worth fighting for what I need and want from the rest of my life. I must push those doors harder rattle my chains and bash those obstacles with my wheelchair. I can’t reverse any of these situations but watch out for your toes when I’m reversing in my chair, I’ve grown a thicker skin now!

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Things that we miss – Part One

It’s that time of year again where in spite of ‘Black Friday’, ‘Cyber Monday’ and retail mayhem I think about times gone by.

I was thinking about Christmas trees, from when I was small, Dad would be despatched to buy the tree and Mum would be frantic about needle drop before it

came in the door. In those days, early 70’s, you could only buy one species of tree; the one that dropped all it’s needles! Nowadays there are at least 50 different species of tree. Blue Spruce, Fraser Fir, Douglas Fir, Balsam Fir, Norway Spruce, Eastern White Pine, orange scented trees, white ones, grey ones and all with no needle drop.

Back in the day the tree didn’t come with roots just a sawn off stump and it needed to be placed in a muddy old bucket with brick support at the bottom to shore it up. It was then a family tradition to hold it up straight whilst Dad placed wedges of old offcuts of wood that he had secreted somewhere in the garage in order to wedge this tree in position. The bucket was wrapped in crepe paper and the tree decorating could begin. First, the lights needed to be checked – Oh the fun that was to be had with that, at least one bulb had worked it’s way lose in the past 11 months and 3 weeks and each had to be tested individually:
“Can’t we put the tinsel on?”
“Not until the lights are on!”
“Well can we hurry up!!” Younger family members wailed.

How many of us can remember the ritual of the Christmas pudding? The making of it in plenty of time for it to have it’s weekly ‘feed’, the boiling of it for at least 8 hours and peeking at it in the larder wrapped in muslin and waiting for the Big Day. Or the cake, the dried fruit, the candied peel and the glacé cherries, also fed with brandy, marzipanned and Royal iced. This is the first year I haven’t made one and I feel a bit sad, but no one likes it, apart from my Dad.

I was thinking about Christmas and it made me think of other things I’ve lost. I know for a fact that sitcoms were better in the olden days: ‘Butterflies’; ‘To the manor born’; ‘The Good Life’; ‘Citizen Smith’; ‘Just Good Friends’. Radio shows, I listened to Radio One a lot much to my parents disappointment: Simon Bates’ Our Tune is something I still miss today. Where are you Simon? Radio Two, Terry, Terry, Terry, you were always in my life! You introduced me to “Janet & John’ and I remember your producer, Paul, unable to control his mirth whilst you recounted the tale. Terry’s Old Geezers & Gals, we finally came into the 21st Century by adding ‘The Gals’. The satire of Dave Allen, I was 14 and smirking behind my hands because I shouldn’t know stuff like this and Mum & Dad were watching it too.
The hype over the Christmas No.1 and begging to be allowed to watch TOTP when grandparents don’t really approve of Slade.

Who can remember glitter eyeshadow and mascara? Charlie perfume and Aqua Manda? We had platform shoes, I had a really cool red pair. Flares, cheesecloth blouses, the Farrah Fawcett flick.

Oh the fun I’ve had this afternoon remembering this. Youngsters don’t know what they have missed.

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Andrew, what will Mummy think?

I don’t want to be libelled so let’s take this a bit ‘tongue in cheek’ even though I think this is very serious.

At the age of 14 I have to admit I had a bit of a crush on the Duke of York, but that’s not who he was then. He was just Prince Andrew always rumoured to be the favourite and why that was I don’t know but he was the one who was the best looking. We’re about the same age and I always thought that if Prince Andrew met me he would instantly fall in love with me and we would be happy forever, remember, I was 14 and quite impressionable. I got over it and David Cassidy took over.

I watched his interview with Emily Maitlis at the weekend, there are one or two questions I have to ask about it and that’s being polite, first: shall we start with the question of what my interpretation of ‘no recollection of’ could mean. In my world of TV police procedural dramas the alleged perpetrators always seem to be advised by their slicked back legal counsel to reply ‘no comment’ to every question, implying that they are guilty as hell. ‘I have no recollection of’ seems to be much along those lines, who knows I might be wrong? But Advisors might have been sensible to suggest somewhat more genuine replies, such as ‘I may have met said person, but I really cannot remember that far back’. Second point: Can a person halt his excessive sweating by being in a particularly stressful situation, like being shot at? This has been discussed in newspaper columns over the last few days and Jeremy Vine has enjoyed considerable mileage from the question this week. I haven’t found any answers on NHS Choices, but as they say in all the best courtroom dramas: ‘The point can’t be disproved’ I wonder if the FBI will be able to subpoena the Duke of York’s medical records should they need to?

On a third point and this I feel is quite telling. When our Duke found out about his supposed friend, but not that good a friend; the ‘Plus One’ was embroiled and had been charged with such heinous crimes, why Andrew, did you not finish it by email, text, my people talking to your people, or even just the cold shoulder. No, you flew to New York City in order to break up the bromance because it was apparently, the honourable thing to do. However, whilst you were there you stayed in your friend’s apartment in order to ‘network’ what were you thinking? If years ago I had been breaking up with my Andy, I certainly wouldn’t have been staying with him for four days because I wanted to meet his work connections.

Now it’s difficult to believe that you can recall back in March, 2001 that you were at a pizza restaurant. I imagine that you probably send out for yours, but if you do go to a pizza restaurant, I’m guessing it’s conveniently placed next door to Tramp, however, we’re talking 18 years ago and I can’t remember where I ate last Friday!
My excuse is MS Brain and as a prince I’m sure you have prodigious powers of recall.

Andrew, sorry goes a long way.

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Don’t worry about spelling MS

Multiple Sclerosis, it’s a challenge to spell it and I could have been diagnosed with Lupus, only five letters and two ‘U’s’ simple, but no I had to get something that’s a devil to write. It’s not the ‘multiple’ it’s the sclerosis. People get it so wrong, cirrhosis as in liver cirrhosis which would imply that I have a drinking problem, which I don’t. There’s scholar, there’s cyril, there’s scoliosis. So, I have found another acronym that works for me. MS: Must Shop.

Anyone who knows me or has any scant knowledge can relate to my shopping. I am the kind of person who might have a tendency to think they are saving money by over-ordering an item to invoke the free postage, but in doing so ends up with an excess of products in their cupboards. All of my kitchen storage and larder is full to the brim with groceries that will go out of date before using. I have many oils for cooking; forget olive oil, I have sesame, walnut, chilli, coconut, groundnut, sunflower, and don’t talk to me about dressings! French dressing, ranch dressing, ketchups, mayonnaise – reduced fat of course. Soy sauce light and dark, tamari and sweet chilli to name a few. Sugar is another favourite; caster, dememera, golden, light brown, muscovardo light and dark, icing, golden syrup, maple syrup. Lindt chocolate are kept in business by me. What no one appreciates is that they would have gone bankrupt without my frequent purchases: there’s 90% dark; and 70% of course, there’s cherry, the orange infused dark, there’s lime, sea salt and salted caramel, I like the raspberry and I can’t tell you how much I love the Lindor balls and they come in so many flavours! My weight is struggling as a direct result of this shopping. Let’s just say that the hostess trolley and the sewing cupboard do not do what they say on the tin.

Why do I shop like this, what is my rationale for shopping? I do this because my MS brain doesn’t allow me to remember whether or not I’ve used the last of an item and as I’m not the one doing the preparing, cooking etc, I don’t know if I have too much or not enough of anything. I hate running out, it makes me feel inadequate and as if my disability is defining me. My plan for the future is to compile a spreadsheet of groceries and contain, use up and save some serious dosh. Waitrose be warned!

It’s not a psychological trait but it seems odd to me that MS stands for ‘Must Shop’.

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The older I get, the crankier I get

Steve Wright’s Sunday Love Songs are something of a puzzle to me. Relationships seem to be perfect on Radio 2 on a Sunday morning. Couples delight in each other, they’ve lived through ‘highs and lows and ups and downs’. At the end of the dedication it is revealed that they’ve been together a relatively short period of time. They haven’t experienced Anything yet.

I am getting more bad tempered as I get older, I find myself getting into a high dudgeon quicker and with more intensity than I ever did. This has been noticed and commented on by ‘Husband in a hurry’. I’m not menopausal; too late guys, been there done that. I’m finding it hard to understand why I feel so peeved about trivial incidents. When I was young I accepted compromise more easily than I do now. I didn’t mind so much that things didn’t always go the way I wanted or needed. MS wasn’t such a major inconvenience and so I found it easier to allow for a little discomfort, sitting in a wheelchair didn’t give me any kind of ‘worn out bits’ and my body bounced back because it was young. Unfortunately, I can’t stay young forever, I can hold off the wrinkles on my face and I can cover up the grey in my hair, but bones get weary and muscles complain more than they did.

My temper and my patience is tried to it’s limit these days. I find that I get irritated too quickly and I have to admit that I am struggling to ask why. Why do I get unreasonably annoyed when things are not done when I want them to be done? I used to be patient, uncomplaining and calm, now I am the opposite.

These irritations arrive in any relationship and from being taken for granted (on both sides), there are no rights or wrongs just learning that with longevity tolerance needs to follow.

Steve Wright plays the odd dedication from couples who have been together for decades. Is this because they have learned to rub along together or they accept that they get annoyed with each other and allow for it?

I promise I’m not a grumpy old woman, most of the time.

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I’ve got the builders in…

I just love it when ‘Husband in a Hurry’ goes to work and leaves me to handle it, the builders! I’m sure he didn’t mean to arrange this all on the same day, but that’s how it’s worked out. To be fair, which I try to be, the soffits and guttering should have been finished, but inclement weather has meant it has dragged on to a further week. Cleaning the roof ideally should have been done before the gutters but it is ‘in the family’ ie the guy on the roof is the father of the man replacing the gutters so they should both show consideration to each other, shouldn’t they? I’ve never seen the point of cleaning the roof, I don’t know anyone else who’s ever done that and I thought that’s why it rained.

When that well known double glazing firm fitted our new front door, (think snowy, white topped mountain) six weeks ago, they didn’t quite do the job properly. The frame bowed and needed some repair. They also came today. So it’s been fun for a wheelchair user.

My PA has been good this morning providing tea, chocolate brownies and the loo breaks have been frequent. The number of men at the house today has increased as the morning has passed. Once my PA left the teas have dried up. I can’t fill a kettle or pour boiling water into mugs AND I’ve run out of milk anyway. An able-bodied person would just nip out into the town for more supplies but that’s not going to happen and I don’t think they like plant based milk. By the time one o’clock came I had six guys here doing various drilling, hammering and scraping jobs with no refreshments. I’m sorry but that’s what happens.

It’s surprising how many people in the trade industry listen to Radio 2. 10:20 is the time when everything stops for ‘Pop Master’. I had my whole stairs and landing redecorated last week and Dave listened and this week it’s Terry, fixing the soffits. So, one day this week I stopped and played with them. It was very organised, with 3 columns, written on Terry’s whiteboard. We have to play over 2 rounds because none of us are that good. So imagine this, if you would like, there’s Terry and Scott and Terry’s dad, Bill, in my kitchen listening to Ken Bruce, ready and prepared for whatever he may throw at us. And then the doorbell rings and it’s Waitrose Home Delivery with my groceries and Jean-Francoise. He unloads the shopping and joins in. I think it’s great that he doesn’t feel pressured to leave for the next delivery.

Four grown men of varying ages and a wheelchair all trying to answer a Radio 2 trivia quiz. We are proving that we can answer the questions on pop, to show that we are still alive, they are younger than me so they can do the new stuff but I know the 70’s. Perfect combination.

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A hitch in every port

I’ve just returned from a cruise to the Azores. I’ve been cruising for a number of years. It’s very accessible for a wheelchair user and I’ve had the best experiences on ships. A disabled state-room is large, twice the size of a normal cabin. We have a balcony large enough for a table and two sun loungers. It sounds perfect, doesn’t it? You would be right, it is, until I want to explore the ports we are visiting.

I’ve never visited the Azores before, in fact I had to look them up in an atlas and I was keen to experience them. Our first port of call was Ponta Delgarda. The view from the balcony initially was of the port itself, however, looking into the distance was incredibly scenic, the sea was shades of cobalt blue with the sun sparkling on the water. Rugged rocks hugging the shoreline. The houses further away whitewashed with red tiled roofs, dreaming up bucolic images of a previous time in history before modernisation.

Our tour took us deep into the island. I felt as if I was an interloper in the islanders’ most magical world. The land was covered in wild hygrangeas and the blues and greens gave off an almost alpine fragrance.

We came across a forbidding-looking edifice quite out of context to the surrounding beauty. On it’s perimeter wall was a warning sign advising us not to enter and when we asked our driver what it was and why it was there, he told us the story of it’s history. It was constructed as an hotel by a wealthy property developer who went bankrupt and it fell into disrepair. It’s almost a mausoleum and the fauna is reclaiming it’s hold. The greenery taking back possession as if stamping it’s authority against one man’s greed.

I was almost envious of the people who lived in such beauty. We visited Sete Cidades where we enjoyed the sight of the lake which carried a folklore legend of a princess who fell in love with a shepherd boy, against her father’s wishes. The waters within the lake have a distinct colour change, one side being sapphire blue and the other emerald green. It is easy to believe that the princess’ tears coloured the lake, however, the fact that the lake is a volcanic crater is more scientific but less romantic.

This tour was run by a local operator and cost us one third of the price through the Cruise Line. The hitch in my story is that I can take a tour with locals who can give me a more personalised feel of their home, the downside to travelling ‘off-piste’ is that the ship can leave port on time whether I have boarded or not. The insurance for me is that the ship won’t sale until i have checked in, if I use a cruise-organised tour.
But that wouldn’t be any fun, would it?

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MS Brain

You know me, and if you don’t, you need to read more of my blog. For those of you who haven’t read enough yet, I’ve had MS for 40ish years and its done what it has done so far. Bits of me have been switched off and my memory, short-term, has gone down a long, slow, slippery decline. That is not to say that my intelligence is going with it. I can still spell well and I know 6 x 7 = 42, the Meaning Of Life, for any Douglas Adams fans out there.

My gardener came in last Wednesday and he asked me about a large order I had placed for some shrubs, Purple Beech, to border our front garden. He wanted to know the delivery date and quantity, etc. Husband In A Hurry (HIAH) and gardener were discussing between themselves, the height of the shrubs, they asked me and I’m damned if I could remember! They both looked at me as if I had lost the plot. It’s just another example of how the eraser in front of my eyes removes information which I know I should retain for just such situations:
“Have you ordered my favourite muesli?” HIAH queries I’ve just put my nightdress on for bed, or, “Have I taken my tablets tonight?” They’re not my tablets!

They both think that I must be getting silly in my old age, along with my MS and it’s not that I am losing my wits or cleverness, but it’s my MS brain.

So, if you meet me in the street and I look at you with recognition, I know your face, but I can’t remember your name to go with your face. I will make polite conversation with you, fishing for clues as to where I know you from. I’m not being impolite, you will walk away shaking your head and saying to yourself, ‘She’s lost it, and it’s so sad.’ It’s not sad and I’m not stupid, I’ve just got MS.

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Bad Habits

The sun is shining, I’m sitting on the balcony of a stateroom, whilst cruising to the Azores. We are through the Bay Biscay, past all the choppy waters and I have a cocktail in my hand, it doesn’t get better than this. What’s my face doing? Surely, it should be smiling, why isn’t it?

I’ve got out of the habit. Smiling is a habit, it’s a good one to have. It takes a completely different set of facial muscles to smile than it does to look glum. Smiling is an exercise, but it’s also a habit and I should do it more often; it’s good for me.

Habits are easy to attain. Apparently it takes 26 days to get into one. Bad habits like nail biting, eating the wrong things, smoking, drinking, spending money are all bad, and I would put into that how easy it is to get into a ‘feeling sorry for myself’ frame of mind. Good habits have to be worked on. Habits like exercise, eating properly, drinking enough water and keeping in touch with friends are easily lost and i include my smiling in one of those.

I’m here on this ship and I want to socialise with other cruisers, but they won’t want to converse with me if I have a miserable demeanour. I need to practise the art of smiling.

I was always a good conversationalist and great at mixing with people. Being without a homemaker is all very well but it means that there’s no one else in the home with you, there’s no one around to talk to. I don’t want to use my disability as an excuse but it’s harder for me to get out and meet people. I shop online because it’s easier than the technicalities of getting out, I don’t want to do all my shopping this way, groceries, clothes, Christmas presents, etc, could be so much more fun for me out and about, but I have to close the front door on my own. I need someone to drive me to any decent clothes shops, and that involves paying someone. Getting a taxi anywhere requires an accessible one, booking and planning, which I’m not known for and is also prohibitively expensive! I have always been fiercely independent and I feel that I’m losing it bit by bit. That’s why I don’t smile much.

Don’t feel too sorry for me, I’m on a cruise! If you meet me, remember that I can smile…I’ve just got out of the habit.

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