Don’t blame MS

MS isn’t all its cracked up to be, for me personally it’s reared it’s ugly head, even though it’s not me who is incapacitated. Husband in a Hurry hurt his back just bending down to his sock drawer, three weeks ago.  It’s amazing how much it has affected my care.

He has been unable to get me on to the stairlift, which is needed because we live in a house and I’m wheelchair dependent.  One might ask why we live in a house still, but that’s a whole other story.  I need to be upstairs as we have no showering facilities downstairs.  For two or three days, my daughter came in to put me to bed, but it was beginning to affect her own back which will not do as she is a mother of small children and holds down a job. At the suggestion of Adult Social Care, we moved all the dining room furniture that could be moved out and replaced it with a hospital bed! An offer of respite was also made in case the bed wouldn’t fit.  So now I’m sleeping downstairs, showering has become an every other day event.  This involves hoisting me on to the stairlift seat, which requires two people, one to pull me back on the seat safely and one to lower the hoist.  I traverse up the stairs and transfer to a shower chair, which involves my daughter moving me from stairlift to shower chair as best she can, protecting her back.  I have asked for a hoist at the top of the stairs, but it’s been pointed out that if one castor were to be balanced over the top stair, not only would I fall downstairs but the hoist would crescendo down on top of me.  This is a freestanding mobile hoist as the layout of my first floor does not allow for a ceiling tracking hoist.   You can see how complicated this is getting, can’t you?

I have never let MS take control of my life, however, this is becoming a farce.  I am steadily losing control of my life, my choices and options are falling further away from my grasp. It’s things like not being able to choose which clothes I am dressed in; because they are upstairs and I am not.  I cannot access my hair and tooth brushes and I hate asking for them. I cannot independently get myself up in the morning, or put myself to bed at night.  When a member of my team is unable to perform the tasks required to help me, it highlights how reliant I am on others.

No one is to blame for this, it’s a case of reworking my lifestyle.

How can I make life better? Should I ask for more help, which doesn’t sit well with me and lose more of myself? Or should I take back command?

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Friends Un-reunited

I’m sort of writing this book, its about my formative teenaged years.  A big part of this time is school.  A lot has happened in my life since I left school at age 16 with grand ideas and big plans, but that got waylaid by love, which is suitable bearing in mind it’s ‘that day’ again.  Because life got in the way, I wasn’t very good at keeping up with my friends from school days; I’ve got one schoolfriend left and she’s busy in her life and a long way away from where I live now.

I went straight into Waitrose when I left school, because all my school friends were working there and I loved it.  It was thought that I was not taking a career seriously enough and having far too much fun, which you’re not supposed to have at work, so I buckled down and got a proper job in the Inland Revenue, in HMRC.  I was bored as hell there and I spoke to a sister of a schoolfriend, who told me about her job in Lloyds Bank, she encouraged me to go and talk to her manager and the rest is history. I met ‘Husband in a hurry’ although he wasn’t in a hurry then, he took me to football matches on dates, we got engaged; I couldn’t wait for the ring and we walked down the aisle together.

We bought a house, we became parents and I was diagnosed with MS when I was almost 23.  It turns out that my GP knew when I was 19 but didn’t say anything to me.  Two children and a husband and we are 40 years down the line and I need to make contact with school pals, they can help fill in some spaces in my MS brain.

You won’t believe how hard it is, I’ve tried, I’ve tried.  It’s like school never happened.  I must admit I’m getting a little paranoid.  I keep thinking that they’re all in touch with each other and I’m not included, which takes me back to the school days when I felt that everyone was talking about me behind my back.  I don’t think they are, but my irrational mind says otherwise.  Now, I know that one of my youthful boyfriends lives in California we were in touch on facebook for a while and then he unfriended me,  why Anton? Why? Girls get married and change their names which makes it hard and I’ve searched but to no avail.  I have Tweeted Romsey Advertiser and libraries in both Chandlers Ford and Romsey this morning in the vain hope that they might be able to help.

If I don’t hear anything soon, I’m just going to make stuff up!

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‘Old Records Never Die’

HMV has been in my life since I was about fifteen years old, which is why I was so pleased to hear that it has been saved from administration, again.

As a teenager the store would pull me in, it was dimly lit, almost daring me to go inside with edgy music playing.  Music I’d never heard before and definitely not The Osmonds.

I always shopped in packs with friends and we would glance at each other, shall we go in? Is there anything that we would want or could afford. It’s a bit scary because there are bigger boys in there, with jeans, long hair and t-shirts emblazoned with their current favourite bands; bands we’d never heard of. These boys aren’t the sort   we were at school with, they were alternative; they were boys we wouldn’t take home because Mum and Dad wouldn’t approve.

The feeling was that we thought we were being looked at.

“Stick together, don’t leave my side”

There were racks and racks of vinyl albums, this was a time before CD’s, sterile CD’s and cassettes, albums seemed a little bit grubby even though you weren’t allowed to touch them.

I didn’t know where all the singles were kept. Perhaps they don’t have them here, maybe they only sold albums.

We would have been approached by one of those aloof, skinny guys. He asked us what we were looking for, I wasn’t sure that I wanted to tell him that I’m looking for the single that is Number One; it might not be cool. But my friend Mary said:

“Are there singles here?”

Then he said: “Why do you want to waste your money on singles? It’s much better to buy the album”

He looked like the kind of guy who could afford albums, but we’d saved up and the only way of getting something to Number One was buying the single!

I know I’m buying my music on Amazon these days, but I wish I didn’t have to.  The experience of shopping in a record store, not being certain about what you might like to buy, and browsing for new music is one of the experiences never to be missed.

Eight years ago, Hailsham lost its independent record store.  Tony, the proprietor, knew everything there was to know about music: classical; vintage; jazz and rock, he was your guy. He introduced me to Jack Johnson and Della to K.T Tunstall. If I went into his store with a lyric phrase, he knew where it came from.  We independently tried to save his store to no avail! Hailsham is poorer for the loss.

For all Tony was good, unfortunately accessing some of the rarer music catalogues was difficult for him and that’s where Amazon excels. Because of the Marketplace Sellers there is a requirement for music that cannot be easily sourced.

Even so I am grateful to Sunrise Records for saving something so precious and familiar.


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My grandchildren are young and we allow mispronunciation when children are cute and  it sounds very charming. At what point do we correct?

Henry and Meadow came for dinner on Monday. We had lasagne and it was always going to be a struggle to ask a six year old and a three year old to eat it.  Earlier in the meal I was informed that there was no way Henry was going to eat it because it had ‘vegebells’ in it.  After much coaxing we managed to eat two thirds of it and Meadow seemed happy with it.  This got me to thinking and remembering childhood ‘pisspronounciations’ aka David Brentisms.

Meadow calls our family her ‘flamly’ and Laura always loved ‘lellow’ as her favourite colour.  Some mispronunciations in adulthood annoy me enormously! When I was a girl of thirteen years old, I wrote an essay in which I consistently wrote ‘should of’ and ‘could of’ instead of ‘should have’ and ‘could have’.  My English teacher, Mr Rich, gave me one hundred lines to write, I wrote each of these lines wrong! He gave me five hundred lines and I’ve never got it wrong since.  I am irritated beyond belief and I correct fiercely anyone who gets it wrong.

I come from a background of speaking correctly and I find it very difficult to be in a situation where mispronunciation is a given.  When somebody asks me if I have “sin the latest film”, or “bin to the new shopping centre” I am perplexed.

“Yes, thank you, I have seen the new film and I have been to the new shopping centre”.

Someone close to me has always had specific words that don’t come naturally to them.  I have always connected ‘pacific’ to an ocean, however they have particular challenges in regards to that word.

I have been diagnosed with MS for forty years, in that time it has been labelled with many different names, but my favourite by far is ‘multiple cirrhosis’.

My liver is not YET pickled, but give it time.

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Wrong if you do, wrong if you don’t…

Has life got a bit silly? I’m a feminist and I am in total admiration for the women who gave up their lives to make sure that we had the vote. However, I’m beginning to wish I didn’t have one, because if I fall for the diatribe that prospective MPs want to give me in order to gain my vote, I expect them to behave when they get to Westminster. The past few weeks have shown me that MPs are no better than children in the playground. After the result of the referendum, it would have been a good idea if we had taken a contingency of MPs, remainers and Brexiteers, across all parties, to Europe in order to negotiate a good deal for Britain. If we had taken on Michel Barnier and Donald Tusk with a balanced and comprehensive solution to leaving Europe, we might possibly have had a result by now. Instead, we are left with egg on our face, most of Europe laughing at us, and we’ve shown ourselves to be the lesser country that we’ve become. It’s a little like closing the stable door after the horse has bolted, when Theresa May now wants to hear the opinions of all parties, after she has lost the vote. Also, Jeremy Corbyn doesn’t want to join in her gang, because she won’t say definitely no to no deal. I would accept that they are sparring partners, and that Tories and Labour will always be antagonistic to each other, but these are difficult times, and surely it would be obvious to anyone with any common sense at all to talk and communicate for the best deal for this country. I know I’m not the only one who thinks this; almost everyone I talk to in my daily life thinks that the behaviour in the House of Commons at the moment is shameful to our democracy. We would be better having a military coup.

What I would like to know is, will I still be able to buy continental quilts after we leave? Is there anyone in Europe who can tell me?

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Magic Moments with Meadow

Can you tell the difference between an adult and a grown-up? I’ve reached the grand old age of 60 and I am a grown-up, whilst Husband-in-a-Hurry is older than me and he’s an adult.  When my 3 year old granddaughter found that she could do creative things with the exciting contents of ‘Nonna’s Activity Drawer’ the adult would have covered the worktop in newspaper and used an old shirt to protect clothing from glue and glitter! The grown-up (Me) didn’t do that.

The pleasure on Meadow’s face when she discovered I had six, I said SIX, unopened tubes of glitter AND school glue was exquisite.  We took roles: I was the ‘applier and spreader-outer’ of glue, mostly on to the paper and Meadow spilled the glitter, mostly on to the glue.

I could feel the presence of ‘the adult’, his internal mechanism disapproving and trying very hard to contain the enthusiasm of ‘grown-up’ and granddaughter.  Meadow and I started with the navy glitter and made a picture for her mummy, it was more just a splodge of glue but she liked it.

“We’re making a picture for Daddy now” but naturally we need a different colour glitter. “What colour would Daddy like?” I ask.

“Daddy would like purple!” Meadow replies.  The ‘Adult’ says: “Why don’t you use up the colour you’ve opened?”

Meadow replies: “It’s all gone!”

Now it’s on the floor, it’s in my chair, it’s on our clothing.  Daddy’s purple picture is finished and now we need to make a picture for Koby and Lola, the dogs, of course. They want pink glitter!

As those of you know, who spend any time with 3 year old’s, their fine motor skills are limited.  The glitter comes out of the tube in a fountain and the spatula comes with the glue!

At this point, Husband-in-a-Hurry, is losing control of his grandfatherly demeanour; he wants to get cross and clear up the mess but he can’t because he’s granddad. It softens his heart a little when Meadow wants to make him a picture, but she wants to open another colour.

If this wasn’t rewarding enough; the delight in creating something for those she loves, the fun we had in spite of the dark glares from the ‘Adult’, it was the way she sat on my lap and put her arms tight around my neck, that hug will always be with me.


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Christmas Day



When I was a young girl, Christmas was in December. We celebrated Halloween in October, and just a week later, we had bonfire night. Fireworks seem to be on sale most of the year, now and Christmas starts in September. I’m the worst offender, as soon as there is the first glimmer of tinsel, I am stockpiling Quality Street, so that I’m prepared for the big day. This is utterly ridiculous. Everyone gets into a complete panic early and it spoils the festive feeling. We all join in the retail fallacy of needing to spend money as early as possible.


I’ve been doing this so long and I don’t know how to stop. There must be a way. It seems as if everyone gets caught up in the need to wish the next celebration or occasion to hurry along, and then on New Year’s Eve, we all say, “I don’t know where the year has gone.” Do we ever ‘smell the coffee’ anymore? Instead of anticipating the frantic spending spree which leaves us exhausted and unable to enjoy January, with credit card bills collecting, we should just leave Christmas back where it belongs, and enjoy the advent calendar in December.


In America, they celebrate Thanksgiving the second to last Thursday in November, something to do with pilgrims and colonisation and turkeys. I’ve never really understood it, but I guess that’s America. Then they exported to us Black Friday, which is the day after, as if they haven’t spent enough money on Thanksgiving. Amazon say that it starts on the 16th, and husband in a hurry says it starts on the 23rd. It’s a time when online retailers can persuade us to buy the things they haven’t been able to sell all year, at a discounted price. As if that’s not enough, they give us Cyber Monday, after Black Friday to try and persuade us to buy more ‘gifts’ for people we don’t especially like. I can’t understand or even enjoy Christmas with this much pressure.


And as for the food, well, where do I begin? I’ll make lists of all the provisions I need to get me through Christmas, but the shops are only closed for two days, and there’s always a Costcutter. I will book Christmas online delivery slots as soon as they open. I end up throwing away food, which I can’t afford to do, and which offends my morals, because there will be so many people who won’t have any food on Christmas day. My grandma used to tell me that another mince pie meant another happy month, well I’ve probably eaten enough to be happy for the rest of my life.


Why do we buy Christmas crackers, can anyone tell me? They’re overpriced, they don’t really make much noise and there’s a very bad joke inside. We collect together the mini pack of playing cards, the magnify glass, which no one can see through because it’s so tiny, the jumping toy, that generally lasts about five seconds, and there’s a lot of wasted paper debris, which goes in the landfill, because it’s non-recyclable.


This morning, my daughter told me not to waste my money on cards, because she doesn’t like them. She opens them, reads them, throws away the envelope, and on the fourth of January, disposes of them, because my grandson has a birthday on the fifth.


I really wish I could break out of this cycle. It bothers me a lot, and it seems to get worse and more intense every year. Who’s the turkey now?

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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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