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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Do I Ever Learn?

There is an old adage that says we learn by our mistakes, but I’m not so sure.

Should we be left to learn from the mistakes that we make, or should our older and more learned, well-meaning peers take control of our lives and save us from making any slip ups in life?

I have gone through my years trying to learn but always failing. At the age of 13 I repeatedly made the same error whilst writing, creatively or in essays. I would often place ‘of’ after ‘could’ or ‘would’ or ‘should’ instead of ‘have’. My English teacher, Mr Rich, gave me 100 lines to try and correct me. I don’t know how anybody else would write out their lines, but I counted the number of horizontal rows and wrote each word in columns until I reached 100. Each one of those 100 were, I discovered the next day, actually incorrect. I came home that evening with 500 lines and have never repeated it since.

Last week, I took my wheelchair for a walk into town. If I take a shortcut and avoid the main road, which I am told is a ‘twitten’in Sussex; it is a hazard at this particular time of year because of fallen blackberries. They drop off branches and get squished on the pavement. Anyone on feet instead of tyres will notice blackberry pips and juice on the bottom of their shoes. Because I cannot see what my tyres collect en route, I bring the detritus into my house and onto my cream carpet. NB: New Followers need to read my previous posts in order to fully appreciate the challenges of entering and exiting my abode. Therefore, it’s very difficult for me to see what is behind me or possibly on the carpet.
As I cannot perform a 90 degree turn at my front door, due to a new front door, which was replaced as a result of the damage that I had inflicted upon it previously. I need to travel straight in over said carpet, make a spin and after closing the front door, wheel into the kitchen. It wasn’t until I thought I might like to watch a bit of cricket on TV that I saw what I had done. I tried, goodness knows I tried, to remove the stains and the pips from the carpet, firstly with the vacuum cleaner. However, each time I moved it appeared there was more to deal with and a vacuum cleaner is unyielding when in a wheelchair. What I didn’t know and couldn’t see was that the blackberries were caught in the tread of my tyres and were dropping more devastation as I went. I needed help! I text Daughter No.2 and asked her if she would mind just popping in to aid me. She came and used her special rescue cleaning which involved bleach. Not a good idea on a wool carpet!

Next day my carpet man, Steve, who is known as My Saviour, told me to replace my carpet with wood floors. He has also told me frequently, to only use water when cleaning my carpet.

In this episode, my mistakes were plentiful, firstly, I knew there were squashed up blackberries along the twitten. I should have checked my tyres before entering my home. Secondly, thinking that I could cleanup on my own is foolhardy and I should know better. I also know that I should never put bleach on the carpet when I have been told not to!

So, do I learn by my own mistakes? I’ll leave you to make your own judgement.

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What shall I take on Holiday?

In the halcyon days before MS all I needed to pack for a holiday was my passport, ticket and money. OK,  I’m older now, not wiser but the luggage has got heavier and the allowance is lighter.  BMS (before MS) it was so easy, I must confess that sun cream wasn’t on my radar and worrying about getting bitten by large flies didn’t occur to me. AMS (after MS) small things like that have become larger. I am quite conscious that if I get bitten I might develop an ulcer on my leg or wherever it bit me. So we need a robust First Aid kit! My digestion is affected by paracetamol, but ‘Husband In A Hurry’s’ blood pressure can’t tolerate Nurofen (a UK brand of Ibuprofen) so we have to take both just in case of hangovers or dehydration, both of which are common on cruises. My MS has developed into quite high maintenance now. I need a lot of stuff, pain killers for trigeminal neuralgia, blood thinners and statins because they ‘might’show some stability in secondary progressive MS. A catheter; just in case, a complete new anal irrigation system; just in case and extra clothing; just in case. As you can see, my case is quite heavy!
I pack extra of almost everything, I have a tendency to spill things down me, I knock things over and I bump into things a lot. So I need spare tee-shirts and surplus trousers. On cruises we change for evenings, which means Day Wear and Posh Stuff.

As I start packing, five weeks before we go, my MS brain means that I’ve forgotten what I’ve put in my case and requires me to unpack and repack on a fairly frequent basis. I rely on PAs to help me, but even though they are great I don’t trust them like I would myself and as a result I’m sure I take too much in the way of clothing.
I always think that I might need three jumpers even though we are going to the Azores, which are supposed to be warm, but you just never know. Despite there being three thousand passengers onboard I feel that I need to wear a different outfit every evening, no one will ever see me twice on this adventure!

The most important things however, are not my clothes. The cruise will not be a disaster if I need to have clothes cleaned it will, however, if my super-pubic catheter becomes dislodged or damaged.

Who knew that my life would ever become so dependent on hoists, commodes, ramps and ‘disabled accessible’ cabins. MS is an invisible disease, people see the wheelchair, but they don’t see the pads I have to wear and they aren’t witness to my personal care and I don’t just mean getting dressed. I never expected to be hoisted out of bed in the mornings, but despite all of this I will never lose my self esteem or stop cruising!

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Shopaholic, me?

I’ve always loved shopping, I had my first weekend job when I was 14 and the thrill of having money to spend has been with me ever since. I’m very eclectic in what I buy, it’s not always clothes or shoes or handbags. I can get just as much pleasure from buying groceries. Strange, or peculiar to think that I can get just as much enjoyment from a bag of pasta than I can from a new charm for my Pandora bracelet.

Is this an MS thing, my obsession, or is it deeper?

I had my hair cut and coloured yesterday. It wasn’t cheap, but when I came out of the salon I thought it was money well spent. I came home and I should have been quite happy to watch some cricket on TV. For some reason, known only to me, I turned on my computer, I clicked on Waitrose Groceries and spent £60, minimum order, on food that I did not need. When it arrived this morning, my PA was instructed to find more room in my already bursting cupboards. If I had saved that £60 I would have more to put towards the next haircut or a new handbag.

I need someone to stop me from spending money. They have tried. My youngest daughter has offered to help me once a week in order to decrease my extravagance, my PA’s have come up with ingenious ways to help, such as; sitting with me or looking around the kitchen and utility to let me know what we’re running short of. One of them has suggested meal planning for a whole week and another has given me a magnetic shopping list pad, which is attached to the front of my fridge. All of these are incredibly helpful and should curtail my profligacy, however, I rebel as I feel I’m losing more of my independence if I stick to their plan, well intentioned as it is and I end up ordering more. When the delivery comes and they put it away they always want to know why there is more chocolate again. Cadbury’s are making a ridiculous amount of money out of me!

I need to ask myself, or a therapist why I feel compelled to shop. Do I feel that my autonomy is compromised? How far back does this date, my need for a thrill? This is a compulsion or even an addiction, but I’m not sure where the answer lies. I could spend more money examining what issues might be hidden under the surface of my life, but I can think of better things to do with it!

I understand that there is a website called ‘Go Fund Me’ which might help me to finance my dependency but I feel that might be taking things just a bit too far. Instead, I will be linking my blog to Amazon, which might make the odd recommendation to which you might click on or even purchase and generate a little revenue for me. If anyone wants to understand some of my habit a good link is ‘The Secret Dream world of a shopaholic’ by Sophie Kinsella.

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