The Elves are Excited!

Christmas is coming

It’s almost here

Watch the snow fall

See the reindeer

 

The elves are excited

They are loading the sleigh

With wonderful presents

For Christmas Day

 

Mince pies and pudding

With lashings of cream

Lovely chocolates

Oh what a dream!

 

The turkey is cooked

The choir is singing

The crackers are pulled

The bells are ringing

 

Mistletoe and holly

Sleigh rides and reindeer

Santa has been

Christmas is here!

 

War

The Great War was the war to end all wars.
It didn’t.

There was a Second World War.

This must not happen again, they said, when it ended.

The United Nations was formed
To unite nations in peace.

But now they seem united in war.

Is the world entering a Third?

The lessons from the past have been forgotten

Power is the only winner.
Arrogance is repeated.
People die.

Where?

Where do you go when no-one wants you?

Who do you turn to when you have nothing?
When everything you owned has been destroyed.

The line between life and death becomes thinner

The need for food and water ever greater
And the journey to safety is fraught with danger.

How do you comfort your children

When you are as scared as they are?

When the Convention of Human Rights no longer seems to apply

When the United Nations are no longer seem united

And the European Union is in disarray.

When the only thing left to lose is your life

And nobody is willing to save it.

Where do you go?

The History of my Hair

My hair is curly. Very curly. It has a style all of its own. I get my hair from my Dad. I have vivid memories of him standing in the living room, in front of the big mirror above the television, combing his short, curly, dark hair. It looked fine on him. But why did I have to inherit it?

I hated my very curly, short and, layered brown hair. It hasn’t always mouse coloured. There’s a photo of me aged about two, with blond curls. “You look like Shirley Temple” Mum used to say. “Look at those lovely ringlets.”

 I didn’t want to look like Shirley Temple, I didn’t want ringlets and I didn’t want short, layered, curly hair. The layers made the curls even curlier. I wanted long, straight hair that would do as it was told.

 

But no. Mum insisted I had it short. “It’s easier to manage,” she said. “It looks lovely. People pay hundreds of pounds to have hair like yours.” So what! I still didn’t want it. And worse than layers, I had a fringe. Curly hair gives a new meaning to the word fringe.

I was eleven before Mum stopped insisting my hair was cut the way she thought it should be. So I grew the layers out and I brushed it to death to make it go as straight as it could.

 

Brushing my hair made it go frizzy and big. I looked like Crystal Tipps from the cartoon Crystal Tipps and Alistair. It looked all right on her. I’m not so sure about me. But it was still better than short and super curly with little ringlets. And big hair was ok. It was the 80s.

I still had the fringe though. I tried to sweep it back, Diana style. It preferred parting in the centre and curling round to the middle. I tried to grow it out but it would get so far and curl into my eyes. It irritated me so much that I gave up, and had it trimmed to what to everybody else would have been a sensible length. Not my hair. It sprung up, the curls got tighter and it sat perched on the top of my forehead.

Then I travelled around Australia, found better things to spend my money on than hair cuts and discovered Alice bands. The fringe grew. By the time I got home, a year later, it was level with my chin. I had it cropped that length all the way round. No fringe made all the difference. I stopped hating my hair.

When I began nursing, I started to grow it so I could tie it back. And, being a student, haircuts weren't high on my priority list. By the time I finished my training, it was down to my waist.

I had secretly always desired hair past my waist. But split ends extended halfway to the top and the only time I had any chance of unknotting it was when it had half a bottle of conditioner in it. So, even though I loved its length, I had about ten inches lobbed off, it sprung up another four and  I was back to a bob. Inside I cried, but it had become difficult to unknot. I was qualified now; it was time for a fresh start.

Over the years I have learnt that the best thing to do with my hair is nothing. Every so often I feel like a change, but I dare not alter the style. I dye it different colours instead. It’s been various shades of purple, pink, red or blonde. I let it grow as long as it will allow me to, and I’ve learnt to embrace its wildness. I never use a brush and I never use a hair dryer. Brushes and hair dryers are evil frizz creating machines.

And the ringlets? I like the ringlets now. They’re long ringlets and I think they’re my hair’s best feature.

 

The Garden in the Sky

Which is the more bizarre? A garden at the top of a building or a building that appears to be wider at the top than the bottom? And can you really call it a garden when it is completely enclosed within the top three floors?

Having whizzed up thirty-five floors, the lift opens into a wide space edged with floor to ceiling windows. The greenery extends along two opposite sides of the building, lining the stairs rising two further levels. You can deviate from the stairs to be between the flower beds under the trees. The view is from a different level, depending on which side of the building you are and the three floors are open plan. It feels very spacious. Although it is busy, it doesn’t overcrowded and there is a relaxed atmosphere. There is a mix of families, business people and tourists.

Directly across the river is The Shard. It erupts from the buildings around it the way its namesake of glass stabs into a wound. St. Paul’s was easier to spot than it had been from the taller building. All the iconic buildings were easier to find and clearer to see. But then, we were only half as high.

Dotted around the lower level are chairs and tables, other seats and old bicycles. They are fixed to the floor and painted entirely yellow, green or orange. There is a bar in the middle. We bought expensive cups of tea in paper cups. The seats are not designed to make you stay long. But the view is good. And for a free space, although you do need to book tickets, it is a pleasant way to spend a couple of hours.

Eighteen months on and where are we now?

It was a 9am start for the Eighteen Month assessment. That meant an early start and a train journey at peak commuter time. Thank goodness I take my own seat with me. Actually though, I live far enough down the line that the train is still half empty when I get on it.

It was a different story when we arrived into London though. The man with the ramp couldn’t place it. There was a never-ending stream of people getting off the train and hurrying down the platform to the exit. He smiled. “It doesn’t help that they don’t look where they are going,” I observed. “Quite!” he said.

When I arrived at the Centre the doctors were ready for me. Usually I have to wait for them to arrive. So it was straight into the EDSS (Extended Disability Status Scale) assessments and all the others. I do hate the nine hole peg test. My fingers would not behave themselves. They kept trying to throw the pegs across the room, instead of picking them up and putting them in the holes.

I mentally monitor the changes since the last assessment. I’m not supposed to discuss it with the assessor as he is supposed to be doing so blind. That’s the point. It’s meant to be objective. But it doesn’t stop me doing so.

What’s interesting is the fluctuations. If I’m having a better day than I was the last time I came, then there seems to be a slight improvement. At least, it seems that way to me, although it usually turns out not to be enough to register on the scale.

But I’m sure the pegs took longer. It was definitely more frustrating.

My best test, despite my difficulty in holding the pen, was drawing the six shapes from memory after having looked at them for about twenty seconds. I had to do that three times, then remember and draw them again after a fifteen minute break. I got full marks and Mark was amazed. “You are so good at this,” he said. I’ve always had a good memory. That’s one thing MS hasn’t taken from me.

 

The things cats eat

When buying cat food, have you ever considered the choice of flavours? Beef. Really? When was the last time your pet caught, killed and ate a cow? Then there’s lamb. I can see the attraction. They are covered in wool. Although my moggy would be more interested in trying to catch a sheep to play with its coat, than trying to eat its owner.

Whoever thought cats might like to consume such things? You never see mouse flavour cat food. Or sparrow. That makes far more sense. But then again, what do I know? My cat loves Thai Sweet Chilli crisps!

MS Walk 2015

It was bright and sunny as Julia and I made our way to the start and the registration. We knew we were in the right place, because Butler’s Wharf, under the shadow of Tower Bridge, was awash with orange t-shirts. Everyone was excited, taking photos and getting themselves ready. We put an orange legwarmer on each arm of my scooter and one on each crutch. I’d bought them on Amazon for 20p a pair! I couldn’t resist at that price. We tied orange ribbons to the basket and stuck flags in the bag hanging off the back. I think my orange leggings was possibly overdoing it a bit, but what the hell. My orange MS nails though went down a storm!

Off we set, under Tower Bridge, round City Hall and onwards. First stop... coffee. Great minds think alike. We weren’t the only MS Walkers in the very long queue. We got talking to a whole family on the walk. Refreshed, we carried on. Time for a photo stop to post on Facebook. Those we overtook earlier passed us by. But we overtook them again further on when they stopped. By St Pauls we met the first MS Society stewards, cheering us on and waving orange inflatable sticks with the Society logo. Weird, I thought. What’s wrong with flags?

Walking in the other direction were other people on sponsored walks for diabetes and Refuge. Their t-shirts weren’t as bright as ours. I love walking along the Thames Path. It’s always busy with so much to look at. When people had asked me how long the walk would take, my estimate had forgotten to take that into account. It’s a walk to take your time over.

As we approached Vauxhall Bridge, I was pleased to discover that the tide was low enough to be able to see the climate change sculptures. They were somehow smaller than I imagined but beautiful to see. They were a temporary exhibition until the end of September, in view of Westminster across the water and slightly round the bend. When the tide came in, they disappeared beneath the Thames.

Crossing the river, we were into the final stretch, along to Battersea Bridge, back across the river, in view of the now abandoned power station and into Battersea Park for the finish. 10k is a long way, but it felt good to have done it. Best of all, when all the pledged money comes in, I will have raised £623! Thank you to all those who had faith in me, and thank you to Julia for joining me on the walk. It was a wonderful day and lots of fun. Here’s to next year!

Sweet Dreams

Strawberries and Cream. Remember those sweets? They came in big jars which the shopkeeper tipped into old-fashioned scales before pouring them into a little paper bag. “That’s ten pee please.” Even better were Rhubarb and Custard, or Cola Bottles. Pear drops were no good. They were too heavy. You didn’t get many of them for 10p. Best were the really tiny multi-coloured pips. You could fit loads of those in your little bag.

What about Black Jacks? You couldn’t eat them in secret. A black tongue gave you away every time. But they were oh so delicious. Fruit Salads were good too. Same size as Black Jacks but without the black tongue. Ha’pny chews that became two for a penny when they got rid of half-penny coins. Competitions to see who could get the most sherbet to stick to their Liquorice Torpedo. And Traffic Lights. Oh what fun you could have unwinding the liquorice circle bite by bite.

The chewy, white Pacer mints circled with green stripes. The hard boiled fruit squares of Spangles. Sugar sweet necklaces that grew thinner as you ate your way through the beads, until all you were left with was the elastic. Checking what your Love Heart said before savouring it, as you read Jackie magazine.

But best of all, was hunting for every last toffee in Nan’s Christmas tin of Quality Street.

 

 

Of course I want to continue

Compared to the marathon round of assessments at Month 12, Month 15 was a doddle. It was just the one appointment at the Research Centre. Even so, it was still going to be hard this time.

I’d had a progression in the intervening weeks. Initially, I’d thought I was just having a bad day. It just never improved. My balance had worsened and I was falling over more, mostly at home, when I was in my comfort zone and taking less care. I had started to use two crutches (instead of one). And for places I used to park outside of and walk into, I now used the scooter. I hoped it was more a case of my being tired of struggling than a shortening of my walking distance. What changes would there be in my assessment scores? I wasn’t going to be able to ignore them and pretend it wasn’t happening.

It was all rather depressing, not helped by torrential rain on the way there.

 

On the plus side, I had an interesting discussion with the lead consultant about the trial in general and about MS. Despite how I felt that day, for the most part, being part of the trial has been a positive experience for all sorts of reasons. It has little to do with the effect the drug may or may not have and regardless of whether I’m on the medication or the placebo. It feels constructive and hopeful. I’m doing something, instead of just waiting for the inevitable. So when he asked if I was happy to continue with the trial, despite my little hiccup, the answer, of course, was “Yes”.

 

 

A Glimpse of Ickworth House

“Café first,” said 3-year-old Neve, as we arrived at Ickworth House, Park and Gardens. “You’ve trained her well,” I commented to Jo.

Approaching the house we decided we should have a quick look inside before the café. I scootered up the ramp into the Rotunda of the main house. The National Trust ladies looked dubious. They weren’t sure my tiny scooter would manage the house without damaging anything. “Would you mind transferring to a wheelchair instead?” they asked. “You can use one of ours.” I looked at my sister. “If you’re happy to push it, I’m happy to sit in it.”

The ladies guided us to the lift to go down to the servant’s quarters in the basement. It was all rock with little daylight. Neve was scared. “I want to go out.” She held onto Jo’s hand. But we had lost the lift and did an entire circuit of the basement looking for it. Through the large kitchen with its sparkling copper saucepans and the servants’ accommodation. When we found the lift, it was hidden behind a wooden door and when it arrived back at the first floor, it opened into a cupboard which, like the lift, wasn’t much bigger than the wheelchair.

Having escaped from the cupboard, we did a speedy ground floor circuit of the Rotunda, along corridors with curved floorboards. There was ornate furniture in the Drawing Room and Library, with heavy, plush curtains framing a views of the gardens. In the foreground was a manicured lawn with a backdrop of wild flowers. But we didn’t stop. Neve was still spooked from the basement and wanted to leave, so we abandoned going upstairs and headed for the café.

 

We sat at a table on the terrace in the warm sunshine and watched a family playing croquet on the lawn. After tea and cake, we explored the Italianate Gardens behind the house and came across the entrance to The Stumpery. Inside, was a magical world. Amongst the trees and ferns, upturned tree stumps were displayed like sculptures. The roots spread in wonderful patterns. They were everywhere you looked. Big stumps, small stumps. Some in small collections. Some holding their own. Sunshine peered through the branches creating patterns of light which speckled the flowers, shrubs and footpaths around them. Neve was enchanted. And so were we.

It made for a wonderful end to our glimpse of Ickworth.

What gives you the right?

I didn’t ask you to move in. You arrived unannounced and just waltzed into my life. You don’t let me waltz any more. I used to love dancing. Ballroom and Latin, and the rhythm of Reggae. You stopped all that. Now I can only watch and try not to cry.

You don’t let me walk either. For hours I wandered through hills and forests. I climbed over rocks. I looked at the scenery. Since you joined me, it’s too difficult. It takes all my concentration to stop you throwing me off balance and send me crashing to the ground. I don’t know if I can pick myself up.

What gives you the right to take over my life and control my every move? You’re with me for every second. You made me give up work and shifted my place in the world. You changed how I see myself. You dragged me to where I didn’t want to go. You’re unstoppable like a train with no brakes.

You cover me in a lead blanket of fatigue. You’re clever. I’ve no energy to fight you. You’ve numbed me all over. Fingers too fumbly to hold anything. You give me tremors, fear and uncertainty. Just how much do you think I can cope with?

And yet, despite all that you do, there is one thing you can never take from me.

Words. Words don’t need the pen I can’t hold in order to be written. Words will take me to places you can’t stop me from going to. Words create the worlds I dream of. Dreams are full of imagination and hope. And hope is all that matters.

The Perfect Cup

In the hour before mayhem crashes into the morning, dawn breaks into the sky. Peter is first up. He flicks on the kettle, throws a teabag into a cup and a slice of bread in the toaster. He downs the tea in one and rushes out the door with the toast between his teeth, to eat on his way to work.

Next to appear is Nicola. She takes two dishes from the cupboard, fills them with corn flakes and places them on the table with the milk bottle. She yells up the stairs “Tom! Sarah! Are you dressed yet?” They thunder down and slide into the chairs at the table. Nicola fills the kettle and sets it to boil, then joins them. “Have you got your kit for football tonight?” she says to Tom. And to Sarah, “Remember it’s violin practice after school.” “Yes, Mum. Stop fussing.” They both say in unison. Finishing their breakfast, they almost throw their dishes in the sink, grab their coats and bags and dash out the door.” As usual, they are cutting it fine to catch the bus.

Nicola takes the teapot off the shelf and places a generous spoonful of fresh tea leaves into it. She adds water from the just boiled kettle, takes a bone china cup and saucer from the cupboard and sets all three on the table. She washes up and heats a couple of croissants in the oven. By the time she sits down a few minutes later, the tea has brewed to perfection. As she sinks into a chair and savours a sip from her cup, she breathes a sigh. Aarh…

Whine, Whine, Whine...

Whine, whine, whine. That’s all she ever does. This is wrong. That is wrong. The weather’s too hot. Why did you put that there? It never used to be like that. She used smile and laugh. How did that change? Babies. Babies changed her. Or rather, they didn’t. She was desperate for a child. We tried and we tried and nothing happened. All our friends started to produce. She cried. Why can’t we? What did we do wrong? “Relax” said the GP. “Give it time. You’re trying too hard. It’ll happen.” But it didn’t.

Finally she fell pregnant. At ten weeks, she lost it. She wailed. Tests. IVF. The first two cycles failed. The third one took and at ten weeks, we still had our baby. And at eleven weeks. At eleven and a half there was bleeding. Was this the end?

Whine, whine, whine. That’s all she’s done today. But the voice is a different one now. “Why?” “Why can’t I have it?” “I want it. I want it now!”

We crash on the sofa, exhausted. It’s the end of the day. Peace at last. She’s asleep. Was the trauma and heartache worth it? Of course it was.

The View From The Shard

The weather was as beautiful as it comes. There wasn’t a cloud to be seen and the sunshine was warm. It was a good day to go up The Shard, Western Europe’s tallest building.

As I crossed London Bridge, its sharp point, glinting in the sunlight, emerged majestically from behind the buildings surrounding it.

I entered the building, negotiated my way through the airport-like security and made my way to the first lift. It sped so fast to the 33^rd floor that my ears popped. From there we were directed around to the second lift, which, ears popping again, whisked us up to the 68^th floor and the first viewing platform.

 

Every outside wall was floor to ceiling glass, providing an uninterrupted view across London in every direction. In the far distance I could make out green fields beyond the city. Closer, was The Tower of London surrounded by a green moat, Tower Bridge and HMS Belfast. In stark contrast, the nearby Gherkin and other oddly shaped new office blocks grew out of the undergrowth of smaller buildings, and still managed to look small from so far above.

I was amazed at just how much The Thames twists and turns. To the east, along several bends in the river, was the Canary Wharf building and, another twist later, the tiny blocks of The Thames Barrier.

In the other direction, I struggled to find St Paul’s. It was buried among buildings that are taller than the cathedral. When I finally spotted it, it looked quite snug and settled in its cubby hole. Further west I saw The Post Office Tower and the Wembley Arch.

Going anti-clockwise around the platform, the river disappeared west into the city, then reappeared briefly with a tiny London Eye. I continued round to the vast number of railway tracks feeding out of London Bridge. Then I was back at the river.

I took the lift up a further four floors to the 72^nd and the open platform. Of course it was only open at the top. The glass walls still rose above head height but there was a welcome breeze. Looking up, the centre of the building grew another thirteen storeys to the ninety-fifth. Each level smaller than the one below, until they ended in a point resembling a shard of glass, giving the building its name.

I was impressed. Not so much with the building, but with the scale of the panorama. It had been a glorious view on a glorious day. I had seen it at its best.

 

The Shaun the Sheep Trail

We met our first Shaun the Sheep as we left Fenchurch Street station. This one was called Liberty Bell, was painted in Statue of Liberty green and wearing her crown.

There are fifty of them dotted across central London until the end of May. Then there’ll be another fifty in Bristol before all one hundred gather in Covent Garden in September, when they’ll be auctioned off for charity.

On our way to find the Tower of London Welcome Centre to pick up a map, we found our second Shaun. This one sponsored by the Royal Mint and wearing a large gold coin around his neck. He was standing guard at the top of the hill with the Tower behind him.

Crossing Tower Bridge, we followed more Shauns to the South Bank. We kept bumping into families who had come from the Shaun we were heading for. We were doing the route backwards, sort of. There are four trails to follow but we were doing our own version, taking in a bit of each.

We wandered through Borough Market where I discovered a stall that sold proper Darjeeling Tea. Pure tea leaves, not blended with anything. First Flush, Second Flush, Oolong and White Tea. I was in heaven. I bought some Second Flush Tea Leaves which is the second crop of the season and slightly stronger than First Flush.

Rainbow Shaun was hiding inside The Shard. Others were hiding round corners. “Here he is! This way!” I yelled, spotting another. Each had been painted a different design. Some had names that were a play on words. “Br-ewe-nel” was painted gold and looked very distinguished in his top hat, like Isambard Kingdom Brunel himself.

Across the Millennium Bridge, that no longer wobbles, there were nine all around St Pauls, and in the adjacent streets. Two of them taking refuge in a nearby shopping centre. All were surrounded by families following the trail. We took a bus to Carnaby Street to find the two who were lurking about there. Ben and Holly’s Little Kingdom Shaun was hiding in Hamley’s. We searched the ground floor looking for him. He’s got to be here somewhere.

 

There was another halfway down Regent Street and two more hovering about Piccadilly Circus. At Trafalgar Square, Nelson Shaun had a pigeon sitting on his back, peeking over his shoulder. He stood proud in the shadow of his counterpart on his column. Dusk was falling and we were exhausted, but we had managed to find twenty-five Shauns. And what better way to end the day than with Britain’s greatest naval officer.

 

I feel like a tea-strainer

It the main 12 month assessment at the Research Centre. Sara met me at the door with the sample tub. Good. I was desperate for the loo. Then the round of assessments began. Weight. I was pleased to weigh a wee bit less than last time. I had tried to cut down on the cakes and biscuits. It seemed to be working.

Then it was time for the blood. Or not. When the cannula for the MRI had been removed the week before from my motorway vein, I hadn’t put enough pressure on it and it had bruised slightly. My other veins, which are very possessive of their blood at the best of times, had gone into hiding even deeper than usual. Oh joy. I was also cold. So we decided to leave it for a bit and get the other assessments done first. Sara made me a cup of tea in the hope that that would warm them up too.

It was a different doctor this time for the blind EDSS. He looked very distinguished in his purple paisley bowtie. His first challenge was to sign into the computer to score the assessment. Several usernames and passwords later, I asked him “Do you feel like throwing it through the window?” “I’m very close to it” was the reply. “It’s the same user name as … assessment,” suggested Sara. Ah-ha! Success!

Reflexes, tuning fork, strength, the nine-hole peg test, remembering the shapes to draw them after a twenty second viewing. “How’s the bladder?” “Sending me nuts!” He laughed. “I don’t think ‘sending me nuts’ is an option for an answer”, he said. The dreaded adding up test. You have to add the last number said to the one said before. So… 4, 5, answer 9, 6, answer 11, 3, answer 9, and so on.

Now to try the blood again. My veins were still in hiding. Sara recruited Anna to help. The short version is that three attempts later, the blood finally flowed. And I felt like a tea-strainer.
 

Still as stone and breathing deeply

The next two assessments were the MRI scan, always a challenge, and the Lung Function Tests. You don’t need to fly to make your ears pop.

The MRI was nowhere near as stressful as last year. For a start there was no waiting around. A few minutes after I arrived I was called through and the cannula was put in straight away, so I didn’t feel anywhere near as ill as it had made me feel last time. It was still slightly uncomfortable but that goes with the territory. And even better, I then went through for the scan. The hardest part of an MRI is lying dead still for almost an hour! That’s not just a turn of phrase; dead still is how you need to be for the scan to take a clear picture.

I was all right for the first half of the scan but towards the end I started to fail. “Don’t worry about it”, the radiologist said just before I left. “I wasn’t going to”, I thought.

She slid me out of the scanner halfway through to add the contrast dye through the cannula. “It’ll feel cold as it goes in”, she warned me. “Yes it does”, I replied. “Can I have a blanket too?”

The cannula was removed within a few minutes of the scan finishing, but I didn’t put enough pressure on it and when I looked later, it had bled, leaving a bruise. “Oh flip!” I thought. Usually I’m really good and I never bruise after a blood test. Oh well.

I hate the Lung Function Tests. All the breathing… in, out, keep going, hold, now as fast as you can. That’s what makes your ears pop. Breathing out quickly. I can only do so if I pretend I’m blowing out birthday cake candles. I had to do each test three or four times before she was satisfied that I had done my best. She gave me a few minutes rest between tests, but even so, I was exhausted by the time they had finished. Thank goodness there’s another year before I need to do them again.

The merry-go-round continues

The next assessment was my eyes at Whipps Cross Hospital, not the easiest of places to get to at the best of times. Going by car would be the easiest, but because they put drops in my eyes to dilate them, I’m not allowed to drive. Travelling by public transport is further complicated because I need to take my mobility scooter and so need step-free access. It’s taken three visits but finally I have worked out the best way. One train to Stratford then one bus to the hospital. Except there were problems on the line that day and I couldn’t go that route.

That was ok. There are two railway lines into London from Southend. I’ll get the other one to West Ham and the Jubilee Line or DLR to Stratford, I thought. Err…no. There was no lift at West Ham for the moment. Well there was a third option? I took the train to Limehouse and picked up the DLR from there going, via Poplar, to Stratford. It turned out to be quite straightforward, but my simple journey of one train and one bus had become three trains and a bus, and felt like it took forever.

I arrived five minutes before my appointment. No time for a cup of coffee then.

There was a brief vision test with my glasses on then in went the drops. They stung a little and it was hard to resist rubbing them. But they soon settled and after a few minutes they had dilated my eyes enough for the scan. Look at the green light and don’t blink. Why is that the first think you want to do when someone says don’t? Scan done and looked at by the doctor and I was all finished.

Fortunately for me, my eyes have not been affected by MS and the only problem I have I related to age. I’ve got to that age when my sight is lengthening. I don’t yet read at arms’ length, but it’s coming. Otherwise my eyes are as healthy as they can be. Something to celebrate I think.

There was a short wait for the bus and I was back at Stratford in no time. I was desperate for a cup of coffee and some lunch. Oh look. There’s Westfield. There’ll be lots of places to eat in there and I can do some shopping at the same time.

Les Misérables assessments begin…

Being a full twelve months since the Drug Trial began, the full complement of assessments were due. That meant five trips into London. There was the MRI, the Lung Function Tests, eyes, skin and the usual round of blood tests, questionnaires and EDSS. And like the initial ones, they are in close proximity time wise. Three of them were in the same week! A serious challenge to my fatigue levels.

The first assessment was the skin one. Last year she had inspected every mole, spot and scratch which she then wanted photographed. She was pleased to note that the mole on the third toe of my left foot had not changed in any way. I didn’t think it would. It’s been there forever. Quick inspection over and the assessment was finished. It had taken all of twenty minutes. I was free to go meet my friends. It felt like an anti-climax. Part of me felt what was the point? It had been a long journey for a short visit. I was glad I was meeting a couple of friends afterward to go to the theatre. We were going to see Les Misérables.

As I was travelling with my little mobility scooter, I had booked assistance for when I got to the theatre. It was fantastic. I couldn’t go in the main door because there was a step but they took me round to a side entrance. They took us to where I could park the scooter and direct to our seats. They came to ask if I needed anything during the interval, and at the end, they brought my scooter to me.

The show was even more wonderful than I remember from twenty years ago. I’d forgotten just how much more there is to the story. The cast recording that I often listen to is but a glimpse. It is a powerful tale of society and life in 19^th Century France. Victor Hugo was the French equivalent of Charles Dickens and, like Dickens’ tales, although written over a hundred years ago, Les Misérables’ message is just as relevant today. Tears pricked the back of my eyes when Jean Valjean sang Bring Him Home. In my head I was singing and crying with him.

By the end we felt rung out with emotion. And we had seen the matinee. How do the cast go through all that again twice in the same day? I was exhausted.

One Year On...

I’m back at the Research Centre again. When I started this blog, it coincided with starting the trial of a drug for Secondary Progressive Multiple Sclerosis, and I thought it would be great to follow as it proceeded. Except, of course, that it is only the anticipation at the beginning and the results at the end that makes it exciting. The bit in the middle, the regular assessments are less so, and only happen three monthly. Never-the-less it has so far been an interesting experience and a reference point as to how MS fluctuates over time. The regular ups and downs and the more defined changes.

I have come to realise that, in terms of the research and my assessments at the Centre, I am more of a subject than a person. They look for different aspects of MS than my local hospital does. Being a trial, they monitor every aspect of my health, both physical and mental. Although reassuring, discussing intimate and personal aspects is also daunting. I just have to steel myself, take a deep breath and go for it.

And my relationship with the local hospital, who referred me to the Research Centre as a prospective candidate for the trial, has shifted slightly, in that there seems to be longer gaps between my review appointments. But  my discussions there been more productive. Having to regularly talk about all the gruesome symptoms that I would rather ignore, has made me more able to do so. I'm also more able to think more clearly about the impact of various difficulties because I'm clearer about where exactly those symptoms sit. That's a good thing I think.

Up until now, I have refused to be drawn on whether I think I’m on the drug and what difference, if any, it is having. I’ve had a sneaky suspicion since early on in the trial, but I was afraid to acknowledge it in case my hopes were just that. Was it real or just the placebo effect? Who knows?

So what I think now?

The one thing it has done, and the most important effect, is to give me HOPE. With the trial, if I’m on the drug there should be a slowing of progression. That’s the expected outcome. It is a Phase III trial and the early trials were promising, although they were in Relapsing-Remitting MS. And even if I’m on the placebo, I’m still helping to forward research into treatments. That’s definitely a good thing.

Of course, each person's MS is individual to them. So how do I know if mine is progressing any slower with a new drug than it would without? It is only by comparing the rate of progression, over a significant period of time, of a group of people who are on the drug with a group not on it, that scientists can have any hope of establishing an answer.

However, on a personal level... I do feel like I have been pushing my limits and getting away with it in a way that I haven’t been able to in a very long time. My last relapse, and significant progression, was in 2012, as the London Paralympics finished and before I started on the trial. So maybe…? Just maybe...? There is hope. And that alone, is a powerful commodity.

 

Mrs Overall

It was a typical seaside café, small, with half-a-dozen wooden tables and chairs. But it had an added dimension in the form of a waitress who bore an uncanny resemblance to Mrs Overall.

As we found a table and started taking our coats off to sit down, she came over. “Are you coming or going?” she asked. “We’ve just arrived,” said Amy. “Oh. Well I’ll leave you for a minute. The menu’s on the table.” She waved at it and shuffled off.

The menu was basic. We settled on a cream tea for two. Mrs Overall didn’t seem to be coming back, so Amy went up to the counter to order. The Cream Tea came with a pot of tea. “Could I have coffee instead of tea?” she asked. “It comes with tea” was the baffled reply.   “Ok. We’ll have a cream tea for two but make the pot for one. And a mug of black coffee on the side please,” said Amy. “Do you want a cream tea for one or for two?” “A cream tea for two and a mug of black coffee.”

“That was painful,” said Amy when she returned to the table. A few minutes later, Mrs Overall came across, still confused. “Did you want a cream tea for one or two?”

“And we thought it was us” came a voice from the next table. “When she brought our tea over, she just brought the teapot. There were no cups. We had to ask for them”.

“Oh dear,” I laughed. “I wonder what we’ll get.” As they left, they wished us luck. We were now the only people left in the café.

Mrs Overall came over carrying a large tray that seemed almost too heavy for her. She placed it on the table and dispensed a large teapot, a mug of black coffee, two knives individually wrapped in little serviettes and two plates. On each was a tiny, warm scone, a small pot of solid jam and melting squirty cream that was in danger of running off the plate.

“Could I have a cup please?” I asked. She looked confused. “But you asked for a mug of coffee. And tea for two.” “Yes. But I’d like a cup to drink the tea from please.” She scanned the table. “Oh” she said.

She wandered off and came back with a small cup missing its saucer. Then the sugar arrived and was plonked on the table with a thud. It was just as well neither of us needed it for we had no spoons.

The scone was quite nice and the tea drinkable. After a while, Mrs Overall arrived with the bill and waited for us to find the money. She looked at my jumper and asked “is that a cat on the front? Do you like cats? My daughter’s got cats.” She rolled her eyes and tutted. “She’s got names for them all.”

Jump

Another 200 word story...

Why did I do that? If only I hadn’t. Then it wouldn’t have happened. Everything would be fine. Would those few minutes really have been such a bad thing? I was on a mission. I had to be at the meeting on time. I had to make an impression. I wanted time for a coffee first, to get myself prepared. My career depended on it. I needed to be calm, measured and in control.

She was beautiful. Her hair flowing in the breeze, immense concentration on her face. This is a girl who knows where she is going, I thought. She had her whole life ahead of her. She was at University. The basket on the front of her cycle was full of books. She had a stuffed rucksack on her back. The good girl was wearing a cycle helmet and a high vis sash across her chest. There was another taped across her backpack. But that’s not what caught my eye. It was her long, blond, flowing locks. But I saw her too late.

A split second can change your life. It could have been so different. If only I hadn’t jumped the lights.

Um...

More flash fiction. A story in 200 words...


I’m trussed up in a dark corner and forgotten. My arms are tightly bound together. At last, I get to see the light of day. I go outside. Fresh air! I’m unbound and can open up to my full potential. Just for a second, it is wonderful. Then a deluge of water hits me. It is relentless and cold. On and on it goes. Finally, I am taken back inside. I’m given a good shake. Drops of water fly off everywhere. Relief. I can dry out. Or maybe not. I’m bound again, still wet. But at least I’m not hidden.

I’m lifted and unbound. I’m outside again and can stretch, even if I am pounded with more cold water and a fierce wind too. I catch it. It tries to pull me away. I’m straining to escape. No such luck. But this time when I’m taken inside I’m allowed to stay unfettered. I’m not in a corner. I’m spread out in an empty bath in a room with a window. “This is meant to be unlucky”, I’m told, “but it’ll be all right”. Yes, it’s all right. It is definitely all right.

 

Train

We've been doing some flash fiction in my writers' group recently. This is my first effort. A story in 200 words...


She stepped out of the door. Her face stung as the cold air smacked it. But it was a relief to be out. She started walking. She didn’t know where to. She just walked as if in a trance, but with a purpose to get away. At the Railway Station, she bought a ticket to the end of the line. It was a single. She wasn’t coming back. At each stop, the train emptied more people. Nobody boarded. By the last stop, she was the only one left in the carriage.

She sat still for a few moments, gathering her thoughts, if only she had any to gather. Leaving the train, she walked along the desolate platform. The street outside was empty. A little way along was a sign directing her to the sea. She followed it.

She found a wide empty beach. The tide was out, revealing mud beyond the sand. Stuck in the mud, was a small boat. It was tilted to one side with no water to keep it upright. Sad until the tide returned the sea to rescue it.

Who would rescue her, she wondered.


 

Bill

My Mum’s much-loved cousin died early Christmas morning. This is my tribute to him…
 

Bill, with his infectious laugh,

When his upper body jogs up and down.

He greets with a smile and a hug.

Always pleased to welcome

And sad to say goodbye.

Every summer, a party in the garden.

Always the sun shone.

He took charge of the barbeque,

And left Jan to do the rest of the food.

Talking and laughing all afternoon

A grandchild visited all summer,

A different one each year.

Random guests also stayed.

Often from overseas.

Always they were welcome.

Russia. A favourite place.

The scouting movement,

International links

Building friendships,

Sharing experiences.

He was Brother, Cousin, Uncle,

Husband, Dad, Grandad.

Friend.

Lovable and cuddly.

Bill