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.