Countdown to Australia

The Month 3 assessments have been done. I don't need to go back now until Month 6 (always assuming nothing untoward happens). The flights are booked, the scooter has been organised and approved by the airline. I’ve even got a second prescription after something of a hiccup. The GP I saw on Friday couldn’t work out how to do a double prescription to last me six weeks, so he just printed the usual one, which only lasts a month. “The lady on reception knows how to do it,” he said. “Speak to her and I’ll sign another one.”

But she said she was locked out of the system for 24 hours (ie until Monday) because he had printed the first prescription. As I wasn’t going until next Friday she said I had time to request a repeat prescription on Monday which would be ready Wednesday. Oh-my-God! What am I going to do now? That’s cutting it a bit fine. Panic, panic! I can’t run out of meds halfway through my holiday! And I still needed to take the cat to my sister’s. How am I going to fit in trips to the GP and chemist?

I calmed down after a good night’s sleep and first thing on Monday I booked an urgent GP appointment for later that day. I got my second prescription. I relaxed.

I packed that afternoon. Then all that was left was to take Zoe, the cat, to Jo’s. She was going to have her for the six weeks I would be away.

The first time I took Zoe with me to stay there, Tenzing, Jo’s cat, ate from Zoe’s dish, so she pooed in his litter tray. Now they just sort of tolerate each other. One hisses and the other growls, but not much happens. There’s the occasional whack with a paw but mostly they stay out of each other’s way, except at meal times when they both want to be fed first. They're going to have to share a room overnight though, so that could be interesting. I'm sure they'll be fine. Jo's not worried anyway.

Cat installed in her temporary home, I returned to mine the next day and relaxed. I was now ready to fly halfway across the world…

And on it goes...

On my way into London to the last of my Month 3 appointments, a woman got on the train at Leigh, sat next to me and greeted me like an old friend. Other than asking where I was going, she talked about herself all the way to Fenchurch Street, barely pausing for breath. I knew all about her by the time we got there. I was relieved to get off the train.

The doctor leading the trial came, checked my lungs, glands and stomach, said “You’re good.” Then disappeared in a flash.

At the Research Centre, the nurse took my blood. Then picked up the vials to send them to the lab, and realised that she had missed two. My motorway vein went into hiding.

My next three month’s supply of medication arrived and I took the first tablet. The empty bottle and what was left of my first three month’s supply was returned to the clinic.

The doctor who usually did my blind assessment was on his honeymoon, so there was another one. We talked about how the scoring of the EDSS is subjective to the assessing doctor. “Yes, that’s its downfall”, she said.

There were two pegs missing from the nine hole peg test. She went in search of another. My right hand struggled to put the pegs into the holes and take them out again. There was a bigger difference between my hands this time. I’m right-handed but my left hand is stronger and steadier.

Andrew said “Hi” on his way past. He was finished and heading home. A man with a foreign accent almost bounced in. “You got MS?” I nodded. “Me too. I’m Peter. How long have you had it?” Good question. “Well, the diagnosis was ’97.” “Long time. Me? Seven years.”

 “I live each moment,” he said. “I know people. Get diagnosis, go right down.” He indicated with a down thumb. “That’s why me? I live for the moment.”

The saga continues...

The taxi was waiting for me at Fenchurch Street and away we went to the London Chest Hospital. Just as I arrived, Andrew was finishing. It was good to say “Hello” but there wasn’t time for much else. There were only two tests this time, but they were still hard work. I had to hold my breath for as long as I could and breathe out fast ‘til my lungs were fully empty. I was finished in no time.

The taxi driver who picked me up, didn’t know where Fenchurch Street was. “Is it near Liverpool Street?” he asked. As we left the hospital he turned left. I was sure he was supposed to go right. Oh well. He played with his satnav as we drove around. He didn’t seem to have any idea where he was going. Several wrong turns and satnav taps later, it found its destination. And we found Whitechapel Road and turned right. At last, I thought. We’re going in the right direction.

 “What number?” he asked. “Eh?” I was confused. “What number Fenchurch Street?” “I want the station.” “Oh.” Then he drove right by it.

 As I got out of the taxi, the clouds were as black as night. In the other direction there were large patches of blue. But the speckles of rain in the air suggested a torrential downpour was imminent. As the train pulled out of the station, the sun came out. I dived into my book and when I looked up, the heavens had opened. Oh dear, I thought. I hope it stops by the time we get to Southend. It didn’t. I hovered in the station trying to decide if it was a short shower or in for the day. Oh what the hell. I dashed to the car and got wet. By the time I got home, ten minutes later, the sun had come out.

Fun and games at Month 3

The first of my three Month 3 appointments was the ophthalmology test at Whipps Cross Hospital.

The taxi met me at Wrest Ham. He was a little flummoxed by simple instructions to take the scooter apart to go in the boot. The seat just lifts off; it’s not complicated. Evidently it was. He recruited a passer-by to help him.

The drops stung a bit then the doctor looked into my eyes. Not as romantic as it sounds. He was looking at the back of the eye. It was all good and I was finished.

Outside the Eye Treatment Centre, there was no sign of the taxi that had been due to meet me. A few telephone enquiries found it outside the main entrance. “I don’t know where Ophthalmology is,” he said. I didn’t know where the main entrance was. I followed the signs.

He also had trouble taking the scooter apart. Anyone would think you needed a degree. Lift the seat, lift the battery, fold the handlebars and lift the lever so the front separates from the back.

He turned left out of the hospital instead of right. Then blocked the road while he did a three-point-turn. It would have been simpler to go another five yards and round the roundabout.

I had just enough time to buy a take-away coffee from the café opposite West Ham station where a sign in the window made me laugh. “We don’t have Wi-Fi. Talk to each other.” I trundled to the platform where I met the man with the train ramp.

There was no ramp at Southend Central. Great! I rolled my scooter into the doorway so the doors couldn’t shut. “Can we wheel it off?” asked a passenger waiting to board. He did, then boarded the train as the doors closed.

The man at the gate greeted me with a wail, “They told me 15.53! They told me 15.53! I was going to meet the next train.”

New batteries?

“It’s quite straightforward,” said the man on the phone. “If you turn the battery pack over, there are eight screws in the holes in the bottom. Undo them, turn it back up the right way, and lift the lid off. Then you can disconnect the two batteries and lift them out.” It sounded easy enough.

First I had to buy a tall screwdriver. I unscrewed the screws and lifted the lid off. The cables were attached to each old battery with nuts and bolts. I needed a small spanner. Off I went to Homebase. Next problem… when I turned the nut, both sides moved. I needed two spanners. One to hold each side. Back to Homebase.

I put the first spanner on the first side. But by the time my fumbly fingers had managed to get the second spanner on the second side, the first had slipped off. This spanner dance is not fun. Cue colourful language.

Now to lift the batteries out. Or maybe not. They were stuck to the bottom with Velcro so fierce it had superglue properties. It took much wrestling (more colourful language) and more wrestling. Finally it was free. That was the first one. There was still another one to extract. The new batteries were much easier. No Velcro on these and I only needed one spanner to connect the wires. In fact, I didn’t even need that. I could use a screwdriver. It’s looking up; I’m getting there.

Batteries in place I put the lid back on. I turned it over to return it to the scooter and some of the screws fell out. Great! How was I going to work out which deep, dark, narrow hole had a screw and which didn’t? I must a torch somewhere. Which safe place had I put it in? Found it! I peered into the first hole, angling the torch so I could see the bottom, which was as narrow as the screw with a top only a fraction wider.

Eventually it was all done. I could go to Australia with a scooter with the maximum power of new batteries. It had only taken me three hours.

 

Why Do you walk with a stick?

Asked the little girl, much to her mother’s horror, as I wobbled into the café. And we had a lovely little conversation, while he mum continued packing up to leave. She didn’t say anything. Adults are afraid to. If they do, they tentatively enquire something like “what have you done to your leg?”

 

I love the questions that children aren’t afraid to ask. They are so matter of fact. If I am sitting in a cafe and my crutch is propped up against the wall or the chair, or more likely, on the floor where it has thrown itself (it’s very badly behaved), a child will wander along to investigate. “Don’t touch that!” I hear. Then follows a conversation with their son/daughter/grandchild. At which point, the adult with the little girl or boy will apologize for disturbing me. But why? They should be proud that their child is not afraid of difference.

 

But it’s interesting how views of the same thing differ. I think I’m memorable because not only do I walk with a crutch, it’s purple. A friend in my Writer’s Group says “No. It’s your hair that I remember.” My hair is a bit wild. It does its own thing regardless of what I want it to do.

 

I’m no longer scared to tell people that I have MS, although it is rarely the first thing I say when I’m introduced to someone. I’m a long way into this MS thing. It’s been there for half my life. For the most part, it just is. That’s not to say that I don’t have bad days when the impact it has had gets to me. Of course I do. But I remind myself of a powerful thought I had in the early days when I only had one symptom and it was getting to me. There are more things that I can do than there are that I can’t. And however much further MS has progressed since then, that still stands.

I'm going in style

I love planning trips and putting all the parts together; the flights I book through a Travel Agent, but the rest (accommodation, visas, transfers, etc) I book myself. Prior to becoming a nurse, I had worked as a travel agent organising the arrangements for group tours through Europe. And I’ve done a fair bit of independent travel, making plans as I go along.


I’m going back to Australia, a country I have visited many times. The first time was on a Working Holiday Visa when I was 19. This trip will be very different because I’m taking my little mobility scooter with me. And because I no longer have the time restraints of limited annual leave, I’m going to see all my friends, who helpfully live opposite ends of the continent. And there is one friend in particular who I want to see again while I still can.


As well as taking the scooter, I’m doing something else differently this time. When I cross the Nullabor on the Indian-Pacific train, on the two days and two nights' journey from Perth to Adelaide, I’m going to have a cabin with a proper berth. And I’m going eat in the Queen Adelaide Restaurant (dining car) and sit in the Outback Explorer Lounge (with a cocktail). I’ve crossed the Nullabor overland five times in all, four by train (always the cheap and cheerful seats) and once by bus. Never again by bus. But not this time. This time I’m going in style.


The Nullabor, an Latin word meaning “no trees”, is an enormous expanse of, to western eyes, nothing, just low bushes and sand. I love the vastness of it. I love how, having sped hundreds of miles while you slept through the night, when you wake up, the view from the window looks the same.

The way I travel has changed over the years, but it hasn’t stopped and those changes have made travel challenging and exciting in a different way. But some things are still the same: the excitement and fascination of arriving somewhere new that’s just waiting to be explored.