I have to get up tomorrow

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I have to get up early tomorrow.

I have to get up early enough to get to the railway station by 6am, so I can get to the airport by 8am to catch a plane to Melbourne for the Patient Education Conference at Lupus 2017.

Knowing my difficulty with waking up in the morning, I have created a foolproof plan.  (Well, hopefully a foolproof plan.)

I've set an alarm for 4.45am.  I made it "Hot Potatoes" by the Wiggles.  That should be something that will force me to get out of bed and shut it off.

As my daughter has to catch a train to work at the same time as I'm going, I've asked her to check that I'm awake as soon as she gets up as well.

Then, I'm going to drink copious amounts of coffee.



Tomorrow afternoon, there's a meeting of representatives of lupus support groups - so hopefully,  I'll have something interesting to report tomorrow night.  And on Wednesday is the Patient Education Conference, and I'll definitely have something worth while to tell you about then.

Thursday, it's back to the plane and trains to get home.

Changing Gear

Fairly soon after I was diagnosed, I upgraded my little manual car to an automatic with power

Driving my little mobility scooter
(with help from my small "co-pilot").

steering.

I loved my little Ford Focus, and took very good care of it.  Buying it brand new, I'd planned to stay with this one car for a very long time.  It was easier to drive than my previous car, the steering was light, I could handle it even on days when all my joints hurt.

I failed to take one thing into account in choosing it.  A Focus is a fairly small car.  That was fine to start with.  Once I needed to start carrying extra things to help me with mobility, the car didn't have quite enough space.  First, it was the wheelchair. Then, to be a bit more independent, I got a groovy little red mobility scooter.  Now, I don't need someone to push me around.

The scooter breaks down into small enough parts to put into the boot of a Focus, but then I needed to have someone with me wherever I went, to get all the pieces out of the car and assemble it, and to break it down and put it back in the car again later. The boot of the car was then full, with no room left to put the groceries, or anything else I might have wanted to carry.

So this week, I did the unthinkable.  I traded in my little car that had less than 60,000km on the odometer, for a very well used Nisan XTrail four wheel drive.

The "new" car - with experience.

It's close to the same age as the Focus was, in years, but has more than 200,000 on the odometer.  So I guess it's a car with experience.  Second-hand was the only way I was going to afford a 4WD.

The benefit is, that my scooter doesn't have to be broken into as many parts - so is easier to set up and put away.

Add to that, my son has promised me an early Christmas present - he has it on order to pick up next week - a folding ramp to make getting the scooter in and out of the vehicle simple and light enough that anyone, hopefully even me, could do it.

Of course, there's also heaps of room in the back for me to get shopping and whatever else I need and carry it home, too.

I was a bit sad about changing cars. You might have guessed.  I was also a bit concerned.  I drove 4WDs when I was younger, but haven't done so for years.  I remember them being heavy to handle, but I was much stronger back then. Fortunately, that has changed dramatically.  This is automatic, has power steering, and in two wheel drive mode, is no harder to handle than the smaller car was.  I also remember 4WDs requiring a great deal of effort to climb into. This one's not all that much higher than a regular car, and I can step into it, rather than climb.

Wheelchairs Don't Bounce

My "new" chair.

Well, I did only go overseas for two weeks. It's a while since I got back.

I needed a bit of recovery time, and then there were some family and health crises (not all the health crises were mine for once.)

So, as an intrepid lupie world traveler, I've had quite an adventure, and I don't know where to begin telling you the stories of what happened.

I guess I'll start with the discovery that wheelchairs don't bounce.

You wonder why I tried to find that out?  Well, actually it wasn't me who did the experiment. But I did provide a brand new wheelchair for it.

I'd bought a wheelchair with the trip in mind. The theory was that if I was pushed around in a chair instead of walking (limping) I would have the energy to do more. This actually worked out quite well, despite the hiccup.

My family pushed me through Brisbane International Airport in my own chair.  At the door of the plane, my chair was taken away.  In the stop-over airports I was transported by airport staff in the airport's own wheelchairs to my connecting flights. (This, in itself, is a great reason to take a wheelchair on a flight. It meant my family had a guide to show us where we were going getting from one gate to another.)

At Manchester, the final stop, the airport wheelchair was awful. The airport staff didn't push this one, but gave it to my son to take me, saying that it would be a while before someone was available and we'd be faster on our own.  The wheels of the chair seemed to have come from the same factory that produces those shopping trolley wheels that go in four different directions at the same time.

My son struggled and I got frustrated, and we were both incredibly glad to pick up my chair from the baggage collection point.

My chair was so good in comparison to the airport one that we didn't even notice that it wasn't behaving as well as normal.

We passed a sign that said, "Check your luggage, no complaints accepted after this point." We'd been travelling for 24 hours straight. We had all our bags. Nothing was obviously wrong. We left the airport.

The next day, the family went for a walk through the streets of Frodsham to the local park.

Family members took turns pushing my chair, and complaining about the rough footpaths, especially the sections that were cobblestones. (Cobblestones may be very pretty, but they're not good for wheelchairs.)

It got worse a it went on, and then we discovered that one of the front wheels wasn't straight. It was bent under part way.  We were all muttering about just how horrible British footpaths were.

Eventually the front wheel collapsed all the way, and I had to walk back to my sister's house.

My sister asked around and found that a place called Motability would be able to fix my chair. We went in to the place suggested, and handed my wheelchair over to be examined.

While waiting we watched a video about the business - which employed people with disabilities to restore and repair mobility equipment for other people with disabilities.

The diagnosis for the chair: it wasn't damaged by the street. It had received a hard knock, probably from being dropped from a height.  The repair people strongly suggested airline baggage handlers had something to do with it. The frame was so badly damaged, it couldn't be repaired.

I bought a red reconditioned chair from them for 50 pounds, which meant we were free to continue the holiday.

And having a chair for trips to all the amazing places we went really was worth it.

So, dear lupies, if you're planning an overseas holiday, taking a wheelchair is a great idea. Just don't buy an expensive new chair to take with you. Get the cheapest one you can buy, second-hand is fine.