Rheumatoid Arthritis and a road trip to Sydney

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Ok, I’m excited. And I am checking reality at the door.  For now…

This weekend I am taking my ‘little’ girl to Sydney (Australia) for a girl weekend of fun!  My son is staying with his Dad.  And while I feel horrifically guilty at leaving my boy behind, I know he is:

  1. Safe.
  2. Much happier at home.
  3. Looking forward to a ‘’Heroes” (the TV show) marathon with his Dad. Right now, after some difficult times, they are getting on great, and enjoying a common love of a TV show.

So really, it’s as if the stars have aligned, and I booked two nights in Darling Harbour with my daughter.  To spend some ‘quality time’.  To spend some time with her doing things that we have never been able to do because of my son, her brother’s, Asperger’s Syndrome.

I love my son. He is an incredible kid. He has amazing talents.  He is intelligent, and he’s clever. He’s savvy.  And he’s funny. And he’s kind, and caring and shows more empathy for others than most ‘normal’ people.  He has an understanding of life that stops people in their tracks at times.  A razor sharp ‘cut-to-the-chase’ honesty that he is willing and able to express.  But never with nastiness or mean-ness.  He has no guile.

He doesn’t have a nasty bone in his body. He is never manipulative, he is never devious.  What you see is what you get. In so many ways, he is one of the very best people I know.

But.

He is on the Autism Spectrum.  Because he has Asperger’s Syndrome, there are a whole bunch of things he can’t do. He can’t stand changes to his routine.  He needs familiar things around him all the time.  He is terrified of heights, loud noises, strong smells.  He is so terrified of sharks that he can’t go near the ocean or on the water.   He has no interest in new situations, new places, new foods.  He likes to stay at home, where he is comfortable and happy.

Holidays are hard. They are really hard.  My daughter has missed out on a lot of things that most kids…most people…take for granted.

So I am taking her to Sydney.  To experience new things.

Darling harbour to be precise.  Where there are lots of fun things to do.  Things we have never done.  Simple things that normal families do. Things that we can’t do for two reasons. Because of my son’s disability and because of my own.

I’m going anyway.

We’re driving up in the morning and should get there around 1pm or 2pm.  Then we’re going to walk over to Darling harbour and go to the Sydney Sealife Aquarium  (http://www.sydneyaquarium.com.au/ ).  This is my daughter’s number one attraction, so we’re doing it first.  So if all else fails, we did this.

Then we’ll walk back to the hotel, rest,  (I should put that in capitals) and head for China town.  (Five minutes walk from the hotel).  The Chinatown night markets happen every Friday night, and I chose this particular hotel so we could walk down, grab dinner and browse.  If it were far, we wouldn’t go.  My daughter is quite fascinated with Asian culture, admittedly mostly Japanese, but she is excited about China Town, and she loves markets.  Should be a win-win.  We’ll get dinner there, from one of the many street food stalls, then go back to the hotel.

And watch movies!  My daughter thinks we might swim.  Maybe, but doubtful. But the hotel has a fantastic pool ( my daughter loves to swim and play in the water, so this was one of her/my major criteria) and a spa pool attached. I can defreeze in the spa pool while she swims. Maybe…

(My son would not be able to manage the potential crowds and smells of the night market.  He would not eat the Asian food.  He would likely melt down in that environment and force us to leave.  he would refuse the pool, and I would have to stay with him in the room AND supervise my daughter in the pool. Clearly impossible, so she would miss out.)

Saturday we will catch the ferry across to Taronga zoo.  There is a cable car we can ride to the top of the zoo and work our way down.  I’ll have to walk, but it will be downhill, there are plenty of benches along the way, and because I’m not driving I can take as much oxycodone as is required.  I’m lucky in that oxycodone is effective for me.

(My son would never catch a ferry. He would be terrified.  He doesn’t get on any kind of sea vessel.  He hates zoos.  The smells are too strong, and again, too many people.  He can’t handle crowds.  He would be terrified of the cable car, and would not be able to do it.  And therefore I wouldn’t be able to do it. I wouldn’t be able to make the walk up.)

We’ll spend the day at the zoo.  My daughter loves animals. So do I. I hope to take a few hundred photos.

Then the ferry back to Darling harbour.  Then a ten minute walk back to the hotel.  This part worries me.  I’m likely to struggle. Worst case, I get a taxi.

We’ll collapse in our room for a while.  If we (I) have the energy, we’ll swim again.  Then we’ll order room service and watch another movie. Room service was also one of the things my daughter wanted to experience.  So room service it shall be.  Tripadvisor says the hotel has an excellent menu and great service.  I’ll let you know.

I think it’s likely I’ll be in bed by 8pm.  I’ll bring my heated throw, and heat packs. Of course the room has a microwave – it’s another essential.

The last day we will check out at 10am, and head for Madame Tussauds.  Then start heading out of Sydney.  On the way I hope to meet a friend and have lunch.  Then drive home.

(My son would not handle Madame Tussauds, the waxworks are creepy and scary and we would have to  skip most of it.  The house of horrors stuff is too real.  He would have nightmares.  And the celebrity stuff is boring. He has no interest and would therefore complain the whole time. Loudly.  He wouldn’t be able to meet new people, it would be too much to stop for lunch after such an intense weekend.  He would melt down in the cafe.)

The drive home is going to be the hardest part. After a weekend of so much *stuff* I will be wrecked.  I will be a mess.  And I need to drive for 3 hours down the highway to get home.  I’ll need to go easy on the oxycodone and focus everything on the drive.

There will be cans of coke and music and wound down windows.  I will take breaks as I need. If the 3.5 hour drive takes 6 hours, so be it.  There are plenty of rest stops.  And I will use them.  I will be careful and sensible.

But I have to admit, these are the times when I wish I had a partner.  Or a friend. Someone else to literally take the wheel when I can’t.  Someone to help out. Someone else to take charge.  Someone to pick up the slack so that I can collapse and not keep pushing through.

I’ve never been the type to enjoy holidays where you ‘relax’.  I get bored. I like to do stuff. Go places where there is plenty to do.  Not lie around by the pool or whatever.  I only like to do that after I have worn myself out having fun and seeing things.  But that doesn’t really gel with Rheumatoid Arthritis, and my current capabilities.

But I am who I am. I enjoy what I enjoy. And my daughter seems to be a lot like me.  She wants to see things. Do things.  We will do as much as we can, and make the best of it.  This trip is all about her.

But please note!!!  I am in no way complaining about  my son, in my bracketed italics. I am merely explaining why doing such simple things is impossible for us. Or has been. And why it matters that we do them this trip.

He is just not capable. He has no desire to put himself through that kind of stress, and why should he? I understand that, though I wish he could come with us.  I will miss him.  At the same time I am glad that I can do these things with my daughter, and focus on her.

Yes, I could have taken the bus or the train, but the ROADTRIP is part of my daughters dream.  And I’m looking forward to the road trip too!  My daughter and I will have nothing to do but talk, and listen to music and sing along…and talk.

This whole trip is about her.  And it’s fair that it is.

Looking at this list, there is no way I’ll get through all of that.  It’s a lot for a healthy person.  For me, on my own, something will give.  I’m hoping it will give after I get home.

Make no mistake, what I manage this weekend is a testament to how badly I want it.  Not a marker of my disease severity.  We are all capable of super human effort when the cause warrants it.

I want this very badly.  For my daughter. And for me.

3 COMMENTS

  1. I know you will both have a fantastic time and I know that both you & your daughter will benefit from this time together, as will your son and his dad. Sometimes in life, as hard as it is physically for us, you just have to grit your teeth and do the fun things that you want to do. I am exactly the same as you and when we go on holiday (very soon), I like to be busy and doing, occupied and learning, seeing and experiencing. I spend 90% of my life sitting around and resting, doing the sedentary things that make my life easier and help my body to get the rest it needs, so when I go away I like to fit in as much as I’m able, even though it means extra pain meds and muscle relaxers, lots of stops for coffee & sits downs. It means taking it very easy for a week or so beforehand and even more so after we get home, but that one week a year means so very much to our family that I will push myself and pay the resulting price to make it special for us all. Over here our zoos have wheelchairs and electric scooters to hire, might be worth checking out about that option.
    Have a wonderful time!!

  2. I do hope you’ve had a wonderful time. I’ve had RA for about a year now, and I’ve been in a hot tub maybe 3 or 4 times during that year. One time, it was amazing. All of my pain just disappeared when I got in the hot water. SO wonderful, I wanted to install a hot tub in my bedroom and sleep in it. The other times it felt good, but not that amazing relief. I wish you that amazing relief on your trip.

    I hope you are able to do at least much of what you hope, and that the trip home isn’t too much. I hope your daughter enjoys all of the new things that are too much for your son. And I hope your son has a wonderful time watching Heroes with his dad, comfortable in the familiar.

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