Maybe? Not Yet

When is the right time to start using a wheelchair?

It’s something I have been contemplating a lot.  You don’t want to start depending on one too soon.  But then, should you increasingly limit what you can do simply for lack of one?  And what to do with the pride factor?

My mobility has been on the decrease. I can walk short distances, but even walking up to my daughter’s school, just around the block, is now too hard.  I use a cane most places I go.  It helps me a little with balance, gives me something to lean on when I feel weak and has a little fold out stool so I can sit when I need to.

Walking anywhere, with the cane, or without is exhausting for me. It takes the lion’s share of my energy. I can still drive, which I am grateful for.  It’s just that doing much of anything once I get to my destination is so hard.  I’ve been using the complimentary scooter at the mall for the last few months, it’s been a big help.  But when should I start thinking about my own wheels?

When I went to Adelaide last weekend, I organised a hire chair for the duration of my stay.  I didn’t want my limited mobility to stop Erica and I from getting out and enjoying the city. I also didn’t want her to have to push me around, I’m an independent sort of person, so I wanted to ‘drive’ myself.  Walk on Wheels didn’t have any scooters available, so they hired me an electric wheelchair.  I figured it would give me the perfect opportunity to try out using a chair for future reference.  It was vastly superior to a scooter in terms of manoeuvrability; turning on a dime. Somehow, because it is smaller than a scooter, it is less conspicuous too.  It cost me $25 a day to hire the chair, plus fully refundable deposit and a delivery charge. I had the larger “Maverick” electric chair, I’m a bit of a big bird. It was the perfect size for me.

Me with Maverick(3)

The Maverick and I got acquainted very quickly!  So easy to move around, steering is a doddle and the joystick style controls really are intuitive. I liked the little horn.  It wasn’t so loud it scared people but was enough of a beep to let them know someone was there if I needed to discreetly get their attention.  I took the chair for a spin down to the tram station.

Trams in Adelaide are perfectly set up for people in chairs.   The stations are all ramped, and once on the platform, you just wait on the little blue mobility park.  As the driver approaches, he waves to let you know that he’s spotted you.  Then he pulls the tram up, hops out of his seat and lowers the ramp (some trams have folding ramps and others have pull out ramps).  There is a spot in the tram for the chair and an accessible stop request button right next to your park. The driver asks where you are hopping off and returns to assist you off the tram when you reach your destination.

Victoria Park Tram Stop

During my stay, I took the tram to Glenelg (about forty minutes away), Black Forest, and to hop around the city centre. Because I could power down my chair while in the tram, I was able to save battery power too. The excellent tram system saved me and my chair a lot of energy!  I was really impressed with the warm and friendly staff on the Adelaide Metro Transport system.  I’m sure it isn’t policy, but every time I went to pay for a ticket I was waved away. So nice to be treated with such kindness when you are staying in a foreign city!  Whoever complained about Australians hasn’t visited Adelaide!

I encountered a few problems with accessibility along Jetty Road in Glenelg.  It’s a shopping street that leads to the famous jetty and is lined with gorgeous shops, at least half of which I couldn’t get into with the chair.  But Adelaide Central caters beautifully for people in chairs.  Almost all of the shops I went to in Rundle Mall were easy to navigate without damaging the furniture!

I felt liberated in that chair. I could go where I wanted to go without worrying that I would ‘crash’ mid outing and have to get horizontal in a hurry. I felt free to move at a pace that was more natural than my own snail’s pace.  I could relax and enjoy my surroundings more.  It was slightly strange to be short though!  I am six foot tall when I stand on my own two feet.  But it was so good to be able to MOVE distances for longer. I loved it.  Being in a chair is still taxing, so you still need to budget your energy, once you are used to how much it takes. But oh, not nearly as spoon bending as trying walk distances. It felt so good to feel part of things in a much more active way!  Now that’s ironic.

We have decided to wait and see what happens in the next wee while.  In spite of the huge difference in what I was able to do when I was in a chair and my happy experience of things in Adelaide… I am just not ready yet. Our big hope is that the steroid therapy and possible IVIG makes a difference in the area of muscle weakness and neuropathy.  If that happens, I might be able to be more mobile on these legs of mine and the whole need for wheels might diminish.  Here’s hoping!

If it doesn’t work and things continue to decline, we’ll just have to find some snazzy wheels for me to buzz around in.

If you have Dysautonomia, or another medical condition that requires you to use mobility aids, do you use a chair? What made you decide it was time?  How do you feel about it?  Does it change the way people relate to you?  So many questions…!

FREEDOM!(1)

The Road… is Never Long

There is this thing that happens when you get to hang out with a childhood friend.  The years melt away and you’re back at your pre-baby, pre-wife self. Just yourself. Who you were before your adult roles became the bigger part of your identity.  Before responsibility and change and heartbreak and  all the stuff.  That noisy stuff that makes the mirror blurry.

I spent the weekend with my friend, who also happens to be my cousin. She’s known me for as long as I have been alive and seen me through all kinds of stuff. There’s comfort in that. We know each other’s history from the time before.  We know the dreams we had and the plans we made.  We know the paths we travelled and the ones we didn’t. And here, on the other side of forty we still know who each other is.

Really is.

And that is a beautiful, comforting thing. We both lost our mums in the last decade. Our mums were sisters.  We talked long into each night about grief, being women, the legacy of the women in our family. Being mums.  Being us while we travel through the terrain of our days.  It is so easy as women to lose sight of who your are, were, your core self. Life gets so demanding, and you choose to prioritise based on your responsibilities.  The kids, your husband, maybe your job, your friends.  How often are you the last on the list?  Have you ever been at the top of it?

I remember scoffing at women’s magazines when I was a working mum. Make time for you! Look after yourself so you can look after them!  Yeah right, I would think. There is no extra cash for that.  There is no extra time for that.  There is no one who can take the kids just so I can have “me time”.  Not everyone can afford to be that selfish.  That’s what I thought ‘me time’ was.  Selfish. Unrealistic.  A pipe dream.

And then we got sideswiped by my health problems. And prioritising became about survival. Saving the energy for an ever-more-pared-down-list of the most important, essential, crucial tasks. Spending my ‘spoons’ on the family and getting through the day. Gritting my teeth to manage what small amount of work I could, pushing through the necessary tasks.  No room there for frivolous “Me time”.  Me time was suddenly in surplus; but it wasn’t soul food time.  I was busy working on getting through the storm of body issues Dysautonomia sends my way.  It wasn’t restorative or helpful time. Just grit-your-teeth-and-bear-it time.

So when my cuzzie friend and I hatched the plan to meet halfway between NZ and Perth; in Adelaide, I honestly doubted I would make it. I didn’t think I could physically manage two flights, the days between, the struggle and strain without all my home comforts.  But seeing Erica again was powerful motivation. So I proceeded to hope for it anyway. And it was worth it. It was restorative. Girl time.  The way we can talk about a hundred things and pick up the threads at random times without ever losing our place.  I held her in a hug and felt connected to who we were again.

Maybe you think planning some ‘me time’ or ‘girl time’ with one of your dearest friends is a crazy thing to do.  Maybe you think you are too sick, or too busy, or too tired. I did.  And I booked it anyway.  It was a huge weekend for me. As I sat waiting to board the plane home my eyes filled with tears.  I took myself right to the edge of my coping capacity.  I was spent. I couldn’t walk. I felt so disconnected, dizzy and tired. So worn. But in my soul?  I was fed with the joy of finding my old self again. There’s soul food right there.  Enough emotional energy to make it through the next stretch.

Even if it seems like a crazy thing to do, book out that time for you.  You need it. You may not know just how much until you are there and you see it; you, again. Looking back at you in the mirror.  Always there, just waiting for some quality time with you.

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Oh. Forty.

I have been blithely approaching forty with a bit of a mental swagger.
Can’t scare me, forty.  Puh!
I’ve always been mildly exasperated with women who lose the plot over a number.  It’s just a number!  Every birthday you are always turning an age that is younger than what you will be.  Photos of you at this age will always look young when looked back on by your older self.  No worries.  It’s no big deal.

And then yesterday I looked in the mirror and got face slapped with a realisation.  Oh.  Forty.  Maybe you just don’t get it until you are there.
A sneaky snake of an idea began sliding in under the welcome mat of my mind.
Old.  That’s what forty is, it whispered.
No it’s not!  Perhaps it doesn’t help me fight that sneaky snake, that I already have a pacemaker, use a cane and have enjoyed my first outing on a mobility scooter. I already feel like my body is geriatric.  I don’t feel young and looking in that mirror I see the effect of all those years, all the struggle.  I’m not wrinkly, but I look defeated, tired, a bit sad really. And suddenly all my bravado about meeting forty head on is dissolving.

I’m going to be forty for crying out loud.

How did this happen so fast? My insides are still twelve!  I’ve been playing an elaborate game of dress ups and pretending to be grown up.  How can my outside be turning forty!  Far out.
It’s fair to say there is a little bit of panic going on here.
I’ve never liked snakes.

I am eschewing a party.

Not for me the whooping-it-up-gathering.

I’m not alone. My beautiful cousin Erica is turning forty, too. I’ve known her since the day I was born and I feel so lucky to have been given the gift of her friendship through my family ties.  Our mums were sisters.  We have a lot in common and it’s a comfort to laugh at our genetic quirks together! She fell in love with an Australian, and as it often goes, she followed him across the continent of Australia to live in Perth.  I miss her every day.

So!  Why not go and turn forty with Erica? There is no one I would rather turn forty with, and I am meeting her half way between our homes.  Isn’t that a cool plan? We’re going to rendezvous in Adelaide.  So excited!

I’ve been there before.  I completely fell in love with that town.  I love the order and neatness, the creative quirkiness, the variety and beauty.  It’s a stunning place.  And they have this amazing market place there, right in the centre of town.  I have never forgotten the food!  So Erica and I are going to hang out together there for a few days.  We’re going to toast our first forty years together with a nice cuppa tea and ring in the next lot. We’re going to catch up on hours of chats and laughter.  We’re going to sleep in every day and revel in the break from all mothering and wifely tasks.  We’re going to indulge ourselves and revel in the freedom of us-ness.  It’s going to be EPIC.  In a sedate kind of fortyish way.

I’m dreading the flights, but I have planned for lots of rest when I get there. I am researching scooter hire after my recent successful experience.  That will help a lot.  We might even get to those markets, all going well!

When you are sick, having something to look forward to is so important.  Planning can make you anxious; the fear of cancellations and postponements can make you not want to even try. Flexibility in your planning matters. But having something wonderful to look forward to also makes you excited, hopeful   …happy!  It’s a great distraction from the daily thought wheel.  I might be all of those things that I saw in the mirror.  But I am still me.  And that is beautiful in it’s own kind of Rachie way.  I might be limited, but I am able. I might be sick, but I am not giving up. I might be turning forty, but I am much more than the age on my passport or the face in the mirror. I reckon with a little bit of solidarity and sisterhood from my little big cuz, I can make it over the hill with a smile on my dial.

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Are you sick?  What happy plans are you hatching?
Have you hit forty yet?  How did you celebrate?
Have you been to Adelaide?  Any recommended restaurants or must-visit spots? Not the crazy hot nightspots, more the sedate kind of activities suited to the gerries.  (Ahem. Keeping it real!)

This song.  Another thing you don’t get until you are actually there.
“Now the winter at our window feels so cold”