Getting Grown-Up

Happy New Year

Every New Years my hubster and I sit out on our balcony after the kids have gone to sleep.  We eat fancy cheeses, oat crackers, pepitoes and plump olives… and my favourite; grilled artichoke hearts.  We toast another year. We talk about how it has been and stubbornly focus on the achievements, congratulating ourselves for what we have managed.  Then we plan the next year together. As the years pass and my body presents more challenges, we’ve been surprised by how much we can still do.  Together.  2014 has been a good year for us as a couple. It’s been good for us as a family.

It’s taken all year, but our minor renovation downstairs is complete. Happy sigh! A good year for finishing things, tying up loose ends.  Getting more organised.  We are starting to feel like grown ups. I turned forty this year; next year, he’ll turn fifty.  Takes a while, getting to this grown-up feeling!  Once upon a time, we used to go to New Year’s Eve parties.  That’s just not feasible anymore, and you know what?  We don’t even miss the sparkle and excitement, the social stress, the late night, the hangover.  Last year we rang in the New Year at 10pm and tucked ourselves up in bed.  It was perfect.

We have a decoration on our tree, it is a hanging, lidded gift box, crammed with tiny notes.  This year, when we were decorating the tree, my son asked me what all the folded pieces of paper inside were. He had never noticed them before.  They are all our plans for all the New Years. Written in tiny script, hopes and goals and aspirations, folded into the smallest possible wad and added to the years before.  I showed him and his interest skipped off elsewhere, the way it does when you are seven and Mum shows you something less magical than you expected. We, however, always look at previous years nostalgically when we add a new one! It’s amazing how many of them have come true.  Is that because we wrote them down? Planned for them?  Is it really that simple?

What are you planning for in 2015?

Next year holds so many unknowns for me.  I am supposed to start IVIG treatment.  That will run for six months. I’ve been accepted into a leadership programme, for people who show promise as a voice for social change.  For me, that means really working on using my voice to promote understanding of invisibile illness and invisible disability in New Zealand, building leadership skills, increasing my network.  It’s an incredibly cool opportunity, but I don’t know yet if the first will preclude me from the latter, I’m waiting for some dates to know for sure. I feel like I am suspending my excitement in case it doesn’t all fall into place.  But, OH!  What if it does?!

What is certain for me about next year is that I will be wife-ing, mothering, writing, and getting involved with life in as many ways as I can.

I’ll be spending a bit of time (as much as I can manage) out in the countryside, where my daughter rides; drinking in the goodness of green paddocks and the sweet smell of horse feed.  I’ll be stroking the warm neck of her wise and good pony and watching my girl follow her bliss, hair flying out behind, grin on her face.  It’s the best soul food on the planet, watching your children do the things they love.

I’ll be wrapping my arms around my little guy as often as I can. I feel that he is moving on up into a new stage and the little boy sweetness of his cuddles is making way for boundless, urgent energy. He’s a big kid now, a purple belt in karate, a story-writing, poison-ball-tramp-champ-justice-leaguer. He’s growing up and I am treasuring the last vestiges of my baby boy.

I’ll be working on some more pro-active health measures.  I want to improve my gut motility somehow, so I am going to work on what I feed it, I’ll be giving my intestines a rest in the very early New Year by starting a liquid diet.  I had a gastrograffin study which showed, when compared with my recent gastric emptying study, that liquid transits through my intestines with much more ease than solid food. So goodbye cake! I’ll be souping it up instead (know any great soup recipes?). I also want to do all that I can for my general mobility and my fitness, so I am going to the rehab centre to work on my exercise program. I’m excited and hopeful about what that might do.

I’ll be here, blogging about my life with dysautonomia, and all the other things besides.  I’ll be connecting with you over on my Chronic-ills of Rach facebook page. I’ll be emailing, advocating, writing and doing the work I have been given to do.  There is so much more of it.   Hang around with me, I’ve just got this feeling that 2015 is going to be a good one!

How do you celebrate New Years?  Can you?  Do you have little rituals too?

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)

Parking your Objections

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See that girl over there?  She looks like she is in the glow of good health. Her cheeks are flushed, her hair is shining. Why is she using a mobility park?  Oh my word.. she even has a cane, but no limp!  She’s a faker for sure. Does she think she is too important to have to walk 10metres? Who does she think she is?! She must be using someone else’s pass and cane.  I bet they’re her Grandma’s.  You’ve heard them do exposes about exactly this kind of deceitful self-centredness on the TV.  It’s outrageous!  You are so incensed you decide to go over to her and give her a piece of your mind.  On behalf of all the truly disabled people.  You’ll speak up for them!  It is your civic duty!

You catch her just before she enters the supermarket.  She turns at your shout, a smile ghosting away from her face.  Her eyes seem clouded.  Maybe she is tormented by guilt!
“Hey, YOU!” your voice is angry.  Your finger is stabbing the air in her direction “You can’t just breeze into one of those parks and use the pass of someone else!  It’s not on!  Those parks are for people with WHEELCHAIRS.  That’s why there’s a wheelchair on the sign!”  You are full of justified fervour,
“…I don’t see a wheelchair!  Go and park somewhere else and LEAVE THE DISABLED PARKS FOR DISABLED PEOPLE”. Her lip looks a bit quivery, you notice with satisfaction.  She better not try the sob story with you.  

“Thank you,” she says, her voice is controlled, “for looking out for the rights of people with disability.  Although you don’t see it, I am one of them. I have a progressive neurological disorder.  You can’t see my disability by looking at me. I find it hard to walk far, but I like to do what I can when I can”

She sounds like she has said that before. She turns and walks away.  You feel awful.

How were you supposed to know? She looks fine!  Your outrage fizzles, your hand drops down by your side.  You’re feeling a bit like a rapidly deflating balloon.  You stand at the entrance to the supermarket feeling a conflict of emotions.  You were only trying to do the right thing!  You watch her walking away, and you wonder about what is wrong with her.

She looks normal…

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Dysautonomia is a strange thing. There are ebbs and flows, bad days and sometimes, better days.  As my old friend John Denver put it.  “Some days are diamonds, some days are stones”. On those days that are stones, I have usually sunk to the bottom of my get-up-ability. I’m not driving.  I’m certainly not parking. And nothing is getting done that needs to get done. A stone day is often followed by a series of scrape-yourself-up and push on days. They’re days when I am definitely not rocking it. They are really hard days. I might make it to the supermarket and be able to budget the distance to get something essential.  On one of those days I’m unlikely to make it around the whole place.  I certainly wouldn’t make it to wherever I need to get to within the store if I have also had to walk the length of the carpark, there and back.

I have a mobility pass for parking. I use it when I need to.  But I am careful. If I am able to park in a normal park, I always do.  If I am able to walk further, I will.

I have a fierce determination that if there is anything I can do for myself and my crew, I always do.  In order to maintain that kind of control over my life, I need to use the services our community provides for people with limited mobility. Sometimes the symptom-ricochet for pushing through is swift and severe.  But sometimes, even that is worth it.  Because I like to do for me.  I think it is good for me, good for my body and good for my brain. I’ve been told I need to get better at accepting help, but I don’t know…  I think I need to keep doing as much as I can while I can.  It matters to me very much. Maybe there is an element of pride in there that I will have to examine at some point.  But in the mean time, I do what I can whenever I can. I use my pass if I need to.

My cousin’s husband has a specially modified vehicle because he is only able to mobilise in a chair.  He has quadriplegia after a disastrous rugby tackle. I have seen first hand the frustration when people have parked too close to his vehicle for him to get back in it.  I have watched cars, circling carparks on a busy day; duck into mobility parks for a quick dash in to the coffee shop, because there are only mobility parks free.  Sometimes, I too have looked through the windows of cars parked in those spots, searching for mobility cards, wondering why the people are parking there, wondering if they are legit.  It’s grossly unfair that there are people out there abusing the service provided for people who legitimately need it.  But there are also people out there abusing the people who legitimately need it.  Not all disability is visible.

The point of this post is just to ask people, well meaning people, to adopt a considered approach to their wonderfully caring, on-behalf-of-what-is-right, vigilante advances. Please, first check to see if there is a permit. Don’t assume that it is stolen.  If someone has a permit; they are permitted to park in mobility spaces. Permit applications must be signed off by doctors.  People can’t just cut them off the back of a milk carton. So if a permit is present, you really need to presume that disability is also present, even if you can’t see it.  If you are certain (there is no permit on the dash), alert the management responsible for the carpark.

I wonder, why don’t permits have a photo ID component?  I think that might resolve this whole issue.   What do you think?  Have you seen people abusing the mobility parking near where you live?  Have you ever approached them?

If you would like to read more about how this issue is being addressed here in New Zealand, you can look here.

Here’s my mate, singing about those days of diamond and days of stone.

 

International Travel for the Chronically Ill

A couple of years ago, we were told that my illness is progressive.  Although we had suspected, that knowledge had an immediate effect on the choices we were making. We became mindful about making memories.

Children don’t remember the things we necessarily want them to remember, and we know that the small moments of connectedness, the simple pleasures are really profound.  But when we recalled our own childhood memories, so many of the best were holiday memories.  We had been hunkering down, like most of our cohort. Trying to get that mortgage paid off, striving to get ourselves into a really secure financial position. We are pretty conservative people and my husband has a risk-averse approach to finances.  You know the sort…If we want to do work on the house, we save for it first.  So pushing the boat out and taking an overseas family holiday was something we had always seen as a big luxury, something we’d do ‘one day’.  But when that neurologist leaned in and said “do the things you want to do with your family while you are still mobile,” we listened.  We talked about the kinds of things we’d been putting off.  And we booked the holiday-of-a-lifetime.

It was all kinds of joy.  The planning was a beautiful distraction. The anticipation provided a daily dose of optimism mixed with excitement.  A holiday!  It took an enormous amount of planning.  There are so many things to think about when you are travelling sick.  Our four week trip to the States was a wonderful thing.  We have been living off those memories and sharing them together ever since.  Our album is already broken from over use, the kids adore looking through and playing ‘remember when’.  We have no regrets.  Even though so many aspects of the trip were really hard for me, physically, I would go back to those four weeks of family memory-making in a heart beat.  Magic.  That’s what it was.

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And it’s all been on my mind because we’re at it again.
We’re about to head off for a shorter trip, this time to the tropics.  A week on a tiny coral atoll.  It promises to be at least as fantastic as one of Enid’s adventures for The Famous Five (yes, our large family is down to five!).  Epic.  It will be a new thing for the kids and a chance for me to share with them something of what it was like to grow up in Papua New Guinea, not that we’re going back there… but close enough!  My mouth is watering at the prospect of green coconuts, white fish and guava.  I can hear the island music playing…!

Also epic is all the preparation.  In this instance we will be very far from medical help, so I am taking everything that might be needed.  I’m anxious about it from a health perspective, but so very excited from a family perspective.  Bring it on.  We need a holiday.  Bet you do, too.

So anyway, I thought it might be useful if I share eight main things I consider when planning an overseas holiday.  There are so many things extra things to to consider when you are ill, accommodations of the disability sort in addition to accommodations of the bed variety. And all that planning and preparation are worth it.  Making memories is worth every effort.

 

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Here are my tips: International Travel for the Chronically Ill.

Before you begin, give yourself a hefty amount of time to do all the planning.  Don’t book for next week!  It’s not worth the payback your body will put you through!  Plan it all way in advance, even if you don’t know how you’re going to be. It takes a long time to get it all together when you’re sick.

1Consider the destination carefully.  How will the climate and altitude work with your condition?  I’m not saying eliminate destinations based on climate; just choose with the knowledge of how these aspects could impact you.  For example, if you are taking heart medications, you need to know if altitude will compromise their effectiveness.  If you are travelling to extremely hot regions and have thermo-dysregulation, you’ll need some ways to counteract the heat and manage.

1(1)When booking your airline tickets, make sure you have flexible fares that can be changed if necessary.  It is impossible to know when you book whether you will be able to fly when the time comes.  So choose the fares carefully, checking the terms and conditions.  If you can stretch to better seats, do.  Look closely at the airline travel insurance exclusions for pre-existing conditions.  Choose a policy that will cover you for any medical assistance you might need while you are away from home.  If the generic airline insurance won’t cut it, shop around and find one that will.

1(2)While you are booking your flights, you’ll need to indicate if you need ‘meet and assist’.  This will usually prompt the airline to have you fill in a medical form.  Have your doctor fill this in and send it back to the airline.  I also get my doctor to write a generic letter explaining my in-flight liquid quantities (I have to carry extra fluids for long haul), medications and my need to mobilise and/or lie flat whenever possible.  I keep that tucked in with my passport in case it is needed on check in, during processing or inflight.  It’s also good to keep a copy of that approved airline medical form on you.  Remember that if you have mobility issues or implanted devices, you don’t need to queue for immigration.  Flag one of the officers and explain your situation.  They’re usually very happy to help.  The Meet-and-assist service is truly wonderful for ill passengers.  Someone will meet your flight, pop you into a wheelchair and whizz you through all the difficult bits.  If you struggle to stand for long or walk the distances of your average arrivals hall, it’s a godsend.  I don’t generally use a chair but on these occasions I never fail to feel grateful for their invention. It’s a wonderful, compassionate service.  It means you can keep the energy for something more memorable.  And that’s a win.

1(3)If you can, try to plan the flight aspects of your travel to suit your best times of day.  Incorporate rest days and nights between legs of the journey.  In my opinion it is a mistake to push through more than one long haul flight at a time. The benefits of getting some good sleep in between are immeasurable. For our big North American trip, we also mixed up the type of travel.  I find flying very difficult, so we incorporated a road trip as well, with lots of time to get from A to B.

1(4)Consider the types of attractions you’ll be going to.  Will there be standing required?  Walking?  If you are not using a chair, will you be able to manage?  Most attractions can provide you with really sound advice via email. I highly recommend contacting them ahead of time and booking mobility aides if necessary.  In particular, giant attractions like Disneyland need advance booking.  I was surprised to discover when we got there that my walking stick was not allowed to be used because it has a built in seat.  They let me have it when they saw my doctor’s explanation letter (see above) thank goodness I had it with me!  But if I had contacted them ahead of time that wouldn’t have been an issue.  Plan your itinerary to include a range of attractions, it is miserable if everything you are doing involves moving around when that is a challenge for you.  A mix of museums, tours, events, attractions and rest days is a really good idea.  I also planned time when my hubster could take the kids to do things so I could recover and rest.

1(5)Take all of your medications with you and every therapeutic aide that might possibly be needed.  More is more.  But don’t forget to take the original pharmacy label from the box or bottle to show customs.  They don’t like medications dispensed into pill boxes. If they can’t identify what drugs you are carrying you may have to dispose of them.  I do dispense and just cut the labels off the boxes and wrap them in a rubberband. They slide into my inflight toiletry bag.  Yes, I take all my medications on the plane.  All of them for the whole trip, because if bags are lost, my meds are not.

1(6)Documents: Along with your passports, itinerary, booking confirmations and the medical forms discussed above, you may need other information close to hand while you are away. A copy of your prescriptions might come in handy. Research where you are going and what medical services will be available. Record phone numbers and keep these with your travel documents.  It’s a good idea to record all the contact details for your doctors back home and write next to them the time differences from your destinations. You or your travelling companions may need to call them and it saves a lot of stress and expense trying to find their numbers from overseas. Keep these with your documents too.  I also google-translate into the language of my destination a brief description of my health problems and print that out.

1(7)Pack some easy to prepare food or snacks for your own needs.  This might not be important for all destinations. Many of us sickies have particular diet requirements.  For our big trip away, I packed some easy breakfast sachets that I knew I could tolerate and that were a cinch to prepare (add boiling water).  Your preference might be a nutrition shake or other standard item that you know works for you.  When you’re on the road, getting food in time for your medications can be a huge challenge.  Being prepared will ease the stress and make the day unfold in a much better way.

So, there are my tips. Writing them down makes me nostalgic for our last trip and really anxious about this one!  I feel so fortunate to be making this memory with my beautiful family. I promise to bring you back lots of photos and to get some writing done while I am there.   I wonder what writing will be prompted in that beautiful place?  Wish me luck. Wish you were coming along too!

Post Script:
Best laid plans and all… 
1(8)erm.   If you have a pacemaker, remember to take your pacemaker ID card with you.  I have never been asked for it before, but this time I was!  And it was at home in my bedside drawer!  Bahaha!  I had to show them my scar and let them feel the bump before they were satisfied that I wasn’t seeking a pat down just for the fun of it.  I can’t go through the metal detector gates with this little device on board.  I guess the ID card is true of all implants?  If you have one, take it with you!

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Do you have any tips?  Suggestions?  I’d love to add to the list, add your ideas to the comments below…