Margot le Page -What If?

watercolour splodge with the words 'What if this is as good as it gets?" in white text

This Meet My Peeps guest post is written by a friend I met in my patient group. Margot Le Page is a wonderful writer and a gutsy person.  She asks a question each of us comes to at some point in our chronic illness journey.  And answers it in a powerful way.  I think you’ll agree that Margot’s perspective is worth sharing. Thanks Margot for sharing your story here.   -Rach

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I don’t remember when I first heard this question. It’s not original.  However, I do remember asking myself.

The first time was a couple of months after a 9 hour massive back surgery to correct and stabilise my spine which was basically collapsing. I had scoliosis and ‘rotting ‘discs. I was 47.

I had led an exciting and complicated life to this point. From Oxide Street, Broken Hill to Rodeo Drive Beverly Hills, 2 marriages, 2 beautiful children. I was confident, extrovert and capable.

But, I had always been a bit sick. Nothing too major. Adenoids, allergies, appendix, basal cell carcinoma, pretty much the full a-z, all the way to ’zoans (ie protozoans my gut!) But seriously, nothing really hit me hard and I always recovered, following my Mother’s belief that we were a family of self-healers.  She should know after all, surviving an aerial gliding accident, 36 and pregnant, resulting in massively traumatic injuries including a leg amputation and the awful loss of the little girl, Helene Julia, she was carrying.

I had been given the ‘bad news about my back when I was 17. I was training to be a paediatric nurse with access to great doctors and highly respected specialists who told me it (my spinal curvature) was going to get worse and I would eventually end up in a wheelchair. I heard them but certainly did not actually believe them.  Well, not on the surface anyway. Denial can be a nice safe place sometimes.

Maybe, just maybe somewhere deep inside my head I knew those boffins were right and I proceeded to live my life in a hurry, keen to get away from that place. I sought care and treatment away from conventional medicine and explored a myriad of alternative treatments. You name it, I’ve tried it. Acupuncture, absent healing, aromatherapy, cranio-sacral therapy, osteopathy, a Russian Mystic, numerology, past-life, sacred oils, Indian Brahma Kumari meditation. (I’m sure there’s another a-z here too!)  I studied Reiki and nutrition, Pilates and yoga.  And spent a lot, I mean a lot, of money along the way.
Needless to say, those know-it-all doctors I had seen many years before were sadly, pretty right.  I came back to Australia from the US to seek conventional medical wisdom in a country where I trusted the system and had family and friends to support me.

So, there I was. Single, adult kids doing their thing, a long way from Los Angeles and my ‘other’ life, in a reconstructed body I couldn’t yet drive, barely surviving on social security, fighting a bitter divorce, needing opioids, wearing an awful shoulder to hip brace, using a walking stick…… pretty bloody depressing actually.  I cried and cried for lots of things.

And then somehow, with no tears left and a couple of truly wonderful friends helping me, my head not really together, I asked myself the Big Question. “What if this is as good as it’s going to get? Can I actually, really live like this? Maybe forever?”  The answer came… not immediately. But then I surprised myself with a resounding. “Of course I can!”. My thinking changed. I recalibrated. I thought of all the things I could do, not what I couldn’t. I didn’t feel so bad after all. I could get on a tram 600m from my front door when my drugs kicked in, and with one stop would get me to a bank, post office and supermarket. It might take all day, but, I could manage. I began to notice little things again. Cracks in the footpath where tiny daisies pushed their way through, sunlight playing through my blinds, sounds of birds and crickets….. I was all right.

11 years later I’m asking myself that question again.
5 further back surgeries, broken rods, pulmonary embolisms, dural tears, spinal fluid leaks, a craniotomy, I even had my gall bladder out in there somewhere too and my finger stitched!
I now have 13 vertebrae fused (great posture), increasing numbness and weakness in my right leg and a new diagnosis, Dysautonomia. Great?  Not.  Terrible? No.

My dear Mother, now aged 85, only 27 years older than me, currently not in great shape, has taught me so much. So, if, if, I live to her age, can I go for another 27 years like this, like I am now?
Of course I can.  Not ideal, but….. (big breath)

There will be more challenges ahead, I know that. I will no doubt ask myself the question again, probably more than once.
With less I have become more.
I am a good mother, a good partner a good friend.
I don’t mind me.
I am fortunate.

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…