Travel and Holidays with Polly. It Gets Harder With Time

I asked my friend Polly about ways her life has changed, getting older with arthritis. Christmas changes. and when you have to travel by yourself with disabilities it gets harder to do.

"Traveling...what's that?  Its been so long.  Now all of my trips are within a two hour drive and mostly to doctor's appointments.  Don't ask about the food at hotels near the hospital.

When I flew...we would always get a nonstop flight.  Those jogs and short layovers were like a marathon.  We didn’t go if there was no nonstop flight available.  Having to hang onto those skinny railings on fast shuttles to get to your next gate was always a challenge for me.  I think it is Cincinnati or Atlanta that has the buses where we had to walk outside on the tarmac and I had to get up those bus steps.  I could barely lift a leg that high then. Now I know I could not do it. I would be asking for a golf cart at the gate.  

 

Generic airport view (my own)

 

Packing medications is another obstacle. No, I'm not a senior drug dealer, I really have prescriptions....see???   The Enbrel had to go in the frozen ice pack bag.  Carrying all your medications onto the plane is quite a challenge.   And having to take off my shoes to show my arthritic feet.....lovely.  Many...oh I'm sorry's.."you poor thing".

                              a sample of my prescriptions

Disney World.....how do they expect people with our disabilities to get onto that moving assembly line for the rides?    That was a ride before the ride.  I didn’t look forward to trying to coordinate the moving sidewalk with the jump into the cars.  Or climbing down into the Pirates of the Caribbean ships.  Or the lady who did need a scooter in the Big Bear Jamboree who tried to get out of the doors at the end of the show and rolled over my right foot, hit the trash can by the door and almost took out an 8 yr old boy.  I'll take a condo by the beach any day. 

At Christmas, I don’t put a tree up anymore.  Even the easiest are tough and bulky for me.  I have a little ceramic tree that my parents had.  I'm always afraid of dropping it when I get it out of the box.  Almost "everything holidays" has gone to my daughter or the grandchildren. 

Wrapping gifts is totally out of the question.  I used to take pride in my wrapped presents.  Then they started to look like I let a 5 year old wrap the gifts.  No tight corners....fighting with the tape.  Since giving up wrapping, it's been gift cards and money for the family.   

This is the first year I'm not sending out Christmas cards.  It's too hard for me to address all those envelopes and write a little note inside the card.  My wrist starts to ache and my fingers are stiff.  I usually send out about 80-90 cards every holiday.  Stamps are expensive also.  That’s another tradition I'm not carrying over this year. 

 Holidays bring about the snowy wintery weather which is great if you're ten.  But for me, its another obstacle.  I have to pay for the snowplowing and watch my klutzy footing which is bad enough during July much less December.  I try to find rock salt that comes in a smaller and lighter bag. 

 

Now my idea of a fun evening is jammies and putting on my big fat slippers. Some days I do that right after the postman comes."

Traveling With an Invisible Disability

Traveling with a mostly invisible illness is difficult. It can make you sound neurotic when your concerns about problems seem trivial to others who have the power to help you. Generally I take advantage of any help that is available. When I went to California for the Medicine X Conference in September I booked a flight with no stopovers that went direct to San Francisco. That was a big plus. 

Air Canada offers help to people with disabilities who register in advance. In practical terms this means after I check in they will take me that long distance to the gates at the airport in a wheelchair or little vehicle. I'll give a gold star to Air Canada for making life easier, without even a fishy eye as in "You look perfectly fine to me". The other issue with the wheel chair is the that going through customs usually involves a long line and standing in line is actually harder than walking. Missing that experience helps me.

I do go somewhat out of my way to remind myself, and to help others realize that I can't carry heavy things. When travelling I invariably wear my wrist braces because it's a lot easier than explaining over and over.

I travel with older splints so breakage or loss will be less critical.

On the way home to Toronto from San Francisco I asked at the gate if there were any rows that had empty seats but was told the flight was fully booked. An hour into the flight when I got up and looked around there were many empty seats. After I explained to the flight attendant that my fused wrists meant it was a problem to maneuver in a small space they gave me another seat. The other two people in my row were delighted to see me leave. That's an example of the value of making a reasonable request in a non-confrontational way

I've learned a good lesson about getting cheaper hotel rooms. This doesn't work when the hotel you want to be in has a big conference, since they are generally full in that situation, but if not I check the prices on the cheap sites like Trip Advisor for instance. Once I have that price I phone the hotel direct and say I would like to book a room but I found it listed cheaper online. Usually they will match or better that price for you. This was a tip from a front desk person in Nanaimo and has worked very well as a money saver. The hotels get so little money from the online sites that when you book that way you are often put in a little room by the ice machine. 

The harbour in Nanaimo from our hotel room

I also ask for a room with grab bars in the bathroom. That helps and usually the rooms have other useful touches for disabled guests. 

Customs and pills is a worry: The drugstore that I use made a set of small labelled vials for prescription drugs marked "For Travel". That helps reduce the volume of pill containers and gives me "official" pill vials. 

For vitamins I used a muffin tin and saran wrap that sticks to itself to make little "pill pockets".

Long ago I got tired of pulling out tubes and containers of creams and moisturizers so I now put them in these sample size jars. It saves a lot of wear and tear on my hands and they last weeks between fillings.

For my one "personal item" allowed on the plane in addition to my carry-on on for the flight I chose a backpack. It's roomy and easy to handle. That makes it great for hands-free shopping and carrying a computer, cables and rechargers.

For the plane I take my Tranquil Eyes goggles in case it was too drafty or bright during the flight. Using them can help dry eyes from Sjogren's Syndrome, help you sleep or ease a migraine. 

Tranquil eyes

This post is part of a blog carnival for the Hurt Society Blog Carnival ePatient Travel Edition. Link to be added