Category Archives: From all 3

Pride goeth before a fall: the story of three women and a wheelchair

For someone who is not visibly disabled, using a wheelchair is humbling. I have learned over the years though, that the ability to enjoy a vacation with my family is much more important than my personal pride.

December 26 – January 2 we took an Eastern Caribbean cruise on Norwegian Cruise Lines (never again, but that’s a story for later). My husband and I in one cabin; my mother and two daughters in the other. NCL messed up the reservation and did not put us in disabled cabins. We were able to get their room changed, but not ours. Thank goodness, I am not in a wheelchair full-time. In fact, I am usually only in one for extremely long physically challenging days (like doing Disney World or something). But we take a travel wheelchair and a cane just in case.

fatesBut like the three blind fates sharing an eye, we had one wheelchair to share among us. Turns out, my daughter and mother used it more than I did. In fact, I don’t think I used it at all – although I could’ve benefitted from it.  Canes often hurt more than they help, because of my wrists.

In addition, we also forgot the footrests..so for my mom, holding her feet up hurt worse than walking.

We provided our tips for traveling, but here are my notes for traveling with a shared wheelchair:

  • Be prepared to have to explain to the crew (ship and plane) ad nauseam how one is disabled and sometimes in a wheelchair and sometimes not.
    This includes working with airline personnel for assisted boarding of one or more of our party who may or may not be in a wheelchair or using a cane. Mobility challenged is not always visible. In my case, my biggest challenge with flying is balance issues on the ramp.
  • Be prepared to explain it again.
  • Learn to ignore the looks of disdain on people’s faces when they see you out of the wheelchair. 
    People can be unknowingly cruel. Sometimes they are outright insulting and demeaning, but there are times when they are genuinely confused. Unfortunately, most people choose to first go to the insults and scathing doubts. Meeting this so often can have a chilling effect on us using a mobility aid, which then has a chilling effect on our enjoyment of our outing.
  • The wheelchair can serve as a walker.
    Oh, this is the best benefit of all. One can sit in the wheelchair and the other can push it, effectively using it as a walker. Or even if no one needs to sit in it, it can easily carry belongings (and shopping bags) that would be impossible for us to carry. This can detract from shopping (gasp!), so in this case, the chair really does help. Yes, a cart would help as well, but 1) pulling something makes my arms go numb – which is why I cannot pull a suitcase and absolutely love the 360 swivel bags and 2) most carts cannot serve the dual purpose of a walker.

As stated in the beginning, sinking my pride does not compete with being able to enjoy vacation time with my family. I rarely have to use a wheelchair, but the number of times I have collapsed in public because my legs gave out or my back seized up (and I truly mean seized like a Norse god slugged me with Thor’s ginormous hammer) has convinced me that an ounce of prevention is worth that pound of cure. Although – some paramedics are incredibly hot. That kind of thing truly puts a damper on a family outing.

So we sink the pride and try to ignore the judgmental idgets sharing the air around us.

– and by the way,  it is amazing the number of IQ points one loses between standing on two legs and sitting on 4 wheels. The unconscious discrimination is appalling.

Advertisements

Travel Tips

royal planeTraveling can be challenging for everyone; but when you have systemic issues, traveling can be a nightmare. There is still some debate on whether direct flights or connections are better. Dazlin likes connections because sitting for 5 hours is brutal. K likes direct flights so she only has to board/unboard once and hates the unpredictability of connections.

Below, each of us has listed our best travel tips that work for each of us.

Charis
1. Always be prepared for anything- Includes meds for migraines, nausea, etc. 
2. Always know your limits- if you can’t stand in the security line- tell them you need the fast line due to a disability, do not let pride get in your way.
3. Flights are almost always cold- bring a jacket or pillow- being cold is hard on the joints.
4. Know your diet- if the stress of the flight makes you nauseous carry crackers and bland food that is easy on your stomach.
5. Dress in clothes that are easy to move in and easy to get through security in. We already move slow- don’t wear tight shoes with belts and a lot of bracelets- you have to remove all of those to go through security. 

Dazlin
1. At least an hour layover. This means you have forty minutes to grab a snack, use the restroom, etc., and don’t have to run with suitcases. An hour layover means you have 30-40 minutes before boarding.
2. The window seat. This is nonnegotiable on long flights. I can’t sit for long in the same position, and I need the window seat so I can contort in whatever way I want.
3. Just check the baggage. Just do it. It’s a literal weight lifted from you, mentally and physically.
4. DO NOT put your liquids baggie in the same suitcase pocket as your meds baggie (which you should always have on you). I learned this the hard way… Twice. (but do keep in mind that if you have liquid/gel meds, you can carry another liquids bag for meds – just tell security).
5. No plans directly after landing… I always fly in at night, so I can just eat and go to sleep upon arrival. I’m not very functional, which means not very happy, after flying. Perk: when you fly at night, the city lights are pretty, especially from your window seat.

K
I love to go other places, I just hate having to travel there. I know I will likely enter a flare after (if not during travel).
1. Use a quality swivel rolling suitcase (my arms go numb pulling a suitcase behind me).
2. Pack food for dietary needs to suffice for the trip, even if going to a conference that should have food (I have celiac’s).
3. If I don’t have an elite status that puts me in a shorter line, then I ask for a wheelchair. Standing in long lines is torture.
4. Build in recovery time during and after the trip.
5. Become a packing ninja. A few neutral pants/skirts with lots of stand-out tops. wear jeans to travel (they take up space). I can get a whole week or more in an overnight bag.

These are the tips that work for us. Unsaid is lots of meds… prophylactically if need be. Hope this helps you!

 

 

Welcome to Life as a Royal

cropped-10321031_10204347392396062_1246151472122139807_o.jpgHello and welcome to Life as a Royal. We thought about naming this Royal Pains, but frankly – we get that a lot with our names.  This blog is about three women, a mom and two daughters, all in different places in their lives – different perspectives, different opinions, and many of the same health conditions.

As people with disabilities, we are functional and successful, but that does not mean that we don’t have our challenges. K is 47, a privacy attorney, and in the dissertation phase of her PhD. Charis is 22, recent summa cum laude graduate with dual degrees in anthropology and biology from Arizona State University. Dazlin is 24, a master’s in education student focusing on STEM at Arizona State University.

We are just kicking this off and plan to add a lot of content. We welcome your questions, suggestions, and comments. Please see our individual pages to learn more about each of us. Where possible, we will each provide our responses to issues and inquiries, which is the purpose of this blog…seeing how we approach the same issues from three perspectives.

amicrobialworld

- How much do you know?

at the Heart of Privacy

K Royal (@heartofprivacy)

Controller Issues

Gamer Dads Who Need an Outlet