How to travel with chronic pain
August 14, 2018 7:25 PM   Subscribe

I am looking at making a major international trip in about two and a half months' time. Despite my best efforts, I am really stressing out about how I will deal with my various chronic pain issues, especially since I know that the trip will be mentally and emotionally taxing as well and I will not have a lot of ability to deal well with pain. What can I do? Blizzards inside.

I have osteoarthritis in my knees and plantar fasciitis in my feet. My core strength is almost non-existent, so I have sporadic lower back pain as well. Standing/walking pretty much always hurts; I have trouble doing so continuously for anything over 5 minutes. (I also have other neck/shoulder/elbow pain, constant and mysterious abdominal cramping, and am prone to headaches that make me acutely noise-, smell- and light-sensitive, but I am less concerned about those aspects because they don't directly affect my mobility.)

I'm in Australia, I'll be flying to the US (Melbourne - Sydney - Dallas - Pensacola, so a nice short hop). I'll have time in Florida, then fly up to NY, assorted road trips, back to Florida, then back to Oz (Pensacola - Dallas - San Francisco - Melbourne).

I am not worried so much about the flights, which will be tedious and uncomfortable, but I know what to expect. I am worried about the airports. I know that I can ask for assistance getting from check-in to the gate on one of those little electric cart thingies, but there's all the standing around in very long queues as you clear customs, go through security theatre to test for gunshot residue and have to take off your shoes (that part is easy, less so is putting them on again later), all that kind of thing. I cannot stand in long queues. My knees lock and then painfully, crunchingly unlock each time I have to shuffle forward three steps. My lower back aches and throbs and before long roars in agony. But the other people in the queue are unlikely to say, why sure, you go straight to the front of the queue, we don't mind. And the sources of my pain are not visible and obvious - there's no cast or crutches or anything that shows I can't do this without massive pain.

Even when I get to my destinations, the worries do not stop. I know for sure that there will be lots of stairs to cope with. I can do stairs in small doses (slowly, one at a time, clutching a handrail) but there are lots and there isn't always something to hold on to. Plus, I will be seeing people who have not seen me with this little mobility before and I am scared and ashamed to admit that I will not be able to do things we have previously enjoyed doing (visiting museums and other places in NYC, walking numerous blocks, riding the subway standing up). I walk incredibly slowly. I will have trouble just walking down to the shop on the corner to pick up milk if we run out.

I can't do anything about the osteoarthritis, although I have been doing short stints on the exercise bike every day for the past three and a half months to help build strength in my knees, increase overall fitness, etc. It hasn't been a bad thing to do, and I am pleased I have stuck to it, but I absolutely still have pain. I've increasingly become aware that my core strength is definitely something I need to work on, but beyond a few exercises meant to encourage ab-strengthening haven't been sure how to do this.

I am getting to the point where I am seriously wondering whether I should cancel my trip before it's too late because I just can't think how I will be able to cope with everything. I know you are not my doctor, physiotherapist, myotherapist or psychologist; nor can any of you make my decision for me. But I am increasingly feeling like there is nothing I can do except look forward to more pain and even less mobility so travel is right out. I really need some hope and to feel like I can actually still do things, but I don't know what I can do to make this happen. Alternatively, if it just sounds like I would be better off cancelling the trip and I am just in denial, please, tell me.

Also I know that there will be suggestions to get a cane (have one, doesn't help) or a walker/rollator with a seat (I have looked them up and have not been able to find one that will accommodate both my enormously wide hips and similarly massive weight) and go swimming (no, no and more no) so please bear in mind that I have thought of these things already.
posted by Athanassiel to Travel & Transportation (16 answers total) 3 users marked this as a favorite
Best answer: I am sorry you're dealing with the stress of this. I will let others weigh in on other parts, and I think you shouldn't go if you don't want to, but if you do go, you can tell the airline in advance that you will need a wheelchair at the airport. Check first to make sure your airlines do this, but mine did. They will have someone push you around the airport and help you board, not just make you get onto one of the communal carts. You will be sitting in the wheelchair the whole time you're in line. I needed this once, when I was traveling in pain, and I didn't need a doctor's note or anything like that. It was very helpful.
As for the shame: please don't be ashamed of decreased mobility. NYC happens to be in a moment of waking up to disability activism. I don't know if you can get a wheelchair while you're there, but museums should be accessible, and buses certainly are.
posted by nantucket at 7:35 PM on August 14, 2018 [10 favorites]

If you were my friend/ family member, I would be so incredibly exited to see you! It would be great to be able to talk in person... Skype (or similar) doesn't compare. It doesn't matter to me if we can go sight seeing or not. I would appreciate a heads up though, on what you can/ cannot do, and what you need, so I could do some advance planning.

Remember, in NYC you can get just about anything delivered. You might need to do some testing *for science* :).

When my mom traveled with a broken foot, she was able to have someone from the airline push her wheel chair through the airport. She also rented a knee scooter at her destination. Obviously, a knee scooter is not suitable for your situation, but would renting a power chair help at all?

That being said, it's 100% okay to put on your own oxygen mask first. If traveling is *too much* then, don't do it. Or perhaps instead of staying with friends or family, you book yourself an ADA compliant hotel room.
posted by oceano at 8:25 PM on August 14, 2018 [2 favorites]

You will not have to stand in line of you tell the airline you need a wheelchair. And people will happily let you skip ahead in the US if you are in pain like that. America is really amazingly good about disabilities compared to most other places.
posted by fshgrl at 8:30 PM on August 14, 2018

I imagine the people you plan to meet will still want to meet with you even if your plans need to be tailored a bit, but I think that would be my first step - contact them and let them know ahead of time that you have mobility issues. I think managing expectations ahead of time will be vastly less stressful in the long run than trying to suffer quietly or having a really bad situation arise. (Note - you may want to look into health insurance options and what you'd do if you need to see a doctor/hospital while in the US. You don't want surprise multi-thousand dollar ER bills.) They can help adjust your group plans and help assess if your trip is viable right now and how if at at all to make it so.

If you think you can go - absolutely register ahead of time for wheelchair service at the airports. I am young and decently healthy but for various health reasons have used them a few times and they are a savior as long as the attendants actually come, which they usually do. And no one ever told/scolded me I was too fit to use them even though a couple times nothing would have appeared hurt to an outsider. Do be prepared that attendants and the TSA may ask what's wrong but that's mostly so they don't accidentally hurt you. Bonus - you'll skip a lot of line time and tight connections and Customs will likely be easier.

Also, look up if you can rent an electronic scooter. Either in each city, or at destinations; for instance, the Kansas City Zoo has electronic scooters for rent. I think Disney might, too? This suggestion might mean you and your travel party change your itinerary to fit your needs. And be willing to participate up to a point and leave to rest when need be or pass on activities you know you can't do. Also, be willing to pay for things like taxis if they help. Ten $30 taxis are better than misery and/or a $500 doctor's bill.

If that doesn't feel like enough, then yes, I think you can cancel this trip and wait to see if things improve. I have a family member with mobility issues and they get spinal injections and knee injections and I'm not really certain what all is in the injections (I think the first is cortisone and the second are some form of artificial cartilage but I don't have the details at hand) but they help a decent amount, as does having access to pain management. So extending your team of doctors and treatments may help, too, but that will probably take a while to set up.
posted by vegartanipla at 8:33 PM on August 14, 2018 [3 favorites]

Best answer: It sounds like a lot of issues are tied up together in this question- I think i detect some body shame around your size, and some isolation / depression in that your friends don't know how your mobility has changed and you don't want to tell them.

The thing is, arthritis is a disease and it's really painful and it messes with your mobility and there's no shame in that.

"Hey pals, as you know I hate to complain or ask for help but I should let you know my knee arthritis is flaring up right now so I can't walk much. But I really want to see you. My thought is that I'll bring a great novel and will read it happily at the hotel while you go for walks and museums, and then I'll Uber to join you for sit down activities like meals. I genuinely can't walk more than about 10 yards without pain, so this is the best solution. Does that sound like it'll work with what we're planning?"

If you were my friend I'd probably leave a few times and go do a few walky things if I was really exited about them, but mostly I'd be happy to hang out and have yummy meals and conversations with my friend.

I'm sorry your body hurts but I'm more sorry you feel so isolated because of it. Everyone has periods of diminished health; it's truly not a reason for self-loathing. I hope you make a choice that feels good for you!
posted by pseudostrabismus at 8:50 PM on August 14, 2018 [12 favorites]

The convenient thing about NYC is that you can get just about anything delivered, and, in Manhattan south of 110th St. at least, getting a taxi requires little more than waving your arm at the street. I encourage you to budget for taxis. My friend has mobility issues due to diminished vision. On her last couple of visits we have switched from subway to taxis once it gets dark, and it has really made it a lot easier for her to enjoy running around town.

I would not assume that you couldn't use a wheelchair at, e.g., museums. I know you can borrow them at the Met, for instance, and most of the building is accessible to wheelchairs. Some may not be possible because of the historic nature of the building, but the website should tell you.

I'm sure your friends really want to see you and will be happy to do whatever it is you are comfortable doing. I'm a partisan of the MTA, but I sure don't consider it any kind of loss to me that my friend can't easily travel with me on it at night anymore! Come visit our city!

(By the way, whatever painkillers you're taking, be sure to bring the prescription with you. We are going through a weird upheaval in attitudes towards prescription painkillers, and it's better to have it for border crossings.)
posted by praemunire at 9:07 PM on August 14, 2018

Response by poster: Promise not to threadsit.

The purpose of my trip is to visit my partner (Florida) and my family (NY but not in the city, the city is accessible but not where I will be based). I wouldn't be going to the US otherwise; no offence to those of you who live there, but between Trump and people constantly being shot, I consider the US to be a Dangerous Place to visit and would avoid it like the plague. There will be roadtrips to visit other family in MA and PA and DE. All of my family have houses with stairs. Stairs are unavoidable. They know I have mobility issues but it is one thing to be told and another to realise how much your family member can no longer do, especially when you remember them always being able to go up and down stairs easily, go on long rambling walks, dance, etc etc. I will be having my own difficult changes to have to come to terms with, like a parent recently diagnosed with Alzheimer's, so I understand how confusing these things can seem when you have not been able to get used to things gradually. I myself am still in denial about how much I can't do. However, the main point of the trip is spending time with people I care about, not tourism, so I don't mind greatly if I can't do All The Things.

Your answers so far are making me realise that yes, I do have a massive amount of shame - the idea of someone having to push me around in a wheelchair is just agonising. Any tips on overcoming that shame would also be really helpful, if anyone has had to do the same.
posted by Athanassiel at 9:33 PM on August 14, 2018 [3 favorites]

Best answer: I like this blog- a man who is large, gay, a wheelchair user, and a disability activist writes about his life. Very insightful thoughts about shame and access.
posted by pseudostrabismus at 9:48 PM on August 14, 2018 [3 favorites]

Best answer: Regarding the shame specifically as related to airport wheelchair services - people are paid specifically to provide this service. It is a part and parcel of what you paid for in buying your ticket. Also, you deserve to not be hurt. Also also, if I asked you if it was okay for me to use the wheelchair service if I thought it would prevent me from hurting myself I am certain you'd be okay with it. You would not think I needed to feel shame about it. It would just be how it is in this moment. Have you ever flown and stared down the people in wheelchairs because they should be ashamed? No, because that's ridiculous and anyone who would do that is a massive, massive wrong asshole.

Now admittedly, I didn't like having to use the airport wheelchair service. I prefer when I'm 100%. But I rationalize it such: if using the wheelchair for the airport means I can function my best when I arrive, isn't that SO MUCH BETTER than the alternative? It's like making sure I have access to Kleenex when I have a cold. I don't have to, but man, it's the best option for all involved.

Speaking of best options, when you go the airport wheelchair route do it ahead of time. If you do it when you get to the airport there's a risk they'll input it only for the first leg of the full journey (ask how I know). If you have multiple airlines make sure you put it on each ticket.

Also, regarding visiting - if you can come up with fun sitting-down-together activities ahead of time, those help occupy time in a usually non-injurious fashion! Card/board games, craft activities, laborious recipes, etc. You should ask to be housed on the ground/main floor if at all possible (again, ahead of time so your partner/family have time to arrange it).
posted by vegartanipla at 10:25 PM on August 14, 2018 [4 favorites]

Best answer: These problems are not unique to you and other people have worked them out, so it's going to be okay.

I mean... in the airport, you book a wheelchair escort to and from the plans when you book your tickets. That is very easy. Carry a collapsible cane if it makes you feel more valid.

In my house, I climb down the stairs when I come down in the morning and again when I go up at night and literally never in between because I can't. I bring my clothing for the day down with me, shower downstairs and put my PJs in a bag, put the bag at the bottom of the stairs, and carry it up at night. If I forget something I do without unless it's like, meds or my phone, in which case I ask someone to retrieve it for me. (Pro tip: ask for what you need.)

If there are side trips you can't do, you can't do them. People want to see you on your trip. They can see the costume exhibit at the met any time.
posted by DarlingBri at 1:42 AM on August 15, 2018 [6 favorites]

Best answer: I've traveled from Australia to the US with someone who had arthritis. He was in his 20's was tall and looked fit, so was often not believed, and his request for a wheelchair to meet him at Sydney airport was ignored (quite dismissively). His domestic flight was so late that he landed after the flight to LA left, but had it been on time, I'm not sure he would have made the connection without the wheelchair. He was put up in a hotel, after a fairly long wait, they did give him the assistance he needed. This was 10 years ago, so things may be better now (he got a gift voucher from QANTAS when he complained). I would recommend having some sort of aid (walker first australian google result for a heavy duty one or stick) for the airport, mostly as a visual reminder that you asked for and need help. A lot of people will help if they know what's wrong, and an aid of some sort helps them know. Also don't book flights with short connections, so you can just sit where you are if something goes wrong with your wheelchair/transport assistance and not stress too much. (I have changed flights to get longer connections before, because I hate airport stress).

Once we were in the US though, it was fine. From memory, he got better help at LAX. I was generally able to drive him right up to the front door of venues and drop him off, and then go and find parking. They don't walk much there. We didn't see the really big red woods, which was sad, but there's so much to do within a very short walk of the nearest carpark, it didn't matter. We buggered up the buses in San Francisco, and ended up in taxis a couple of times, but that wasn't a big deal, and getting around is probably even easier now, with google maps and uber.

If you've got a disabled parking placard, it looks like there's a reciprocal agreement with the US. I would highly recommend using all the disability services that you can (large malls and destinations often have wheelchairs you can borrow, the websites we generally give accessibility info), saving your strength for enjoying the time with your friends. Communicate with your friends about how you're going. I couldn't tell how much pain my friend was in until he needed to stop, he hid it so well.

Have a great time! All the US people I've ever met are lovely and really like to help. If you get stuck in Sydney, yell out to the Mefites. I'm close to the airport as are a few of us, and we can take you out for drinks or we'll send taff go and yell at airport staff for you.
posted by kjs4 at 1:56 AM on August 15, 2018 [6 favorites]

Best answer: Hey Athannasiel!

I've been a visibly queer disabled person in so many US airports I can't even count them. I don't know what disability services are like in Oz, but here in the US - you just let them know you need a chair, and they show up with a chair and you get where you're going. People generally get out of the way and let you pass. I've never seen anyone get harassed for using a wheelchair, and you know how much time I've clocked in airports. Because I walk with a cane now, I've often been offered a chair fairly aggressively by the wheelchair staff. They are all super nice and extremely professional.

For tourist activity, there are a lot of places where wheelchairs are available - I've gotten them myself at museums on occasion because hard floors are terrible and once because I'd broken my ankle. The worst I've ever gotten is the joking "what did you do?" when I had the huge boot on my foot.

I think other people have made better recommendations about dealing with internalized shame. Assholes are relatively rare, but I try to assign them a mental soundtrack that emphasizes their ridiculousness, or else I yell back - "I may not walk great, but you have no excuse for being an asshole", that kind of thing. You are an amazing, beautiful person coming to a dangerous and uncivilized place to visit people who know how great you are, and I hope you have a blast.
posted by bile and syntax at 6:00 AM on August 15, 2018 [2 favorites]

One thing that might help is to remember that if you're visiting them on their home territory, they might not be as invested in doing touristy things as you think. Sure, you've enjoyed doing those things in the past, but they live near those things and if they really wanted to do them, they could have and would have gone without you.

People who live in exciting places often feel like they have to show guests a good time and entertain them, but if you don't need that, they might be perfectly happy to stay home and play Scrabble with you. So, feel less pressure to get out and do a bunch of different things because it's expected by the people you are visiting -- there's a very high chance that they are going out and doing things with you because they feel you expect it of them.

I visit my relatives in Vancouver, and while we like to take that as a reason to eat in some nice restaurants, mostly I go to the pool with my Mom (she walks there for extra exercise, I drive because I have chronic pain), play playdoh with my niece and nephews and otherwise fit myself into their regular lives. That doesn't completely allow me to avoid stairs (there are so many damned stairs in the house where they all live) but it means I am not dragging myself through museums and parks just because.
posted by jacquilynne at 6:42 AM on August 15, 2018

In addition to renting a chair, you may be able to get a massage in some airports, if that helps. Build in as much pain-reduction as possible - a cane might help, take meds before it gets unbearable, rent a hotel room at the airport and have a hot bath - that sort of thing. Be assertive with family about the need to avoid any foods that cause trouble; my family continues to ignore me about dairy. I'll eat the stuff that doesn't have it, but don't tell me you didn't use butter/ milk/ cheese/ yogurt if you did, sheesh. And about your need to get adequate rest, have a bathtub available, room on the ground floor, whatever helps. Pain and exhaustion can be cumulative, and all those little things can add up.
posted by theora55 at 8:45 AM on August 15, 2018

One thing to look into might be a place to stay near your people that's accessible for you. This might be an Air B&B that's got a full bathroom on the ground floor, or an apartment with an elevator, or a full hotel suite with grab bars in the bathroom and ramps to the door, depending on the area and availability and your budget. This might be something to do just part of the time, like before you're about to leave to help you recharge a bit before that last travel push, or in the middle to help you relax when you're between road trips, or maybe just whenever someone's home isn't going to work.

As a host I'd want you to be comfortable and feel safe. If my house doesn't do that I'd really want to make sure you have a place nearby that does, rather than assume you can navigate stairs after a day of doing stuff, or assume that you're okay to take a slippery shower in the morning and force you to painfully rush. You need to tell your people what you require, especially as your situation's changed from before. I absolutely think you should travel, that everyone regardless of mobility problems should be able to travel, especially as you're visiting loved ones, and it can be so helpful if you give them the chance to accommodate you.

Basically, you're making the monumental effort to travel halfway around the world to be there with these people. They'll want to meet you just that tiny bit further, be it down the road or in their living room or a town over with an ADA compliant hotel suite.
posted by Mizu at 1:29 PM on August 15, 2018 [2 favorites]

I know that you don't usually use a cane but could it help you just for stairs with no handrails? My daughter who now uses a walker recently came to visit us. Our house is designed so that you absolutely have to go up a couple steps without handrails to get in and out. Since she needed to be able to go in and out without assistance, the solution was for us to borrow a second walker (one stayed inside at the top of the steps, the other was for outside at the bottom of the steps.) and then use the cane for balance and support on the steps. Maybe the cane part would work for you?
posted by metahawk at 9:58 PM on August 15, 2018

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