Last weekend I went out of town for a family wedding. As regular followers know, traveling has been tough for me recently. I used to travel *a lot*! I visited family out of state at least 4 long weekends per year (2 of those involved flying.) I spent many
Connecticut trees from a train window
weekends and long weekends and sometimes a week in Maine each year. Then I would take a bigger trip each year, either overseas or to the west coast. If I was in town for 2 months, I’d get antsy. But that was before.
In the last year I have left town only once: to go to a family wedding in NY in July. And I was incredibly sick. My gastrointestinal symptoms were severe and the fatigue was terrible. So you can imagine my surprise when this weekend worked out ok, especially since it almost didn’t happen!
Last week I was in horrible pain. My toes were swollen and painful. I can’t use a cane or crutches because of the instability and pain in my wrists. Prescription painkillers barely help and the side effects are terrible. Cannabis takes the edge off, but that’s it. And I can’t use it on a train. Walking was difficult and painful on Monday, it was horrible on Tuesday, and it was nearly impossible on Wednesday. That’s when I started to question if I’d be able to go on this trip. I cried as I thought about missing the wedding of someone I care so much about. But how could I go?
I talked through every possible stage of the trip with my mother, a friend, and myself. All three of us came to the same conclusions. I needed the pain to improve. The train left Friday morning, the wedding was Saturday night. The dew point was set to drop on Friday, which meant I should feel better on Saturday or Sunday, but would that be enough? How would I navigate the train station? How would I even get there?
Thursday came and went, with pain similar to Wednesday’s pain. Thursday night my boyfriend broke up with me. It was not a good day. A neighbor took out my trash for me, since I couldn’t even make it to the basement where the trash bins are kept. I hobbled around my apartment packing. I rested. I hobbled and packed some more. I cried on the phone to my friends about possibly missing the wedding and about the breakup. I ordered a cab just in case I went, since I knew I couldn’t take the subway to the train station in my condition. I was ready for the trip, but would I be going? I oscillated for hours.
Friday morning at 6:30am my alarm went off. I never feel good when I wake up that early, but I ignored those symptoms and focused on the pain. It was still there, but it was better. Was it good enough? I showered. Could I make it? I dressed. It hurt, but not as much. Would it stop me? I packed my CPAP machine and other last-minute items. How bad would it be if the pain got worse again while I was out of town? Halfway through breakfast I finally decided to go.
I hobbled to the street and took a cab to the train station. There, I got a wheelchair and breathed a huge sigh of relief. The red cap took me right to the train and put my suitcase in the overhead rack. When I arrived at my destination, a red cap was waiting with a wheelchair. I was in pain when I arrived, but it wasn’t too bad.
The next day, the pain was worse again. While my family went out and explored a new city none of us had ever visited, I sat in the hotel room. At first, it was relaxing to read a book and rest. But I quickly got stir-crazy. The room didn’t get great light, and I wanted to get out of there. I called the front desk and asked if they had a wheelchair for guests to use, and they did! I called my mother on her cell, and she and my dad came back for me.
A little while later, we were strolling through a farmers market, sitting in a beautiful park, and then enjoying a nice lunch. It wasn’t fancy. It wasn’t the way I would have explored a new city if I was able to walk. It’s not what I would have done 3 years ago. But it felt so good to get out of that hotel room! I was so happy! The wheelchair gave me a kind of freedom I wouldn’t normally have had, even while I lacked the freedom to choose where I went, since I needed my parents to push me.
Thankfully, miraculously, my prediction was pretty accurate. By Saturday night I was up and about at the wedding. I kept most of my standing weight on my other foot and I sat more than I otherwise would have, but I also danced a bit (well, I planted my feet and wiggled my hips, because there’s only so much you can do when you’re in pain.) I walked around and socialized. I enjoyed myself, to my own shock and pleasure.
The next morning I was in pain again, but it wasn’t as bad as in previous days. Again, we borrowed the hotel wheelchair and my parents pushed me a few blocks away to where the entire family was meeting for brunch. We had a wonderful time!
The return trip went well. Again, red caps took me to and from the train in wheelchairs. I took a cab back to my apartment. It was Sunday, and the pain wasn’t too bad, but it was enough that I wasn’t about to wrestle with luggage on the subway. Yesterday, Monday, I woke up with almost no pain. I went out and ran errands. Today I’m fine. The timing sucked, but thankfully it all worked out ok.
But it couldn’t have worked without wheelchairs. I wouldn’t have been able to manage the train stations. And even if I’d made it down there, I would have been miserable and depressed at the wedding after a day of being trapped in a hotel room. I don’t want to need a wheelchair, but I’m so glad to sometimes have the option of using one when I need it!
Do you ever use wheelchairs as an occasional or part-time aide? How do you feel about it?
Chronic Rants 
[…] other day I wrote about the freedom of a wheelchair. I wrote about how using wheelchairs allowed me to travel last weekend when I otherwise […]
Hey – just catching up! Yes – the answer is yes! I am 2 months into my diagnosis, and have found that a wheelchair is a great “fatigue” management option for me. Could I wander around the mall with my family? Maybe – but likely not since walking in from the car is tiring. It is one of those weird things because yes – I can walk – and I am supposed to try to stay active because – lets face it – being in a wheel chair permanently is likely how this thing will end, and being active is supposed to help maintain the functionality of my limbs, BUT – if the choice is walking into one store and then having to sit somewhere until everyone else is done, or getting to participate in a wheelchair – that’s what I choose! Do I love it? Well – I don’t really love anything about this, but we have to get to a point where we figure out how to be able to do things. Right!?!
You put it perfectly, wlerch! Yes, we need to be as active as possible, but on the days that it’s a wheelchair or nothing, I choose the wheelchair! It sure beats sitting home alone!