I recently published a blog (June 26, 2014) entitled “A Short Trip Back Home.” In that blog, I discussed the fact that going away for a weekend required just about the same amount of preparation and packing of equipment as going away for a week. Now, I want to discuss the “lessons learned” from that short trip.
I have to say that this trip back home was one of the most miserable we have taken in quite a long time. Maybe that’s due to the fact that we have not tried a short trip since Lynn became restricted to the use of a wheelchair, but I think it just speaks to the complications of taking trips. Why was it so much worse? There are two possible reasons I think for the difficulty of this trip–the first being that Lynn is being detoxed very slowly for heavy metals. The detox process makes him VERY tired on top of the MS fatigue that is a constant in his life. Needless to say, I couldn’t count on him to help in any way with the process, and because he didn’t have the energy to lift a finger, literally, he was more needy than usual and was unable to recover from traveling with just a night’s rest. The second reason was that when we go on vacation, usually, my daughter and son-in-law come over to help me pack up the van. That means I can continue to work on meeting Lynn’s needs while my son-in-law packs everything I have assembled into the van. This time I packed and had Lynn to care for all by myself.
Lessons Learned
Lesson 1: Take two days off to get ready for the weekend trip instead of one.
I took the day off before the trip to make sure I would have everything ready to go and could get started on time. It’s a five-hour trip. I wanted to get at least six hours of sleep before I left, and I wanted to be there no later than 5 p.m. because I wanted my best friend from school to come over to visit for a short time. I had not seen her in MANY years and we were going to be staying just a mile or two from her home—perfect opportunity to catch up with each other, or so I thought.
Since I had to take his food with me and I was not going to be home to do my weekend cooking for the coming week, I had to do quite a bit of cooking the day before we left. All this cooking is why I should have taken the extra day. Between cooking and doing laundry, I wasn’t able to do much packing the night before.
Since I didn’t get to bed before 3 and wanted (needed) at least six hours of sleep to be able to stay awake to drive, I didn’t get up till 9 the next day. Our morning routine takes 3 hours so that brings us to noon. It’s a 4-hour drive if we have no stops along the way, so maybe we could still make it to the hotel by five???
Lesson 2: Don’t try to do it all yourself.
I put Lynn to bed to rest before the trip while I started packing. While he’s been detoxing, he’s been taking a 1-2 hour nap each morning. I put in an indwelling catheter for the nap and trip and proceeded to pack the van.
As I looked at the magnitude of equipment and supplies I needed to take, and I realized I needed to take out the bench seat in the back of the van. I managed to remove the bolt securing it to the van’s floor but then I could not figure out how to unlatch the seat from the floor. There’s some type of safety hook in there that I could not figure out, and with my weak arthritic hands, I couldn’t get it to come loose, so I had to give up and screw the bolt back into place (many tears and words left best unsaid were involved at this stage) and just pack around it. By now, it’s around 2 p.m. (plus 4 hours for an arrival time past 5…maybe I can reschedule my get-together?)
I get Lynn up after I finish putting all the bags and suitcases in the van. I take care of his comfort needs, and then I’m ready to load him into the van. Part of the floor space needed for him to maneuver into his place in the van is taken up by a shower chair and cooler of food. It appeared at first that I would have to unpack them but at last, he shifted back and forth enough to roll into place. Of course, then I had to crawl around and lock down the wheelchair and all the other items so that nothing would shift during transit and smash us into unconsciousness as we traveled. I managed several moves that would have made a contortionist proud. At 3:30, we were finally on our way.
Lesson 3: Remember your function for “two.”
Since Lynn does not have the body strength to adjust himself when he’s thrown off balance in a curve, nor can he lift an arm that falls to the side, change a radio channel, or manage to hold a water bottle to drink, I have to function as his “body” during the trip in addition to driving. Therefore, I need to plan how to have all the essential comfort items close by within my reach as well as having his affected body part close enough to adjust. Also, I need to find a better way to help with the impact of going around an exit ramp. I slow to a crawl, but it often still throws him off balance or causes his arm to drop off the armrest. He has a board that has been cut for him to rest his arms on, which helps a lot, but I still need to create something to keep the arm from slipping off.
He also uses an electronic peddler to keep his legs moving so they will not ache. During the trip, his feet kept slipping out of the straps (even though I secured them with an ace bandage), and the shift in his feet would cause his ankle to rub against the sides of the peddling mechanism. Therefore, I had frequent stops to adjust his feet and re-secure the peddler into the proper location. I’ve suggested that before our beach trip in August, he ask his friend to build him a device to put into the floor of the car that I can sit the peddler into and which will not shift in the turns.
Lesson 4: Plan for a meal INSIDE the van.
Before our timing got off, I was thinking we would eat before we left, maybe get a snack at a drive through, and then eat when we got there. Well, our four hour trip took eight hours with all the stops to adjust body parts; therefore, it was necessary to eat a meal along the way. No way was I going to unhook all the straps to get him out and then back into the van, so I ran into a grocery store, bought sardines and hot sauce (one of his favorite lunch menus), napkins, a spoon, and a plastic bag to dispose of all the mess afterward, and I fed him in the van. Add a half hour, at least, to the trip for this.
Lesson 5: Plan that your plan is not going to work as you planned.
Flexibility–that’s the essential ingredient in any plan. Know that something unexpected is likely to happen. Plan for what you know but also plan for everything to take twice as long and to be twice as difficult. Then, if it’s not, you’re in a better place. Also, and I don’t mean to be pessimistic here, but also be realistic. Know that it’s entirely possible that you won’t be able to do what you wanted, or at least not how you wanted to do it. Don’t set your hopes too high. For this trip, I was not able to see my best friend from school, and I was not able to spend the day at our family reunion, but I was able to go to the reunion for several hours. Lynn, however, was not able to do any of it. He made the trip and was too tired the next day to be part of the fun. Lesson learned: Plan for the person with MS to have a day of rest after traveling before planning any activities for him/her.
So, those are the lessons I learned from my short trip home. Hopefully, I’ll remember them for our beach trip in two months, and everything will work out better for both of us. But one thing for sure, I learned: short trips are out. If we don’t have two days before the trip and a day between traveling and the “event,” we are not going. That’s a necessity of life for now.
This article originally appeared on Multiplesclerosis.Net by Health-Union, LLC, and has been reposted with permission.
