Travelin’ Jan

Trying to reconcile traveling and dealing with MS has proven to be a challenge. It definitely isn’t easy even to just think about making any plans. In fact, the summer season is here and the best I can do is order two travel videos, one about France and the other about Germany. (no airport lines, no traveler’s diarrhea, no angry refugees)

The longer I have had MS (sixteen years now) the better I have become at talking myself out of doing anything fun. Even summer music programs at the beach are missed (last week in my town featured the U.S. Coast Guard Band) because of anticipated logistical problems: would handicap parking be available, could I move through sand/grass in a wheelchair? It’s easier to just stay home.

I admire, but don’t emulate,  people with disabilities who are always on the go. Obviously they have inner resolve. Unfortunately for me, mine was left on the conveyor belt when my body/mind parts were being assembled. Kudos to those courageous people.

I don’t like going into the stores to shop anymore. (parking, aisle width, shelves too high)But I have become quite good at online shopping. Now you may think that is psychotic. Why bother having nice clothes and jewelry if you’re not out visiting with the peeps? Don’t know. My rationality chip was left on that same conveyor.

Can an old dog be taught to learn new tricks? I hope so because if I get anymore housebound my traveling will be limited to visiting/hiding in my hall coat closet. That may not be such a bad thing, though: I can order a new winter jacket while I’m in there. (always hoping I will actually go outside when the time comes)

Who knew?…Bamboo!

One of our luxury purchases when we were on vacation a few weeks back was a set of bamboo sheets. I know, it sounds crazy to me too, but these sheets are the softest things my skin has felt in a long time. Imagine my surprise when I read an article in Everyday Health extolling their virtues for folks with MS.

In fact, there is a line of bamboo apparel perfect for fitness trainers too, i.e. workout tops, yoga pants, socks. The article’s author, David Lyons, discovered three benefits for bamboo: 1) it draws away moisture from the skin, a natural moisture wicker; 2) it’s an insulator, keeping you warm in winter and cool in summer; 3) it’s UV resistant, meaning bamboo could provide you protection from the sun’s damaging rays.

As a side note, I did have an after effect from the cruise that I didn’t expect. While vacationing, my feet and legs swelled up. My thoughts were that it was probably caused by ingesting a possibly higher-salt food diet, unused-to Caribbean heat, or reduced mobility (I was either in the chair or scooter when out and about), or a combination of all three. When I returned, I asked my doctor about it and she said it was “edema,” extra fluid in my legs. She prescribed a cream to soothe the itching.

In the meantime, we put the bamboo sheets on the bed. So soft. Next thing I knew, I had developed a rash on my arms, back, torso, as well as my legs. Absolutely blaming this newest crisis on the sheets, we yanked them off. However, the itching got worse. I went to a dermatologist who promptly saw that my original leg edema had overwhelmed my system thus developing the rash. Foolishly I had not immediately started wearing support socks when I originally developed the swelling. When I finally did, the swelling went down, my legs are back to normal, and the rash has pretty much disappeared.

The bamboo sheets had been relegated to the guest bedroom bed where my daughter, who sleeps over once a week for business reasons, marveled the next day about how wonderful they were. Sheepishly, I’m now in the process of switching out the sheets with the bamboo ones coming back on our bed. I found myself apologizing to the inanimate things about the wicked names I called them. My skin and I are happy again. My daughter? Not so much. She’ll be back to sleeping on run-of-the-mill, non-wicking, non-insulating, not-as-soft sheets. Oh well, the zero room price-per-night is the trade-off on that deal!


The Weeble-Wobble Effect

Is there actual documentation someplace that verifies people are usually depressed after coming back from vacation? If there isn’t, there should be. I’m in a funk today. I’m not willing to expend the effort to get in the car and just go someplace like my husband suggests. Any place.  Even simply going to the post office or recycling station errands. No, says I. Too much effort.

So why is that? The joy of vacationing shouldn’t be followed by the zombie-like state I’m in now. You can try, but there is only so much you can blame on MS.  My first explanation for my poor mood is always to put it in on  MS’s doorstep. Although it can be blamed physiologically, I think it more probable that it’s a by-product. You know, the way a hangover is the by-product of too much drinking when alcoholism is the root cause.

Anyway, I don’t want to expend any energy today. I’m tired of always mentally bucking myself up. I think I’d like to wallow in my depressive thoughts of my physically-changed life status for a bit. Let it just wash over me, this memory of vacationing that drained me to the point of being exhausted. The wallowing is a good thing, I think. Let it then flow away from me so I can get back to being my normal, upbeat self. My struggling during my vacation may have brought me low today because I am remembering all the things I had to overcome on the trip, things I did effortlessly before and took for granted. But once I acknowledge these downer thoughts, I am free to let them float away.

After all, it’s the “weeble wobble” effect that keeps us all going. You can knock us down once in a while but, like those toys, we always right ourselves again. In fact, I think I’m starting to look like one of those little guys! Egads! You know, I’m starting to feel better already!

The Gangway Adventure

We’re back from our cruise vacation, and I’m happy to report we did not have rough seas so I was not swept overboard, folks were very nice, we did not get sick with some heebie-jeebie stomach virus, and we didn’t end up wrecked onshore a la Costa Concordia.

I wish I could report, though, that I handled my mobility frustrations with charming graciousness, but I did not. I succumbed to tears several times because my rage at the inability to “do for myself” got the better of me. I did not like the fact that for nine days I was unable to be as independent as I usually am when at home in my familiar environment.

After a while I calmed down and looked around me. There were other folks onboard who used scooters, wheelchairs, walkers, canes, and other mobility devices, and they were actually smiling! They were having fun! What a revelation! So, armed with this new possibility, I became determined to also have a good time.

And you know what? I did. I can’t say it was the easiest vacation I’ve ever been on, but the pre-planning paid off. Where I anticipated trouble before the trip, I circumvented it by advance preparation. When I was blindsided by something unforeseen, I overcame it by adapting to it. Like my husband said when asked how we did:  “We had some difficulty here and there, but we worked through it.”

Actually, I guess that says it all whether you’re handicapped or not. Living your life is a matter of sometimes just showing up. Difficult things will get resolved one way or the other. I found out that it also helps to be creative with those resolutions. Don’t even ask how we put to use a wall-bolted, glass-framed picture with my hand-held, suction-cup gripper! You wouldn’t believe it.


On the Road with MS

I traveled to the great North Woods this past weekend to visit my daughter and her family in New Hampshire. Jean had been asking for a visit from me for quite a while. I’ve been hesitant because of the problems associated with traveling with MS.

When I finally decided to quit being such a noodge and step out off the “what if?”cliff, a curious thing happened. An inner calm took over where fear had previously resided. I knew if I didn’t make the attempt, I would never again travel anywhere.

Up to the time two years ago when my symptoms started interfering with my life, my husband and I traveled on a major trip and several weekend jaunts each year after our kids grew up and left the nest. Lately, even traveling to Home Depot would find me reading a book in the car while my husband shopped usually for things to adapt our house for a handicap person.

This recent trip marked a corner turned in my mental fight against this disease. It would no longer scare me enough to prevent me from having fun.

I found that highway rest stops along the way were all handicap accessible thanks to the Americans with Disabilities Act of 1990 (thanks Pres. Bush Sr.) The problems I faced were in private homes. Either the toilets were too low with no handrails to help myself down and up, or the wheelchair access prevented me from getting out of the rooms. Going in was OK. Leaving was when I needed someone to help back me out. The hotel bed had no side rail to help me in or out of it. I depended on my husband to help.

I suppose these indignities pale when I count the good fortune of seeing my family. These are the things to hold on to when mentally dealing with this illness. I just need more victories like this.