Traveling with Multiple Sclerosis: A Companion Who Never Sleeps
During the past week, I have been ‘traveling’ all over Washington, DC. I say traveling because just between you and me, I hardly leave the house for a full day at a time. Working from home has its advantages.
On Monday, I was in the HealthCentral office to help give feedback on some exciting new developments. Very soon, we will have a navigation system in place. You will be able to find posts organized by subject matter and separated by where you may be on your patient journey. (Then I went home to teach a normal schedule of lessons.)
Tuesday, I attended the fantabulous event - The Walking Gallery - featuring Regina Holliday and hosted by the Center for Total Health. Patient and health care stories were painted on jackets. Walkers (I was one) proudly wore their personal jackets. Many of us shared our stories, made new friends, and networked in ways that may help others in the future.
A documentary is being made about Regina and her advocacy, thus a number of film crews were there. One crew has already put together a short film regarding The Walking Gallery which you can view. (Don’t blink at 1:28 or you’ll miss my jacket in motion.) Keep an eye on the Discovery Channel for a future documentary.
At the Walking Gallery, I met with friends from the patient advocacy crowd, one who insisted that I return the following day to attend HealthCampDC which I did on Wednesday. Exciting to be in a room with such big thinkers and doers. However, it was during this day that my MS decided to keep tapping me on the shoulder.
In the morning the fire alarms went off and we all had to vacate the building out into the scorching hot, record high temps in DC. I was not prepared to do that. No where close was any ice or cooling jacket. But we didn’t have to stay outside too long, maybe 10-15 minutes. Then during lunch a group I wished to speak with decided to walk to Union Station (through the tunnels) to convene. A bit more walking than I had intended to undertake that day and my legs (or rather the MS) were complaining.
Near the end of the conference day, I had to excuse myself and come back home to teach my regular Wednesday lessons. Gotta tell ya, I was plum tuckered out. Yesterday, Thursday, I slept much of the day.
Today, I am headed to the airport for a quick trip to Chicago for a meeting which begins this evening and continues through the day tomorrow. I really don’t want to pack anything special for the MS, cause really I’d like for it to stay home, but I am preparing just in case the legs decide to drag and get weak. The cane is coming on this trip (as is the provigil to prevent excess fatigue).
Arriving back home late Saturday night, I plan to crash on Sunday indeed. Certainly need to do that because I must teach again on Monday, followed by two more days of travel. Tuesday I’m headed north to New York City and will be meeting up with my cousin (whom I haven’t seen probably since high school).
Then Wednesday, it’s meetings at the National MS Society office in NYC most of the day. At the last meeting I attended, I was the only one living with MS and my MS decided to stay home from that trip. This time there will be 2-3 persons in attendance living with MS. I wonder if multiple sclerosis will be in the room with us that day.
With MS as a constant companion, I view it as somewhat of a temper-tantrum-ed toddler. It just has to take center stage at just the most inopportune moments. So far this week, my ‘toddler’ has been well behaved out in public. I hope that it continues to be behaved during my future travels. (btw, I will be going on vacation later in June and early July. If you don’t see as much of me around the site, you’ll know why.)
When you travel, what do you pack to keep your MS occupied and in line? How do you prepare for the unexpected temper tantrum?